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OUR COMMUNITY => Support Groups & Connections => Topic started by: Nick_F on June 06, 2006, 06:35:43 AM

Title: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 06:35:43 AM
Come share stories, experiences, frustrations and concerns about your life caring for a loved one with a chronic illness.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 06:44:48 AM
I will place this here as a place holder in order that I will come back and flesh it out later when I have time.

I am currently caring for my mother, 76, who has COPD (degenerative lung disorder). Although I do this willingly, it is very difficult. It impacts with almost every aspect of my life, it can be very distressing for both of us and the situation will only get worse.

There may come a time, in the near future probably, where decisions will have to be made as to whether I care for her full time, thus give up my current life, or whether she goes somewhere that she can receive appropriate care without me.

Not sureif I want to think about any of that too much at the moment.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 06:51:55 AM
That`s a hard one nick and a realy tough decision you have to make in the near future.
how is the health care for the elderly in the UK and than escpecially for the chronic ill people?
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 06, 2006, 07:08:50 AM
maybe this is also a place for all the alzheimer grandmother stories we shared a while ago at the diner ? i pm'd bubblewrap since she takes care of her grandmother and i think she could sure use some backup and hugs.

i also have a grandmother with alzheimer, luckily right now, it is still at a stage where my grandfather and she can live alone. my mum helps them out once or twice a week and i do whenever i'm home (they live to far from vienna for me to drive there at a work day). it's sad. seeing how the person you love so much gradually changes. and nobody can do anything about it.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 07:09:41 AM
Well Conny, if the current level of care that my mother receives from the health authorities is anything to go by (when she is not in hospital) it probably won't be very good.  :(

However, i think that she is likely to end her days in hospital, where the level of care is reasonably good.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 07:11:43 AM
maybe this is also a place for all the alzheimer grandmother stories we shared a while ago at the diner ? i pm'd bubblewrap since she takes care of her grandmother and i think she could sure use some backup and hugs.

i also have a grandmother with alzheimer, luckily right now, it is still at a stage where my grandfather and she can live alone. my mum helps them out once or twice a week and i do whenever i'm home (they live to far from vienna for me to drive there at a work day). it's sad. seeing how the person you love so much gradually changes. and nobody can do anything about it.

That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 07:12:57 AM
i,btw,am glad that you made this thread,gives me a chance to rage every once and a while of my wrecked body  ;)

i`ve got multiple chronic deseases,none of them life treathening.
As long as i can remeber i`m habing a bad back,i made it stronger trough horse riding but later on with working with multiple disabled children it gor worse again and i developed a hernia.the first neurologist thought it wasn`t that bad and let me suffer with it for three years.at the end i couldn`t sit or hardly walk anymore.went to another neurolist and was operatied forst thing next week.just in time,cause the nerve was almost dead.That is almost 10 years ago,but the nerve did get some damage and my back will always be a soft spot and gives me pain every day.also i cant sit very long and have to rest during the day.

than i dont smell or taste anything,cause of some polips in my nose,have been operated on them,but they come back as quickly as they have been removed.so no cure for that.only prednhison which i take on special occasions,as for a vacation or special dinner.

three years ago  i developed chron`s desease,but is stabil now,if i keep myself on a sort of a diet,which i sorted out myself by accident.

i`ve got astma as well

and last but not least  ;) last year i got shingles and that didn` go away after treatment as ususally is the case so i now am having
post-herpetic neuralgia.that`s kind of a nervepain,and it comes of and on,.there are days that i feel hardly any pain,and as for last weeks i`m in pain all day. it`s also on my back,so double nerve pain there.

i dont know anymore how life is without pain.sometimes i see people do things and think wow must be great tp do all that on one day and not have any burden at the end of the day.

i do go out and have fun,and it`s not that i`m having a bad life.i am happy and love my life but i do have to be careful with how i fill in my days.
after a weekend out of town i`m tired for that next whole week,but that is worth it than.life`s too short and sometimes you gotta make choises!!
gonna try some acupuncture today,and hopefully it helps.
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 06, 2006, 07:17:49 AM
That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

that's really tough. in that respect, alzheimer is a merciful disease because at a certain stage, people don't realize any more what's happening. however, my grandmother is not there yet (fortunately or unfortunately ?). she suffers from depression because she realizes that her mental capeability decreases.

how does your mother take it ? she's not that old yet with 76. do your siblings help caring for her as well or are you on your own ?
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 07:20:18 AM


That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

this is so tragic,i can imagine how she must feel. it makes you so totally depend of others. that must be realy hard for her!!

i see it with my mom,she is 66 and having post-herpetic neuralgia as well(just like me) but in a very heavy way.she screams now and than from pain,has it all day and night and doenst come even out of the house anymore.due to medicines she took she now has eyeproblems and all other kinds and cant drive a car anymore or walk by herself!
from a independ woman,who would go on vacations alone and walk miles and miles in japan/new sealand and so on,she now is a wreck,sitting at home,doing nothing that sleeping and crying.
and she went trough everything but nobody can help her.although she`s gonna have an operation on her eyes in a few months now.
and they are speaking of again a new med against post-herpetic neuralgia.

i realy hopen i never am getting it in a way she`s got it.
she speaks a lot of killing her self,and i dont know how to react on that.
but when i am in pain and when i think of hers to be so much more than mine,than i sometimes can understand her.
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 06, 2006, 07:25:24 AM
conny, in an austrian saying i would say you yelled really loudly when god was distributing diseases  ;)

i'm so sorry for you, especially those stupid things that mostly cause pain and are not to come by. i'm having trouble imagining what it is like since i'm blessed with a very healthy body, but my mom has something similar with her shoulder. and there is just no hope that it will get better. sometimes i'm so angry at the whole health system cause i just think things like how can that be that you transplant hearts and re-attach lost limbs but you can't do something as simple as make this pain go away ?.

i admire you for your nice and friendly, positive personality with all those problems you have. and i can only wish, pray and hope that things will get better one day ! don't get tired of trying to find something that helps...
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 07:33:20 AM
thanks martina you realy made me laugh  ;D
and yess i have to stay positive otherwise i will get worse,so always keep the faith!
and i seek for natural ways of deeling with the pain and the deseceases and not the "normal" way.only if nessecary.
but when i look at my mom who took experimantal meds,that bruoght her more bad than good things! so i wont go that way for sure.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 07:37:41 AM
i,btw,am glad that you made this thread,gives me a chance to rage every once and a while of my wrecked body  ;)

i`ve got multiple chronic deseases,none of them life treathening.
As long as i can remeber i`m habing a bad back,i made it stronger trough horse riding but later on with working with multiple disabled children it gor worse again and i developed a hernia.the first neurologist thought it wasn`t that bad and let me suffer with it for three years.at the end i couldn`t sit or hardly walk anymore.went to another neurolist and was operatied forst thing next week.just in time,cause the nerve was almost dead.That is almost 10 years ago,but the nerve did get some damage and my back will always be a soft spot and gives me pain every day.also i cant sit very long and have to rest during the day.

than i dont smell or taste anything,cause of some polips in my nose,have been operated on them,but they come back as quickly as they have been removed.so no cure for that.only prednhison which i take on special occasions,as for a vacation or special dinner.

three years ago  i developed chron`s desease,but is stabil now,if i keep myself on a sort of a diet,which i sorted out myself by accident.

i`ve got astma as well

and last but not least  ;) last year i got shingles and that didn` go away after treatment as ususally is the case so i now am having
post-herpetic neuralgia.that`s kind of a nervepain,and it comes of and on,.there are days that i feel hardly any pain,and as for last weeks i`m in pain all day. it`s also on my back,so double nerve pain there.

i dont know anymore how life is without pain.sometimes i see people do things and think wow must be great tp do all that on one day and not have any burden at the end of the day.

i do go out and have fun,and it`s not that i`m having a bad life.i am happy and love my life but i do have to be careful with how i fill in my days.
after a weekend out of town i`m tired for that next whole week,but that is worth it than.life`s too short and sometimes you gotta make choises!!
gonna try some acupuncture today,and hopefully it helps.


Oh my Conny, you do have a lot on your plate. I have sympathy having had chronic back and bowel problems for over 20 years. Although I have to say that since having my tonsils removed in January, my bowel problems are almost gone..... And a good osteopath has almost eliminated my back pain, although mine has a different cause to yours.

hugs

Nick
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 07:39:08 AM
That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

that's really tough. in that respect, alzheimer is a merciful disease because at a certain stage, people don't realize any more what's happening. however, my grandmother is not there yet (fortunately or unfortunately ?). she suffers from depression because she realizes that her mental capeability decreases.

how does your mother take it ? she's not that old yet with 76. do your siblings help caring for her as well or are you on your own ?

I have  a sister who takes over when I need a break. The less said about my brother the better.

Mum handles it all quite well I suppose, but is very frustrated at being such a burden.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 07:41:01 AM


That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

this is so tragic,i can imagine how she must feel. it makes you so totally depend of others. that must be realy hard for her!!

i see it with my mom,she is 66 and having post-herpetic neuralgia as well(just like me) but in a very heavy way.she screams now and than from pain,has it all day and night and doenst come even out of the house anymore.due to medicines she took she now has eyeproblems and all other kinds and cant drive a car anymore or walk by herself!
from a independ woman,who would go on vacations alone and walk miles and miles in japan/new sealand and so on,she now is a wreck,sitting at home,doing nothing that sleeping and crying.
and she went trough everything but nobody can help her.although she`s gonna have an operation on her eyes in a few months now.
and they are speaking of again a new med against post-herpetic neuralgia.

i realy hopen i never am getting it in a way she`s got it.
she speaks a lot of killing her self,and i dont know how to react on that.
but when i am in pain and when i think of hers to be so much more than mine,than i sometimes can understand her.

Will your mother not take anti-depressants, she sounds as if she needs some assistance with her depression?
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 06, 2006, 07:42:48 AM

I have  a sister who takes over when I need a break. The less said about my brother the better.

Mum handles it all quite well I suppose, but is very frustrated at being such a burden.

at least you're not completely alone in that...i remember the story about your brother, no explanation needed  :(

it must be insanely frustrating to entirely rely on others...however, it happens to young people as well (after accidents,..). does she live with you ?
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 08:26:20 AM

I have  a sister who takes over when I need a break. The less said about my brother the better.

Mum handles it all quite well I suppose, but is very frustrated at being such a burden.

at least you're not completely along in that...i remember the story about your brother, no explanation needed  :(

it must be insanely frustrating to entirely rely on others...however, it happens to young people as well (after accidents,..). does she live with you ?

Yes we live together. Makes some things easier, somethings harder.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 06, 2006, 08:49:26 AM
My gosh......these threads are popping all over...my heart aches for all you guys dealing with all this....it really does. These are our crosses we bare sort of speak and it fucking sucks!!!  I respect all of you.

My mom suffers from back pain as well.She used to be able to do just about anything. When I was a teenager my mom was scrubbing the back stairs and fell down the flights. She has never been the same. Has had an operation for the herniated discs she had.....now the nerves are wrapped around them as they healed and being 70 years old,they don't recommend any more surgery. She has gone thru accu puncture and all sorts of meds...nothing works...now her depression is more noticeable. She always looked for my daily visits and would vent. Now that I moved further away and she no longer watches my kids,she is is worse shape sometimes...I see her aging more..I take her shopping all the time and it's an all day thing. Her legs give out on her and she refuses for me to get a wheel chair. Doesn't want people staring at her,she says... .my dad is showing signs of a mild dementia?  Not sure yet. He has gotten very religious and there are days it is unbearable. He argues all the time with mom .Makes it worse for her. Tells her, her pain is all in her head and is pretending just to piss him off.
That's why I don't own a gun...ha ha...I will either kill him or myself....oh God !!!

Her older sister is an invalid. Her husband takes care of her. He has also battled prostate cancer. My poor aunt has a form of dementia along with her Parkensens and other problems she has.My mom tries to visit once a week for support and all....this weekend we are all going to her house because she doesn't have much to live. Her daughter lives in Alabama and is coming in....in away I don't want to go. I have been avoiding her for months . Can't handle all this stuff. This week or two alone has been very stressful for me. I look at myself and wonder if I'll follow suit...but you can't think like that...

So Conny,you are so strong. I love you for that. I am so proud of you for bringing yourself to such a good mind-set.This is so important to think positive and live your life to the fullest. I notice when my mom talks to me and my sisters she lightens up and seem to have less pain. Makes her forget I guess.

Nikko, bless you for caring for your mom. It makes you a stronger person whether you want to believe it or not. God helps those who help others. You will be blessed ten-fold. Thinking about the future of our parents are always in my thoughts. Reading all these claims daily kill me. It reminds me when I least want to. But I guess it is also preparing me.So I will take it as that. It has made me a stronger person. My sisters don't talk about these things. They don't want to deal with the pain. I, on the other hand do. Guess it's the job.

HUGS to all of you...

Nellie  :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 06, 2006, 08:54:36 AM
reading those posts....one could get afraid of getting old... :(
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 06, 2006, 09:14:02 AM
reading those posts....one could get afraid of getting old... :(

Isn't that the truth?.....Sorry to hear about your grandmother hon. To see them become this different person is a real killer.

My good friend lost her mother to Alzheimer's. She developed it at 55 years of age...Her father took care of her to the very end,almost. He finally had to put her in the nursing home. Tried Home Health care but the nurses were stealing from him. (god,you can't win in this world)...he ended up dying before her . Being there for my friend was all I could do. My heart split in two for her.A few years earlier her 19 yr old son was killed in a car accident. When ever I feel down and sorry for myself,I think about my best friend.Talk about being strong?...this woman is a saint. During her dealings with all this she developed breast cancer...her luck has not been the luck of the Irish,I tell ya. She has been wondering if she will become like her mother,since this runs in the family. She is 52 years old and dreads that magic "55". Her 21 yr old son has bi-polar disorder.....SHIT...this is depressing....I will stop now..........

...........................................**pops 2 Prozac pills**................................just kidding...
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 09:59:59 AM


Will your mother not take anti-depressants, she sounds as if she needs some assistance with her depression?

she has those nick,cause they also work as a painkiller,but it doesn`t help enough.
i know she hasn`t got the guts to end her life,and mostly people who say it that often never do it,but it still is hard to hear her say that.
i dint think there`s a worse pain than nervepain and it totally puts your life down.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 10:10:06 AM
so sorry for your mom too nelly!!

and i realy think it`s best to stay as active as is possible.i`ve learnt to live my life around it. and not every day is a hard one,i have good days as well and mostly the summer is the best period. only now with the post herpetic thing i have to watch out and not be in the sun all days,cause too much sun takes your resistance down and that makes me sick again.
i`ve learned to live my life by the day and enjoy each day for the fullest.and i know i`ve got to do it now,cause maybe in 10 years i cant do it anymore. but that`s than and this is now and for now i`m doing fine and going to texas yiehaaa  ;)
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 06, 2006, 10:29:38 AM
going to texas yiehaaa ;)

WHEWWW WHEEEE....yeee hawwww...is RIGHT on sister !!!!!

(((HUGS)))

Nell
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 06, 2006, 10:32:58 AM
going to texas yiehaaa ;)

WHEWWW WHEEEE....yeee hawwww...is RIGHT on sister !!!!!

(((HUGS)))

Nell

 ;D    ;)   (((hugs)) back hon  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 06, 2006, 02:53:40 PM
Nikko, bless you for caring for your mom. It makes you a stronger person whether you want to believe it or not. God helps those who help others. You will be blessed ten-fold. Thinking about the future of our parents are always in my thoughts. Reading all these claims daily kill me. It reminds me when I least want to. But I guess it is also preparing me.So I will take it as that. It has made me a stronger person. My sisters don't talk about these things. They don't want to deal with the pain. I, on the other hand do. Guess it's the job.

HUGS to all of you...

Nellie  :-*

Hi Nellie,

You may remember the few things I've posted about caring for my mother, the tiny bit of assistance I provided for Dad...

Having a parent "suddenly" go from active to inactive, from enjoying life hanging tight to it, to the "sudden" fade to death is a very difficult situation to go through. It's life changing, literally... from thinking that you're young with many, many years ahead, to realizing that you, doubtlessly, will "go" just as "suddenly", or even much more suddenly, come an accident instead of disease... It's a true shock to the system, a mind opener... and makes one realize how we really must do what we can to make our life an act of living instead of just a ride.

I paid little attention to this until very recently. Knew it all along, avoided dealing with it... one of many things that our movie did for me...

Life is truly lived on the edge. Right here in this "flash" of instance, never experienced "yesterday", never experienced "tomorrow". It's beginning is never known, it's end is never realized.

Hang tight, babe, to what you can while you can... I'm thinking that it's not really possible to prepare for the death of a loved one, especially that of our parents...

Love and hugs to all who are going through these things...
Rob
Title: Re: Caring for others with chronic illnesses
Post by: brian on June 06, 2006, 03:28:16 PM
I am currently caring for my mother, 76, who has COPD (degenerative lung disorder). Although I do this willingly, it is very difficult. It impacts with almost every aspect of my life, it can be very distressing for both of us and the situation will only get worse.
I cannot believe this. I come to this thread and find someone with the same problem. My mother at 96 also has COPD but my sister(age 72)  is the prime carer. In order for my sister to be able to go out, I have to go down 3 days per week(80km) and relieve her. I am rushing now to go down. however the doctor warned us the pregnizone might cause problems with her bones and last night my sister told me Mum has a compression fracture in her back and is in great pain. I have to rush down there now so my sister can go to her doctor today. I will be back to discuss  with you Nick_F and read more of this thread.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 06, 2006, 03:42:50 PM
Good to see you here Brian.

Once I have recovered from my jetlag, i will flesh out my current situation some. I probably have a lot to say....

"Speak" with you later when we are both less harassed!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 06, 2006, 05:26:07 PM
Hi Nellie,

You may remember the few things I've posted about caring for my mother, the tiny bit of assistance I provided for Dad...

Having a parent "suddenly" go from active to inactive, from enjoying life hanging tight to it, to the "sudden" fade to death is a very difficult situation to go through. It's life changing, literally... from thinking that you're young with many, many years ahead, to realizing that you, doubtlessly, will "go" just as "suddenly", or even much more suddenly, come an accident instead of disease is a true shock to the system, a mind opener... and makes one realize how we really must do what we can to make our life an act of living instead of just a ride.

I paid little attention to this until very recently. Knew it all along, avoided dealing with it... one of many things that our movie did for me...

Life is truly lived on the edge. Right here in this "flash" of instance, never experienced "yesterday", never experienced "tomorrow". It's beginning is never known, it's end is never experienced.

Hang tight, babe, to what you can while you can... I'm thinking that it's not really possible to prepare for the death of a loved one, especially that of our parents...

Love and hugs to all who are going through these things...
Rob

Oh Rob....you have such a light way with words,can't describe it. Thank you for them. I am sorry to hear about your mom. I suppose this thing called "life" is something we all have to face.It sure sucks. The other day as I put my dog to sleep and watched him die in my arms,I actually wondered how we were all going to die. As peacefully as he?...I went home a wreck and later on my sister called. I told her how was I going to face mom or dad's death if I can't even handle my dog's? Tough question,but we can't cross that bridge like you said.

Yes, this movie opened up my eyes about things like this too Rob. glad it did though. It is making us better people and preparing ourselves for life's obstacles.

(((HUGS))) to you Rob

Nellie  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 06, 2006, 09:28:17 PM
Nellie,

You spoke of your dog...

Back in January of 1995 I took the precepts and "became" a Buddhist, "officially". That next month my landlords cat became very ill. I was taking care of her while her owner was doing the "snow bird" thing in Phoenix, Arizona.

When the cat, Bitzy, became so ill that there was no where else for me to turn, (I had taken her to the vet several times in an attempt to get her "well" without the landlords awareness), I called her owner. When I described the situation, which by that time had progressed into lack of consciousness and seizure-like activity, he told me in a point-blank heartless fashion to have her "put down". I loved that cuddly old cat who would climb into my robe for warmth, and to have her owner from 1500 miles away tell me without concern to "put her down", proved to me to be very sad. I found it very difficult to hide the tears and sobbing while on the phone with him.

Within an hour or so I was on my way to the vets office, a friend driving, me holding Bitzy in my arms, conforting her though I wasn't certain that she was aware of it... when it came time to walk into the little examination room I told the vet's assistant the reason for the return visit... she left and a few minutes later came back in with syringe in hand.

Bitzy did not move when the needle was placed in her little arm... I cried, hard, hot stinging tears as I watched her final movements, her final breath.

As I left the room bawling like a baby I came to some sudden very real, very profound realizations about this thing we call "life".

We are born alone... we die alone... in the moments between those events we are in search of someone... something... to help us feel more real, more alive than our fragile existance can ever provide to us otherwise. It's a very profound realization I experienced as Bitzy died in those few moments... all the while recalling just a couple weeks prior the first Buddhist Precept:

"Do not cause harm to another being."

May we all be well and happy,
Rob

(Panya)
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 07, 2006, 04:53:00 AM
Rob,you are so special. I don't even have words right now....I'm speechless for the first time.  :'( :'( :'(

I love ya

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 08, 2006, 12:10:55 PM
Days like today are such a wonderful respite for both Ma and me. She has had a good, sleep is not too breathless, has been able to sit in the garden, has had a friend over and is now tucking into a large plate full of food. I have a had a chance to lie in the sun for about  an hour and all is well.

I dread the time when these days no longer occur.  At least I have a chance to live and breathe on days like today.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 08, 2006, 12:57:32 PM
i`m happy for your mom and you that you got a good day.
i had one too and it makes you forget the pain and sorrow for a while,doesn`t it?
i hope she stays ok for at least some time!
Title: Re: Caring for others with chronic illnesses
Post by: brian on June 08, 2006, 01:01:24 PM
I am happy for you Nick. Unfortunately my Mum had her worst day ever yesterday. My sister has asked me to come down and help get her out of bed. She sounded dreadful (gasping for breath) on the phone last night. So I am writing this at 4.45am and will be on the 6am train. I am taking things in case I have to stay overnight. Please think of me I have hardly slept all night. I am in Australia so very different time zones
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 08, 2006, 01:13:22 PM
I am happy for you Nick. Unfortunately my Mum had her worst day ever yesterday. My sister has asked me to come down and help get her out of bed. She sounded dreadful (gasping for breath) on the phone last night. So I am writing this at 4.45am and will be on the 6am train. I am taking things in case I have to stay overnight. Please think of me I have hardly slept all night. I am in Australia so very different time zones

Brian... so sorry about Mom...

While my mother had cancer that eventually overtook her brain, my Dad had emphysema... combined with heart valve issues... too weak for the surgery to fix it.

In his final years and days he spent his time breathing oxygen through his concentrator with frequent treatments using a C-PAP machine to force air deeper into his lungs. Was on handfuls of drugs each day to help alleveate the pain, to help make breathing easier...

Mom, I'm thinking, wasn't aware of her final days while Dad was consciously aware of every moment.

I know it's very difficult what you're going through, Brian, wish I could add some comfort to your day... to help Mom relax.

Do know that there are many around here backing us who need it...

A gentle hug your way,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 08, 2006, 01:16:05 PM
Nicky,

Sounds like Mom had a great day... in the warm weather Dad would spend time on the patio visiting with us while the birds flitted in the bushes, and the chipmunks scurried underfoot...

My love to you and Mom, Nick,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 08, 2006, 01:23:02 PM
Brian,my thought are with you and your mom,take care!!
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 08, 2006, 05:03:10 PM
I am happy for you Nick. Unfortunately my Mum had her worst day ever yesterday. My sister has asked me to come down and help get her out of bed. She sounded dreadful (gasping for breath) on the phone last night. So I am writing this at 4.45am and will be on the 6am train. I am taking things in case I have to stay overnight. Please think of me I have hardly slept all night. I am in Australia so very different time zones

Hugs to you and Mum, Brian!

Nick
Title: Re: Caring for others with chronic illnesses
Post by: brian on June 09, 2006, 04:01:30 AM
Thanks for the thoughts and hugs. Have spent a long day with Mum. The physiotherapist came who specialises in lung disease. We will now use the wheelchair to take Mum from chair to bed each day, Also showed us how to ease our backs especially with lifting commode and even a simple thing like leaning across her to get a glass of water for her better to go round to that side.  I had a back operation 3 years ago so must be careful and while only a young 62  :) my sister is 10 years older. She spent last night on the couch but I made Mum promise she would ring my sister when she wants to get up during the night so she can sleep in her own bed ( next door unit - apartment). Mum was quite sick all morning perhaps from the morphine but slept most of the afternoon. A long day for me as it is 2 and a half hours in train each way. I drive on Sundays (hour and quarter) but petrol is so dear and being a senior I get cheap rail fare.
Thanks again
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on June 09, 2006, 04:27:38 AM
Thanks for the thoughts and hugs. Have spent a long day with Mum. The physiotherapist came who specialises in lung disease. We will now use the wheelchair to take Mum from chair to bed each day, Also showed us how to ease our backs especially with lifting commode and even a simple thing like leaning across her to get a glass of water for her better to go round to that side.  I had a back operation 3 years ago so must be careful and while only a young 62  :) my sister is 10 years older. She spent last night on the couch but I made Mum promise she would ring my sister when she wants to get up during the night so she can sleep in her own bed ( next door unit - apartment). Mum was quite sick all morning perhaps from the morphine but slept most of the afternoon. A long day for me as it is 2 and a half hours in train each way. I drive on Sundays (hour and quarter) but petrol is so dear and being a senior I get cheap rail fare.
Thanks again

Well friend it is clearly very tough for you at the moment. My thoughts are with you, as your current position is likely to be my future :(

My Mum, even when having a really bad time, will struggle to the toilet/commode and the exertion of doing that is very telling. So fortunately I have curerntly little lifting to do, although like you I have back problems and would find having to do that very difficult, should that time come.

As I live with Mum, and I have a full time job, it can be very difficult and stressful, keeping things ok for her and having any sort of a life of my own and keeping the house running and clean. But at least I do not have your travelling to contend with.

I hope the new day is better for all of you!!
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 09, 2006, 08:34:49 AM
Thanks for the thoughts and hugs. Have spent a long day with Mum. The physiotherapist came who specialises in lung disease. We will now use the wheelchair to take Mum from chair to bed each day, Also showed us how to ease our backs especially with lifting commode and even a simple thing like leaning across her to get a glass of water for her better to go round to that side.  I had a back operation 3 years ago so must be careful and while only a young 62  :) my sister is 10 years older. She spent last night on the couch but I made Mum promise she would ring my sister when she wants to get up during the night so she can sleep in her own bed ( next door unit - apartment). Mum was quite sick all morning perhaps from the morphine but slept most of the afternoon. A long day for me as it is 2 and a half hours in train each way. I drive on Sundays (hour and quarter) but petrol is so dear and being a senior I get cheap rail fare.
Thanks again

Brian,

I remember Dad having issues with Morphine, too. Nausea and loose stools. Wasn't very pleasant for him...

Dad also had several serious bouts of pneumonia (I guess any pneumonia while in his condition could be considered serious...) his last year or so. Only antibiotic strong enough to get rid of it was imported into the States via Sweden, I believe. Without insurance a dose would cost over $1000.00 according to my step mother...

Dad was 74 when he died, Mom 72. I'm currently 46. I expected the two of them to live much longer...
Title: Re: Caring for others with chronic illnesses
Post by: brian on June 09, 2006, 04:01:45 PM
Dad also had several serious bouts of pneumonia (I guess any pneumonia while in his condition could be considered serious...) his last year or so. Only antibiotic strong enough to get rid of it was imported into the States via Sweden, I believe. Without insurance a dose would cost over $1000.00 according to my step mother...
Dad was 74 when he died, Mom 72. I'm currently 46. I expected the two of them to live much longer...
Fortunately here in Australia, drugs are almost free for pensioners ($4.50 for first 50 scripts per year then free).  Even I have them go down to $4.50 after I have spent about $800 in the year (usually in mid-August).  I take 4 tablets every day for blood pressure, cholesterol and hiatus hernia. I have to wait another 3 years before I  get a senior's health card
My sister has rung to say Mum did ring for her at 3am so she was able to sleep in her own bed but she did have trouble getting her out of the chair and into her bed last night.
While I am grateful to have had Mum for so long (she is almost 97- Dad went at 66) it is terrible to watch her suffering with no meaningful life now. All we can do is cuddle her and show how much we love her and try to support her.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 09, 2006, 05:40:25 PM
You're very blessed that Mom's been there for you all these years, Brian, do cuddle and comfort her, she's blessed to have you and Sis. :)

Hang tight, bud,

a hug,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: Bubble Wrap on June 10, 2006, 09:55:26 AM
Heya all...I've known about this place for a while, but just posting now.  Still have not gathered all my storys together from the time I have spent caring for nan.  But still, I will eventually, and feel free to ask about it if you like, I don't mind!
Title: Re: Caring for others with chronic illnesses
Post by: flemishgirl on July 22, 2006, 10:28:01 AM
Heya all...I've known about this place for a while, but just posting now.  Still have not gathered all my storys together from the time I have spent caring for nan.  But still, I will eventually, and feel free to ask about it if you like, I don't mind!

I've just found out about this thread! There's something for everybody on this amazing site! I'm looking after a sick mother, wheelchair bound after two strokes. But this forum is just such a help. Not that, as I say, I've ever been on this bit of it before. But the rest ( I seem to live on Symbolism and Imagery in BBM mostly) is just such damn useful escapism, both intelligent and fun. Boy do we need that in our situation.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on July 29, 2006, 04:51:03 PM
Mother In hospital again - urgggh!

I know it isn't going to get any better, but a bit of respite would be nice!!!!

rant over
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on July 29, 2006, 05:12:03 PM
rant over

that was a short one   ;)

nick, i hope your mum will get better soon. of course, ultimately, she won't be completely good ever again. but some relief for her (and for you) would be wonderful. just to take a deep breath again.

Title: Re: Caring for others with chronic illnesses
Post by: conny on July 30, 2006, 02:19:35 AM
sorry to hear that nick,best wishes for your mom!!

mine is in the hospital as well,they think she`s got acute leukemia.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on July 30, 2006, 01:12:21 PM
Oh Conny and Nikko.....thinking of you guys and your moms...they're in my prayers...hang in there ,sweeties.

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on July 30, 2006, 02:49:31 PM
Oh Conny and Nikko.....thinking of you guys and your moms...they're in my prayers...hang in there ,sweeties.

Nellie

Conny and Nick, they're in my prayers, too.

Title: Re: Caring for others with chronic illnesses
Post by: brian on July 30, 2006, 04:32:58 PM
Mother In hospital again - urgggh!

I know it isn't going to get any better, but a bit of respite would be nice!!!!

rant over
Oh Nick, rant all you want to us here. I am thinking of you, Show your mother how much you love her and rant to us.  As you probably know, my mother's suffering is now over and the loss seemed to hit more last week (it is now just over 3 weeks ). My sister and I both had a cry over the phone yesterday. It is some comfort to know we were there for her right up to the end but we both miss her so much.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on July 31, 2006, 04:28:14 AM
Mother In hospital again - urgggh!

I know it isn't going to get any better, but a bit of respite would be nice!!!!

rant over
Oh Nick, rant all you want to us here. I am thinking of you, Show your mother how much you love her and rant to us.  As you probably know, my mother's suffering is now over and the loss seemed to hit more last week (it is now just over 3 weeks ). My sister and I both had a cry over the phone yesterday. It is some comfort to know we were there for her right up to the end but we both miss her so much.

Oh brian i did not know, I am sorry...  It sounds stupid, but I hope it was as good as it could have been!

Big hugs my friend

Nick
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on July 31, 2006, 04:28:49 AM
Fritz & Nellie

thank you!

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 31, 2006, 05:18:42 AM
Fritz,nelly thanks  :) realy apericiate it

Brian,so sorry to hear about your mom,take care!
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on July 31, 2006, 08:47:00 AM
Mother In hospital again - urgggh!

I know it isn't going to get any better, but a bit of respite would be nice!!!!

rant over
Oh Nick, rant all you want to us here. I am thinking of you, Show your mother how much you love her and rant to us.  As you probably know, my mother's suffering is now over and the loss seemed to hit more last week (it is now just over 3 weeks ). My sister and I both had a cry over the phone yesterday. It is some comfort to know we were there for her right up to the end but we both miss her so much.

Brian,

I haven't been reading this thread in quite a while. I do recall you writing about your mom a month or two back. I'm sorry to hear of her passing, know from personal experience how difficult it can be. My mother died two years ago next month, my father last January. Took me long time to deal with Mom's passing, not sure I've even really faced my father's death yet...

Warm hugs to you and your sister,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on July 31, 2006, 08:48:29 AM
Conny and Nick...

Warm thoughts coming your way concerning your mothers...

Hugs, too,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 31, 2006, 10:33:18 AM
thanks rob,hugs back  :)
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on August 01, 2006, 04:19:43 PM
Conny and Nick...

Warm thoughts coming your way concerning your mothers...

Hugs, too,
Rob

thanks darlin
Title: Re: Caring for others with chronic illnesses
Post by: brian on August 02, 2006, 04:45:25 AM
Thanks for your kind thoughts Rob, Connie & Nick.
I changed over to the "Those who mourn" thread and did not think to let those on this thread know that Mum's suffering was over. So many wonderful threads and so hard to keep up with them all. So many reasons to be thankful to BBM for bringing me to this community. I will continue to monitor this thread and my thoughts and prayers are with those who are still caring for loved ones.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 16, 2006, 01:26:03 PM
I believe in the power of collective hope and prayer so I'm hoping for a little help...

We found out last week that our 20 year old Godson (to the right of Joe) has a brain tumor.  He is truly one of the bright lights in our life and in the world; a peaceful and happy soul with compassion for every one and every thing.  Please send up a prayer for a good outcome; he will have surgery on Tuesday. 

(http://i56.photobucket.com/albums/g166/nopin/thomas.jpg)

Thank you all so much,
Lydia
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 16, 2006, 02:37:00 PM
oh lydia,how sad to hear this. i dont pray,but i will give him my deepest thoughts and get well wishes and will do my best to send some positive energy!!
a friend of mine is  suffering with braincancer now for 6 years,and than she`s free for a year and than it comes back again.
it`such a nasty desease!
take care,my thoughts are with all involved!
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on September 16, 2006, 02:43:03 PM
My thoughts are with you Lydia!

Sal   :-*   
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on September 16, 2006, 02:47:36 PM
Lydia, thanks so much for letting us know about your godson.....
I know that this is devistating to his family and to yours!'
Know that I am sending many hopeful thoughts and prayers your direction and toward him much more!
I/we will all be thinking of him on Tuesday!!!
Linda
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 16, 2006, 03:36:01 PM
oh lydia,how sad to hear this. i dont pray,but i will give him my deepest thoughts and get well wishes and will do my best to send some positive energy!!
a friend of mine is  suffering with braincancer now for 6 years,and than she`s free for a year and than it comes back again.
it`such a nasty desease!
take care,my thoughts are with all involved!

Prayer and postive energy both work in my book - thanks so much!  And I will do the same for your friend.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 16, 2006, 03:37:13 PM
Thanks Tigs & Auntie - much appreciated.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on September 16, 2006, 11:46:55 PM
Mother In hospital again - urgggh!

I know it isn't going to get any better, but a bit of respite would be nice!!!!

rant over

So very sorry, Nick. 

Catching up in this thread has made me realize how lucky I've been to have had a long break from the hospital scene.  But judging from recent changes, that vacation may be coming to an end.
Title: Re: Caring for others with chronic illnesses
Post by: brian on September 17, 2006, 02:29:06 PM
I believe in the power of collective hope and prayer so I'm hoping for a little help...

We found out last week that our 20 year old Godson (to the right of Joe) has a brain tumor.  He is truly one of the bright lights in our life and in the world; a peaceful and happy soul with compassion for every one and every thing.  Please send up a prayer for a good outcome; he will have surgery on Tuesday. 
Thank you all so much,
Lydia
I will also be sending prayers up from the other side of the world Lydia.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 17, 2006, 08:25:21 PM
I believe in the power of collective hope and prayer so I'm hoping for a little help...

We found out last week that our 20 year old Godson (to the right of Joe) has a brain tumor.  He is truly one of the bright lights in our life and in the world; a peaceful and happy soul with compassion for every one and every thing.  Please send up a prayer for a good outcome; he will have surgery on Tuesday. 
Thank you all so much,
Lydia
I will also be sending prayers up from the other side of the world Lydia.

Thank you so much Brian.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on September 18, 2006, 05:12:51 AM
Lydia honey,

My heart goes out to you and your family....lots of prayers coming his way. Please know we're here for you .He looks like a strong kid so don't you worry .

Hugs

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on September 18, 2006, 11:24:23 PM
Mother In hospital again - urgggh!

I know it isn't going to get any better, but a bit of respite would be nice!!!!

rant over

So very sorry, Nick. 

Catching up in this thread has made me realize how lucky I've been to have had a long break from the hospital scene.  But judging from recent changes, that vacation may be coming to an end.

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on September 18, 2006, 11:25:29 PM
Lydia, I don't pray but will be thinking of all of you (really, really hard!)
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 19, 2006, 09:07:43 PM
Not so well today... the tumor is cancer.  We just don't know how aggressive or if it is a grade 2 or 3, have to wait for the pathology report. 

So hard to see your baby that is now 6'1" and gorgeous both inside and out lying in a hospital bed and facing chemo and radiation... no words.

Thanks so much for all of your thoughts and prayers for Thomas.

Title: Re: Caring for others with chronic illnesses
Post by: Christina on September 19, 2006, 09:24:54 PM
Lydia, I will be thinking about you and Thomas over the next few days.  Many hugs and special thoughts are being sent your way tonight.  You are a thoughtful, generous person, and I look forward to giving you a hug in person very soon.
Title: Re: Caring for others with chronic illnesses
Post by: Thunder88 on September 19, 2006, 09:34:01 PM
Not so well today... the tumor is cancer.  We just don't know how aggressive or if it is a grade 2 or 3, have to wait for the pathology report. 

So hard to see your baby that is now 6'1" and gorgeous both inside and out lying in a hospital bed and facing chemo and radiation... no words.

Thanks so much for all of your thoughts and prayers for Thomas.


Hi friend,

I am saddened beyond words, I can't begin to tell you. I was so hoping for the best.

 Thomas will remain in my prayers as well his family and yours. If there is anything I can do for you, please do not hesitate to ask. You know my number.

Love,

Terry
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 20, 2006, 12:26:36 AM
i`m so sorry to hear this lydia.
i`ll keep sending positive energy!
take care
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on September 20, 2006, 05:18:02 AM
Not so well today... the tumor is cancer. We just don't know how aggressive or if it is a grade 2 or 3, have to wait for the pathology report.

So hard to see your baby that is now 6'1" and gorgeous both inside and out lying in a hospital bed and facing chemo and radiation... no words.

Thanks so much for all of your thoughts and prayers for Thomas.



Oh honey.....I'm so saddened to hear this. I will be keeping Thomas in my prayers and sending your family strength.

Hugs to you sweetheart,your strength will keep him strong.

Love ya,

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 23, 2006, 05:19:28 AM
I hope you all don't mind my rambling.  If this isn't the place, please let me know...

Today I am pretending.  The game is called Pre September 19th.  Maybe it's a prequel.  I'm getting good at the game.  I simply push the bad thoughts away that creep into the unguarded moments.  Sometimes the truth flutters like a bird at the window in love with his reflection; wings beating softly trying to embrace the untouchable.  Then suddenly a larger bird crashes head-long into the glass, leaving a smear of blood as it falls to the bushes below.  And then the window is obscured by beating rain and hail, pummeling with bits of ice and wind that cause the window to pulse.  All at once the glass explodes and a Molotov cocktail has been hurled into the room and there are flames licking hungrily at every fiber.  I stand melting in the center.  Hoping the flames consume me before the pain gets too bad.  And only a minute has passed.  And I have so many more minutes today.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on September 26, 2006, 12:25:24 PM
Just been told my father has lung cancer and a secondary tumor on the brain.  He's lost the power of speech which is infuriating for both him and us.  He knows the score but can't tell us anything he might want in what are his final days.

Not sure how long he's got so just preparing myself.  So much going on at the moment, but there's never a good time to say goodbye. Theres never enough time, never enough.
Title: Re: Caring for others with chronic illnesses
Post by: Ruby on September 26, 2006, 12:29:36 PM

Nax

I'm so sorry.  My lost my dad very suddenly, but I'm not sure anything can really prepare you for it anyway. 

Thinking of you. :-*

Title: Re: Caring for others with chronic illnesses
Post by: Nax on September 26, 2006, 12:32:19 PM
Thanx Clare, I know what to expect I lost my Mum just two years ago and it's still very raw, that was long and drawn out affair and I'm steeling myself this.  Your thoughts and sentiments are appreciated.

Neil
Title: Re: Caring for others with chronic illnesses
Post by: Boris on September 26, 2006, 12:37:45 PM
Oh, Neil. My thoughts are with you.

Biggest and warmest of hugs to you.
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on September 26, 2006, 12:48:19 PM
neil, i am so sorry for you. i don't know what to wish for - fast and painless or long but you'll have him longer....i just hope your last days together will be good. a BIG hug to you !
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on September 26, 2006, 12:49:46 PM
Just been told my father has lung cancer and a secondary tumor on the brain. He's lost the power of speech which is infuriating for both him and us. He knows the score but can't tell us anything he might want in what are his final days.

Not sure how long he's got so just preparing myself. So much going on at the moment, but there's never a good time to say goodbye. Theres never enough time, never enough.

I'm so sorry honey.....big hugs coming your way....hang in there,please....I'll be thinking of you.((((NEIL)))))

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 26, 2006, 02:11:16 PM
dear Neil,my thoughts are with you!! i know what youre going trough.my mom is diagnosed witha sever form of aplastic anemia,and it`s waiting for her too,when her body says it`s enough.
but i can imagine it must be so hard for him and the ones around him that he can`t speak anymore!!
the hardest thing to see i think is the struggle before they accept death is coming.
my mom keeps on hoping her new meds,will keep her longer here,or make her feel better,but until now it only gets worse and the hardest part is to have her crying on the phone and nothing you can do about it. and i cant go there either,cause everything is too much for her.

so if you need someone to talk,just pm  of email me honey,i`ll be here!! (((Hugs)))  :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 26, 2006, 05:34:36 PM
Nax and Conny, thinking about you both. 

It is so hard to see once strong people growing weak and weary.  My parents are both aging and suffering; one with strokes and the other alzheimers.  It is so hard to watch. 

I'm thinking about your families and hoping for the best, whatever that may be.
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 27, 2006, 12:10:03 AM
thanks whiplash,you and youre parents are in my thoughts as well.
Alzheimers is a tough desease as well,luckily the patient him or herself doesn`t have a clue,but it must be realy hard on the partner and kids! and also strokes are not the easiest things to cope with!
my mom always was a very strong woman,she walked a lot everywhere in the wordl,from Japan to new zealand,and now doesn`t come out of the house anymore,only to go to the hospital and that at age 68.
she still is strong kinda,cause she wont give in yet to her desease yet.

take care!
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on September 27, 2006, 12:29:34 AM
Just been told my father has lung cancer and a secondary tumor on the brain.  He's lost the power of speech which is infuriating for both him and us.  He knows the score but can't tell us anything he might want in what are his final days.

Not sure how long he's got so just preparing myself.  So much going on at the moment, but there's never a good time to say goodbye. Theres never enough time, never enough.
My thoughts are with you Neil,  Huge hugs to you!!

Sal  xxx
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 27, 2006, 05:29:29 AM
thanks whiplash,you and youre parents are in my thoughts as well.
Alzheimers is a tough desease as well,luckily the patient him or herself doesn`t have a clue,but it must be realy hard on the partner and kids! and also strokes are not the easiest things to cope with!
my mom always was a very strong woman,she walked a lot everywhere in the wordl,from Japan to new zealand,and now doesn`t come out of the house anymore,only to go to the hospital and that at age 68.
she still is strong kinda,cause she wont give in yet to her desease yet.

take care!

That's what is so hard.  You know everything she was and now you see the way they are and you start to wonder if you want to grow old.   :-\  My mom was always very strong, not afraid to voice her opinion, and loved to read.  Now she sits in a chair staring at the television.  Of course, part of that is the person that is caring for her, but...Ah!  What can you do...
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 27, 2006, 07:39:51 AM


That's what is so hard.  You know everything she was and now you see the way they are and you start to wonder if you want to grow old.   :-\  My mom was always very strong, not afraid to voice her opinion, and loved to read.  Now she sits in a chair staring at the television.  Of course, part of that is the person that is caring for her, but...Ah!  What can you do...

yes i know the feeling.i always say to my best friend,if i turn out that way when i`m old and cant do anything about it myself,i want you to do it.
i dint wanna live like that.
i`ve seen it with my grandma who got alzheimer and they put her away,cause she couldnt live on her own anymore,and luckily for her she was gone in about three weeks,the minute they moved her she became worse.
i walked the dog for an old lady,she was 93 and so still so good,but she broke her hip,they took away her dog,put her in an nurcery,with no proper help and attention,that was SO damn heartbraking to see her laying like that,i still get tears in my eyes when i think of her.she lyed there all day by herself and only the nurse came in to take care of the things that needed to be done and than gone again. i saw her fade away in a couple of weeks,so sad. the last time i saw her,i just said to her,you know what darling,her dog passed away a week before that.if you want to,you go,and you be with your dog again,with no pain and no lonelyness,and the nest day she was gone! i was so happy for her.

if i would be in my mo9ms situation right now,i would end my life,i would do some last things i wanted to do,see some people and than say goodbye.
But sometimes people cant speak for themselves anymore,and when nothing is documented about it,the only thing you can do is wait.
and hope your mom,is happy in her world right now,which most people with alzheimer are,as far as i know.
take care hon.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 27, 2006, 05:14:29 PM
Just can't help but think of the line, "They shoot horses, don't they."
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 27, 2006, 11:15:27 PM
Just can't help but think of the line, "They shoot horses, don't they."
yep,sigh.....only most people cant make that decission anymore and thats the sad thing.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on September 28, 2006, 02:22:56 AM
Thanks guys & gals, being able to share and knowing you support me is a great help. Not sure what the timescales are regarding Dad, days weeks or months.  I'm ok with it now I've got my head around it, but I know there will be difficult times ahead.  I just hope it's not going to drag out, last thing he wants and I want is someting slow and lingering.  All any of us can do is just get on with it.  The good times will outweigh the bad.

N.
Title: Re: Caring for others with chronic illnesses
Post by: annabel on September 29, 2006, 04:36:19 AM
Neil, I'm so sorry to hear about your dad.  My dad died of lung cancer also; hospice was a wonderful resource that brought us a lot of relief for the whole family.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on October 02, 2006, 11:42:15 PM
Warm, supportive thoughts for you, (((Neil))).
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on October 14, 2006, 10:46:00 PM
Nax, I'm so sorry about your father.

Thoughts and prayers are with you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: Adrian on October 14, 2006, 11:23:01 PM
Neil, I'm sorry to hear about your fathers illness, but please remember, your own self-care (emotionally, mentally and physically), and that of your family is just as important.  I don't know what stage your father has been diagnosed with carcinoma, or, if it is small cell lung ca or non-small cell lung ca, which, depending on the level, can provide a certain amount of hope and optimism.  It's important to remember that medical technology in this day and age is so advanced that "cancer" does not immediately carry the burden of "death" attached to it anymore.  If there's anything I can do for you, or, anything you'd like to know or I can find out for you, please don't hesitate to ask.  Peace and comfort be with you and your family.  A.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 19, 2006, 07:34:14 PM
Hey guys....

Just snooping around,haven't been in here in awhile....been feeling pretty bummed these past few days but try not to show it...trying to be strong for my mom...her older sister is in the hospital...has been going in and out for ages it seems...I've been praying that God would just take her already and take her pain away...she has Parkinsons and dementia now. Even though she's in her 70's and I know you can't live forever,it still hurts...I watch my mom carefully as she tells me how my aunt is. I see in my mom's eyes her pain and frustrations because she can't do anything about it...at times I wish we had doctor's that can put people to sleep like we do our animals...is that terrible to say?.....she's been sick for so long I'm just so tired of it.....I can't even go visit her...just can't....been praying really hard for God to just take her and now I feel really guilty...ugh

Just venting....pray for her to go in peace,will you?........thanks for listening

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 19, 2006, 07:57:26 PM
{{Big Hug Nellie}}

I'm thinking about you and praying for your family and your aunt.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 19, 2006, 08:01:05 PM
{{Big Hug Nellie}}

I'm thinking about you and praying for your family and your aunt.

Awww, thanks hon...I really appreciate it..

hugs back

Nell
Title: Re: Caring for others with chronic illnesses
Post by: Nax on October 20, 2006, 02:04:05 AM
Neil, I'm sorry to hear about your fathers illness, but please remember, your own self-care (emotionally, mentally and physically), and that of your family is just as important.  I don't know what stage your father has been diagnosed with carcinoma, or, if it is small cell lung ca or non-small cell lung ca, which, depending on the level, can provide a certain amount of hope and optimism.  It's important to remember that medical technology in this day and age is so advanced that "cancer" does not immediately carry the burden of "death" attached to it anymore.  If there's anything I can do for you, or, anything you'd like to know or I can find out for you, please don't hesitate to ask.  Peace and comfort be with you and your family.  A.

Thanks for kind thoughts Adrian, the cancer is terminal and he also has two secondary brain tumors as a result he has disphasia and can't speak.  He is at home (for now) and we are trying to keep everything as "normal" as possible even though all concerned know the score.  The Doctor has given him between 2-3 months.  I think at present the family is coping with this well, none of us are looking forward to the next few months.  I'd hoped it wouldn't be long and drawn out - it all depends on your view of time  :-\  I know this cancer is a result of his chain smoking, I lost my mother two years ago to heart disease again caused by smoking.  What's killing me is every time I see one of my friends light a cigarette I want to scream!  I can't stand them I've lost so much through them, I want to beg people not to smoke but it falls on deaf ears.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 20, 2006, 06:35:43 AM
(((((((((((((((((((Nildita)))))))))))))))))))  ((((((((((((((((((((((Neil)))))))))))))))))))))))))

Both of your are in my prayers, for your needs, your intentions and your health, as well as for your loved ones.

Title: Re: Caring for others with chronic illnesses
Post by: Adrian on October 20, 2006, 07:53:53 AM
Neil and Nellie,

My compassion goes out to both of you, as well as my shoulder.  If I can do anything for either of you, assist you in anyway, or, offer advice or some expertise on any questions/concerns you may have, please, do not hesitate.  Adrian.
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 20, 2006, 07:57:31 AM
((((HUGS)))) nells and Neil,it`s hard he see some one you love suffering so much and nothing you can do about it.

i see it with my mom,had her on the phone,crying last night,afraid of dying,and she refuses to wanna talk about it,keeps on thinking she will be alright again. she had a check up on her liver and results will be there next week.and gets a bloodtransfusion every week now.
i suggested a familyweekeind some time ago,and she said she couldn`t handle it,but she could handle a reception with 400 people  ::),so thats hurts. so i havent seen her in a while,but think i`m going over next saturday,right before i got to the UK,just to set my mind at peace.
Title: Re: Caring for others with chronic illnesses
Post by: Lola on October 20, 2006, 08:05:16 AM
I lost my mother two years ago to heart disease again caused by smoking.  What's killing me is every time I see one of my friends light a cigarette I want to scream!  I can't stand them I've lost so much through them, I want to beg people not to smoke but it falls on deaf ears.

I just stumbled on this post and I have to say my heart goes out to you.  I lost my Dad to the results of years of smoking and my Mom died of cancer, I am not sure that was not entirely due to my Dad's smoking.  I just recently had a BIL diagnosed with lung cancer, both lungs.  He has smoked his whole life.

It really has to end somewhere.  I am the same, I see someone light up and I just cringe.  Actually scratch that, I woud never let anyone light up a cigarette around me.

(((HUGS)))
Title: Re: Caring for others with chronic illnesses
Post by: Adrian on October 20, 2006, 08:20:19 AM
It is my opinon that cigarettes should be considered an illegal, and, dangerous substance.  There is nothing but truth in that.  Everybody is botox crazy now, to keep looking youthful - we diet like mad - no carbs, no fats, no nourishment - to keep ourselves thin beyond recognition - we workout like crazy because we just gotta have the Abercrombie Abs (that even the Abercrombie models don't really have - they thank Photo-shop for theirs!) - and yet - we still light up.  Something is just terribly wrong.  Oh, I know what it is, the tobacco companies make over 2 billion dollars a year.  That's it.  Rant is over.  Sorry bout' that.

My opinon - don't 'cringe' when somebody lights up.  Say something.  They're your lungs too!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 20, 2006, 11:15:56 AM
Conny....you're such a strong woman....your mom is so lucky to have you...bless your heart.

Thank you guys for your hugs and your thoughts....it means a lot to me

Nellie...................................................................................................**throws her cigarettes in the trash**

Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on October 20, 2006, 12:23:03 PM
Conny, Nellie & Neil - So sorry for what you're having to endure (been there, done it once already, which will be a possible post for another day) and now 5 years into a similar situation with my Mom).  It takes a toll on a person being on call 24/7.

Hugs and love to each of you.
Title: Re: Caring for others with chronic illnesses
Post by: annabel on October 20, 2006, 12:23:09 PM
Nellie, I'm so sorry for everything going on in your family.  There's really nothing else to say.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 20, 2006, 12:52:04 PM
Nellie, I'm so sorry for everything going on in your family. There's really nothing else to say.

Awww hon, what you just said is enough...thanks so much...just pray for my mom..she's the one I worry for...for if she goes I will die...I saw my mother-in-law go in pain due to her smoking and her drinking....*sigh*

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 20, 2006, 12:52:44 PM
Conny, Nellie & Neil - So sorry for what you're having to endure (been there, done it once already, which will be a possible post for another day) and now 5 years into a similar situation with my Mom).  It takes a toll on a person being on call 24/7.

Hugs and love to each of you.



(((((((((HUGS)))))))))))))

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 20, 2006, 01:39:20 PM
(((hugs)) for you too Glenn,i know about your mom,you take good care of her!!
Title: Re: Caring for others with chronic illnesses
Post by: brian on October 20, 2006, 03:35:11 PM
Hugs to each one of you with suffering loved ones. I totally agree with the thoughts on smoking. My dad went because of it and although the specialist did not agree I am sure the pulmonary fibrosis that killed my mother was a result of passive smoking. Had lunch with a gay ex-student yesterday. He told me his father has pulmonary fibrosis and has 6 months to live, His father is now 84 and gave up smoking at age 40. Not only is his father suffering but Rodney lives in Germany and is torn between staying here in Sydney with his father and seeing his business in Munich go to pieces. I am so angry when I see young people light up. I think smoking should only be allowed between consenting adults in private  :)
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 21, 2006, 01:26:20 AM
i have smoked on and off for almost 15 years,but one day i kept on having pain in my throat so much and then it hit me,did i wanna a chance on living for the next 20 years,or did i wanna die in a few,so i quit immideatly and never had any trouble with it ,and it`s 5 years ago now. i dont allow people to smoke in my house,and wont stay in houses where will be smoked.
for the rest it`s other people`s buissness,i cant tell them what to do or not,and they prabably wont listen anyway. i didnt when i still was a smoker,i knew it was bad,but i had to get that real warning befor i realy listened!
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 21, 2006, 04:11:50 PM
I'm torn about posting this here... Please let me know if it isn't appropriate. 

I have been consumed by such emotional pain that I have decided to try and rid myself of the harmful thoughts, by putting the pen to the page.  I have been keeping a journal on pen and paper and decided to put it on the computer.  Working through the lines and trying to make them readable to another person, I think, is helping me sort through the pain. 

Just thought I would share it here http://mydabda.livejournal.com/

Incidentally, the letters DABDA are for Elisabeth Kubler-Ross' five stages in the acceptance of death: denial, anger, bargaining, depression, acceptance.
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on October 22, 2006, 04:38:24 AM
I'm torn about posting this here... Please let me know if it isn't appropriate. 

I have been consumed by such emotional pain that I have decided to try and rid myself of the harmful thoughts, by putting the pen to the page.  I have been keeping a journal on pen and paper and decided to put it on the computer.  Working through the lines and trying to make them readable to another person, I think, is helping me sort through the pain. 

Just thought I would share it here http://mydabda.livejournal.com/

Incidentally, the letters DABDA are for Elisabeth Kubler-Ross' five stages in the acceptance of death: denial, anger, bargaining, depression, acceptance.

It's ok! Left you a note there honey!

N
xxx
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 23, 2006, 06:01:48 AM
Okay...this is very hard for me to write, right now.....spent the whole Sunday with family...hung out with my mom for a bit and it was hard. She told me my aunt almost died Saturday...her body rejected some blood they were giving her,guess she's bleeding internally now. My uncle is in denial that she is finally dying. For him ,he thinks it's like always...she goes in the hospital every couple of months,and soon enough she's back home...not this time. He won't tell his daughter who lives in Alabama,how serious things really are. She was here in July for her birthday. My mom took the strength to call her Sunday and told her everything. She's flying in as we speak....

I told you I've been praying and praying for God to take her...went to church this Sunday and begged him not to wait any longer...and then I turned to my left and saw my mother looking up to the altar as if she was praying for the same thing.....I wanted to cry...it was very hard for me to keep my composure....I can't see my mother in pain...but I know I must be strong for her.

What's making it harder for me is that I haven't seen her in quite some time...I haven't the strength and now that she is so worse off,it's even harder. But knowing how my mind works,I think I need to visit her in the hospital just for my uncle's sake..for my cousin's sake....or I will forever regret it and it will be eating at me....shit !!

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 23, 2006, 06:23:38 AM
nelly,it doens`t matter that you havent seen her in a long time.
if you wanna see her and have the chance,then go for it!!!!! dont hesistate,listen to your feelings,you know what to do!!
and dont wait till tomorrow if you can do it today!!

my best friends father died all of s sudden yesterday,when she was on her way back home from a visit with me,and she never has a chance to talk with him ever again!  :'(

take care hon(((NELLY)))
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on October 23, 2006, 07:34:40 AM
nellie, i think it's rather brave of you to pray for her to be relieved of pain and suffering....a big hug to you !
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 23, 2006, 08:21:53 AM
Nildita carisima, you are always in my prayers, especially now. I pray for your needs, your intentions, and your health.

Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on October 23, 2006, 09:37:29 AM
(((Nellie))) - thoughts and prayers are with you & your family.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 23, 2006, 05:35:46 PM
I have been struggling with prayer for a couple of years now.  I feel like I just don't know what to pray for.  Do I pray for the person to get better and then they have such a horrible quality of life; suffering every day?  I can't pray for that.  So then I pray that the person will go quickly so they don't linger in horrible pain and I realize that the person is happy to have one more day with their loved ones.  So then I pray that their best intentions are considered.  And then I think, what the heck am I doing?  Driving myself crazy!!!

Nell - it is so hard to pray and hope for the welfare of another.  My thoughts are with you and your family and I hope the journey is soft on your hearts and light on your shoulders.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 23, 2006, 05:43:21 PM
I have been struggling with prayer for a couple of years now.  I feel like I just don't know what to pray for.  Do I pray for the person to get better and then they have such a horrible quality of life; suffering every day?  I can't pray for that.  So then I pray that the person will go quickly so they don't linger in horrible pain and I realize that the person is happy to have one more day with their loved ones.  So then I pray that their best intentions are considered.  And then I think, what the heck am I doing?  Driving myself crazy!!!

Nell - it is so hard to pray and hope for the welfare of another.  My thoughts are with you and your family and I hope the journey is soft on your hearts and light on your shoulders.

It seems to me that the only thing you can pray for in such a case is to pray that whatever is for the best and whatever is right may happen, even though you cannot possibly know what is for the best and what is right. Your prayers will speed and aid what is for the best and what is right to happen, and they will also help you to understand what is for the best and what is right.

You are also in my prayers, whiplash.


Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 23, 2006, 06:12:23 PM
I have been struggling with prayer for a couple of years now. I feel like I just don't know what to pray for. Do I pray for the person to get better and then they have such a horrible quality of life; suffering every day? I can't pray for that. So then I pray that the person will go quickly so they don't linger in horrible pain and I realize that the person is happy to have one more day with their loved ones. So then I pray that their best intentions are considered. And then I think, what the heck am I doing? Driving myself crazy!!!

Nell - it is so hard to pray and hope for the welfare of another. My thoughts are with you and your family and I hope the journey is soft on your hearts and light on your shoulders.

Well, I always look at things this way. If what they have is something terminal,but their quality in life is still rather well spent...I pray for their strength,for them to keep their courage,to enjoy their life to the fullest. But when they are already incoherent and laying there,whether in pain or not...why?...why have them continue the suffering  and the suffering of their families and friends? If what they have is not terminal,I pray for their healing,to take the pain away...I pray that their families continue to support them and to offer them strength...to think positive and allow them to endure the medical procedures...a little bit of pain for a lot of cure goes a long way.

I don't know, at times I'm lost for words and just ask God to do what he thinks is best for that person and their family.Sometimes it's also the quality in life of that particular person who is caring for the sick that needs the praying the most.

My uncle who was caring for my aunt until she went into that hospital,is recovering from prostate cancer..he's in his late 70's. My aunt was an invalid for a year or so. He cared for her,bathed her ,fed her,he was her 24 hour nurse. He tried asking for help and it didn't work out.She didn't feel secure,was always afraid.In the end she was so swollen and too heavy for him to lift her anymore so he had to call the ambulance to pick her up every time she needed to visit the doctor...at night she would scream in pain or would start to hallucinate...so he never was able to have a good nights sleep for years. He'd run in and out of the store so fast because he was afraid to leave her alone for too long...he'd ignore his own medical care ..so you see...at this point..why?....so I'd ask God to take her already...she's ready to go and I pray that my uncle has a few more good years of quality life yet in him...he's such a good man...I have many many good memories of both he and my aunt. They were both so good to us kids.....*sigh*

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: Nax on October 26, 2006, 04:22:58 AM
Just had a call to say my father has been taken into a hospice as he is now begining to feel pain.  It can't be long now. Waiting for a further call, don't think I'll be in the forum after today for a few days.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 26, 2006, 05:10:20 AM
Just had a call to say my father has been taken into a hospice as he is now begining to feel pain.  It can't be long now. Waiting for a further call, don't think I'll be in the forum after today for a few days.

Shit hon....I'm so sorry....I pay claims like these every day.....it won't take long,no.....*sigh*

I'm hugging you tightly,sweetheart....my prayers are with you and your family.

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on October 26, 2006, 06:54:59 AM
Just had a call to say my father has been taken into a hospice as he is now begining to feel pain.  It can't be long now. Waiting for a further call, don't think I'll be in the forum after today for a few days.

neil, a big hug to you on your way. take care.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 26, 2006, 07:58:31 AM
Neil, I pray for as painless a passing as possible for your father, and for strength for you.

Title: Re: Caring for others with chronic illnesses
Post by: Nax on October 26, 2006, 08:21:37 AM
Thanks to all of you, bit of a scare earlier today, Dad is now in the hospice and they are doing an assemment over the weekend.  There are no definite "timescales" here other than less than a month.  My sister deserves a medal, I really don't know how she does it in terms of organising herslef, her family (single parent) and Dad too! Time to take a deepr breath and get on with it.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on October 26, 2006, 01:19:30 PM
Neil - Continued prayers for your Dad, you, your sister and all your family.  (((Neil)))
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 26, 2006, 01:23:34 PM
neil you`re in my thoughts sweety
take care!!
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 26, 2006, 10:02:50 PM
Just had a call to say my father has been taken into a hospice as he is now begining to feel pain.  It can't be long now. Waiting for a further call, don't think I'll be in the forum after today for a few days.

Thinking about you and your father Nax and hoping your desires and wishes will be answered.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 28, 2006, 11:02:54 AM
I spoke with my aunt today. She left a couple of messages. I had not talked to her yet; I just didn’t have the energy for the sorrow brought on by repeating the details of the past month.

She offered her hopes and prayers. Her very specific prayers. She explained, more than once as is her way, that you must pray to God and ask him to heal Thomas – but! Specifically, “in the name of Jesus Christ.” You must say these words and your prayers will be answered.

Well, damn. That’s what I was missing. Those six words.

She went on to quote some study where a group of people prayed for the patients in a particular section of a hospital. The patients in that wing reportedly had greater healing than patients in sections that were not involved in the group prayer efforts.

I can’t help but get a picture of Clarence and George in “It’s a Wonderful Life.” The far off pulsing galaxy and the voice saying, “Looks like we’ll have to send someone down. A lot of people asking for help for a man named George Bailey.”

Of course, I’m a sucker for a fairy tale. I gorged myself on them as a child and adolescent. So I want to believe that life and the afterlife are like the depiction in the movie: clouds, pudgy down-to-earth angels, answered prayers, a wonderful life.

But to believe the fairy tale I also have to consider the flip side; the pragmatic part of me wont have it any other way. And then I hear Clarence saying, “Strange isn’t it. Each man’s life touches so many other lives. When he isn’t around he leaves an awful hole doesn’t he?”
Title: Re: Caring for others with chronic illnesses
Post by: annabel on October 29, 2006, 04:22:43 AM
I don't come here nearly often enough, but my thoughts go out to all of you who are going through your sad times.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 29, 2006, 03:56:46 PM
Got home awhile ago from visiting my aunt at the hospital/rehab....My uncle was there of course and was so surprised to see me. It's been a few years since the last time we saw each other. My aunt,man, it was so hard to look at her. She was so swollen,has a tracheotomy ,so she can't talk...but as soon as she saw me she tried to smile. I asked her if she recognized me and she nodded yes...I'm so happy that I was able to get the nerve and visit her. When we left I was the last one to say goodbye,my parents were there and my other aunt and uncle were too. I went up to her real close and told her I loved her. She grabbed my hand and tried to smile. From there on I lost it...shit..She didn't see me though,I made sure of it . We all walked to the cafeteria and had coffee together. He was very happy to see me and we chatted for awhile about the kids and what not. When I said my goodbyes I gave him a hugh hug and told him to take care of himself...I'm so glad I went and feel so good right now....sad,but feeling good.

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 29, 2006, 03:58:43 PM
Thank you, Nellie, for letting us know.

Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on October 29, 2006, 05:02:38 PM
I'm glad it went well, Nellie.  ((((Nellie))))
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on October 30, 2006, 12:15:19 AM
{{{{{Nellie}}}}}

Sal     ;D
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 30, 2006, 12:20:47 AM
(((Nellie))) hon,so good to hear this,although it was hard to do and see,it must make you feel better and i`m sure it meant a  lot to your aunt!!
Title: Re: Caring for others with chronic illnesses
Post by: Nax on November 01, 2006, 02:01:19 AM
I just had to share this with you.  My partner, K went to sit with Dad yesterday.  He’s in a Marie Curie Hospice and it is a really wonderful place (I am so glad he is there) although it’s 40 miles away from us the care is exceptional. Sitting just chatting to him; it’s a one way conversation as he has lost the power of speech, Dad wanted to hold K’s hand, Dad was indicating the left hand (again this is difficult for him as he has also lost the use of his right arm).  Holding K’s left hand he felt for and found K’s wedding ring, the ring I placed on his finger last year at our civil partnership ceremony where Dad was present.  Dad had to be persuaded to come to our ceremony, it was held on the day which would have been my Mothers birthday; we lost her the year before.  Dad has never questioned my relationship with K (we’ve been together almost 25 years) and I always knew it had my mothers blessing but was never sure of what he thought.  On the actual day he never said much – he’s always been a man of few words.

Dad pointed to the ring and gave K the thumbs up sign!  Friends, I have to tell you when K told me this I cried, tears of joy and sadness mixed.  A great piece of the jigsaw of my life just fell into place.

Dad’s very ill and declining slowly we are taking it in turns between my sister, K and myself to go sit with him so I’m off there this afternoon knowing more about his feelings than I have done for the last 25 years.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on November 01, 2006, 02:12:28 AM
Sunshine through clouds, ((((Neil and K))))
Title: Re: Caring for others with chronic illnesses
Post by: Nick_F on November 01, 2006, 02:12:49 AM
I just had to share this with you.  My partner, K went to sit with Dad yesterday.  He’s in a Marie Curie Hospice and it is a really wonderful place (I am so glad he is there) although it’s 40 miles away from us the care is exceptional. Sitting just chatting to him; it’s a one way conversation as he has lost the power of speech, Dad wanted to hold K’s hand, Dad was indicating the left hand (again this is difficult for him as he has also lost the use of his right arm).  Holding K’s left hand he felt for and found K’s wedding ring, the ring I placed on his finger last year at our civil partnership ceremony where Dad was present.  Dad had to be persuaded to come to our ceremony, it was held on the day which would have been my Mothers birthday; we lost her the year before.  Dad has never questioned my relationship with K (we’ve been together almost 25 years) and I always knew it had my mothers blessing but was never sure of what he thought.  On the actual day he never said much – he’s always been a man of few words.

Dad pointed to the ring and gave K the thumbs up sign!  Friends, I have to tell you when K told me this I cried, tears of joy and sadness mixed.  A great piece of the jigsaw of my life just fell into place.

Dad’s very ill and declining slowly we are taking it in turns between my sister, K and myself to go sit with him so I’m off there this afternoon knowing more about his feelings than I have done for the last 25 years.


Neil, although my situation, currently, is not as dire as your own, I know your feelings well. Having Rob here with my Mum, which 10 months ago I never dreamed possible, has set all sorts of emotions tumbling around inside me, and all different pieces of my "jigsaw" are settling into place too. It is all happening too quickly for me to really comprehend on a conscious level, so I guess I will wait for the understanding to come.

You need a hug, mate. Sorry that I can't be there to give it to you!

N
xxx
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on November 01, 2006, 02:51:35 AM
neil, that is so wonderful. i'm happy for you and k ! it seems your dad really loves and accepts you and now tries to show it.  :)
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 01, 2006, 04:47:47 AM
Neil, I'm jumping for joy for you !!  How wonderful. I'm glad you're coming in peace with it all and has brought you closer to your dad. I'm very happy for K as well,this is all so very important for him too.

Hugs to you friend,

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: annabel on November 01, 2006, 04:50:14 AM
Neil, that was so lovely, it made me misty.  And not that what's happening is good by any stretch, but at least you're getting to be with him at this time.  You will always cherish that.
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 01, 2006, 04:53:07 AM
(((big hugs))) for you and K neil and what great person your dad is!
take care sweety
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on November 01, 2006, 08:42:39 AM
Neil and K, how wonderful for you. It's so great to have a dad's approval, not necessary but it adds so much when it happens. I did not have mine's. It's good that both of you can share his last days together, it gives all three of you peace and reconciliation.

Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 01, 2006, 05:01:06 PM
Neil, I'm stunned at the beauty of your post.  It's funny how love can find a way to us at the darkest time; what a beautiful moment.  I am so glad your dad was able to share it with you. 
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on November 01, 2006, 07:02:56 PM
Neil, thanks for sharing that story
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on November 01, 2006, 08:39:32 PM
Neil, what an absolutely wonderful gift your Dad has given to you and to K as his life winds down. It is such a beautiful thing to hear about that he was willing and able and loves you and K to communicate this to you both. I know that you have been blessed in your life with K and this just adds to that. It is wonderful that another "peace" of life's jigsaw has fallen into place for you and how, no matter how or when, the puzzle of your life continues to become complete.

Thanks so much for sharing this act of love.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on November 01, 2006, 10:02:44 PM
On the actual day he never said much – he’s always been a man of few words.

Dad pointed to the ring and gave K the thumbs up sign!  Friends, I have to tell you when K told me this I cried, tears of joy and sadness mixed.  A great piece of the jigsaw of my life just fell into place.

Dad’s very ill and declining slowly we are taking it in turns between my sister, K and myself to go sit with him so I’m off there this afternoon knowing more about his feelings than I have done for the last 25 years.


I'm overwhelmed by your story. I felt my tears rise when I read it. Peace and love to all 3 of you.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 09, 2006, 05:50:18 AM
Well, not soon after we received word that my aunt was doing terrible did we get news that our family friend of 30+ years is also in the hospital...the stress my mother is going thru is really worrying me. She was able to see her for the last time Sunday. Last night we were told they took alot of her tubing out and are just waiting for the final breath.  I'm sure tonight I will get the news.

To make matters worse for me I wanted it to be my aunt instead...I started to feel really guilty feeling like this and as my mom was telling me this about our friend I think she was thinking the same thing....*sigh*....soon, very soon, she'll rest in peace...the only problem now is...after Christmas or sooner....God,the mind playing is just terrible... 
Title: Re: Caring for others with chronic illnesses
Post by: Nax on November 09, 2006, 07:05:15 AM
Well, not soon after we received word that my aunt was doing terrible did we get news that our family friend of 30+ years is also in the hospital...the stress my mother is going thru is really worrying me. She was able to see her for the last time Sunday. Last night we were told they took alot of her tubing out and are just waiting for the final breath.  I'm sure tonight I will get the news.

To make matters worse for me I wanted it to be my aunt instead...I started to feel really guilty feeling like this and as my mom was telling me this about our friend I think she was thinking the same thing....*sigh*....soon, very soon, she'll rest in peace...the only problem now is...after Christmas or sooner....God,the mind playing is just terrible... 
Thinking of you Nellie, peace will come, part of the problem is wanting it to come and the other part is knowing it's coming.  Lets make a pact to light a candle at Christmas to acknowledge those who we value and love and still value and still love, living or not, as a sign of peace.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on November 09, 2006, 07:39:08 AM
Thinking of you Nellie, peace will come, part of the problem is wanting it to come and the other part is knowing it's coming.  Lets make a pact to light a candle at Christmas to acknowledge those who we value and love and still value and still love, living or not, as a sign of peace.  :-*

That is a very good idea Neil, to light the candle, be it one in our home, in a church, or just in our hearts. This is a difficult place for me to come this time of year as this is the second anniversary of the days of my husband's final journey.

I know this probably does not fit here, but my advice to both you and Nellie, is to take each day as it presents itself to you. Despite what you may think and despite the pain or discomfort your loved ones are going through, each day is a gift to you and your family. It may not look that way now, and you may be bowed down with sorrow, but know that when the time is right for your loved one it will happen and when they are ready for it. When I finally spoke the words and told my husband is was alright for him to go did he finally let go. Each illness is different, I know, but when the time is right, your loved one will know and you will rejoice with them.

Nellie, please do not feel guilty about not having enough time for both. It is important to remember the life that goes on, your family and YOU. Take the time that you can, but remember the living. We always try to be all we can for out loved ones, that is our nature,  and never much pay attention to ourselves....that is so important for our own mental well being. Be there as much as you can for the loved ones who are suffering along with the family of the ill one, but remember yourself as well, for you are the most important to your own family and many others.

Neil, know that I am thinking of you and know that you are doing the best thing for you and K and your sister. My love to your dad and all of you.

Linda
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 11, 2006, 09:03:16 AM
Well folks, just got a call right now. Sister told me our family friend of 30+ years passed away this early am.....all three of her daughters sat at the bedside last night,told her not to worry and go in peace. Told her they were going to take care of their dad and thanked her for raising 3 stuburn girls....well,she sure was listening to her girls,cause she went in peace......*sigh*...........as I'm writing this,I'm listening to the instrumentals from Brokeback....how appropriate for me to get this news as I'm sitting here listening to all this,really sets the mood....oh,and speaking of perfect timing...the next song playing now is..."Can't Cry Hard Enough", by the Williams Brothers........
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 11, 2006, 09:19:58 AM
(((Hugs))) for you and your family nelly
take care.
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 11, 2006, 09:26:05 AM
got some good news yesterday.
my friend with the tumor in the head had surgery again,and they were able to get the whole damn thing out.this was the second time,so hopefully she`s out of the woods now for a while.she still needs chemo and isn`t there yet,but better then a few weeks ago. cause then the tumor wasn`t on a good spot were they could operate on it.must have been no coinsedence,but after the george michael gig,when she went home,she felt sort of an explosion in her head,followed by heavy headache and the scan the next morning showed the tumor had moved to a place where to could operate on!!

My mom is getting worse,she sleeps a lot,gets transfusions every week,has some meds,but don`t think they will help her.
haven`t seen her in a while,cause she didn`t want too,but if everything goes right,will see her next weekend,if she wants me or not i`ll be there!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 11, 2006, 09:51:14 AM
got some good news yesterday.
my friend with the tumor in the head had surgery again,and they were able to get the whole damn thing out.this was the second time,so hopefully she`s out of the woods now for a while.she still needs chemo and isn`t there yet,but better then a few weeks ago. cause then the tumor wasn`t on a good spot were they could operate on it.must have been no coinsedence,but after the george michael gig,when she went home,she felt sort of an explosion in her head,followed by heavy headache and the scan the next morning showed the tumor had moved to a place where to could operate on!!

My mom is getting worse,she sleeps a lot,gets transfusions every week,has some meds,but don`t think they will help her.
haven`t seen her in a while,cause she didn`t want too,but if everything goes right,will see her next weekend,if she wants me or not i`ll be there!

What great news for your friend Conny...it took a concert to move that tumor huh...awesome!!....I'm very happy

You visit you mom hon....saying my prayers for her and your friend...keep strong

Love you,

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on November 11, 2006, 10:56:22 PM
Deepest sympathy, prayers and tight hugs to you, Nellie.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 12, 2006, 07:48:08 AM
I'm thinking about you Nellie. 

It is a blessing to go in peace surrounded by the people you love.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 12, 2006, 07:50:15 AM
Deepest sympathy, prayers and tight hugs to you, Nellie.

Thanks hon...going to the wake tomorrow...hate those things....just HATE going.....*sigh*...the only thing keeping me sane is the fact that she was older and was in pain,now she's at peace...so...that's a big relief...it's watching her daughters reactions and their poor father who I know will soon follow...he's a wreck....I'll pass those tight hug given to me and pass it to them,Glenn....thank you

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 12, 2006, 07:52:03 AM
....and thank you Conny and Whiplash.....you guys are great...

Hugs

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 12, 2006, 07:53:07 AM
got some good news yesterday.
my friend with the tumor in the head had surgery again,and they were able to get the whole damn thing out.this was the second time,so hopefully she`s out of the woods now for a while.she still needs chemo and isn`t there yet,but better then a few weeks ago. cause then the tumor wasn`t on a good spot were they could operate on it.must have been no coinsedence,but after the george michael gig,when she went home,she felt sort of an explosion in her head,followed by heavy headache and the scan the next morning showed the tumor had moved to a place where to could operate on!!

My mom is getting worse,she sleeps a lot,gets transfusions every week,has some meds,but don`t think they will help her.
haven`t seen her in a while,cause she didn`t want too,but if everything goes right,will see her next weekend,if she wants me or not i`ll be there!

Conny, so sorry to hear your mom is getting worse.

I would be interested to know what type of brain tumor your friend has.  My godson is on his fourth week of radiation and chemo for glioblastoma.  He started losing hair this weekend and is upset by this - who wouldn't be.  If he had any notions of denial, this will certainly quash those.  I dread seeing him next weekend and don't know how I will possibly be able to hold it together seeing him like that.  Ah shit, I'm crying just at the thought, damn!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 12, 2006, 07:58:24 AM
I would be interested to know what type of brain tumor your friend has. My godson is on his fourth week of radiation and chemo for glioblastoma. He started losing hair this weekend and is upset by this - who wouldn't be. If he had any notions of denial, this will certainly quash those. I dread seeing him next weekend and don't know how I will possibly be able to hold it together seeing him like that. Ah shit, I'm crying just at the thought, damn!

Whiplash,

Thats the worst fucken thing to see a child go thru this...I'm so sorry...you hang in there...hug him,cry with him,tell him his hair will grow back stronger,tell him it will shine like the sun....hold him tight and keep that faith that he is going to make it...I will say a prayer for him,I'm on my way to church right now...but will continue to keep him in my prayers and for all of us in here that needs it,including myself....praying for the strength we need to get thru the days ahead....

Big hugs

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 12, 2006, 08:03:18 AM
Thanks Nellie, appreciate the prayers.

You know what I am struggling with the most right now - is it okay to cry in front of him?  I haven't cried in front of him at all.  I am putting on the strong and happy face and telling him we need to be positive and strong to beat this thing (leaving out that a major miracle would certainly help too).  I don't know if this is right or wrong.  :-\
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 12, 2006, 08:10:01 AM
Thanks Nellie, appreciate the prayers.

You know what I am struggling with the most right now - is it okay to cry in front of him? I haven't cried in front of him at all. I am putting on the strong and happy face and telling him we need to be positive and strong to beat this thing (leaving out that a major miracle would certainly help too). I don't know if this is right or wrong. :-\

Since he is older and all ,he's no dummy. How are his parents?...does his mom cry often in front of him?....has he?.....I think he needs to see you cry at least once...but you also want to say to him that you just needed to get it out...and that you have good possitive vibes that it's all going to be okay...from there on you can cry in private...kids react by watching everyone's else's reaction,if he hasn't cried either,that's not good at all ......*sigh*

Damn,that's hard
Title: Re: Caring for others with chronic illnesses
Post by: All4one on November 12, 2006, 08:56:51 AM
Whiplash, you've expressed so much love and concern for this lovely young man, your question about tears is heartbreaking to me, as I know it was one you never would have wanted to ask in relation to him. You have been honored once to be the godparent of the child, now you are honored by the chance to share this journey with the young man ( and those others who also love him and hurt to see him suffer at all ).

Tears are not easy to control, but I think you can try. Deep inside, he wants to live, and if or when it becomes time for him to feel he will not, he may need to talk about it. He will then look for a safe 'place' to share his feelings, and that safe place may be you.

He may have some anger - rage - at what has happened to his body, and have some serious grief-work to do about the present and future losses. Fear - how could he avoid it? - might be even harder for those who love him best to take.

But- you all have the gift of time now. And you know him.
Would he want to laugh? Watch comedy movies with him. Does he want to read? Find  his favorite books and magazines. Read to him if he can't read to himself- or doesn't want to. What does he like to wear? (What are the others his age wearing? ) Get him clothes, shoes.  Music - that's a given, isn't it? Do you know his heart's desire? Sell the house and get it for him. But odds are that he doesn't want things...

Where are his friends? Are they there with him? Or are they hesitant to visit because they don't know what to say?  Encourage them.

Make sure he is never alone - unless he wants to be, then give him space but be available.

It seems you will be at both ends of the spectrum - some of his needs intensely practical, some intensely emotional/spiritual. Different ones on different days ( sometimes at different hours of the same day)...

Everyone wants to cry 'unfair' at this situation. How could you not cry? I want to cry over it, too.
Work is a gift. We dry our tears and roll up our sleeves...


Title: Re: Caring for others with chronic illnesses
Post by: conny on November 12, 2006, 09:30:04 AM


Conny, so sorry to hear your mom is getting worse.

I would be interested to know what type of brain tumor your friend has.  My godson is on his fourth week of radiation and chemo for glioblastoma.  He started losing hair this weekend and is upset by this - who wouldn't be.  If he had any notions of denial, this will certainly quash those.  I dread seeing him next weekend and don't know how I will possibly be able to hold it together seeing him like that.  Ah shit, I'm crying just at the thought, damn!

oh i`m so sorry to hear this whiplash.
i don`t know what kind of tumor she has(d).i`ll ask her when i talk to her again. i do know she has this for already a long time,she has been a bedpatient with really heavy pains for 4 years,she only came out of bed when her kid was abused,that made her fight again. it always was on a place in her head where they couldn`t reach it,till last year.she had surgery,chemo,also lost all the hair,but stayed positive. she was cleared,but still had some white dots in her head,of which they were not sure wat it was.one of them grew out to another tumor,operating gave only 30% of possible good result,so she didn`t wanna do that,so she went to alternative docter in germany,and she had to follow a very healthy program,and lots of other stuff,that i dont know now,meditating and she was only allowed to thing and act possitive,and so after she explained it all,we wouldnt talk about it anymore. and she had some radiatiopn and colour therapy,which she had just started and then the george michael gig came and everything went very fast.
heard yesterday she had lots of pain and her docter from germany came that helped a lot and today she could situp and talk a bit.so there is progress!

i was always alble to keep my tears till later,but thats also cause i dont cry that easy in front of others. but just try to think positive just for his sake.and if you have to cry,well then let it come and maybe cry together.
thinking of you
take care!!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 12, 2006, 12:42:23 PM

Everyone wants to cry 'unfair' at this situation. How could you not cry? I want to cry over it, too.
Work is a gift. We dry our tears and roll up our sleeves...


.....and cry again and dry them again.....it's all survival ...we do what we have to do to make it one day at a time...
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 12, 2006, 03:31:24 PM
Whiplash, you've expressed so much love and concern for this lovely young man, your question about tears is heartbreaking to me, as I know it was one you never would have wanted to ask in relation to him. You have been honored once to be the godparent of the child, now you are honored by the chance to share this journey with the young man ( and those others who also love him and hurt to see him suffer at all ).

Tears are not easy to control, but I think you can try. Deep inside, he wants to live, and if or when it becomes time for him to feel he will not, he may need to talk about it. He will then look for a safe 'place' to share his feelings, and that safe place may be you.

He may have some anger - rage - at what has happened to his body, and have some serious grief-work to do about the present and future losses. Fear - how could he avoid it? - might be even harder for those who love him best to take.

But- you all have the gift of time now. And you know him.
Would he want to laugh? Watch comedy movies with him. Does he want to read? Find  his favorite books and magazines. Read to him if he can't read to himself- or doesn't want to. What does he like to wear? (What are the others his age wearing? ) Get him clothes, shoes.  Music - that's a given, isn't it? Do you know his heart's desire? Sell the house and get it for him. But odds are that he doesn't want things...

Where are his friends? Are they there with him? Or are they hesitant to visit because they don't know what to say?  Encourage them.

Make sure he is never alone - unless he wants to be, then give him space but be available.

It seems you will be at both ends of the spectrum - some of his needs intensely practical, some intensely emotional/spiritual. Different ones on different days ( sometimes at different hours of the same day)...

Everyone wants to cry 'unfair' at this situation. How could you not cry? I want to cry over it, too.
Work is a gift. We dry our tears and roll up our sleeves...


This is a beautiful post.  Thank you so much for your words.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on November 12, 2006, 04:52:24 PM
Lets make a pact to light a candle at Christmas to acknowledge those who we value and love and still value and still love, living or not, as a sign of peace.  :-*


what a great idea.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on November 13, 2006, 02:22:30 AM

Everyone wants to cry 'unfair' at this situation. How could you not cry? I want to cry over it, too.
Work is a gift. We dry our tears and roll up our sleeves...


.....and cry again and dry them again.....it's all survival ...we do what we have to do to make it one day at a time...
It's ok to cry, in fact we need to cry, if we bottle it up it does damage, it's where and when we choose to cry that is the difficult bit.

My father has been asleep for the best past of three days now. He has constant supply of a muscle relaxant to stop the seizures cause by his brain tumors and he looks so calm and peacefull.  We all hope he remains sleeping and drifts away in the next couple of days.  We are all so relieved that the wind down to his life has been so peaceful and so pain free and hope it will remain so.  We are so lucky to have him in a specialised hospice where the nursing care has been truly amazing.  We are approaching his passing with strength and peace and we are thankful for the time that we have had in preparing and for the thoughts, wishes and support from all our friends.

Love is a force of nature
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on November 13, 2006, 03:06:27 AM
Neil this is wonderful and truly beautiful that you have had this time with your family and friends. To find and have the strength for him and for yourselves. It is a blessing that he is peaceful and I know that it strenghtens you as well.
In his sleep he finds peace as I know that you all do. As you my hope is that he stays in peace and sleep.
Crying is healing.
Thank you nce again  for sharing this journey with us.
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 13, 2006, 05:12:16 AM
neil i`m so relieved that you dad has no pain,.
and your right crying heals!!
take care!!
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on November 13, 2006, 05:28:30 AM
hope it stays that way - peacefully going to sleep is the best possible way...

(((hugs)))
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 13, 2006, 06:41:37 AM
Jesus, I'm crying right now....*sigh*

Neil....big hugs to you.....to see him in such a peaceful way is so heartwarming..it's almost like he's having a good conversation with God...and he is soothing him,telling him.."It's alright"..........
Title: Re: Caring for others with chronic illnesses
Post by: Nax on November 13, 2006, 08:09:12 AM
Jesus, I'm crying right now....*sigh*

Neil....big hugs to you.....to see him in such a peaceful way is so heartwarming..it's almost like he's having a good conversation with God...and he is soothing him,telling him.."It's alright"..........
No need to cry, a good life well run and coming to a peaceful end,there's sadness but also a need to celebrate the good times and how fortunate I've been to have had such good parents.  Soon they'll both be safe and past any harm and that in itself is comforting. Peace little sister  :-*
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on November 13, 2006, 08:25:39 AM
Neil, bless you, K and your dad. And warmest hugs to you all.

Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 13, 2006, 05:18:12 PM
Neil, you have such a wonderful attitude. 

I wish your dad and your family peace and sweet memories.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on November 13, 2006, 05:45:34 PM
No need to cry, a good life well run and coming to a peaceful end,there's sadness but also a need to celebrate the good times and how fortunate I've been to have had such good parents.  Soon they'll both be safe and past any harm and that in itself is comforting.

How wonderful that you celebrate your Dad's life as a life well lived, Neil.   Hugs, friend - lots of 'em.
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 14, 2006, 05:39:17 AM
good news from my friend with the braintumor,she was allowed to go home today!! with the restriction of having help and doing absolutely nothing,but she can type a short email and her brain is working a bit!!

Mom is not doing too good and am gonna visit her on saturday.my brother and his family are coming too,so i have my wish come true,all of us over there for one more time.or maybe more times,we don1`t know that yet.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 14, 2006, 07:37:30 AM
good news from my friend with the braintumor,she was allowed to go home today!! with the restriction of having help and doing absolutely nothing,but she can type a short email and her brain is working a bit!!

Mom is not doing too good and am gonna visit her on saturday.my brother and his family are coming too,so i have my wish come true,all of us over there for one more time.or maybe more times,we don1`t know that yet.

HUGS...to you sweetheart....stay strong
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 14, 2006, 07:56:09 AM


HUGS...to you sweetheart....stay strong

thanks sweety
just had her on the phone,crying.that always make me feel that i can do so little. think she`s realizing,she hasn`t got much time left,or like she said,not much to look forward for.
and,for a long time she wanted a fireplace,but my dad didn`t want one cause then one wall needs to be done over,but now a neighbour is coming to help and she gets her fireplace i hope.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 14, 2006, 08:01:54 AM


HUGS...to you sweetheart....stay strong

thanks sweety
just had her on the phone,crying.that always make me feel that i can do so little. think she`s realizing,she hasn`t got much time left,or like she said,not much to look forward for.
and,for a long time she wanted a fireplace,but my dad didn`t want one cause then one wall needs to be done over,but now a neighbour is coming to help and she gets her fireplace i hope.

Oh God, I hope so....how wonderful it would be for her if she were to be able to rest in peace and staring at the soothingness of a fireplace...I hope she gets it,soon....

She's in my prayers hon...know that
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 14, 2006, 08:11:16 AM


Oh God, I hope so....how wonderful it would be for her if she were to be able to rest in peace and staring at the soothingness of a fireplace...I hope she gets it,soon....

She's in my prayers hon...know that

thanks sweety,you are in mine  :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 14, 2006, 07:31:26 PM
Conny, your mind and friend are in my thoughts.  Oh, I so hope your mom gets a fireplace.  Such a small wish and yet it would bring her hours of comfort.  I would run over and help right now if you weren't so far away  :-\
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 14, 2006, 09:36:09 PM
Conny, your mind and friend are in my thoughts.  Oh, I so hope your mom gets a fireplace.  Such a small wish and yet it would bring her hours of comfort.  I would run over and help right now if you weren't so far away  :-\

thanks whiplash,i think she will get it in time,neighbour would come over yesterday to see if it was possible and to give me dad a hand
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on November 14, 2006, 09:39:38 PM
Conny, warmest thoughts and love always for you, your family and your friend.
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 14, 2006, 09:41:47 PM
thanks glenn  :-*
my friend is at home and doing better,i think she will concer this again,and hopefully forgood now.

and you know for my mom,i deep in my heart i hope she wont have to suffer that long anymore!
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on November 14, 2006, 09:44:31 PM
I am thrilled for your friend's good news, Conny and hope that continues.

Understand completely what you said about your dear Mom.  When her time comes, I hope & pray that it will be peaceful.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on November 16, 2006, 05:53:16 PM
my friend is at home and doing better,i think she will concer this again,and hopefully forgood now.

and you know for my mom,i deep in my heart i hope she wont have to suffer that long anymore!

Conny, I'm very happy that your friend is doing well.

Keeping your mother (and you) in my thoughts and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: conny on November 16, 2006, 09:32:49 PM
thanks chuck and glenn  :)
am gonna visit mom on saturday,am so curious how she looks.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on November 17, 2006, 10:04:25 AM
Just to let you know my father died at 13:15 today, thanks for your support, more thanks and information in the Mourning thread.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on November 17, 2006, 10:07:44 AM
Nax....thinking of you, K, your sister and all your family.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 18, 2006, 04:20:44 PM
Nax, so sorry for your loss.  I wish your father peace in the place of his beliefs.  Warm hugs and happy memories to you.

(http://i56.photobucket.com/albums/g166/nopin/lily-2.jpg)
Title: Re: Caring for others with chronic illnesses
Post by: ImEnnisShesJack on November 25, 2006, 05:56:13 PM
Dave has an important announcement about the forum, which he asks all members to read:

http://davecullen.com/forum/index.php?topic=18085.msg602098#msg602098

We have set up a thread to discuss the situation. That discussion thread is linked from the post directly below the message from Dave. Follow the above link and you'll get to both.

Thanks
Title: Announcement from Team Cullen - Please Read!
Post by: BrokenOkie on December 20, 2006, 05:41:34 PM
The administration has been working extremely hard to solve the slow down issue that has been plaguing the forum for some months now. It has been determined that to solve this we will have to change the host company of the forum. The new host server has now been contracted with by Dave as of today.

We are proceeding rapidly now and hope to have the conversion complete within a few weeks at the latest and hopefully much sooner. We will keep you (members) apprised. Please look for announcements in the Newsbox. Some changes will likely come up suddenly--that is the nature of computer conversions, so it is impossible to know before we test whether something will go flawlessly and take two hours, or uncover thorny issues that will take days. The testing process is being started. This will not affect the forum at this point.

So taking this into consideration, we don't want to give you timeframes that are unrealistic. As soon as we finish a stage, we'll proceed immediately to the next, and the exact changeover will likely come on very short notice to you (members). We will post this changeover time in the Newsbox as well as in the individual threads, and will give you as much lead time as we can manage. This will enable us to end the slowdown ASAP.

Thank you for your patience.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 02, 2007, 05:42:28 AM
Okay....here we go again.

First of all...Happy New Year!!

Got to my sister's on New Year's Eve to find my mom in tears again...my aunt is still kicking but she had gotten news that it seems her system is shutting down. She's so swollen and fluid is leaking...ugh...terrible,just terrible....

I had prayed to God to take my aunt after the New Year.....guess that will happen shortly....please say a prayer that she goes peacefully and w/o pain....I'm praying for my mom to keep up her strength

Thanks

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on January 02, 2007, 05:52:46 AM
will do so, nellie. it is a gift, a mercy top be able to go without pain, peacefully. i hope that will be possible for your aunt.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on January 02, 2007, 05:54:15 AM
We are with you Nellie  :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 02, 2007, 10:08:53 AM
I had prayed to God to take my aunt after the New Year.....guess that will happen shortly....please say a prayer that she goes peacefully and w/o pain....I'm praying for my mom to keep up her strength


Nellie, I'm praying for your aunt, that she has a peaceful journey as she crosses over, and for your mom, that she will find comfort and peace offered from her relatives.
Title: Re: Caring for others with chronic illnesses
Post by: cabin on January 03, 2007, 05:34:40 PM
Nells:

Your aunt will be in my thoughts.  Take care of your mama as she will be the one to feel the brunt.

 :-* Gerry
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on January 05, 2007, 05:37:29 PM
Thinking about you Nelly and saying a prayer for your aunt and your family.  Big hugs to all!
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on January 09, 2007, 04:38:03 PM
Still thinking about you Nell and praying for your aunt.  Let us know how she is doing (if you have time).  {{{hug}}}
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 09, 2007, 05:21:16 PM
Still thinking about you Nell and praying for your aunt. Let us know how she is doing (if you have time). {{{hug}}}

OMG...what a doll you are...thank you for thinking of me and my aunt. I just got off the phone with my mother. Perfect timing. She isn't doing too good. They put her on dialysis now 3x a week...every day they take out 3 liters of liquid out of her...she's in contant pain....I hate this...hate it all...my worst fears..to suffer...I just want her to go. My Goddamn uncle doesn't even want them to give her morphine...he wants to see her awake so he can pretend she's getting better. He's so screwed up...he isn't ready to let her go...won't make funeral arrangements...won't let us talk about it....ugh.........she flatlined the other day....were able to get her back....shit!!!

sorry...I'm not mad at my uncle..just tired of all this..feel so badly for him and my mom...not to mention the suffering my aunt is going through...*sigh*

Thanks again for thinking of her... :-*

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 09, 2007, 06:19:36 PM
OMG...what a doll you are...thank you for thinking of me and my aunt. I just got off the phone with my mother. Perfect timing. She isn't doing too good. They put her on dialysis now 3x a week...every day they take out 3 liters of liquid out of her...she's in contant pain....I hate this...hate it all...my worst fears..to suffer...I just want her to go. My Goddamn uncle doesn't even want them to give her morphine...he wants to see her awake so he can pretend she's getting better. He's so screwed up...he isn't ready to let her go...won't make funeral arrangements...won't let us talk about it....ugh.........she flatlined the other day....were able to get her back....shit!!!

sorry...I'm not mad at my uncle..just tired of all this..feel so badly for him and my mom...not to mention the suffering my aunt is going through...*sigh*

Thanks again for thinking of her... :-*

Nellie


Nellie, I'm sorry that she is in pain, and you can't do anything for her.  I'm keeping her and you and my prayers.
Title: Re: Caring for others with chronic illnesses
Post by: conny on January 10, 2007, 01:13:11 AM
this is hard to hear nell,and i can imagine this is hard for all of you.doesn`t your aunt have a say in this,or does she too has hope?
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 10, 2007, 05:44:06 AM
this is hard to hear nell,and i can imagine this is hard for all of you.doesn`t your aunt have a say in this,or does she too has hope?

She can't speak anymore...it's been months. She has tubes all over...Whether she talked about this before with her husband..I have no idea..she signed no papers...nothing....all her organs are shutting down...she even has a glaze over her eyes....that look of death.....ugh!!  *sigh*
Title: Re: Caring for others with chronic illnesses
Post by: Nax on January 10, 2007, 06:17:09 AM
this is hard to hear nell,and i can imagine this is hard for all of you.doesn`t your aunt have a say in this,or does she too has hope?

She can't speak anymore...it's been months. She has tubes all over...Whether she talked about this before with her husband..I have no idea..she signed no papers...nothing....all her organs are shutting down...she even has a glaze over her eyes....that look of death.....ugh!!  *sigh*
Nellie, you know there is nothing to worry about, but I know how painful this period is for you and you family, you can see the final hurdle approaching and everyone is holding their breath waiting - remember to breathe honey, one step and one day at a time.  I just hope that her passing will be peaceful and that you Uncle is there with her it will help him.  If she has morphine at this stage it will help her rest.  I'm thinking of you and sending you the love and support you gave to me in my recent bereavement.

hugs honey  (((((((((((Nellie))))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: conny on January 10, 2007, 06:44:39 AM


She can't speak anymore...it's been months. She has tubes all over...Whether she talked about this before with her husband..I have no idea..she signed no papers...nothing....all her organs are shutting down...she even has a glaze over her eyes....that look of death.....ugh!!  *sigh*

oh darn,that is even harder.this is so unfare.why do they keep on doing this to her.i hope she gets peace very soon!!
Title: Re: Caring for others with chronic illnesses
Post by: brian on January 10, 2007, 01:38:26 PM
Oh Nell,  I am thinking of and praying for you, your mother and Aunt.
And please, everyone, although it might be difficult to consider, do discuss with your loved ones and even better put into writing your wishes if you decline into a condition like this. My sister and I have both signed enduring powers of attorney with the stipulation that we are not to be kept alive if there is no medical hope. However my brother-in-law will not even think about it. 
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 10, 2007, 02:19:34 PM
Thank you everyone...you are all too kind...and it sure helps...and Brian,man,you're not kidding...we must all do this...perfect example right here...and let's not wait until we get old either...because stuff like this happens to us all....
Title: Re: Caring for others with chronic illnesses
Post by: cabin on January 10, 2007, 02:59:13 PM
Thinking of you.

Gerry
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on January 10, 2007, 04:38:19 PM
Oh Nell, that is so hard.  I hope she finds peace soon.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on January 10, 2007, 09:27:41 PM
i so hope my mom and dad have arranged it well by now.
they now have found a tumor with mom at her thymus,it`s very rare and only found out by coinsedence at an exray. next week thei`re gonna try and do a biopsie,which already is a big risk,but they have to know if it`s a bad type of cancer and if its worth to oparate on.and aparrantly it`s pressing on her lungs as well.
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on January 11, 2007, 12:54:42 AM
Oh I'm so sorry to hear that Conny.  Hugs to you all.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 11, 2007, 05:32:18 AM
Oh Conny...God,when it rains it sure pours....I will keep your mom in my prayers,hon

Keep strong...hugs

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: cabin on January 11, 2007, 06:03:07 AM
Conny:

You and your mom are in my thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: conny on January 11, 2007, 06:09:04 AM
thanks guys,will see her saturday,cause they are married 45 years today and my dad`s 69th birthday is saturday and mom`s next wednesday.
we all are surprised she`s still here,never thought she made it till christmas,so there`s always hope. the tumor could be the cause of her blood desease.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 11, 2007, 07:40:44 AM
conny, keeping you and your mom in my thoughts and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on January 11, 2007, 08:20:52 AM
Conny, Nellie, keeping you and your relatives in my prayers.

Title: Re: Caring for others with chronic illnesses
Post by: desertrat on January 11, 2007, 09:33:55 AM
i will do a prayer as well. wish you all best things..
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on January 15, 2007, 08:51:36 PM
thanks guys,will see her saturday,cause they are married 45 years today and my dad`s 69th birthday is saturday and mom`s next wednesday.
we all are surprised she`s still here,never thought she made it till christmas,so there`s always hope. the tumor could be the cause of her blood desease.

Conny, how did it go with Mom on Saturday?  Hope all is well.  {{{{hugs}}}}
Title: Re: Caring for others with chronic illnesses
Post by: conny on January 16, 2007, 01:04:13 AM
this is so sweet of you all,thanks  :-*
saturday mom was having one of her good days,and she and the rest of my family keeps on hoping she`s gonna be better.but in my opinion it only gets worse,but i keep my mouth shut  ;)
this friday she had an appointment with a neuro surgeon,so think we`ll know a bit more maybe after that. but the fact that she`s loosing weight fast and has no appetite at all,aint no good sighns to me.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on January 16, 2007, 01:41:01 AM
Thinking of you honey  :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 16, 2007, 09:41:14 AM
thank you for the update, Conny!

sending you positive thoughts and love!
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on January 16, 2007, 05:04:02 PM
Thanks Conny, I'll keep a good thought. 

No appetite - sounds like she needs some medicinal marijuana, that will get her eating.
Title: Re: Caring for others with chronic illnesses
Post by: conny on January 17, 2007, 01:35:05 AM
she already tried the medical marijuana,as a painkiller some time ago,and will not take it again,didn1t work btw she said,and my mom is a very stuborn woman!! and she only does what the docter says  ::)
Title: Re: Caring for others with chronic illnesses
Post by: conny on February 08, 2007, 05:29:07 AM
my mom had the biopsie today,all went well,was a risky thing,cause they had to go trough her longs as well,she only lost some blood,but they gave her extra in advance.
she has a tumor on her thymus,that was discovered accidentaly on exray and which could be the cause of her blood desease.now we have to wait about two weeks for the results,wheter it`s a bad form or not.and if i`s oparable.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on February 08, 2007, 05:34:36 AM
(((CONNY)))..your mom is still in my prayers ,hon...
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on February 08, 2007, 05:36:01 AM
conny, i'll keep a prayer reserved for your mum, i hope they will be able to operate and she's going to be ok.


will you all please send a little prayer for my grandfather ? he's having his biopsy today. it could be that he has a nasty type of bone-cancer like disease, it dissolves the bones, a horribly painful death. i can't even think about it. i hope that the universe takes pity on him, he alreay survived colon cancer. i just wish for a couple of good, painfree years for him and a then a soft, quick walk out.
this is not fair....
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on February 08, 2007, 05:42:56 AM
((( MARTINA ))).........I'll keep him in my prayers too hon....
Title: Re: Caring for others with chronic illnesses
Post by: conny on February 08, 2007, 06:00:07 AM
((Martina))) ofcourse your grandfather is in my thoughts as well!
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on February 08, 2007, 06:03:43 AM
((((Martina)))) ((((Conny))))

Thinking of you and your grandfather and mother - hoping for good news for you all.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on February 08, 2007, 03:33:25 PM
{{{{{{{CONNY and MOM}}}}}}}

{{{{{{{MARTINA and GRANDPA}}}}}}}

May comfort and peace find all four of you and your families...

Rob
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on February 08, 2007, 04:19:26 PM
Conny, Martina and Nellie, you and your families are always in my prayers. Bless you.

Title: Re: Caring for others with chronic illnesses
Post by: whiplash on February 08, 2007, 06:17:16 PM
My thoughts and prayers are with you and your families.

You know, my aunt ended up in the hospital a couple of weeks ago after falling in her bathroom (such a cliche) and they found out she has congestive heart failure and lung cancer.  Naturally I have been to visit her in the hospital and then they put her in a nursing home for a few days to get her walking and she ended up with some strange infection in her colon and then in intensive care etc., etc.  It seems to be the same scenario with all of our Old People, their bodies have just had enough.

She has always been my favorite aunt - we have a lot of silly pet names and recurring jokes we play.  She did her usual fawning over me and how young I look and it struck me really hard that when these precious Old People are gone, I will no longer be young.  They witnessed my birth and my growth but in their eyes I am forever young.  Very sad.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on February 08, 2007, 07:21:16 PM
sending positive thoughts and prayers out to Conny and her mom, Martina and her grandpa, and whiplash and her aunt.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on February 08, 2007, 07:51:38 PM
My thoughts and prayers are with you and your families.

You know, my aunt ended up in the hospital a couple of weeks ago after falling in her bathroom (such a cliche) and they found out she has congestive heart failure and lung cancer.  Naturally I have been to visit her in the hospital and then they put her in a nursing home for a few days to get her walking and she ended up with some strange infection in her colon and then in intensive care etc., etc.  It seems to be the same scenario with all of our Old People, their bodies have just had enough.

She has always been my favorite aunt - we have a lot of silly pet names and recurring jokes we play.  She did her usual fawning over me and how young I look and it struck me really hard that when these precious Old People are gone, I will no longer be young.  They witnessed my birth and my growth but in their eyes I am forever young.  Very sad.

Warm thoughts to you and your aunt...

I recall thinking similar feelings as you when first my mother than my father died. The two of them were among the first to see me... they witnessed my infanthood... my childhood... my teens and then a bit of my adulthood.

Unfortunately, neither were here to witness my coming out and the happiest days of my life thus far...

Hugs,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: beruthiel on February 08, 2007, 08:53:48 PM
I hope this is the right place to ask this question.  Do we have any Reiki practitioners on the forum?  I am looking for help for my mother.  I did a two-day Reiki workshop this past weekend, but I am still getting my feet under me and am not sure that what I am doing will have any effect.  Any information would be greatly appreciated. Thanks.
Title: Re: Caring for others with chronic illnesses
Post by: conny on February 09, 2007, 12:22:51 AM
I hope this is the right place to ask this question.  Do we have any Reiki practitioners on the forum?  I am looking for help for my mother.  I did a two-day Reiki workshop this past weekend, but I am still getting my feet under me and am not sure that what I am doing will have any effect.  Any information would be greatly appreciated. Thanks.

yes i am,am having reiki 1 and 2,you can always pm me if you have questions!!
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on February 09, 2007, 02:40:47 PM
whiplash, lots of positive thoughs for your aunt !

you are right about the things that happen once some health thing starts with elderly people...i can understand now why they constantly refuse to go to the hospital, being afraid that once they get in, they won't get out again. it just happens too often.

grandpa was sent home from the hospital today again. he's feeling well. now the big waiting game starts. we'll get the results on feb 22nd. the doctor said he'll discuss treatment options then. that doesn't sound too good.  :'(
Title: Re: Caring for others with chronic illnesses
Post by: conny on February 10, 2007, 01:34:14 AM
fingers corssed for you grandpa martina,my mom gets the results around those days as well.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on February 10, 2007, 04:08:05 AM
I just dropped by on this thread to say I'm with you all heart and soul. I've been through the trauma of Mom's last illness and her end ... it was so mercifully brief and yet within that brief time there was so much hanging in the balance, so many doubts, fears, questions , her pain, her restlessness and her mental disconnection from reality. This experience has sensitized me to a high degree about the agony that so many of you here are experiencing over the illnesses of loved ones. My love to each one of you and your dear ones who are going through this anguish. My prayers are always there for you all.
 :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on February 22, 2007, 04:04:11 PM
THANK YOU SO MUCH to all who prayed for my grandfather ! he got the results today and he is ok. they even reduced the frequency of his cancer checkup appointments because his test results are that good ! i'm so happy and i can't sttop thanking you for your support and your prayers !

love,
martina.
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on February 22, 2007, 04:11:55 PM
That's great news Martina.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on February 22, 2007, 05:24:44 PM
Martina......I'm soooo happy to hear the great news....you need to celebrate now....!! 
Title: Re: Caring for others with chronic illnesses
Post by: conny on February 22, 2007, 11:37:48 PM
martina great news!!

my mom got good news too!! het tumor is porbably from a good type,not 100% sure yet,but hopes are good.But....they do have to remove it,cause it is pushing on one long and that is about to collaps,but the operation is very risky.
good thing is that my mom lost lot of weight during her illness and before the op she needs a lot of blood.they thing this tumor is the cause of her blooddesease.  her white bloodcells were very good.
Title: Re: Caring for others with chronic illnesses
Post by: brian on February 23, 2007, 02:40:46 AM
Good to hear Conny. My prayers are for continued good and even better news about your Mom
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on February 23, 2007, 03:10:09 AM
Conny, I'm so glad to hear that things are looking hopeful with your Mum.

I'll keep my fingers crossed.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on February 23, 2007, 08:36:18 PM
So nice to check in and see such good news!  Hugs and hope for continuing good news to Martina and Conny  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on February 23, 2007, 09:05:43 PM
THANK YOU SO MUCH to all who prayed for my grandfather ! he got the results today and he is ok. they even reduced the frequency of his cancer checkup appointments because his test results are that good ! i'm so happy and i can't sttop thanking you for your support and your prayers !

love,
martina.


Great news, beautiful!

Continued warm thoughts and wishes your way,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on February 23, 2007, 09:08:06 PM
martina great news!!

my mom got good news too!! het tumor is porbably from a good type,not 100% sure yet,but hopes are good.But....they do have to remove it,cause it is pushing on one long and that is about to collaps,but the operation is very risky.
good thing is that my mom lost lot of weight during her illness and before the op she needs a lot of blood.they thing this tumor is the cause of her blooddesease.  her white bloodcells were very good.

Thoughts of your mom and you Conny!

Hugs, too!
 :-* :-* :-*
Rob
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on February 24, 2007, 05:07:20 AM
well, at least partly good news for your mum, conny ! we'll continue keeping her in our prayers....let us know when the surgery will be !
Title: Re: Caring for others with chronic illnesses
Post by: conny on February 24, 2007, 05:08:27 AM
they called her yesterday and surgery will be in two weeks!!
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on February 24, 2007, 05:10:08 AM
they called her yesterday and surgery will be in two weeks!!

wow, that's soon ! at least she doesn't have to wait too long...
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on March 10, 2007, 04:29:15 PM
Connie, was the surgery this weekend?  How is your mom?  I hope she is doing well, I am still sending positive thoughts your/her way.
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 11, 2007, 10:26:51 AM
Connie, was the surgery this weekend?  How is your mom?  I hope she is doing well, I am still sending positive thoughts your/her way.

so kind of you to ask and think about us!! mom is stable,but tired and sleeps a lot and still waiting for the surgary,all depends on when the specialist has time!
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on March 11, 2007, 11:23:05 AM
Connie, was the surgery this weekend?  How is your mom?  I hope she is doing well, I am still sending positive thoughts your/her way.

so kind of you to ask and think about us!! mom is stable,but tired and sleeps a lot and still waiting for the surgary,all depends on when the specialist has time!

hope that will be soon !  :)
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 11, 2007, 11:38:34 AM
Please keep us posted, Conny!
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on March 11, 2007, 11:39:57 AM
Thanks for the update Conny.  I'll be keeping your Mum in my thoughts.

(And thanks for asking the question whiplash - I was wondering on Friday too.)
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on March 11, 2007, 06:40:55 PM
Thanks Conny, I will be keeping her in my positive thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 11, 2007, 06:48:55 PM
Thanks Conny for letting us know.
I am thinking of you both and your dad. :)
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 12, 2007, 12:53:39 AM
thanks all you sweet people!! means a lot to me!! and ofcourse keep you posted!
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 25, 2007, 05:16:35 AM
If all goes well,she is now on her way to the clinin and gets some last tests,my mom is going to have her surgary tomorrow!!
and they found out she`s having auto-immune desease as well,so its double tricky now,could be her breathing is gonna stop during or after surgary,and if so aftermthey are gonna keep her in a deep sleep for a few days.so its gonna be tricky the upcomming days!
but first she needs to pass the final tests,so will know more this evening or tomorrow if it indeed is gonna happen.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on March 25, 2007, 06:12:18 AM
If all goes well,she is now on her way to the clinin and gets some last tests,my mom is going to have her surgary tomorrow!!
and they found out she`s having auto-immune desease as well,so its double tricky now,could be her breathing is gonna stop during or after surgary,and if so aftermthey are gonna keep her in a deep sleep for a few days.so its gonna be tricky the upcomming days!
but first she needs to pass the final tests,so will know more this evening or tomorrow if it indeed is gonna happen.

My thoughts are there with you all Conny.
 :-*
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on March 25, 2007, 09:10:07 AM
If all goes well,she is now on her way to the clinin and gets some last tests,my mom is going to have her surgary tomorrow!!
and they found out she`s having auto-immune desease as well,so its double tricky now,could be her breathing is gonna stop during or after surgary,and if so aftermthey are gonna keep her in a deep sleep for a few days.so its gonna be tricky the upcomming days!
but first she needs to pass the final tests,so will know more this evening or tomorrow if it indeed is gonna happen.
My thoughts are with you and your mom, Conny...

Know that in your moments when you visiting with your mom, we're there with you in spirit!

Hugs and holding hands,
Kisses too,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on March 25, 2007, 10:18:44 AM
i will think of your mum and you, conny. lots of hugs to you  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 25, 2007, 02:32:00 PM
thanks guys,dont know when i will be able to visit her.couldnt go there these last days,and she was in hospital last night all of a sudden,cause she had a lot of little point bleedings(dont know if thats the right translation though  ;)) but she`s in the clinic now and havent heard from my dad,so i guess it all goes on.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 25, 2007, 06:57:05 PM
Conny, my love, sending you and your mom, and family, positive thoughts, prayers and love!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 25, 2007, 07:10:26 PM
Conny I am just catching up and read this about your mum. I am keeping you and your dad and mum in my thoughts and prayers. I hope she is resting well.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on March 26, 2007, 01:47:56 AM
Thinking of you Conny, you know your friends here will give you the support you need.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 26, 2007, 05:57:17 AM
thanks guys and girls  :-*
no word yet,so think she`s till in surgary
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 26, 2007, 07:25:27 AM
she`s on recovary right now,surgary went well!!! they could remove the whole tumor and thymus,and it wasn`t atached to the lungs,so thats good news!!
she needs lots of blood and her red bloodplates were bad,but they keep good eye on that,and now it`s waiting time how she will be after this.mostly she gets very sick from anestesia.
but step one has gone great!
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on March 26, 2007, 09:17:42 AM
Very encouraging news, (((Conny))).   Thanks for the updates.  Warmest thoughts and prayers for you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 26, 2007, 09:44:12 AM
Conny, that is great news!  Thanks for keeping us up to date!
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on March 26, 2007, 10:16:45 AM
That's very encouraging news Conny.  I hope everything carries on as well as it has so far.
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on March 26, 2007, 02:51:18 PM
wow, that's good news ! i'll go on praying for you and your family !
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on March 26, 2007, 04:22:45 PM
So happy to hear that your Mom is doing well Conny.  I will continue to keep you both in my thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on March 26, 2007, 04:46:08 PM
Continuing to pray for you and your mother, Conny.

Title: Re: Caring for others with chronic illnesses
Post by: conny on March 27, 2007, 12:58:53 AM
thanks a lot guys,really means a lot  :-*
my dad calles last night,she then was just off the breathing machine and breathing on her own went well,still on intensive care,but of all goes ok,she can go to a normal room today!
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 27, 2007, 01:26:45 PM
that's great!!!!!!!!!!!
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 27, 2007, 02:23:52 PM
she still had to stay on intensice care today,but that was to keep her blood under controle,cause the bloodplates wrre still low.but she looked better according to dad and also felt better,so thats good news.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 27, 2007, 02:30:56 PM
Conny thanks so much for the updates. I am gald she is doing well and it is good they are keeping her in ICU to keep a close watch over her. I am thinking and praying for you and your family and am sending postitive thoughts to your mum.
Take care and when you talk to your dad, send him love.
Hugs,
Linda
Title: Re: Caring for others with chronic illnesses
Post by: conny on March 27, 2007, 03:14:08 PM
will do linda,thanks ya`ll  :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on April 09, 2007, 01:51:38 PM
Conny, how is your mom? 
Title: Re: Caring for others with chronic illnesses
Post by: conny on April 10, 2007, 05:40:04 AM
Conny, how is your mom? 

thanks for asking sweets  :).she`s home one week now and doing ok.thew sound of her voice is stronger and more alive!
she did need another transfusion last saturday and probably thats gonna stay that way.Not sure yet if the operation has done anything to improve the blood desease.so only the future can tell that.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on April 10, 2007, 05:54:31 AM
thanks for the update, Conny.
I am so glad she is sounding better.
I think of her and keep her in my thoughts. :)
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on April 10, 2007, 05:19:08 PM
Thanks Conny.  I continue to think about you both  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on April 11, 2007, 07:36:38 AM
Thanks Conny.  I continue to think about you both  :-*

thats so sweet of you hon,thanks  :)
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on May 18, 2007, 09:04:56 AM
Just wanted to mention to all you nice folks that I still think about all of you,your loved ones and all...still keep you all in my prayers.

Please keep my aunt in yours....the latest news on her is that now they've found lung cancer. I just want all this to end already. It's been way too long,too much suffering,even for my uncle who still had hopes of her to recover and now this. Second hand smoking kills...she never smoked in her life but he does. You know how this is making him feel right now?....just terrible. My cousin is driving in from Alabama to see her mom,possibly for the last time...who's to know...
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on May 18, 2007, 09:34:10 AM
Just wanted to mention to all you nice folks that I still think about all of you,your loved ones and all...still keep you all in my prayers.

Please keep my aunt in yours....the latest news on her is that now they've found lung cancer. I just want all this to end already. It's been way too long,too much suffering,even for my uncle who still had hopes of her to recover and now this. Second hand smoking kills...she never smoked in her life but he does. You know how this is making him feel right now?....just terrible. My cousin is driving in from Alabama to see her mom,possibly for the last time...who's to know...

Warm, loving thoughts coming your aunt's, yours and your family's way, Nellie...

You're missed around here, ya know?

Love and hugs,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on May 18, 2007, 09:43:21 AM
Robbie...thank you soooo much honey..........I miss you so....God,you have no idea!!

Love you baby cakes

Nellie xxoo
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on May 18, 2007, 08:23:22 PM
Miss you Nell  :-*

Still think about you and your aunt.  I will continue to pray.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on May 21, 2007, 12:24:05 PM
Miss you Nell :-*

Still think about you and your aunt. I will continue to pray.

Oh thank you sweetheart...it means a lot!!
Title: Re: Caring for others with chronic illnesses
Post by: conny on May 22, 2007, 10:47:17 AM
how sad nell esp. for your aunt mostly,that she has to go trough all this.
thinking of you  :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on May 30, 2007, 04:48:31 PM
Conny, how is your mom doing?
Title: Re: Caring for others with chronic illnesses
Post by: conny on May 30, 2007, 10:17:02 PM
Conny, how is your mom doing?

thanks for asking hon,sje`s the same.still the weekly transfusions.she has her good and bad days.on the bad ones she wanna die,but does`nt have the guts for it.she is afraid. so she just keeps going on,doing nothing,lying in bed most of the time,having severe painh 24/7. i knew i would have quited loig time ago.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on May 31, 2007, 01:45:31 AM
Tight loving hugs to you, Conny. I can't imagine how rough the moments can be for you, your mom and your family.

We're here for ya...

Kisses, too,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on May 31, 2007, 05:38:01 AM
Oh Conny, I'm so sorry to hear that.  Can't they do anything for the pain?  Nobody should have to deal with that kind of pain, you can get lost in it.

Big hugs to you and mom  :-*

Lydia
Title: Re: Caring for others with chronic illnesses
Post by: conny on May 31, 2007, 06:34:31 AM
no they cant she has  had shingles two years ago and the nerve pain stayed. i`ve had shingles 3 times now,so i know a bit what she feels.only she has it in very bad condition and nothing can be done about that pain,she has tried it all! even morphine doesnt work.
i know there is an injection against shingles in the US,but we havent got it yet,will have to wait tilll 2008 before it is in europe.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on June 02, 2007, 07:12:23 PM
(((Conny)))  (((Nellie))) 

If thoughts can be supportive, they're always here for you.  Prayers, too.


And I guess it's time to "fess up" and tell you about the latest [ongoing] chapter over in this little corner of the world.  A few of you know, but I've waited to post.  3 weeks ago this evening, Ma fell at home.  Quick ambulance run to the ER and X-rays, which showed nothing fractured or broken.  She fell again 2 days later, resulting in a broken hip.  Her potassium level was off the scale, so her system had to be purged to get that down to an acceptable level.  Meanwhile, 3 days later off to surgery she went for bi-polar replacement.  The surgeon and admitting doctor all told us about the added risk (she's a heart patient, the potassium was still not as low as it should have been & could easily have triggered cardiac arrest) and 'that look', which clearly meant they didn't reasonably expect her to make it.

Miraculously, she beat the odds [again] and survived the procedure.  She was sent to rehab 3 days later, which was way too soon [I could kick that f'g idiot doctor], so I had her transported to another facility where she can be under the care of her regular doctor.  She's in a skilled nursing program, along with physical therapy.  Due to anesthesia and being grossly over-medicated following the surgery, she's completely bonkers now.  Does not know where she is or why, but she does know who everyone is.  She seems to be lost somewhere in the past mentally.  Hardly eats enough to stay alive, but is doing some therapy.  She's combative about the therapy and taking her medications, but our regular doc is making slow, but steady progress with her.  Whether of not she will be able to go back home remains to be seen.  It may take a lot of time before that can even be a possibility.

This ain't no fun and I am beat physically & emotionally.  Onward through the fog.....
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 02, 2007, 08:17:04 PM
Glenn...

So sorry to hear about your mom. I can imagine the anger... confusion... perhaps grief and sorrow you're feeling now. Change such as what your mom is going through can seem very sudden. It's my hope that another change happens soon, this time with her recovery.

Though you may feel alone right now, you've got many here backing you, even from a distance.

Love and hugs to you and your mom,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on June 02, 2007, 08:39:53 PM
Thanks (((Boo)))  :-*    We just have to play the cards we're dealt, and she's always faced life just that way.  She's been through some rough problems in the past, but she's older now and it's such a balancing act just to keep her physically 'stable'.  From time to time she's aware of the mental issues.  <sigh>
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 02, 2007, 08:52:41 PM
(((((((GLENN  :-* :-* :-* )))))))

Kinda been there too, Glenn. :(

Here for ya bud...
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 03, 2007, 12:50:03 AM
(((glenn))) my heart goes out to you and your mom. she is such a tough lady and already survived many times. i will keep my fingers crossed she will do this time too!
its a good thing she recognizes people and still is here. one day at a time will maybe bring her back home.
i keep you both in my thoights! 
take care sweets  :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 03, 2007, 03:10:22 AM
i'm thinking of you and your mum, glenn. hope things will get better. (((hugs)))
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 03, 2007, 06:59:45 AM
no they cant she has  had shingles two years ago and the nerve pain stayed. i`ve had shingles 3 times now,so i know a bit what she feels.only she has it in very bad condition and nothing can be done about that pain,she has tried it all! even morphine doesnt work.
i know there is an injection against shingles in the US,but we havent got it yet,will have to wait tilll 2008 before it is in europe.

According to my doctor, once you have shingles the injection doesn't do any good  :(
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 03, 2007, 07:03:24 AM
Glen, I don't really know you but I will keep you and your mom in my thoughts.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 03, 2007, 10:20:12 AM


According to my doctor, once you have shingles the injection doesn't do any good  :(

hmm thats too bad!  :(
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on June 04, 2007, 12:00:19 PM
Thank you, everyone.  Yesterday was a good one, a turning point in Mom's recovery.  She's coming out of the fog of confusion. 
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 04, 2007, 12:06:07 PM
Thank you, everyone. Yesterday was a good one, a turning point in Mom's recovery. She's coming out of the fog of confusion.

Oh Glenn sweety....sending you hugs and prayers sweetheart.....I'm so glad she's getting a bit better...

Nellie...xxooxxoo
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on June 04, 2007, 12:07:22 PM
Thank you, everyone. Yesterday was a good one, a turning point in Mom's recovery. She's coming out of the fog of confusion.


I'm so glad to hear that, buddy!



((((((Glenn & Mom))))))
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on June 09, 2007, 01:48:27 AM
3 weeks ago this evening, Ma fell at home.  Quick ambulance run to the ER and X-rays, which showed nothing fractured or broken.  She fell again 2 days later, resulting in a broken hip.  Her potassium level was off the scale, so her system had to be purged to get that down to an acceptable level.  Meanwhile, 3 days later off to surgery she went for bi-polar replacement.  The surgeon and admitting doctor all told us about the added risk (she's a heart patient, the potassium was still not as low as it should have been & could easily have triggered cardiac arrest) and 'that look', which clearly meant they didn't reasonably expect her to make it.

Miraculously, she beat the odds [again] and survived the procedure.  She was sent to rehab 3 days later, which was way too soon [I could kick that f'g idiot doctor], so I had her transported to another facility where she can be under the care of her regular doctor.  She's in a skilled nursing program, along with physical therapy.  Due to anesthesia and being grossly over-medicated following the surgery, she's completely bonkers now.  Does not know where she is or why, but she does know who everyone is.  She seems to be lost somewhere in the past mentally.  Hardly eats enough to stay alive, but is doing some therapy.  She's combative about the therapy and taking her medications, but our regular doc is making slow, but steady progress with her.  Whether of not she will be able to go back home remains to be seen.  It may take a lot of time before that can even be a possibility.

This ain't no fun and I am beat physically & emotionally.  Onward through the fog.....



(((((((Glenn))))) I can understand every bit of what you're going through having been in a similar predicament. I'm glad to see from your later post that there is improvement. My thoughts are with you and Mom.

And ((((((Conny)))))) and ((((((((Nellie)))))) --warm hugs to you both and to Mom and Aunt.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 11, 2007, 07:05:43 PM
Thank you LovelyAmazing......(((hugs))) to you too!

Yesterday was my aunt's birthday...she turned 77 years old..
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 11, 2007, 10:07:23 PM
thanks lovely sweet of you  :-*
my mom was supposed to visit me last sunday but she was too sick to come afterall.and i was too sick to go overthere.think it runs the family eh  ;)
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 14, 2007, 06:18:24 AM
Just some news today...got a phone call to say that my aunt passed away at around midnight. Lost for words right now. Please keep my mom and uncle in your thoughts....they're the one's that are going to have a hard time. My aunt is painless and at peace right now...
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on June 14, 2007, 06:27:13 AM
Just some news today...got a phone call to say that my aunt passed away at around midnight. Lost for words right now. Please keep my mom and uncle in your thoughts....they're the one's that are going to have a hard time. My aunt is painless and at peace right now...


Oh honey!

I'm so sorry you and your family have to feel this grief.

Keeping you all in my thoughts and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 14, 2007, 07:12:04 AM
Just some news today...got a phone call to say that my aunt passed away at around midnight. Lost for words right now. Please keep my mom and uncle in your thoughts....they're the one's that are going to have a hard time. My aunt is painless and at peace right now...

i am happy for your aunti hon,she had such a fight and has had so muchg pain,she finally has her peace!!
best wishes for you family,take care hon  :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 14, 2007, 07:57:48 AM
Just some news today...got a phone call to say that my aunt passed away at around midnight. Lost for words right now. Please keep my mom and uncle in your thoughts....they're the one's that are going to have a hard time. My aunt is painless and at peace right now...

i am happy for your aunti hon,she had such a fight and has had so muchg pain,she finally has her peace!!
best wishes for you family,take care hon  :-*

i couldn't express it better....i'm glad the ordeal is over for your aunt now and that she'll be in peace. and i hope your family will be ok soon as well. best wishes for all of you !
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on June 14, 2007, 01:45:08 PM
(((Nellie)))  My condolences to you and your family during this difficult time.

Around midnight, another angel got her wings.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 14, 2007, 04:32:01 PM
Just some news today...got a phone call to say that my aunt passed away at around midnight. Lost for words right now. Please keep my mom and uncle in your thoughts....they're the one's that are going to have a hard time. My aunt is painless and at peace right now...
(((((((NELLIE MOM and UNCLE)))))))

So sorry, sweetheart.  :'(
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 14, 2007, 08:25:54 PM
(((Nellie))) My condolences to you and your family during this difficult time.

Around midnight, another angel got her wings.

 :'( :'( :'( :'(.....yes Glenn,she deserved her wings...

Thank you all for keeping them in your thoughts

Nellie  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Caithness on June 14, 2007, 09:37:14 PM
Nellie,

Arms always round you and yours.

Love,

Malcolm
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 17, 2007, 11:40:50 AM
My best to you and your family Nell.  Sending big hugs your way  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 17, 2007, 02:25:28 PM
my mom and dad were here today.it was over two years ago that my mom was here. and it was about 4 months ago that i had seen her. unless they`ve removed the tumor and her thymus,there still is no improvement,which they had expected.she still needs weekly transfusions and her bonemearrow doesnt work.her eyes are very bad and she was as pale as my dogs.she has lost over 80 pounds in short time,she always had heavy overweight,her whole life. talked to my dad,when we went for a walk,that she is slowly fading away,but he denied part of it,and she also hangs on to something.Both of them are not ready to let go.
when they drove out of my street i knew it was the last time i saw them here together.... and i think mom knew too.i know from the way she looked at me. and i so hate it that we are not able to talk about it,it always stays on the surfacemjust small talk,just pretend nothing is the matter,sigh....  :-\
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on June 17, 2007, 08:02:29 PM
Conny... love...

I remember the last time my mother was here at my apartment. Nearly 4 years ago. I remember the last time I took her out for lunch, how she got out of my car then turned right around and sat down on the seat of her walker. She'd forgotten why she got out of the car, or where we were going. I laughed and told her "no, Ma, we're going into the restaurant, why are you sitting down already?". She laughed and said, "I got tired of walking, I guess!".

A little over a year later she died. Her body did, at least. Her mind had died quite a while before that. Brain cancer. Was "no one home", though the "home" still breathed.

Please talk with your mom as often as you can, Conny. The memories of your conversations will stay with you long after her house is gone.

My love to you, sweetheart, I'm here for you, you know that...
Warm hugs,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on June 17, 2007, 09:46:22 PM
Conny, I have not lost a parent, but have lost a spouse and, like your Mom, Rick and I both knew the inevitable. I am not sure which is harder,  to watch someone fade over a longer period of time or a shorter one. They are both tough.

Take Robs advice and speak to your Mom as much as possible even it it is only a few minutes. I realized Rick and I did not do that enough those last months.

I am sending all my love your way.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 17, 2007, 10:03:58 PM
thanks (((rob))) and (((linda))) that brought tears in my eyes again this early morning,for your loving and caring and for your stories.
sometimes it just aint fair. Its hard seeing such a tough lady ones totally fading away.het goal always was the do the NY marathon,and l;ast year after they found the tumor,she said oh if only thats the problem of all this,i maybe still will get there.
sometimes we do have a deep conversation on the phone,but you can count those on one hand. then she says she cant go opn anymore and i tell her to talk to the doc or other patients,but she`s so afraid to die,she keeps going on. i can only tell her then what i would have done. and that i would have stopped with the transfusions.but she keeps going,hoping they find a cure.....
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on June 18, 2007, 02:51:25 AM
((((((((((Conny))))))))))

Rob and Linda are right - make the most of the time your Mum has left. 

I spent as much time as I could with my darling Dad when he was dying, and I'm so glad of it, but even so I wish I had talked to him more.

I'll be thinking of you and your parents hon   :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 18, 2007, 08:26:26 PM
Hugs Conny.  I'm thinking about you  :-*

My dad has been slowly deteriorating after several small strokes.  He had some surgery last week and he is recovering well.  What is so difficult is seeing his mind slowly creep away.  His last stroke affected the speech center of his brain and when he gets confused he can't find the correct words.  Today he had a follow-up appointment to his surgery and he was so confused that he asked my sister to stay home from work and take him to the doctor (just 10 minutes away).  It hurts so bad to see him like this.  But what's the alternative?  Death?  So I ask myself, would I rather have him alive and only a shell of the person I once knew?  The funny thing is, I catch myself thinking I miss my dad and then I think - wait, I just visited him.  And then I realize that what I really miss is My Dad.  This confused, frail looking man has stole him.  :'(
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 18, 2007, 10:21:03 PM
thanks sarah, willl or at least try,cause my mom is very stuborn  ;) and does talk a lot but not about her feelings and such!

lydia,sorry to hear about your dad,this must be so hard for you too and for him i guess,frustrated that he isn`t his self anymore  :-\
take care sweets
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on June 19, 2007, 04:58:54 AM
...The funny thing is, I catch myself thinking I miss my dad and then I think - wait, I just visited him.  And then I realize that what I really miss is My Dad.  This confused, frail looking man has stole him.  :'(

Oh, that's so hard for you.  (((((((Lydia)))))))

Conny - my Dad was a great one for the fun chat but not so much one for the deep and meaningful conversation... ::)  But once in a while he did talk about the serious stuff too.  I hope your Mum can do the same.   
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 22, 2007, 12:15:51 PM
Thanks for your thoughts  :-*

You know, I read a lot of poetry and dabble in writing.  I wrote this after visiting with my dad about a month ago.  Hope you don't mind my sharing it here...

       The Warning

Before you let the red ember
of cigarette settle on your pant
leg without notice, and I gently
wipe the ash away, you were a
quick witted prankster and
belly laugh king

I look across the table,
worry at the mirror of your
slack face and the apple loosed
from its anchor falling with
a knock in an unseen corner

If I tell you time goes fast                                       
you won’t begin to understand.
To say the butterfly just flicked
his wings and an ant winked
these wrinkles on my face
might begin to show you

But that was told to me in
younger years and I too dismissed
the warning.  Now I sit as if my
head just settled on the door frame in
the back seat and you said
wake you when we get there.
And here I am stirring awake
with sleep lines on my face and
a serious need to piss
Title: Re: Caring for others with chronic illnesses
Post by: Caithness on June 22, 2007, 01:54:35 PM
The funny thing is, I catch myself thinking I miss my dad and then I think - wait, I just visited him.  And then I realize that what I really miss is My Dad.  This confused, frail looking man has stole him.  :'(

Lydia, you have my deepest and sincere empathy.

Both my Mum and my Dad had, and died as a consequence of, Alzheimer's disease.  I took care of both Dad and Mum 24/7/365 at home for 11 years...well, Mum for 7 years, Dad for 11 years. 

Early on, I had to learn not to take it personally and emotionally when their appearances and behaviours changed.

That was exceedingly difficult lesson to learn.

Like you I missed My Mum and My Dad.  Early on, I was almost angry with them for no longer being the magnificent people they were.  But I'd to force myself to recognise that it was time and complications and Alzheimer's disease that were stealing away my beloved parents.

Again, it was an exceedingly difficult lesson to learn, and an exceedingly difficult learning to put into practice, to wit, to feel anger towards the disease, not towards my parents.  Further, I'd to learn to focus on their care, not on their condition(s).  Easy to write, tough to do.

I think that if I HAD focussed upon their conditions, I might have gone quite mad.  The time for pondering all that had happened came after their deaths.  In a peculiar way, it was easier afterwards, to miss My Mum and My Dad, by refusing to be angry with them for their plight, which was not of their own making.

(((((Lydia)))))

Best wishes,

Malcolm
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 22, 2007, 03:18:50 PM
Thanks Malcolm - your words mean so much.

You are so right about the anger.  Sometimes I catch myself feeling angry with my parents but then I tell myself that they have no control.  Each of my parents lives (separately) with my two older sisters, so it is also easy for me to fall into a pattern of not visiting because it is so difficult to see them - I can't let myself do that either.  I try to keep the memories of their younger selves forward in my mind, but I fear once they are gone that the lasting memories will be my most recent memories of them.
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 23, 2007, 12:59:00 AM
lydia
great peom and ofcourse you can share that here!!
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 23, 2007, 06:29:51 AM
lydia, i'm sorry for the loss you're experiencing even before you "really" lose him....(((hugs)))

malcom, i can understand you very well....i feel the same about my grandmother, who also suffers from alzheimer's disease. sometimes i feel so sad and sorry for her and sometimes i just want to shake her and ask her what she did to that self-confident, strong woman she once was....especially when she's starting to get all paranoid and when she accuses us of wanting to hurt her or such...while all the time, you just want all the best for her. and then there are those special moments, when she seems so lost and afraid - when i just want to hold her all day and tell her that everything is ok.

alzheimer's disease is quite a challange - i'm hoping for a cure one day. i don't want to go like that.  :-\
Title: Re: Caring for others with chronic illnesses
Post by: jwm on June 26, 2007, 09:54:46 PM
Hi I am new here to this thread but I see from everyone here it certainly is not.
 My father had Alzheimer's and it was really hard. My mother cared for him the best she could she was 80 and he was 86. My sister and I would take turns and go and give my mom a break and stay for a few weeks a month. The sad part was when my sisters would talk about putting him in a home, I would freak out. My mom tried her best and when I looked at it from her point I thought she can't keep doing this, it was way too hard. I thought OK maybe it would be better for my dad and mom. Then I call it the fog would lift and he was almost like my father, the one I remember and remembers me. It was only for a bit no near long enough and then I would say no way. If the fog lifted when he was in a home, he would be so scared and lonely.

 In a way God took that decisions away from us and took a week after New Years. I was able to tell him I love him I am not sure if her understood but I felt that he did. My mom moved in with my sister and she took care of her until she also got sick. I went down everyday to take care of both of them. When my sister left us I took my mom home with me. She was bed ridden but her mind was as sharp as a whip. I cared for her for almost 5 years and her body just got tired and started to shut down, hers was peaceful.

 My mother in law was diagnosed about 4 years ago, and she seemed to be doing good. I offered to take her here with us, but her daughter moved in to care for her. It was like all of a sudden the lights went out for her. Last year she just couldn't do it anymore and it wasn't fair to my mother in law. She is now in a home and she is just a shell. My husband will not go see her he said he lost him mom a few years ago. She doesn't know anyone and he just can't bring himself to go and see her. I am not pushing him to go because he really just can't do it. I go and I cry from the time I get there to the time I get home. She was the most independent, strong, loving person you could have ever met, and now it just breaks my heart. My husband won't even sit and talk about her, or when I try to tell him how she is and everything he gets up and leaves.
 I am not sure what to do for him, I know I still am haunted by the look on my fathers face almost all the time and is really hard to think about what he must of been going through. I never really believed that he was gone long before he passed. He passed with a massive stroke so he wasn't suffering anymore. We are now just waiting for Mother in law to finally not suffer any longer but as long as we have her with us it good.

 I also cared for my sister with Breast cancer and it was the hardest thing I have ever done. She was only 50 and when she was diagnosed she weighed maybe 200 pounds give or take a few. When she left us she was only 80 pounds and she had shrunk 4 inches. She also developed bone cancer and brain cancer, but while she was here we fought so hard to make her happy and comfortable. I took about year and a half off of work to care for her. Watching her disappear like that was so hard, she was the strongest and good natured person I had ever met. We would talk about when she would leave and what she wanted me to do. I don't know where that strength came from but I guess I dug really deep and it was there when I needed it. I would have a total meltdown when I was alone but while I was with her I was strong for her.

 She always said she was so worried about me and what will happen to me when she leaves, she knew so well that I wasn't fooling her at all. I had to make her feel that I will be OK because we needed to use all out powers to help her fight. I don't regret one second I spent with her, even though it was so hard I wouldn't have let it be any other way. When she left I fell completely apart, but I had my mom now to care for so I really had no time for me. I was stretched so thin that I felt there was nothing left for me. I now have my hubby and my sisters girls and her grandbabies to care for.

 When my mom passed I didn't know what to do with myself, I didn't want to do anything or go any where because when she lived with us we lived on schedules and didn't go anywhere unless I had a sitter for her, I would not leave her alone. Now I had all this free time could go anywhere, anytime. I felt guilty because I can do all these things had my freedom, but at what cost. I had a hell of a time letting myself off the hook, and start going out again.

 I know I have rambled but I am just glad to be able to get this out and get my feelings out with people that know just what I am trying to say. Oh yea when my mom passed she was in the hospital and the nurses and the women that were caring for her up on the palliative care unit, told me what a good daughter I was and how I was a rare breed. I got embarrassed because I didn't think I was doing anything special, I did what I had to do, she raised me and changed my diapers and cared for me in good times and bad, so it was only right that do the same for her, and I know I did make a difference in her last few years. She was happy and comfortable and with her family. My oldest sister always just sat back and let my sister Joanne take on the responsibilities and she never seemed to want to step up. Her loss that is all I can say.
 Thanks for listening. 
Wendy
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on June 27, 2007, 06:40:26 PM
{{hugs}} Wendy.  It sounds like you have been through a lot. 

I hope your strength continues to be a forward motion in your life and I hope your memories continue to be a comfort to you. 

No matter where our friends and family go, we always carry them in our hearts and minds and nothing can take that from us.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on June 29, 2007, 10:21:32 AM
(((hugging))) you Wendy...

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: conny on June 30, 2007, 02:29:14 AM
((wendy))) you went trough a lot but are such a strong lady
take care
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 30, 2007, 05:32:30 PM
well folks, this is one thread i didn't guess i would be in need of... but here i am.

as some of you know, my mother, often the bane of my existence, finally got the courage p to leave the place she had lived with my father the last three years of his life, and the next 5 of hers, and come back to the warm deep south. 

it would appear that she has waited just a bit too long, and some form of memory loss/dementia condition has begun to overtake her.  my mother was never the most reasonable person to deal with, but all the personality traits of the onset of dementia are now my daily fare, 24/7, as malcolm put it. 

she had been getting by and covering up by using rote recall, and doing everything just as she had previously (more or less).  with the move, that route is gone for good, and the resulting bewilderment is all but intolerable to her, and my best efforts to accommodate her needs rarely satisfy for more than a few minutes.  her damn cats are in their final excesses too, and one requires twice daily thyroid medication and the other cant pee in the litter box for some reason.

i thought going into this arrangement that i probably wouldn't hang around too long, knowing our history, but i was one among many from whom she hid her incapacity, and i now find she cannot live alone.

oh yeah, and when she gets frustrated, she hits.

she currently has no primary care physician (i may have that taken care of, finally) or any other medical or psych supports, in place, and i am having to locate those, while trying to feed and placate her

and i miss my good cat.   :'(

i am in way over my pay grade here....       
Title: Re: Caring for others with chronic illnesses
Post by: Dal on June 30, 2007, 05:50:13 PM
That's hell, Jack.
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 30, 2007, 07:47:08 PM
funny, dal. i was thinking yesterday, my life is now officially hell...

in AA parlance, we say "this too shall pass".  i doubt soon enough for me.
Title: Re: Caring for others with chronic illnesses
Post by: Dal on June 30, 2007, 08:49:30 PM
Well I'd come over and give you an afternoon off occasionally but Florida's a mite far for me.
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 30, 2007, 09:45:09 PM
thanks dal... :-*

i'm working on respite, but they are a ways down the road i fear. doctors, transportation, pet needs, legal issues, banking and additional furniture to finish the apartment lead the list(s).

jack
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on July 01, 2007, 02:41:41 AM
So sorry to hear that Jack.   
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 01, 2007, 02:45:52 AM
oh boy jack that really sounds serious!! sorry i cant be of any help
ypu take care buddy!  (((jack)))
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on July 01, 2007, 06:32:00 AM
Jack, both you and your mother are in my thoughts and prayers.

Title: Re: Caring for others with chronic illnesses
Post by: jack on July 01, 2007, 09:20:54 AM
conny, fritz and sarah...

thanks all.  its only a couple of weeks so far, but i had been working on moves for months coming up to this, and the awareness blindsided me, both of her condition, and that i am stuck in it until such time as she requires higher levels of care.  it should improve a bit as i get such helping agencies as there are available lined up.

tomorrow morning another trip to the vets first thing, and then ferry mother to a new primary care physician.  after meals and "emergencies", that should about be the day.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on July 01, 2007, 09:23:38 AM
Jack...

I'm sorry to hear that things are turning out so difficult for you... I know you remember the very difficult times I went through as I was taking care of my mother, how badly I wanted it all over. She sat, quiet most of the time, in my livingroom as I worked as hard as I could to make sure she had remembered taking her pills, checking her blood glucose levels and taking her insulin shots. On more occasions than I care to remember she'd forgotten to take her pills, forgotten whether or not she had breakfast or lunch while I was sleeping, whether or not she needed to use the toilet. She'd also refuse to take a shower. The misery she lived through for her last months was horrible for her, as well as our family. Came a point where I literally prayed (and I sure as sh*t ain't of the relgious sort!), that "god" would just take her from us as all of us were in "hell" and wanting so bad out.

When Mom did go, though our relationship had soured a number of years prior, I was affected in a way I never expected. Hardest experience I ever went through.

Jack. Please try to laugh with your mom when you can. Laugh under your breath if you have to. Know that before you know it you won't be having to deal with the temporary hell you and she are living in now...

Warm hugs, Jack, lots of them,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 01, 2007, 10:50:52 AM
believe me, rob, i am rememberiing your experience, and that of others of my friends.  i wont stick it out as long as you did, i am quite sure, but i am going to give a go at making up for all those mother's day cards i never sent.  i am trying to get her out and about, as we are conveniently located on a bus route, and the weather, as you know, is gorgeous year round.  she had been trapped inside up north for so long, she has forgotten how to just go outside.  this environment is much more conducive to a pleasanter experience than yours was.  more womblike.  and the apartment i found is very bright and cheery.  the cats are both a major obsession for her, and a great deal of work, as neither are healthy, nor are they particularly well socialized.  they make a great deal of work for her, and as much as she will be grief stricken, it will be a mercy when they pass.  i expect we will be dropping upwards of a grand on vet bills this month.

and i have no medical insurance ::) :-\
Title: Re: Caring for others with chronic illnesses
Post by: brian on July 01, 2007, 03:01:01 PM
I am thinking of you Jack. It is just a year this week since my Mother passed away. My sister did most of the caring, I just relieved a few times per week. Also Mum was mentally active until the last few days, just physically needed constant help. I do hope you can get assistance to give you a break.
While it was very difficult at the time, it is comforting to know now that we were there for her until the end.
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 01, 2007, 07:39:05 PM
thanks to you to brian.  i was kind of hoping that there would be a chance for some sweetness to our relationship that hadn't been there for a very long time, but that apparently was not to be (although i do hold on to a faint glimmer of hope).  my mother has been a very negative person, and although no one casually acquainted with her would know it, a very unhappy person.  with the onset of dementia, that attitude and behavior has been amplified greatly.  i have taught myself, with the help of many positive people to be relentlessly upbeat.  spending time with her, and her eternal negativity is like an endless mental root canal.  think eeyore on hallucinogenics, or marvin from the hitchiker's guide to the galaxy.

of course the more i try to describe my current situation, the more i sound like her  ::) :(.

i had a good alanon meeting tonight, and really did remember something i learned long ago.  if i really believe the things i believe in, everything will turn out for the best.  i don't really have the capacity to know the ways of karma or god, but in time, the rewards will be revealed.  and i will be able, with the help of friends and a greater power, to handle all of it.

god, grant me the serenity...etc

jack
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on July 08, 2007, 09:29:41 AM
Big hugs to you Jack.  I wish I could offer you more than that or some bit of wisdom that would make it all seem trivial, but it sounds like you have your head in the right place and are doing what's best.

I wanted my mom to move in with me when her memory started to go - my biggest fear was that she would be even worse in a place that she wasn't familiar with.  As it turns out, one of my sister's ended up moving in with her - of course that brought a myriad of other problems with it (namely her two grown sons).  But I have learned that there is so little in this life that I truly have control over.  One thing I know I can control is my reaction to these things - and I have adopted the attitude of trying my best to remain positive through it all.

As you say, it's difficult to be positive when you spend your days with someone so completely negative.  I worked for a time training adults that worked with mildly to severely autistic and psychotic children.  One of the things in the training manual was to see the humor in the things they did.  At first I was shocked - it seemed like such an uncaring thing to do, to laugh at their predicament.  But as time went on, I realized that you really need to do this to keep yourself from going completely insane.  So if one of them was found in the bathroom wiping their feces all over the wall, we wouldn't get angry.  We would just smile and think, imagine! being that carefree and unknowing that you could get enjoyment out of fingerpainting with your feces!

So what does all of this have to do with your mom - I dunno.  Try to see the humor in her cat obsession and her strikes at you, keep up with your meetings because you surely need a positive outlet and someone sane to talk with.  I will be thinking about you and praying.

Lydia
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 08, 2007, 08:05:18 PM
thanks lydia...

i went to a meeting last night i haven't been to for a while.  (we rented a car for the weekend for chores).  i never noticed before, but they read this dopey paragraph from something, i don't even know what, and they call it peace of mind.

what is says, briefly, is that the amount of peace of mind you take away from a situation is directly proportional to the peace of mind you bring to it.  i really haven't been doing that good of a job contributing to my mother's peace of mind in any way she can appreciate it.  i think its a guy thing.  we go after the mechanics of a situation rather than try to give the other what they are actually asking for.  that is especially difficult for me in this instance because little shy of self immolation might suffice, and even that would be met with disapproval of the abandonment inherent in the act.

i think lovely and  someone else helped me out over on the mourning thread, talking about missing the mother they REALLY remembered., and i realized that MY mother really hasn't been there since my father's death.  she had put ALL her faith in him, rather than in any god or man.  his passing destroyed her world, and she lives on only because it was so ordered, and she wouldn't displease him by giving up.

KNOW i remember the vivacious intelligent caring woman of many years ago, and i can mourn her passing, as no flashes of her remain in this fearful negative shell, at least none that i can find.

my best wish for her is that she can relax into a childlike existence that i have seen some memory impaired patience arrive at.  each day a delight of new things, no matter how oft repeated.

in the meantime...
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 11, 2007, 08:54:42 PM
Not really the correct thread for this.
Just needing some thoughts and prayers for my oldest sis Nancy who is in the hospital with shortness of breath and rapid heartbeat.

She has had a heart murmur all her life and the last few years the mitral valve has been a problem. After all the tests have been done it has been determined that one side of her heart is 3 times the size it should be and that the valve itself is totally destroyed. Her lung capacity is affected as well.

She will have to have surgery to replace the valve, which she initially said she was not going to have until her family doctor told her that she had 2 years tops, with no quality of life. She will be seeing the surgeon next week.

Thanks for listening.

Linda
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 12, 2007, 01:06:08 AM
fingers crossed for your sis linda!!!! will be thinking of her that all goes well  :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 12, 2007, 01:20:20 AM
Thanks Conny.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on July 12, 2007, 05:16:20 AM
*send prayers*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on July 12, 2007, 05:39:30 AM
Valve surgery - sounds pretty intense.  Thinking about you and your sister Linda. 
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 12, 2007, 09:52:26 AM
Thanks Chuck and Lydia. I will pass on your thoughts and good wishes to her.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on July 12, 2007, 03:23:15 PM
My choir and I are praying for your sister, Linda, as well as all others in the Forum with health concerns.

Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on July 13, 2007, 12:07:44 AM
Linda, thinking of Nancy and all your family.  Hope your parents are doing OK.

Seems so many of us here have a heavy emotional load lately with our loved ones.  Prayers and strength to each of us.  It is a tough part of the journey.
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 13, 2007, 10:39:07 AM
you can say that again, glenn... but don't.  :-X
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 13, 2007, 10:04:26 PM
Thanks so much Glenn and Fritz.

What you say is very true about so many.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on July 17, 2007, 06:09:41 AM
Just wanted to check in...

Linda, how is your sister doing?

Jack, how are things going with your mom?  How's your sanity holding-up?  ;)
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 20, 2007, 04:26:14 AM
since you ask...

i made it yesterday to my first alzheimer's (and related disorders) support group meeting.  i was one of two guys there, and the other was a paralegal gathering training info.  i don't know if that can be taken to mean anything, but i thought i would mention it.  they had a presenter as well as a facilitator and i got a petrifying glimpse of all the different legal and medical things i would have to become familiar with should i have to walk this road with my mother for a while.  a veritable circus act of rigamarole to be juggled and learned.  legal terms i have never heard of, and some of whichi had only the vaguest concept. federal,  state, local and charitable agencies all with competing requirements offering a hodgepodge of partial service, with little in the way of umbrella case management.   

unless you are or have navigated it yourself, you can never understand the pressures brought to bear on the caregivers of dementia sufferers.  and it can go on for years.

i have come to realize that my extended pseudo family is comprised of guys roughly 30 years younger than myself, most, by dint of family and/or hard work pretty well fixed, in the prime of health, and possessed of excellent life competency skills (once they sober up).  they are more than a little impatient with my overwhelmed dithering, and my physical limitations.  i am, for pete's sake, a senior citizen in my own right, and not the most patient and tolerant one at that.  i get physically and emotionally and spiritually fatigued a lot sooner they they might, hence accomplish far fewer things a day, and not always the most important ones.

oddly, as i have stated somewhere, just about any random person over 50-55 has a far better idea of the demands and stresses and is FAR more supportive and understanding.  the experience of a loved one with memory disorders is more widespread than i knew.

at least i have begun the process of enlisting assistance to share the load.  this is way deeper into grown up territory than i have ever ventured, of that i am certain, and way deeper than i had ever hoped to go.

one day at a time...

jack
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on July 20, 2007, 07:13:58 AM
it is great for you that you went to get help, jack. you will need it. having a grandmother suffering form alzheimer's myself, i know that it is IMPOSSIBLE for one person alone to carry the whole burden. especially since you are alone. get as much help as you can, especially with everyday stuff like cleaning and such. it doesn't mean that you don't care for your mum. but you do much more for her if you spend less time with her but then attend fully to her needs than if you are together with her all the time, but impatient and angry (and you WILL get angry, i promise. i love my grandmother to bits, and sometimes i just want to hold her in my arms forever, but there are also times when i could strangle her, for example when she hides important stuff like keys and documents and then forgets where they are hidden. it is only human to sometimes have to restrain yourself !  ;)).
alzheimers is quite a challenge, and getting all help that is possible is the best you can do !  :)
Title: Re: Caring for others with chronic illnesses
Post by: All4one on July 20, 2007, 08:50:11 AM
Jack, before the writer ( philosopher, college professsor ) Iris Murdoch died, with Alzheimers, her husband John Bayley wrote Elegy for Iris. Reviewers spoke of the love and commitment he expressed - and how honestly he also expressed the stress, his pain,the small irritations and even the occasional rage he felt as he cared for her.
I remember how he described seeing his 'purple' face in the mirror, how angry he became once when she watered the plants, then watered them again, and again, and again...
Title: Re: Caring for others with chronic illnesses
Post by: Caithness on July 20, 2007, 08:50:40 AM
Jack, if I may.

unless you are or have navigated it yourself, you can never understand the pressures brought to bear on the caregivers of dementia sufferers.  and it can go on for years.

How right you are, Jack.  Unfortunately, there are fewer resources available now, at least in rural areas, than there were in 1994, in which year I began taking care of my parents, both of whom had, and died as a consequence of, Alzheimer's disease.  As you mentioned, such resources/agencies as there are, have different criteria for assistance, and it is enough to drive one around the twist navigating the 'system'.

If you will indulge me with a personal timeline.  My James died suddenly and much too young (39) in Scotland on 23rd November 1993.  Exactly 4 months later on 23rd March 1994, the elder of my sisters, Roberta, died suddenly and horribly and much too young (45) in Texas.  At my sister's funeral in Houston, my Mum had a massive stroke.  Immediately Mum slumped over, I knew my place would be here, for the duration, however long that might be.

At the risk of sounding cold and calculating, I'd to move quickly despite grieving so much, in order to put all legal matters in order (and to put all legal documents in a safe place).  Then I'd to search out all available resources, all the while looking after Mum and Dad (as I wrote before, 24/7/365).  For a time, there was a home health care organisation (Country Nurses and Hospice) available to lend a hand, but soon enough CN&H, went out of business, owing to state and federal (read: Social Security) changes.  After the CN&H went out of business, I was left with 2 alternatives:  to warehouse my parents in one of the godawful East Texas 'nursing' homes, or look after them myself.  For me, it was a 'no-brainer': to care for them at home.

Fortunately, I'd experience with nursing during my years in Africa, and my surviving sister was an RN, so I called upon my experience and my sister to teach me everything I needed to know.

After James died, my parents, my sisters and I drew up living wills, in which each of us specified "no extraordinary measures", and in the case of my parents "no geriatric warehousing, please" unless absolutely, medically necessary, and even then "no extraordinary measures".

I do not know where you live, Jack, but apparently there are more resources available than there are in rural Texas.  Despite the aggravation, confusion, time required, and conflicting criteria, make the most of the assistance available.  Apparently this is what you are doing.

at least i have begun the process of enlisting assistance to share the load.  this is way deeper into grown up territory than i have ever ventured, of that i am certain, and way deeper than i had ever hoped to go.

It is not impossible to look after a parent or parents oneself, but there is a high price attached thereto.  A physical price.  An emotional price.  I took care of Mum for 7 years, Dad for another 4 years.

Those on the forum that I have met in person, to wit, "paintedshoes" and "amiennis", could testify with respect to the price that was paid.  I look dreadful and feel terrible, physically.  Mind, I would do it all again without a second's hesitation, but, Jack, make the most of whatever assistance is available, inscrutable and time-consuming as the methods for obtaining such assistance may appear.

As you write, "one day at a time", keep breathing in and out, one foot in front of the other, bow your neck, press on and obtain all the assistance that is available.

All the best,

Malcolm
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 20, 2007, 04:59:37 PM
god...

you guys are terrific.

don't worry too much about me being selfless; it isn't my nature.

my disconnect was mainly from the precipitous nature of the realization.  she hid it well.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on August 13, 2007, 02:27:54 AM
Just a quick note and update.
Please keep my sister Nancy in your thoughts and prayers tomorrow (Monday 8/13) as she is having her heart surgery.
She is in good health for the surgery despite the heart valve issue.

Oh and my mom is doing better, at least sounds and talks better.
She and my dad are still living in an armed camp however.
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 13, 2007, 10:09:26 AM
sure will do linda,my thought are with her

just quick update from my mom as well.
somehwere in september,they wait till i get back from the US, my mom os getting a treatment that could be life treathening(people have dided during it),but i could also give her bone mearrow the up beat its needing. she`s slowly sliding away anyway,so its a chance.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on August 13, 2007, 05:22:11 PM
Conny and Linda, you and your loved ones are always in my prayers and thoughts.

Title: Re: Caring for others with chronic illnesses
Post by: jack on August 13, 2007, 07:20:32 PM
thinking of you guys as much as i can in the midst of my own nightmare.

 i can't even give you a progress report from here because the situation changes moment by moment and day by day.  neurological testing is upcoming, and i am trying to get the legal assistance i need.  who knew there was a separate law specialty just for elder concerns.  take my word for it, we ALL need to look into it.

still no supporting helpers nor any case manager to oversee the process, one man band.

jack
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on August 13, 2007, 07:32:10 PM
Jack, you and your mother are also in my prayers and thoughts.

Title: Re: Caring for others with chronic illnesses
Post by: whiplash on August 13, 2007, 08:12:52 PM
Linda, I will keep your sister in my prayers.

Conny, I am hoping the best for your mom as well.

Jack, well I know a little what you're dealing with.  After allowing my sister to move in with and "care" for my mom for the past 1.5 years we (I have 4 siblings) finally decided to intervene.  Needless to say, my mom is in debt and her house has been trashed by my sister and her sons.  So we scooped up Mom and she is now living with me.  She has dimentia and someone needs to be with her all of the time because she gets easily confused.  So Joe and I will share the load and are lucky enough that Mom can go to the popcorn shop with Joe three days per week. 

So sorry you have no help Jack *big hug*.  After just two weeks with my mom - I can't imagine not having Joe to look to for help, support, or just a good giggle. 
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on August 13, 2007, 08:20:36 PM
Thanks for the wonderful thoughts and prayers for my sister.
She came through the 7 hour surgery well. She will be on a repirator till tomorrow and in Intensive Care till Wednesday and in a clean room to decrease the risk of infection.

The news is that the surgeon was not able to repair the valve, it was too destroyed, so he had to put in a mechanical one. The problem with this is that she will have to be on Coumidin for the rest of her life. I know this is a small price to pay, but I know how she will react to this. She is very stubborn.

Once again thanks to all of your support.
Title: Re: Caring for others with chronic illnesses
Post by: Nax on August 14, 2007, 06:12:21 AM
That's real good news for your sister Linda, the friend we are staying with this weekend has had this operation and the results realy have been amazing, he is in K's walking group and he regularly does 16 miles in a single stretch.  He's the guy who introduced me to electric soup (extra dry martinis) and will be putting a few away this weekend. So as you see life can really gt back to normal, if not better.

Thinking of you too Conny and Jack.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on August 14, 2007, 08:30:50 AM
So happy to hear that the surgery went well Linda.  I will continue to pray for a speedy recovery.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on August 14, 2007, 03:37:27 PM
Glad to hear that things are working out reasonably OK, Linda.

Title: Re: Caring for others with chronic illnesses
Post by: killersmom on August 14, 2007, 04:59:59 PM
Thanks so much everyone, She got out of intensive care today, one day early, so that is a good sign.
I know that she will do very well and feel so much better as the doctors told her she had been sick for a long time and did not know how she was still up and about.

She'll grouse about the coumidin, but I'll just keep reminding her of the alternative.
Thanks again for all your thoughts and prayers.
Linda
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on August 15, 2007, 02:26:00 AM
Heartfelt thoughts and prayers for you all

Sal    ;D
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on August 19, 2007, 11:30:43 AM
Points to ponder when living with the elderly...

You know how a picture puzzle, fresh out of the box, has some pieces that are already together from the factory?

I say these are bonus pieces (yippee!) and you keep them together and count your lucky stars!

Mom says you have to separate them and mix all of the pieces before you start.

Thoughts?  ;D
Title: Re: Caring for others with chronic illnesses
Post by: jack on August 20, 2007, 11:32:35 AM
Points to ponder when living with the elderly...

You know how a picture puzzle, fresh out of the box, has some pieces that are already together from the factory?

I say these are bonus pieces (yippee!) and you keep them together and count your lucky stars!

Mom says you have to separate them and mix all of the pieces before you start.

Thoughts?  ;D

i must be elderly... i vote with mom.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on August 23, 2007, 08:06:31 PM
Just checking in and hope everyone who is dealing/coping is doing as alright as possible.  I do read all of the posts and think of, well, all of us paddling this boat very often.

My Mom is still hanging in there, doing rather well physically, not so well mentally.  We've had some interesting episodes lately, but today was smooth sailing (nice change).  Thankfully, we have found 24/7 sitters she can get along with.  But, in a nutshell, what we have here is a single patient nursing home.  Or asylum.  I'm not real sure which.  Maybe both. 
Title: Re: Caring for others with chronic illnesses
Post by: jack on August 23, 2007, 08:14:20 PM
Just checking in and hope everyone who is dealing/coping is doing as alright as possible.  I do read all of the posts and think of, well, all of us paddling this boat very often.

My Mom is still hanging in there, doing rather well physically, not so well mentally.  We've had some interesting episodes lately, but today was smooth sailing (nice change).  Thankfully, we have found 24/7 sitters she can get along with.  But, in a nutshell, what we have here is a single patient nursing home.  Or asylum.  I'm not real sure which.  Maybe both. 
i can't begin to tell you how much i envy your improved situation.  very slow going here.  the only real forward movement is on the medical end of the spectrum. still a very fried live in caregiver here.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on August 26, 2007, 09:41:54 AM
((((( Jack )))))
Title: Re: Caring for others with chronic illnesses
Post by: jack on August 26, 2007, 11:38:07 AM
((((( Jack )))))
thanks for the hug.  i picked it up on a seriously bad day.

i do have a case worker for somewhere, i don't even care where, coming tomorrow.  he should be able to assess the situation and give some plausible input as to choices and options.  i am looking for a place to rent to retire to, as the 24/7 is stressing me really badly.  i am functioning well below capacity and short tempered and on edge all the time.  constant headache and i suspect an ulcer can't be far off.  maybe if i can go part time i can accomplish more and save my health.

getting ready to shower and grab a bus to a mall, just to get away from the house for a couple hours.  its times like these it sucks not having a car.

jack   
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 29, 2007, 12:51:14 AM
looks like i got back in time from my trip.mom was taken with an ambulance to hospital yesterday with heavy breathing problems.
she`s on oxygen and they are running all kind of tests.weird thing is that her lungs and heart are ok.
she did have infections in her urine and intestants and blood isnt ok either.so she has to stay,and hope for the best.
hopefully i`l be able to visit her over the weekend.
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on August 29, 2007, 12:26:21 PM
looks like i got back in time from my trip.mom was taken with an ambulance to hospital yesterday with heavy breathing problems.
she`s on oxygen and they are running all kind of tests.weird thing is that her lungs and heart are ok.
she did have infections in her urine and intestants and blood isnt ok either.so she has to stay,and hope for the best.
hopefully i`l be able to visit her over the weekend.

{{{{{Conny}}}}}   {{{{{Jack}}}}}

Sal     ;D
Title: Re: Caring for others with chronic illnesses
Post by: jack on August 29, 2007, 07:44:25 PM
conny, sorry to hear that.

rough day over here.  mom got nerved up early and stayed that way all day.  i guess its like feeling like something bad is just about to happen, and you could prevent it if you just did or said the right thing.
and she has a vindictive streak that is unbelievably out of character.  i have contacted my landlords, or their property manager with a suggestion that i rent the vacant apartment next door on a month to month basis, and i am going to go look a a small cottage in the older shabby chic part of ft myers.  tres elegante, and very norma desmond in the tropics... :o 
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on August 31, 2007, 12:52:24 PM
Just heard that our good friend Rodney Giles took sick at the end of a trip to Colorado and Wyoming, and is now in a hospital in Boulder.

http://bettermost.net/forum/index.php/topic,12738.0.html

I know he'll appreciate your healing thoughts and prayers.

Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 17, 2007, 05:01:54 AM
Just checking in and wondering...

How is your mom Conny?

Linda, how is your sister's recovery going?

Jack, how is your mom and also how are you holding up?

Hugs to all... (http://i56.photobucket.com/albums/g166/nopin/smiley_hug.gif)
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 17, 2007, 05:59:42 AM
lydia youre always so thoughtful,thanks for asking!
Mom has recovered from her lungproblems and is at home now and doing a bit better then before and waiting now for the call for the specialist for the other threatment.
Title: Re: Caring for others with chronic illnesses
Post by: jack on September 18, 2007, 08:38:03 AM
likewise, lydia.

the dementia combativeness gets worse, the meds situation is unnerving, and i am pretty much on hold for the rest of the month until a conference with her memory loss medical team.  we should get some concrete directions then, and i don't think she is going to like them... at all.  the shite will hit the aerating blades.

i did get away from the situation for a couple days... almost.  got to san fran for quick visit and base touch with friends, not nearly enough time with any of them, but hugs and eye contact.  unfortunately, mother nature decided to play a joke...

http://www.google.com/search?source=ig&hl=en&q=tornado+cape+coral&btnG=Google+Search

quite unbelievable, really.  she fared well, but i had to get on the phone to call local friends and the home care people i had looking in on her.  they acquitted themselves well.

i'm back now, and wishing i was still in california among friends.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on September 20, 2007, 08:45:12 PM
Thanks for the update, I'm keeping you all in my thoughts and prayers.

I thought I saw your face in one of those SF pics.  So happy you were able to get away for a bit Jack - you need it to keep your sanity.
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 19, 2007, 04:40:00 PM
time for a brief update...

still hard times in the tropics.  as i have mentioned elsewhere, there is a happy ending just down the street, but i have my doubts we will ever get there.  my mother's fears and stubborn streak are very likely to prove its unravelling.

i found out, by luck and investigation, that there are a number of excellent assisted and independent living senior facilities in the area, both affordable, and REALLY nice, and frankly, i would be delighted to live in the one i am going to bring her to.  its a former mariott senior residence, and it has ALL the amenities, and just below the surface, there are senior support services of every kind.  all meals and transportation are provided, all apartments have a view overlooking gardens or the caloossahatchee river... and on and on.  there is even a beauty parlor that specializes in that damn old lady perm that she seems to want.

(http://www.sunriseseniorliving.com/image_store/sif21336.gif)

she is adamant that she can and will live on her own, preferably with me dancing attendence, despite the fact that we have bitter exchanges, and that i am exhausted now all the time.  pray for her that after i have shown her this alternative, and explained with the help of a social worker, that her alternative may well be to have her care taken over by the state of florida with or without her consent, that she goes along with the program. 

i fear that she is about to create a most unfortunate future for herself.  i have however done my best, and moved mountains.  there is no more i can do.
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on October 19, 2007, 05:33:06 PM
Jack, I'm so sorry to hear that things are still such a struggle for you.  I hope life gets better for you very soon.

((((((((((Jack))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 20, 2007, 01:27:42 AM
jack i hope this is gonna work out fine for bith you and your mom!!
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 20, 2007, 02:36:18 AM
thank you both...

funny, when you know a large enough group of people, at any given time, somewhere, someone is going through something.  and it is the human condition that we all get our turn.  i certainly had no idea a couple of years ago i would find myself in this situation.
Title: Re: Caring for others with chronic illnesses
Post by: Brokeback_1 on October 21, 2007, 01:38:03 AM
I'm praying for you jack.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 21, 2007, 09:26:33 PM
As am I, Jack. You and your mother, as well as several people and their relatives, are on my daily prayer list. And many other members of the Forum. And you do not need to believe in the efficacy of prayer for it to be effective, dear Jack.

Title: Re: Caring for others with chronic illnesses
Post by: jack on October 21, 2007, 11:40:10 PM
fritz, after 24 years in AA, i may not have a very clear idea of god, or a higher power, but i have no doubt as to the efficacy of prayer.  i believe those thought and prayers become a source of strength, readily available for me and mine, in this case, to draw upon.  prayer might not change events, but it can strengthen hearts.

this is SUCH a day to day, hour by hour, thing, i really appreciate the words and prayers y'all leave here.  a little refuelling station for the soul.

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on October 22, 2007, 10:26:43 AM
Jack

As you are well aware, my thoughts are with you on a daily basis, knowing what a hard, uphill struggle you have in front of you.

Hugs

Sal     :-*
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 22, 2007, 02:44:12 PM
Jack,

I'm rooting for ya also.....good luck to you and your mom.
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 22, 2007, 07:15:20 PM
Thinking about you and your mom Jack.  That building looks fantastic and the services sound just as nice.  But as one dealing with a mom with dimentia, I know they don't always see the common sense and are many times guided by old fears and old ghosts.  I'll keep my fingers crossed.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 22, 2007, 09:04:35 PM
Thinking about you and your mom Jack.  That building looks fantastic and the services sound just as nice.  But as one dealing with a mom with dimentia, I know they don't always see the common sense and are many times guided by old fears and old ghosts.  I'll keep my fingers crossed.  :-*
you are so right!!

i have done my best to counteract this by creating a brutally harsh contrast, making it clear that no amount of emotional blackmail will keep me locked in, and that should she elect to refuse the posh digs, it is likely the state of florida, department of child and family services would remove her and place her at a place of their discretion, in all probability the "nursing home" situation she most fears.

i have made some reference to this so far, but if she sees the other and still refuses to consider it or another like it, the social worker will back my play.  my investment in the one i mentioned is based on the fact that they have internally the full spectrum of care to full nursing.  she need never be relocated, avoiding that trauma.

i dread the mention of price, because although i find it a bargain, it is more than twice any rent she has ever paid.

and thank you all for your support.  it is the next best thing to getting to a support group, whic is near.y impossible for me to do right now.  i can actually feel each of you all taking a bit of this from me. 

this week we go look...
 
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 23, 2007, 04:51:02 PM
A couple months ago my aunt died...now my uncle is...her brother. My parents are going to Puerto Rico to visit him..for the last time. He's at home now,just like my aunt was....God,what a fucken drag....my mom and other uncle that lives here think that they're next,since they're all related...jeez....what a way to think,but you can't really blame them...

They're at that age now...what are you going to do?....not much I guess...but keep him in your prayers,will ya?

Thanks

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 23, 2007, 06:44:43 PM
Most definitely, Nellie.

Title: Re: Caring for others with chronic illnesses
Post by: conny on October 24, 2007, 12:06:43 AM
will do nells. we go when its our time he!
hang in there hon  :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 24, 2007, 06:16:41 PM
Conny!  How are you and how is your mom doing?
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on October 25, 2007, 02:00:55 AM
Nell, hugs to you and your family  :-*  :-*

Jack, when is your visit with your Mum?
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 25, 2007, 07:08:20 AM
Conny!  How are you and how is your mom doing?

thanks for asking hon

mom is kinda stable acutally! she hasn`t been needing bloodplates in two month!! so thats a bit of good news,cause that means her bonemearow is working a bit.she did need some blood cause the HB level was low,but there is progress.they only don`t know yet what is causing that! she has lost lots of weight,but thats sort of stable for two weeks now too,so hopfulyy it satys that way,cause she lost 80 pounds in a year and thats a lot.she only weights 155 now and she has weight over 200 almost all her life.

i am not doing so good, last week they found out my potassium level was low again and on that my bloodpressure was very high.it explaines why i am so tired and have these daily heachaches and migraine for 4 weeks now!
i`mn having pills and have to come back for new bloodpressure measure next week and had to quit my liquorice tea,which i`m very sad about,cause i loved drinking that, but its very bad for high bloodpressure and for the potassium level.
on top of that needed a  ruthcanal this week  ;) so nope am not feeling happy and am totally exhausted after the dogwalk,but will keep on doing that!  ;)  :)
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 25, 2007, 08:02:36 AM
Nell, hugs to you and your family  :-*  :-*

Jack, when is your visit with your Mum?
not sure what you mean by visit, sarah.  my mother is living with me currently.  visits that i have referred to are to senior living communities, one in particular.  she is going to get her first look at the fancy hirise tomorrow for lunch.  she very much wants to just stay in the nice apartment i found, but the dementia and accompanying rages and paranoia are making it impossible for me to be a primary caregiver.  it is rarely a good idea under the best of circumstances, and given income and transportation limitations, these are far from ideal.

wish me (us) luck...

Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on October 25, 2007, 11:59:12 AM
I realise that we use 'visit' a bit differently in the UK! 

I did mean when you were going to visit the new places with your Mum, so you gave just the right answer.  Keeping my fingers crossed for you.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 25, 2007, 02:57:06 PM
(((((((((((((((((((((((((((((((((((((((((( CONNY ))))))))))))))))))))))))))))))))))))))))))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 25, 2007, 09:16:26 PM
yeah, conny...

((((**)))))
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 26, 2007, 12:01:03 AM
thanks guys  :-*
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 26, 2007, 12:24:39 PM
Oh Conny, glad your mom is doing better but so sad to hear you are not well  :'(  I'm thinking about you and send some sunny thoughts, hope it helps  :-*

Jack, it's tomorrow! How did your first round go?
Title: Re: Caring for others with chronic illnesses
Post by: conny on October 26, 2007, 02:36:26 PM
thanks lydia  :)
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 26, 2007, 05:53:38 PM
first round is an apt description... :o
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on October 26, 2007, 09:34:15 PM
Yeah, I thought as much.  It takes a while for them to warm-up to an idea.

You just have to put on those boxing gloves and get back in there.

 *throws a towel around your neck and massages your shoulders* 

Float like a butterfly, sting like a bee  ;D  :-*
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on November 08, 2007, 07:27:46 AM
Jack - how are you, and how is it going with your Mum?
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 10, 2007, 02:41:28 AM
hey all...

i have been wanting to update y'all, but events on the ground are keeping me awfully busy...and dizzy.

mom is "accepting" that the move is happening, but is quite rightly dreading it, except the brunt of it will fall on my shoulders.   have secured the apartment for her (but not one for me yet) and a local mover.  not at all sure how to pull of TWO moves at the end of the month, but have come to the realization that i CAN'T afford to pay rent here and someplace else for the same month.  i am WAY too old for this kind of labor and drama.

finally got mom on some psychoactive meds for the dementia rages, and it helps some.  since med administration is a big issue, and a source of much angst, i have ordered a locked alarmed pill dispenser in the hopes she will accept that as a compromise, and actually take them as ready.  having a nurse come by or doing that myself seems unmanageable, financially and physically.

finances are looming large in my mind.  i keep reassuring mom that there is enough money to do this, but we are so close now that the timing of pensions and social security arrivals will determine if we have the right amount on time.  quite a little knothole to fit through.

the brightest note is that the housing market here has officially collapsed, so rental are dirt cheap.  i should be able to get a fairly nice one bedroom for around $500 a month.  unheard of for the past 30 years...

back to the grind...

jack     
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on November 10, 2007, 11:29:41 PM
My fingers are crossed for you and your Mum Jack and I hope and pray everything falls into place for you!!

You ARE a tough old bird - you'll get through it!!

Sal      ;D
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 13, 2007, 10:20:59 PM
you know, i would have bet against it, but i am starting to have that renewed and heightened appreciation for a care recipient that i have often heard of, trite though it may be. 

when my mother is at her best, or sometimes when she is the saddest, we have a tenderness between us i can't ever remember.  sometimes it is just feeling her reliance on me and her occasional appreciation of how far i have come on this journey, and sometimes i think it is just stockholm syndrome.  at any rate, it is one of the few pleasures alotted to me just now, along with perhaps the occasional awareness of how much i actually HAVE accomplished with the resources i have.

her fears however are part of her deepest emotions, and make her unbearably cruel at times.  moving time approaches, and whatever kind of a clusterf*ck it turns into, things WILL be changing.

::sucking it up::

jack   
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on November 14, 2007, 12:14:25 PM
you know, i would have bet against it, but i am starting to have that renewed and heightened appreciation for a care recipient that i have often heard of, trite though it may be. 

when my mother is at her best, or sometimes when she is the saddest, we have a tenderness between us i can't ever remember.  sometimes it is just feeling her reliance on me and her occasional appreciation of how far i have come on this journey, and sometimes i think it is just stockholm syndrome.  at any rate, it is one of the few pleasures alotted to me just now, along with perhaps the occasional awareness of how much i actually HAVE accomplished with the resources i have.

her fears however are part of her deepest emotions, and make her unbearably cruel at times.  moving time approaches, and whatever kind of a clusterf*ck it turns into, things WILL be changing.

::sucking it up::

jack   

HUGE HUGS
 
{{{{{{{{{{JACK}}}}}}}}}}

Sal      :-*
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on November 14, 2007, 04:56:18 PM
((((((((((((Jack))))))))))))

Good luck with everything.
Title: Re: Caring for others with chronic illnesses
Post by: atruant on November 15, 2007, 02:49:48 PM

her fears however are part of her deepest emotions, and make her unbearably cruel at times.  moving time approaches, and whatever kind of a clusterf*ck it turns into, things WILL be changing.

::sucking it up::

jack   

You will make it work, jack!! We're all behind you. Good luck with the moves.

Hugs,
John  ;D
Title: Re: Caring for others with chronic illnesses
Post by: whiplash on November 15, 2007, 07:43:45 PM
Jack - Thinking about you and wishing you and your mom the best.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 17, 2007, 01:26:35 AM
thanks for the supportive wishes guys and gals.  this is ever so much better than journaling.  journals never hug and comfort, and i still get to vent pretty good.  i'm afraid my friends in place, loving though they be are really not up to being supportive day after day, week after week.  like... isn't that OVER yet??  or worse, aren't you over involving yourself in her issues ??  oy vey!

managing a little packing.  mom wants to pack too.  don't ask...
Title: Re: Caring for others with chronic illnesses
Post by: Dal on November 18, 2007, 09:40:39 AM
jack -

this here's one more set of good thoughts for the move, the finances etc.  I don't quite understand how you're not a quivering mass of jelly already, dealing with this alone.  You go. 
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 18, 2007, 07:22:05 PM
jack -

this here's one more set of good thoughts for the move, the finances etc.  I don't quite understand how you're not a quivering mass of jelly already, dealing with this alone.  You go. 
actually...

i had to chuckle at that one.  mighty darn close to the mark, as those who have fielded phone calls can attest.
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 26, 2007, 12:34:31 AM
if i survive this, i will have made up for a couple decades worth of filial neglect... and probably shortened my own life by several years.
Title: Re: Caring for others with chronic illnesses
Post by: Brokeback_1 on November 26, 2007, 02:12:39 AM
At least you're THERE jack! And while a double edged sword, that is important.

You could be far away.
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 26, 2007, 05:11:02 AM
At least you're THERE jack! And while a double edged sword, that is important.

You could be far away.
there in SO many ways...

i kind of choked up when i shared at a meeting that my mother, in one of her lucid but depressed moments expressed dismay at what bad things she might have done to deserve to be punished so by god.  i was able (intuitively know how to handle situations which used to baffle me) to convey this.  i wonder how much good she must have done to have god miraculously intervene and get me and keep me sober so that i could be here for her and earlier for dad.  it was a small comfort and worth a hug.  :'(
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on November 27, 2007, 09:50:46 AM
That's a great way to look at things Jack.   

Best wishes to you as always.
Title: Re: Caring for others with chronic illnesses
Post by: brian on November 27, 2007, 11:49:54 AM
At least you're THERE jack! And while a double edged sword, that is important.

You could be far away.
there in SO many ways...

i kind of choked up when i shared at a meeting that my mother, in one of her lucid but depressed moments expressed dismay at what bad things she might have done to deserve to be punished so by god.  i was able (intuitively know how to handle situations which used to baffle me) to convey this.  i wonder how much good she must have done to have god miraculously intervene and get me and keep me sober so that i could be here for her and earlier for dad.  it was a small comfort and worth a hug.  :'(
My dear mother often said the same when she was having trouble breathing with the terrible pulmonary disease which finally took her. Yet anyone who knew her would comment on the lovely person she was.  Her mind was wonderful but besides the disease she was almost blind and very deaf. However I will always treasure those last few months with her as we (also my sister)  were forced by the situation to put our own lives on hold and, in the care we had to give, show how much we loved her. My prayers are with you Jack as I know how hard it is.
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 27, 2007, 12:07:24 PM
thank you brian, et al, i know you know, and that is a comfort that i carry.  it has been done, it can be done, and someone knows just what it is that i am doing, alone, and with almost no finances.

the good news is that my mother's social security and NYS pension are sufficient to cover a wonderful environment to live in, as independently as she can manage as long as she can manage, and can augment services or change the level of care as needed, for the course of the disease.  while skilled nursing will add expenses, she is also entitled to veteran's benefits as my father's widow, and that additional, once it actually arrives, will cover the added costs.

regardless of my scramble, she is going to be well cared for.  she moves in friday. 
Title: Re: Caring for others with chronic illnesses
Post by: jack on November 30, 2007, 06:12:42 AM
this is a day that does not bear repeating.  movers come today.  all stages of grieving currently battling for my mother's conscious, by denial and anger head the list.
  i wish the movers would juet GET HERE!!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on November 30, 2007, 06:13:41 AM
Thinking of you today Jack.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Dal on November 30, 2007, 10:17:31 AM
 :-* cowboy
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on November 30, 2007, 12:39:59 PM
Whup 'em, Jack!  :-*  :-*  :-*

Title: Re: Caring for others with chronic illnesses
Post by: Boris on November 30, 2007, 12:58:03 PM
Jack, friend...

(((((((((((((((((((((((((((Buddy))))))))))))))))))))))))))))))))

Title: Re: Caring for others with chronic illnesses
Post by: jack on November 30, 2007, 10:02:54 PM
other side now of a 24 hour day. grabbed a quick nap at old house and headed back soon with catz.

thanks for thoughts.

will follow up later. 
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 01, 2007, 04:30:51 AM
mom is in new apartment, which is shaping up despite having a bit too much furniture and bric a brac.  anybody remember boot camp?  that's what my body feels like... and i still haven't gotten it all here.

mom may have pulled a muscle, or god forbid broken a rib during one of her tantrums.  that should be interesting to explain to a doctor.  i swear, sometimes i swear i would like to drop her and her cats off on a curb (kerb, to you brits).

she wanted to ride back with me to the old apartment when i went back for more stuff and the cats...

not on your tintype!

keep wishing me luck,

jack
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 01, 2007, 05:23:54 AM
Continued good luck Jack, and strength and perserverance. Boot camp I remember all too well from Army days.

Did you say that you are moving to a new place too?

Title: Re: Caring for others with chronic illnesses
Post by: atruant on December 01, 2007, 04:30:58 PM
Ditto on the continued good luck, jack!!! ;D

You mentioned earlier about being able to find a decent one bedroom for a good price. Any luck in that regard yet??

Title: Re: Caring for others with chronic illnesses
Post by: jack on December 02, 2007, 05:47:46 AM
perfect timing on that question, john.

just yesterday i found myself grappling with the awareness that my current apartment is only $100 a month more than virtually anything i might take nearby her place.  that is money i don't really have, bt it sure is a temptation to stay in place to take a pass on the agony of yet another move.  weighing on the other side is the near impossibility of being in regular attendance at my mother's place, and that is looking more and more like a necessity.

a conundrum for sure.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 05, 2007, 10:30:41 PM
I wanted to ask again for your thoughts and prayers for my sister Nancy. She had valve replacement surgery about 4 months ago and has recovered from that very well. She has still been suffering with racing rapid heartbeat and is short of breath all the time.  At the time they tried to correct this, but it did not take. The damage that is causing the racing heart is in the upper left of her heart.

She was supposed to go back in for surgery on the 18, but I just found out today she is going in the hospital tomorrow for a procedure called Surgical Ablation. This is not normally a serious procedure, but the fact that she has a metal heart valve makes it so, as the electrical impulses they use could stop the valve from working if they get to close to the valve. They are going to have to enter from the right side to stay as far away from the valve, but if the damage is further down and closer to the valve, they have to quit.

Thanks so much.
Linda
Title: Re: Caring for others with chronic illnesses
Post by: gnash on December 05, 2007, 11:31:39 PM
will say a prayer tonight for her, and again all day tomorrow. you are in my thoughts, linda -- much positive energy and well wishes being sent to both of you from both me, and dennis -- we hope that nancy is stong, and her operation is successful.   :) :) :)
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 05, 2007, 11:32:37 PM
Thanks Jimmy. This means so much.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on December 06, 2007, 12:48:23 AM
i`ll keep my fingers crossed
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 06, 2007, 03:48:21 AM
Thanks Conny.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Dal on December 06, 2007, 04:31:21 PM
My best thoughts for your sis tomorrow. 
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 06, 2007, 05:26:41 PM
Thanks Dal!

Just heard that she is out of surgery and in recovery, but will be there for awhile. She is still on the respirator which is common for this surgery.

I'll keep you posted when I find out if they were able to do the reapair they wanted to to prevent the racing heart and shortness of breath.

Thanks so for all your thoughts and prayesr.
Title: Re: Caring for others with chronic illnesses
Post by: Flyboy on December 08, 2007, 09:42:49 PM
Thanks Dal!

Just heard that she is out of surgery and in recovery, but will be there for awhile. She is still on the respirator which is common for this surgery.

I'll keep you posted when I find out if they were able to do the reapair they wanted to to prevent the racing heart and shortness of breath.

Thanks so for all your thoughts and prayesr.
Linda, just heard this news, sending you warm thoughts and hope for a full recovery...... :)
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 08, 2007, 10:36:14 PM
Just wanted to update you on my sister.
She is doing well and her heart rate has dropped from 138 to 94. It has stayed in this lower range since the surgery, and if it stays lowered it looks as if the problem has been corrected.

She is hoping to go home by mid week.

Thanks again for all your thoughts and prayers for her. I will keep you posted.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 08, 2007, 10:37:32 PM
Linda, just heard this news, sending you warm thoughts and hope for a full recovery...... :)

Thanks Jonn, I really appreciate the thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: atruant on December 16, 2007, 11:03:12 AM
Linda, our thoughts are with you and your sis. Hope all is going well!!

Hugs,
John and Chuck
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 16, 2007, 12:22:05 PM
thanks for the good news, Auntie!
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 22, 2007, 09:49:04 AM
for the record, i doubt this will go down as one of my best xmas ever.

my mother, while safely, i hope, situated, cycles in and out of dementia and delusion regularly and calls me 5-10 times a day with real or imagined problems (i am never sure which is which), i am living in a half vacated apartment, with no confirmation as to my next residence as yet, and little hope of getting same before the 1st of the year (and month), my expenses are going up, with car AND moving truck rentals looming, but income remains static. with 3 incomes and 5 banking accounts in 2 states i have no real concept of how much money i have available at any given time, none of my stuff is yet packed, and the temperature has dropped to the high 50's and i'm cold and achy.

i am simply putting one foot in front of the other until i hopefully get somewhere.   
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on December 22, 2007, 10:10:23 AM
Sorry it's so rough for you Jack... Best wishes for the new year, bud.

Hugs,
Rob
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 22, 2007, 10:57:37 AM
Sorry it's so rough for you Jack... Best wishes for the new year, bud.

Hugs,
Rob
one day at a time, rob, just like you are doing.

hugs accepted and returned...
Title: Re: Caring for others with chronic illnesses
Post by: atruant on December 22, 2007, 11:38:25 AM
Hey jack,

Chuck and I enjoyed talking with you the other day. That's a great place you got your mother into, which in the end I'm sure she'll come to appreciate, and perhaps cut down the calls to you :D

May 2008 bring good things your way!

Chuck and I had our hugs to Rob's ;D

John
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 27, 2008, 06:16:40 AM
my how time flies when you are up to your eyeballs in eldercare and dementia...

i didn't realize it had been so long since i last updated this thread, largely because the situation i found for my mother was successful within its limits, and with my continued participation.

recently my mother began having persistent and recurring diarrhea, and try as we might, it only got worse.  although i alerted her medical overseers, the weren't proactive enough, and a staff change left a hole in the care that i had to get plugged and quickly.  after i finally got some rn's on the case, mother was taken to hospital day before yesterday, considerably dehydrated and much weaker and less mobile than only 2 weeks ago.  if the hospitalization is extended 3 days, she will be able to be transferred back to the skilled nursing wing unit of her residence and further rehabbed for up to 3 months and will be covered by her insurance.  the hospital stay was necessary to fill that requirement.

i have washed a lot of soiled sheets, clothing, and even a couch cushion cover the past couple weeks, and fetched and prepped meals and dispensed meds.  i am quite tired, to say the least.

there remain of course heaps of necessary tasks unmet and forms unfilled, but i try not to get lathered.  i am doing the best that i can, and that is all i CAN do...

jack
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on June 27, 2008, 07:02:42 AM
wow.....sorry to hear about what happened, but glad you are aware you are doing your best!
Title: Re: Caring for others with chronic illnesses
Post by: atruant on June 27, 2008, 10:44:38 AM
Ditto Chuck, jack. So glad your mom will be taken care of in her own residence for rehab. Hope you haven't been too much out of pocket, and also that the slog through the paperwork is not too arduous.

Hugs, John
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on June 27, 2008, 11:04:30 AM
Thinking of you and your Mum as always Jack.  Keep your chin up.  :)
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on June 27, 2008, 12:14:56 PM
Send my love to your Mum Jack!!!  She's a lovely lady!!!

Hoping she will feel better soon!!

Hugs to you both

Sal       :-*
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on June 27, 2008, 01:15:56 PM
((((((((((((((((((((Jack)))))))))))))))))))))))!!!!!!!!!

Title: Re: Caring for others with chronic illnesses
Post by: jack on June 27, 2008, 01:22:33 PM
thanks guys...

what slog through the paper work  ???  8) 8)

that's part of the ignored back chatter.

perhaps once my mother is in a full nursing situation, i can sit still and figure it out.
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 27, 2008, 07:24:15 PM
Send my love to your Mum Jack!!!  She's a lovely lady!!!

Hoping she will feel better soon!!

Hugs to you both

Sal       :-*
done, sal...

i doubt she remembered the visit, but it must have been nice to hear anyway, and it was a bit of pleasantry to pass along while keeping her company today.
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 27, 2008, 07:33:46 PM
quick update...

got a little better picture of mom's status while visiting today.  her vigor has improved considerably, and for unfathomable reasons, she is eating heartily.  maybe she likes hospital grub  ???

or maybe a couple days of glucose drip had something to do with it.  she is now able to get out of bed on her own, much to the chagrin of the night nurses.  she had been found wandering in the hallway with naught but her hospital gown, and you know how THAT works out.   especially with diarrhea.  she was also found remaking her hospital bed, sans vestments.

suffice it to say that an unfamiliar environment is very unsettling to someone with alzheimer's.  this is a great deal more confusion than she has been exhibiting on her own terrain.  if she is unable to reverse this a bit, she will have to remain on a skilled nursing unit.  its far too soon to tell what we have or where it will go, but the long haul is inevitable.     
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on June 28, 2008, 10:28:48 AM
(((((Jack))))) I know how disquieting it can be and the stress for you and for her.
Sending  energy and love to you and Mom.
 :-*
Title: Re: Caring for others with chronic illnesses
Post by: brian on June 28, 2008, 02:34:26 PM
Thinking of you and your Mom, Jack
Brian
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 29, 2008, 10:21:08 AM
i must be recieving those supportive thoughts, because i am still ticking somehow.  and i've a feeling that there really is a higher power to call on for strength in times of need as well.  i am not in my nature the kind of person who does the stuff ihave been doing, so this fortitude has to be coming from somewhere.

to update the story, i picked up mom at the hospital and returned her to calusa harbour, her residence, just not to her apartment.  she is in the skilled nursing unit.  it is a LITTLE confusing to her, but there is an essential feel of the familiar, including the food and the concerned care of the staff.  it has all the comforts of home, but all the resources of a hospital unit.  i am telling you, that place is a miracle.  i will be heading over in a bit to see how she is orienting, and bring a few things down from her apartment.  she will be gettig medical attention as well as rehabilitative therapy.

the bowel function (sorry) is still a mess, so that is of high priority, but it is a hope of mine that the amount of social interaction will prove beneficial. 

monday, i hope, i will finally be sitting down with a case worker from calusa, who SHOULD be able to help me get her medicaid application in order and in.  i have had no help on ANY of her financial stuff or bureaucratic stuff since this adventure began, and not from want of trying.  a light at the end of the tunnel ?  we'll see.
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on June 30, 2008, 01:06:44 AM
Keep struggling on Jack - everything will turn out Ok in the end!!!

Still sending prayers, thoughts and hugs your way!!

Sal    :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 05, 2008, 12:54:14 AM
(((jack))) thinking of you!!  :-*

sorry havent been here a while  :-[

my dad scared us up yesterday by calling me to say he had to go to hospital immideatly, cause his bloodlevel was very low.
it was just like a rehearsel from all the things with mom. we`ve been telling him for over a month now to go and see a docter, cause he lost weight,and had pain around his stomach and had a strange voice.
i had a weird concerned feeling thursday evening and again friday morning,but he was out playing cards,so i though oh well everything is ok. better listen to my inner voice always  ::) like i mostly do  ;)
he has had transfusion over night and they don`t know yet whats wrong with him. if the blood is better he can come home for the weekend ,so i`m going over there now.
monday he has to go back for a first serie of tests starting with his intestants.

fingers crossed he will be ok again  :-\
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on July 05, 2008, 02:04:53 AM
My thoughts and prayers are with you and your Dad Con, hope everything goes well

Sal   :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 05, 2008, 09:29:06 AM
thanks sal,

he has to stay in hospital, bloodlevel wasn`t high enough and this was they could at once on monday with the tests, first thing will be his stomach
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 05, 2008, 09:34:39 AM
Light and warm thoughts for you and your father, hoping he'll recover soon.

(((((((((((((((((((((((((((((( Conny )))))))))))))))))))))))))))!!!!!!!
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 05, 2008, 07:15:45 PM
hey conny... from where i sit it seems that all that can be done is trust the big plan, and put one foot in front of the other. sorry to hear its rough for you as well.  at least we have each other to pray with and for.  peace to you, con.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: atruant on July 06, 2008, 03:52:57 PM

fingers crossed he will be ok again  :-\

Fingers and toes crossed over here, Conny :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 06, 2008, 06:49:58 PM
i'm going to share a half-believed sentiment.  it is going to come out as a sort of narrative and perhaps it should be related around a campfire, or at least in front of a fireplace.

it goes back to when my father got a diagnosis of pancreatic cancer.. after 30+ years of heart problems that he managed to work around quite surprisingly well.  i was living in florida and they were back in upstate new york when i heard, and he didn't sound his usual accepting self, he rather sounded defeated, so i managed, with the help of a couple friends, to high tail it up to new york.  better too soon than too late.  he had a hospital style bed in the living room and an oxygen bubbler feeding him extra through nasal tubes

dad was very pleased.  i think it was confirmation that despite our many disputes i did care, and he took it as such.     

we talked and made some plans for as soon as he felt some better getting out and about, but that did not come to pass.  hospice had only the briefest discussion of what to expect from the next days before he began the last inward trip.  in the course of a day and half, he became incommunicable and all we could do was make him as comfortable as possible.  the cancer never really got a shot at him, his heart finally began shutting off.

dad lingered for the next couple days, saying nothing, making no eye contact, nothing.  his breathing became labored, but he soldiered on.  taking care of him became a 24 hour a day task, largely handled by my mother and myself.  very draining, and emotionally wracking for my mother, who depended far more on my father for security than i ever knew.

his last night, after i FINALLY got my mother to go take a nap, i got very close to his face and told him not that it was OK for him to go, but that it was NECESSARY for him to go, because it was physically and emotionally harming mom. about twenty minutes later, he was gone.

here's the strange part.  i had wandered off to putz around on the computer in the other room.  the house was quiet except for the oxygen machine.  suddenly my mother shot out of her room, and said JOHN CALLED ME, HE NEEDS ME.   we found him still and peaceful.  gone.  there had been no call, at least not a physical one.  i guess he gave my mother a telepathic parting cry.  i have no other explanation.

the reason i told dad to go is that i strongly suspected his body was ready, but he SO felt that we couldn't get by without him he couldn't bring himself to leave us unattended.  he had to be told, in no uncertain terms, that we would manage.

dad died in april of 2000, and a bitter cold one it was.  when we arrived early at the cemetery, a bitter sleetish wind was blowing.  it looked like it was going to be a miserable experience for all concerned.  i cracked wise to a friend that dad was ALWAYS fixing things, so i would pray for him to get this taken care of.  by the time the third car had come, the sun was fighting its way through the grey, and the wind and rain had diminished to almost nothing.  as the rite was pronounced, there was no rain at all.

i chalked that one up to dad too, and those who knew him chuckled with me.

i mention all this, because i have a feeling that has been creeping up on me.  i am beginning to think that dad is trying to call my mother to him now.  she is cooperating well, and eating well where she is, but at times she has a far away look, as if she is hearing something but she can't quite make it out. 
i am not positive, but i think they would have been married 60 years this month.  i brought their wedding picture down to her room today.

wish them well and godspeed if you will.

     
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 06, 2008, 07:44:50 PM
Oh Jack. What a wonderful narrative, and such a great life lesson for many of us.

I have a similar story. Rick had been put on comfort care and I was told it would just be a matter of hours. Well, about 16 or so hours later, after I had convinced the boys and his friends to go home for awhile and get some rest, I did the exact same thing. I took his hand and leaned over and told him it really was ok to let go, that he knew the bpys were set and that I really would be ok, that it was time to go.

About 15 minutes or so later, he did let go.

Thanks so much for sharing your story here.
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on July 07, 2008, 12:16:31 AM
Thoughts and prayers are still with you Jack

Sal    :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 07, 2008, 12:38:33 AM
thanks for sharing Jack!!
if dead comes i want it to be this way.
for my dad back then it was saddest thing that my mom fell and he felt so responsable but for my mom it was the best!

i guess this with him now, was neccesary to wake him up, to take better care after himself and that his life is here!
we got to talking more and people came bye which he hadn`t seen since mom died.

that i think is so strange,people come to wish you strength at a funderal and then just dissapear like they are not needed anymore  :-\
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 07, 2008, 01:48:53 AM
which is stranger con, that, or people around the world, many you have never seen, praying for the comfort of you and yours, eh?

humans ARE strange.
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 29, 2008, 12:55:35 AM
could you please keep your fingers crossed that my dad will get back good results on thursday please.
last friday they found a small tumor in his intestants, he had a CT scan yesterday and thursday we know if its spreaded and if its good or bad.
i can`t even stand the thought of loosing him too,so it just has to be ok!
we just made plans to go camping together in 2 weeks, to my favorate spot in the belgium ardennes and where he and i hiked 25 years ago.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on July 29, 2008, 08:40:19 AM
My fingers are crossed and good and hopeful thoughts are on their way for your dad and you, Conny!

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on July 29, 2008, 09:13:21 AM
saying prayers, Conny!


please keep us updated!
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on July 29, 2008, 09:45:32 AM
Hugs, Prayers and love winging its way Con, Fingers crossed for you both!

Sal    :-*
Title: Re: Caring for others with chronic illnesses
Post by: atruant on July 29, 2008, 11:50:59 AM
Thoughts and prayers already airborne and on their way, Conny!  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 29, 2008, 12:57:52 PM
thanks all  :-*
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on July 29, 2008, 01:05:14 PM
Hoping you and your Dad get encouraging news, (((Conny)))

My thoughts & prayers are with you both.  Surely this year will get better for all of us.

kl'k kl'k
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 29, 2008, 01:11:04 PM
thanks (((glen)))) kl`k kl`k  :-*

btw how is your mum??
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on July 29, 2008, 02:30:23 PM
She's failing, Conny - physically and mentally.  Some days are better than others, of course.  But she's generally in a good mood and frame of what's-left-of-her-mind.  I don't remember the last time I posted an update.  A lot has happened.  A few days after we moved her from hospital to nursing home she became non-responsive, and spent another 5 days in hospital.  Since that episode nothing quite that serious has happened.  She did fairly well with physical therapy, but has had several falls.  So now she's in a wheelchair and keeping the hallways hot!  :D  I have regular meetings with the staff and doctor.  The main focus now is to keep her as comfortable as possible.  Renal shutdown or another cardiac episode (or most anything else) could happen with no warning.  The staff are absolutely amazing folks.  They're taking very good care of her day-to-day needs.

During all this, a very close friend who was one of my former employers passed away and my niece's fiance died in a motorcycle accident.  It's been crazy.

And so it goes.   kl'k kl'k  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 29, 2008, 02:51:36 PM
good to hear mom is still alive and wheeling glenn  ;)
sorry about your college ad family member,live is hell somtimes!!

take care sweetie,;love ya  :-* kl`k kl`k
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 29, 2008, 03:13:05 PM
My prayers are with you and your dad Conny.
I so pray it is good news and not serious.
Keeping you both in my thoughts and prayers.

The same for you and your mom Glenn. Sending them up daily.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on July 29, 2008, 04:31:40 PM
((((GLEN))))   ((((CONNY))))...thinking of you guys :-*  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on July 29, 2008, 08:54:54 PM
(((((((Glenn)))))))


It's been a tough year...
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on July 30, 2008, 01:13:46 AM
Thanks ((((Ya'll))))  Hugs right back

Tough year, indeed - for so many of us all across the forum. 
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 30, 2008, 03:27:07 AM
funny you should mention that, glenn.

it must be time for me to update as well, although first let me say that i always keep you guys in my thoughts, and for a selfish reason, sort of.  i don't feel like i am truidging through this alone.

sadly, my friends in real life are just not able to cope with my moods, exhaustion, griping or depression, so they have made themselves scarce.  i can't say i blame them, they are mostly much younger, and have other things to deal with.  the forum, and knowing that others have similar worries does help.  more baout this later.  boarding a plane stat.   
Title: Re: Caring for others with chronic illnesses
Post by: jack on July 31, 2008, 08:39:29 AM
sorry about that, back on terra firma again.

it has been the random kindness or support from strangers, and the ongoing patience of friends from the forum that have been the most helpful.

my mother, after a very debilitating bout of diarrhea that landed her in the hospital is back, for some 3 weeks now, in her senior residence, but in skilled nursing rather than her apartment.  while the environment and care is a positive as one could hope for, being in nursing was an awful blow to my mother and being incontinent now as well has really sapped her of her will to live.  i asked for and got a psych eval and it came back as i expected, severe depression and limited cognition.  it added that she tended to be a bit contrary as well (no shit !).

frankly the decline was so profound, i thought she had decided to die.  just before this trip was scheduled, and the same day i finally had a care plan meeting with assembled staff, something kicked in, and she was at least part way back.  for the first time in quite some time, she referred to me as son, and was alert and upright.  since then she has had additional periods of relative awareness, certainly an improvement.  it could go either way now, and certainly the alzheimer's is having its way with her brain, but at least she is able to participate in her treatment, and that is vital to her continued insurance coverage.  getting her on medicare is job 1 when i get back home, because that is what will cover her at such time as she is simply a care patient.

i am going to be (more of) a wreck by the time this is over.

i am writing this sitting in a youth hostel in santa monica, california, 3000 miles away from all that and two blocks from the pacific ocean, taking a lovely and much needed break for a week with my brokie and other friends.  i am not sure how i pulled it off, but it is a blessing for sure.

thinking of you all, and wishing you were here.

jack     
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on July 31, 2008, 09:04:40 AM
(((((((Jack)))))))

Here's to hoping that your mom improves while you're gone, and that you're able to enjoy a relaxing visit with your and our friends!

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 31, 2008, 01:26:57 PM
dad`s tumor is a bad one and he needs to be operated as soon as possible. but no spreading in his tummy and his liver and kidnies are ok too,thanks for that. the tumor is besied his appendix and they hope to take it out completely. if not he`ll need chemo.
he has an appointment with the doc next week friday and if all goes well we first can go on our camping trip that saturday and operation will be after that.

it was too hot here tpo drive to him today with the dogs,but temps are supposed to drop tonight with raibn and thunderstorms,so i``m going to visit him for the weekeind and leaving tomorrow.
for me he sounded all right,but my niece had him on the phone crying, and since i`m exactly like me i know how he`s feeling  ;) and acting.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 31, 2008, 01:28:12 PM
((((((((((((((((( Conny )))))))))))))))))

((((((((((((((((( Glenn ))))))))))))))))))

((((((((((((((((( Jack )))))))))))))))))))

You and your loved ones are in my thoughts!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 31, 2008, 01:36:53 PM
(((((((((((((Conny)))))))))))))
I will continue to keep positive thoughts and send prayers about your dad.
I hope for the best possible solution for him.
Enjoy your trip with him, as I know you will.

Jack, I am so glad you were able to get away for a bit and be with your/our friends.
I know it will help.

Glenn as always your mom is in my prayers.
Title: Re: Caring for others with chronic illnesses
Post by: conny on July 31, 2008, 02:24:57 PM
thanks linda, mia
Title: Re: Caring for others with chronic illnesses
Post by: atruant on July 31, 2008, 03:31:48 PM
((((((((((((((((( Conny )))))))))))))))))

((((((((((((((((( Glenn ))))))))))))))))))

((((((((((((((((( Jack )))))))))))))))))))

You and your loved ones are in my thoughts!

What Mia said, with a few more ((())).

(((((ConnyGlennJack)))))
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on July 31, 2008, 07:07:44 PM
Jack ~ sometimes I think they get a kick out of scaring the bejeezus out of us.  It's such a rollercoaster ride, isn't it?  Enjoy your time away and try not to worry tooooo much.  Yeah, I know, easier said than done.

Conny ~ so sorry to hear about your Dad's diagnosis, but hoping they caught it in time that surgery will take care of it completely.  Enjoy your camping trip and you try not to worry too much, too, OK?  kl'k kl'k

Thanks, everyone, for your warm thoughts and support.  It means so much - truly.
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 01, 2008, 01:03:14 AM
thanks glenn, will do.
gonna cheer him up for the weekend; we`lldo some hiking and bbqing  ;)
kl`k kl`k  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on August 05, 2008, 11:21:49 AM
((((((((((Connie))))))))))))

(((((((((((Glenn))))))))))))

(((((((((((Jack)))))))))))))


My best wishes and lots of good thoughts to all of you and to your loved ones.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on August 07, 2008, 08:32:51 AM
Just coming back to this thread to see if there are any updates.

Jack, Conny, Glenn, keeping your parents in my thoughts and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 07, 2008, 10:27:36 AM
thanks chuck,
tomorrow we here wehn my dad`s operation is scheduled
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on August 07, 2008, 02:10:30 PM
Will be thinking of you and him and your family all day, Conny!!!
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 08, 2008, 07:09:00 AM
thanks linda,
his heart and lungs were tested and are clear.bloodlevel is low.so he`ll get some EOP somewhere in upcoming week(s) to make his bloodlevel and immunesystem better.operation now is planned for september 3th, but if there`s an open spot somewhwre they call him sooner. upcoming wednesday some mre research and explanation of the surgery, so no vacation  :-\
but it`ll be all worth it if dad gets better.
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on August 08, 2008, 09:14:27 AM
Fingers crossed, good thoughts coming your way, Conny!!!

 :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on August 08, 2008, 10:17:12 AM
Keeping your dad in my prayers, Con!
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on August 08, 2008, 02:25:17 PM
Thinking of you and all your family ((((Conny)))) - always.  :-* kl'k kl'k
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 08, 2008, 02:45:55 PM
thanks glenn kl`k kl`k  :-*
Title: Re: Caring for others with chronic illnesses
Post by: atruant on August 08, 2008, 02:51:14 PM
Hoping for the best, Conny! :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on August 08, 2008, 03:40:57 PM
Good thoughts to you and your dad, Conny!
Title: Re: Caring for others with chronic illnesses
Post by: conny on August 14, 2008, 01:11:20 AM
thanks all
all of a sudden i found myself in hospital monday early morning. i had hells pains all night, first thought of acrohn outbreak, but later on it turend to right under in my belly and i knew it had ot be my appendix.
lots of hours of research and waiting and lots of pain later i finally was operated mondat afternoon. a friend brought me to the hospital en took care of all the dogs.
al going home today, stilll in a lot of afterpain,but that seems to be normal. My dad is coming over to take care of me and the dogs and friends are jumping in.
luckily it was not spreaded trough my whole stomach, so only have three small incisions.
i`ll be home later today
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on August 14, 2008, 09:11:52 AM
Blimey, Conny!!!

Get well soon, Sweetie!!!

(((((((Conny)))))))
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on August 14, 2008, 09:21:08 AM
thanks all
all of a sudden i found myself in hospital monday early morning. i had hells pains all night, first thought of acrohn outbreak, but later on it turend to right under in my belly and i knew it had ot be my appendix.
lots of hours of research and waiting and lots of pain later i finally was operated mondat afternoon. a friend brought me to the hospital en took care of all the dogs.
al going home today, stilll in a lot of afterpain,but that seems to be normal. My dad is coming over to take care of me and the dogs and friends are jumping in.
luckily it was not spreaded trough my whole stomach, so only have three small incisions.
i`ll be home later today

((((((((((((( Conny )))))))))))

(http://i215.photobucket.com/albums/cc19/Janssonmamma/blommor/GetWell-1.jpg)
Title: Re: Caring for others with chronic illnesses
Post by: Sason on August 14, 2008, 10:50:49 AM
((((((Conny))))))

Sorry to hear about your pain and operation, hope you'll recover soon!!!!
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on August 14, 2008, 01:34:49 PM
(((Conny)))

Wow, sweetie - just one thing after another.

Hope you're feeling a bit better.  Hugs and wishes for a full & speedy recovery.

kl'k kl'k   :-*
Title: Re: Caring for others with chronic illnesses
Post by: atruant on August 14, 2008, 05:22:04 PM
Take care (((((Connny)))) and recover fast!! :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on August 14, 2008, 05:55:16 PM
Get well soon, Conny!  We love you!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on August 14, 2008, 10:30:59 PM
((((((Conny)))))))

Get to feeling better soon. Those appendix attacks will do you in, for sure. I had mine out years ago, but still remember the pain.

Take care of yourself and it is great to have friends and your dad there for you!!

Sending healing thoughts your way!  :-*

Title: Re: Caring for others with chronic illnesses
Post by: conny on August 15, 2008, 01:00:06 AM
thanks ya`ll  :-*
yesterday finally my intestants started working again, so that was a great relief, still painfull but a little les. i get back on my feet again, although it may take a while
i`ll be ready when my dad has to in hospital which for now seems to be august 31,operation on september 1.
he now knows a bit what he`s gonna feel  ;), they take his appendix out too together with the tumor.
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on August 15, 2008, 01:19:36 AM
conny, i wish you a quick recovery and as little pain as possible! i'm really glad it was "just" your appendix and you'll be back on your feet soon again!

big, big hug to you!  :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 01, 2008, 06:35:40 AM
my dad`s operation was this morning and all went well.they could remove the whole tumor and no spreading, so very positive outcome. iff all goes well he may go home next weekend.

i still am in pain and intestants are not yet working as they should be and have some weird red dots in my skin since yesterday so have another doc`s appointment this afternoon. lost 10 pounds in 3 weeks as well, which was what i wanted to loose,but not this fast  ;)
guess recovary is gonna take a bit longer.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on September 01, 2008, 08:37:46 AM
Conny, I'm sorry that you're not feeling well, but thanks for the update on your dad!  Fantastic!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on September 01, 2008, 08:44:30 AM
Hoping and praying for you and your dad, (((((((((((Conny)))))))))))

Title: Re: Caring for others with chronic illnesses
Post by: atruant on September 01, 2008, 09:50:19 AM
All the best for you and your dad, Conny!!!

 :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 01, 2008, 10:54:02 AM
thanks guys
doc says i have to take it easy and that my body needs longer time to recover cause of my crohn, so i sit at ease  ;)
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on September 01, 2008, 11:30:09 AM
Big hugs to you Conny.  Good to hear that your Dad's operation went so well.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on September 01, 2008, 11:57:25 AM
I wish you and your daddy all the best Conny!!!!  Good to hear his operation went well.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on September 01, 2008, 12:38:49 PM
my dad`s operation was this morning and all went well.they could remove the whole tumor and no spreading, so very positive outcome. iff all goes well he may go home next weekend.

I am so relieved to hear this.

I think of you both. Here's to, maybe not so quick but a good recovery. Wish you all the best.

(((((((((((((((((((((((((((( Conny and Conny's dad ))))))))))))))))))))))))!!!!!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on September 01, 2008, 02:19:13 PM
Big hugs and lots of thoughts to you and your dad, Conny!!

I am so relieved about your dad, this is the best news!!

Make sure you take care of yourself and take time like the doctor says! :-*
Title: Re: Caring for others with chronic illnesses
Post by: conny on September 01, 2008, 02:41:04 PM
thanks ya`ll and will try and take it easy  ;)
Title: Re: Caring for others with chronic illnesses
Post by: jack on September 01, 2008, 11:23:58 PM
conny, you are in my thoughts always, whether i pop in here or not, same to you glenn, and any of the rest of you i haven't mentioned.  i have been forgoing visiting here cause i really have nothing to add.  my life is just a bad tv movie of the week i have to keep living through until its conclusion.  my mother has great care where she is, its just up to me to see that she can stay there, and the governmental hoops i have to jump through with her incomplete records and my meager abilities is overwhelming.

i try not to think about what i am not achieving, and concentrating on the so far successful results.   

best i can do, one foot in front of the other.  don't drink, don't smoke and stay away from the bakery section.   

jack
Title: Re: Caring for others with chronic illnesses
Post by: atruant on September 02, 2008, 03:53:04 PM
((((( Tough Old Bird )))))
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 28, 2008, 02:07:49 PM

i spent part of xmas day with my mother. we had dinner and sat on the lanai in the sunshine before and after.

i had a visitor snap a couple shots with my phone cam, but despite a request to move in tight on our heads, she took longer shots. not the best choice on tiny cam.  here we are...
 (http://i107.photobucket.com/albums/m285/bandanajack/xmas/xmas1a.jpg) 

and i took one of her as well, face to the sun.

 (http://i107.photobucket.com/albums/m285/bandanajack/xmas/momxmaslanai-1-1.jpg)
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 28, 2008, 02:54:23 PM
and an update is in order...  :o

while it remains that i have tasks to complete regarding my mothers'continued care, the responsibility for her financial affairs has shifted from me to a professional guardian.  he, and his effeciainet office, will deal with all the bureauocracies and administrations involved, and i just see to my mother's comfort and emotional well being, a much more manageable task.  and in the meantime, i can start trying to put my own mangled affairs in order.  some of thi i have already accomplished, but easily a year's worth remains before the dust settles.  a start, however, is a start. 
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 28, 2008, 02:57:50 PM
Best of luck in both endeavors, (((((((((((Jack))))))))))))))))

Title: Re: Caring for others with chronic illnesses
Post by: Trigger Hippie on December 28, 2008, 03:19:20 PM
Nice pics Jack

hugs as always you old goat! 
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 28, 2008, 03:27:51 PM
Glad you don't have to deal with her finances anymore....that must have been hard on you...
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 28, 2008, 04:10:42 PM
Glad you don't have to deal with her finances anymore....that must have been hard on you...

yes... but i suspect it was harder on everyone else concerned. ::)
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 28, 2008, 04:22:04 PM
Well, anyway you can focus on her other needs, the ones that she will notice that you're taking care of....

How far from you does she live?
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 28, 2008, 08:19:28 PM
that was the chief criterion for the new apartment.  one mile downriver.
Title: Re: Caring for others with chronic illnesses
Post by: conny on December 28, 2008, 09:48:05 PM
you two look lovely jack!
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 28, 2008, 10:30:33 PM
i thought that would be special for you conny.  i thought of you when posting it.   :-* :-*

somehow, against all odds, my mother is happy at last.
Title: Re: Caring for others with chronic illnesses
Post by: brian on December 29, 2008, 01:17:43 PM
So glad to hear that everything is improving for you and your mother, Jack. Best wishes.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 29, 2008, 03:38:29 PM

somehow, against all odds, my mother is happy at last.


That is good. And you living nearby and being able to see her often.
Title: Re: Caring for others with chronic illnesses
Post by: bbmbliss on December 30, 2008, 12:18:42 PM
Good news Jack.  Hugs!!!!!
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 30, 2008, 09:46:22 PM
yes it is, sarah.  whether because of the disease, or acceptance, she has finally let go of compulsive worrying.  i should be so lucky.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on December 30, 2008, 10:17:33 PM
Your mom looks happy and content.   I know it hasn't been easy for either of you, but you've toughed it out and done right by her, Jack.  Know that you are a good son.  She does.

Happy New Year to you both! 



 (http://i107.photobucket.com/albums/m285/bandanajack/xmas/xmas1a.jpg) 
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on January 01, 2009, 01:45:37 PM
For the last 4 days I have been caring for Laurens Grandad.  He had what was thought to be a chest infection. I finally got him to bed - he'd been sleeping in an armchair, but this morning when I went to his house he looked worse than the night before.  I called the emergency Doctor, who took one look at him and called the ambulance.  He has been admitted to our local hospital with pneumonia extreemely low blood pressure (71/34) and renal failure. It was as much as I could do to persuade the stubborn old goat to go to hospital - I'm so glad I did.

He is on massive doses of antibiotics, painkillers and fluids.  After 10 hours of sorting him out I have come home for some personal R & R!!

I'll keep you updated.

Sal 
Title: Re: Caring for others with chronic illnesses
Post by: jack on January 01, 2009, 04:32:58 PM
and so... 2009 begins much as 2008 began.  sorry to hear, sal

For the last 4 days I have been caring for Laurens Grandad.  He had what was thought to be a chest infection. I finally got him to bed - he'd been sleeping in an armchair, but this morning when I went to his house he looked worse than the night before.  I called the emergency Doctor, who took one look at him and called the ambulance.  He has been admitted to our local hospital with pneumonia extreemely low blood pressure (71/34) and renal failure. It was as much as I could do to persuade the stubborn old goat to go to hospital - I'm so glad I did.

He is on massive doses of antibiotics, painkillers and fluids.  After 10 hours of sorting him out I have come home for some personal R & R!!

I'll keep you updated.

Sal 
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 01, 2009, 05:34:53 PM
(((((((((((( Sal )))))))))))))

Glad you finally got him to hospital!!!

Hope they'll be able to get him in better shape.


Thinking of you and sending good wishes your way!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on January 01, 2009, 11:30:55 PM
Thinking of you ((((((((((Sal))))))))))))).
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on January 04, 2009, 01:37:44 PM
Well this morning I thought Jim was on the mend, he was more chipper, chatting and looked brighter.  When I went to feed him this evening he had gone down hill.  It seems to be all ups and downs. Very draining.

Sal 
Title: Re: Caring for others with chronic illnesses
Post by: atruant on January 04, 2009, 02:48:35 PM
somehow, against all odds, my mother is happy at last.

Wonderful jack - for the both of you!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 04, 2009, 05:50:00 PM
Thinking of you Sal.....(((HUGS)))...you're a saint
Title: Re: Caring for others with chronic illnesses
Post by: atruant on January 04, 2009, 05:59:35 PM
Thinking of you Sal.....(((HUGS)))...you're a saint

What Nellie said, Sal..... :-* :-*

Miss you!
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 05, 2009, 04:47:09 PM
(((((( Sal )))))))

I wish you strength to deal with this difficult situation.....
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on January 05, 2009, 06:38:15 PM
.........  It seems to be all ups and downs. Very draining.

Sal 

(((Sal)))   Is Jim still hospitalized?   Try to rest, hon.  Sounds like you need it.
Title: Re: Caring for others with chronic illnesses
Post by: Flyboy on January 05, 2009, 10:18:31 PM
Well this morning I thought Jim was on the mend, he was more chipper, chatting and looked brighter.  When I went to feed him this evening he had gone down hill.  It seems to be all ups and downs. Very draining.

Sal 
Thinking of you at this time Sal............you are such a caring person, your family is lucky to have you............sending you warms thoughts and prayers for healing........
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on January 05, 2009, 11:03:51 PM
(((Sal)))   Is Jim still hospitalized?   Try to rest, hon.  Sounds like you need it.
Yes Glenn he is, he is still very poorly, the pneumonia is a bit better, he still has renal failure. He is still on the DNR list. Although in himself he was brighter yesterday, sitting up in bed, a little alert, with his glasses on, smiling at anything or nothing.  He can't grasp what word he wants to use and then just smiles.  Last night he pulled his canula out and refused to let the nurses put it in again. It took and hour but I finally managed to persuade him to let the nurses re-instate it.  He's more like a naughty child than an 84 year old!!

We are jusy hoping he goes one way or the other soon
Sal
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on January 06, 2009, 07:00:52 PM
A quick update.

I spent all day at work, working.

Since then I have been at the hospital. Jim is now unconscious. The hospital told me come home for a couple of hours rest - Its 2am now, I shall be back there at 6am, unless I am called any sooner

Sal    :-\
Title: Re: Caring for others with chronic illnesses
Post by: Rob in Puyallup on January 06, 2009, 08:22:14 PM
Sorry to hear about the sadness in your and Lauren's lives right now, WifeyBird...

Loving hugs,
Hubby #2
Boo

Title: Re: Caring for others with chronic illnesses
Post by: conny on January 07, 2009, 06:34:59 AM
((sal, lauren)))   :-*  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on January 07, 2009, 06:44:50 AM
I'm thinking about you!  :-* :-* :-*

(((((((((((((((((((((((((((((((((( Sal )))))))))))))))))))))))))))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 07, 2009, 01:34:07 PM
A quick update.

I spent all day at work, working.

Since then I have been at the hospital. Jim is now unconscious. The hospital told me come home for a couple of hours rest - Its 2am now, I shall be back there at 6am, unless I am called any sooner

Sal    :-\

((((((((((((((((((((((((((((( SAL ))))))))))))))))))))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on February 16, 2009, 01:22:15 PM
Dealing, coping and living with aging parents or anyone with a chronic illness is, at best, difficult.  A friend sent this link which I'd like to share.  It helps put things in perspective.  So often it's easy to forget or overlook the obvious as someone's health deteriorates.

Grab a hankie....

http://parentswish.com/site01/big.html


Title: Re: Caring for others with chronic illnesses
Post by: Sandy on March 28, 2009, 08:29:13 AM
Hi Brokies,

Just a quick note. BrokenOkie/Glenn has become the forum's chief moderator. I am taking over his responsibilities in the Support Group threads, including this one, so he can concentrate on his new duties.

I look forward to working with you all.

Sandy
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 17, 2009, 08:09:26 PM
i dread even mentioning this, but i go word this afternoon that the residence that was housing my mother got tired of waiting for medicaid to resolve their issues without ceremony packed her belongings in large plastic bags and moved her to another facility.  she was, of course, devastated and delusional and combative.  i don't blame her.

they seemed to have succeeded in calming her and getting her into her own room by the time i got to talk to her early this evening.  i think there is enough of the family resilience left in her to be able to roll with the punches.  i will be able to tell more when i go over tomorrow and check our her mood and the facility itself.

just when you think an issue is resolved, someone or something pulls the rug out.   
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on April 17, 2009, 08:24:24 PM
Oh Jack, I am so sorry. That is just totally horrible for them to do this to someone of her age and mental issues. I just can't imagine something like that. Doesn't she have an advocate who is supposed to be working for her and where the hell have they been?
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on April 17, 2009, 08:51:06 PM
Damn Jack.  That's awful!  Please keep us updated on this!

(((((Jack)))))
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 17, 2009, 09:42:40 PM
Oh Jack, I am so sorry. That is just totally horrible for them to do this to someone of her age and mental issues. I just can't imagine something like that. Doesn't she have an advocate who is supposed to be working for her and where the hell have they been?
she has one, but advocacy has its limits, especially in the face of a brokendown medicaid system and a recalcitrant bank and a negligent civil service system.

in a way, it is is a perverse satisfaction that even the professionals tear their hair out under these conditions.  the grief that i had was not entirely due to my incompetence.

while it is no defense of the shabby heartless eviction, calusa harbour was getting only 2k a month for the past 4 months and their billing was for over 8k.  had they waited a bit longer, though, the majority of that would have come to them retroactively.
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on April 17, 2009, 09:47:52 PM
Dealing, coping and living with aging parents or anyone with a chronic illness is, at best, difficult.  A friend sent this link which I'd like to share.  It helps put things in perspective.  So often it's easy to forget or overlook the obvious as someone's health deteriorates.

Grab a hankie....

http://parentswish.com/site01/big.html

Wow.  I tend to forget this thread, even though it's appropriate, since I deal with my aging mother's needs.

Thanks, Glenn, this is hankie material indeed.
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on April 17, 2009, 09:50:34 PM
Jack, I'm so sorry to hear about what has happened to your mother.  Just when you thought she was settled in comfortably.

Wishing you and her all the best.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 17, 2009, 10:06:43 PM
i dread even mentioning this, but i go word this afternoon that the residence that was housing my mother got tired of waiting for medicaid to resolve their issues without ceremony packed her belongings in large plastic bags and moved her to another facility.  she was, of course, devastated and delusional and combative.  i don't blame her.

they seemed to have succeeded in calming her and getting her into her own room by the time i got to talk to her early this evening.  i think there is enough of the family resilience left in her to be able to roll with the punches.  i will be able to tell more when i go over tomorrow and check our her mood and the facility itself.

just when you think an issue is resolved, someone or something pulls the rug out.   

(((((((Jack)))))))) my thoughts are with you and Mom. We were only just talking on the new thread about the ups and downs balancing.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 18, 2009, 04:52:30 AM
((((((((((( Jack and mum ))))))))))))

What a cruel, heartless thing to do!!!!!

I can't believe they treated an elderly and helpless person like that!!

I really hope the new place is a good one, and that she somehow is able to

settle in and feel trust again.
Title: Re: Caring for others with chronic illnesses
Post by: atruant on April 18, 2009, 10:11:46 AM
Hope you have better news today, (((jack))).
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 18, 2009, 04:08:30 PM
update:

mom was chipper but delusional, at least delusional in service to denial.  she has decided they moved her out to work on her room and she will return to her old room on monday.  neither myself nor anyone on staff is going to disabuse her of that notion if it keeps her at peace with the process.

the place is a lot more typical of a nursing facility and the staff appears to be a mixed bag in terms of credentials.  i will be wanting to drop in at odd hours to assess it all.  i am glad mom didn't have to go this route early on, it would have been shattering for her.  i am crossing my fingers that she will continue to live in her bubble where she is content.  that she now has a relationship with her son that fits her parameters makes it all more palatable for her.

i have to admit that i am a bit worried that she will go on like this for years, and i don't know how long i can put my future on hold to accommodate her ease.  my clock is ticking.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 18, 2009, 04:39:49 PM
Jack, I'm glad she found a way herself, even if a delusion, to deal with it and accept it as it is.

If she is reasonable happy where she is, maybe you can relax a little?

Checking in now and then, at least now in the beginning, is a good idea to find out what the

place is like and how they treat her.

If she is ok, and the place (hopefully!!) seems ok, will you then be able to go on with your own future?

I sure hope so.

Although we have responsibilities to our parents, I also strongly believe we have responsibilites to ourselves...
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on April 18, 2009, 04:42:18 PM
Although we have responsibilities to our parents, I also strongly believe we have responsibilites to ourselves...

This is so true, Sonja. 

It's a tough balancing act, but Jack, you can't neglect yourself, either.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 18, 2009, 05:11:27 PM
since i hooked up the public guardian to her case, i have been able to dispense with the aggravation of bureaucracies and start to pick up the pieces of everyday life, but leaving florida before she passes or loses cognitive ability would take more brass than even i can muster right now, and i am no shrinking violet.  in another year or more, this will change considerably.  it is my intention to head back to hawaii for my last chapters.  (i'd leave the states altogether if i could afford it and maintain a modest and healthy life.)   

this doesn't square with the current situation.
Title: Re: Caring for others with chronic illnesses
Post by: BrokenOkie on April 23, 2009, 07:17:49 PM
......Although we have responsibilities to our parents, I also strongly believe we have responsibilites to ourselves...

Quite true, Sason.  But it's difficult to maintain much semblance of one's own life when you're the responsible party for someone who is no longer capable of making their own decisions.  I try to get away as much as possible, and enjoy it when I do, but there's a constant 'nagging' in the back of my mind when I do, and the very real possibility I'll get "The Call" while out of town.

Which leads to one of my infrequent updates.....my Mom's mental stability is becoming increasingly not stable at all.  There's been quite a downward spiral the last several weeks, compounded by the nursing home moving her roommate to a different wing (for those who are getting closer to the end of their lives).  So now Mom is further confused & very emotional, and feels she's lost her 'job' of taking care of her former roommate.  It gave her something to do, in her mind, at least.

There's now a temporary new roommate who is recovering from surgery and will be released soon as she's able to return home.  That means another change on the horizon, and it won't be good for my Mom.  Perhaps it's time for a private room.  If that would help her, it's well worth the cost.

None of this is pleasant.  Or easy.  But one does what one must, and hopes for the best.  Such is life.

Like Jack, when this life chapter draws to its inevitable close, my partner and I are fairly sure we'll relocate.  He's near retirement; I'm pretty much already there and when Mom's gone neither of us has much reason to stay here.  If nothing else, it's something to look forward to.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on April 23, 2009, 07:31:58 PM
((((((((((Glenn))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 23, 2009, 07:45:15 PM
Quite true, Sason.  But it's difficult to maintain much semblance of one's own life when you're the responsible party for someone who is no longer capable of making their own decisions.  I try to get away as much as possible, and enjoy it when I do, but there's a constant 'nagging' in the back of my mind when I do, and the very real possibility I'll get "The Call" while out of town.

I can understand this about getting the "call" when out of town. I couldn't leave town for the last four years of her life because I was mom's sole care giver.

Though this part of my life is behind me (no it is not all over because there is a hangover from that period in real practical terms that will not go away so easily and is very much a part of my here and now), I thought I should share here what I posted on Jack's new thread (maybe that was not strictly the right place for it)

http://www.davecullen.com/forum/index.php?topic=35672.msg1570436#msg1570436

It makes me wonder what the scene will be like should I reach that stage and need care. India needs to work on a workable social support system on a war footing.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 24, 2009, 03:31:15 AM
Quite true, Sason.  But it's difficult to maintain much semblance of one's own life when you're the responsible party for someone who is no longer capable of making their own decisions.  I try to get away as much as possible, and enjoy it when I do, but there's a constant 'nagging' in the back of my mind when I do, and the very real possibility I'll get "The Call" while out of town.

I can understand this about getting the "call" when out of town. I couldn't leave town for the last four years of her life because I was mom's sole care giver.

Though this part of my life is behind me (no it is not all over because there is a hangover from that period in real practical terms that will not go away so easily and is very much a part of my here and now), I thought I should share here what I posted on Jack's new thread (maybe that was not strictly the right place for it)

http://www.davecullen.com/forum/index.php?topic=35672.msg1570436#msg1570436

It makes me wonder what the scene will be like should I reach that stage and need care. India needs to work on a workable social support system on a war footing.
maya, i suspect i will be able to marry in all 50 states before india comes up with anything like a workable care option for seniors, abandoned or orphaned children, and low (no) income people.  have you considered relocating to some less socially volatile country nearby?  someplace less complacent and less teeming?
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 24, 2009, 03:37:07 AM
glenn...

i find i am astonished at how much are life situations are mirroring each other, although my finances, age/health, and singleness add another layer of angst, i am sure you have issues that while unlike mine, have you spinning too many plates to contemplate.

i can't help thinking a spouse and an income might be nice, though.  *sigh* 
Title: Re: Caring for others with chronic illnesses
Post by: Trigger Hippie on April 24, 2009, 03:48:53 AM
......Although we have responsibilities to our parents, I also strongly believe we have responsibilites to ourselves...

Quite true, Sason.  But it's difficult to maintain much semblance of one's own life when you're the responsible party for someone who is no longer capable of making their own decisions.  I try to get away as much as possible, and enjoy it when I do, but there's a constant 'nagging' in the back of my mind when I do, and the very real possibility I'll get "The Call" while out of town.



I do not miss "The Call" - it took a long while to not shake/steel myself when my cell rang....
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 24, 2009, 03:57:49 AM
maya, i suspect i will be able to marry in all 50 states before india comes up with anything like a workable care option for seniors, abandoned or orphaned children, and low (no) income people.  have you considered relocating to some less socially volatile country nearby?  someplace less complacent and less teeming?

India actually has a lot going on in a positive direction. I'm not sure we are complacent, just overwhelmed because of the impact of globalization on our complex and rapidly changing social setup up. And somewhat carried away by the rat race, ready to jump for illusory material comforts that are dangled before us and ready to emulate a lot of negatives from the developed world.  Also there is a lot of "fleecing" and exploitation by the medical establishment especially. Health care need not be so expensive if the establishments were reined in. There are already lot of social activist movements afoot and an awakening consciousness. We need to address our problems not run away from them. And if India (the government) doesn't deal with it I'm afraid Indians will! We will ourselves  take the initiative. It's going to take time because of the complexities  but it will happen just as progress has on so many fronts. And it will be necessary to motivate the privileged sections to come forward and take up private projects to help those who are relatively disadvantaged. And to have personal involvemnet to ensure that such projects are administered well.

btw what country would you suggest? And what would I be doing in that country? Not sure any country wants people coming in. And not sure I'd be happy someplace else. What we do need (not only India but all of use) is to exchange ideas with other countries so as to widen our own perspectives on how we can solve these problems and that's where posting here and reading what others are dealing with in the area of caring for seniors, is helpful all around.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 24, 2009, 07:18:55 AM
ah, i see.  i was just speaking from my perspective.  i am essentially rootless.  there is no country, locale, or people to whom i am at heart connected.  i am, as it happens tropical by nature and seem to fit in anywhere people have a relaxed way of life... and a rich cuisine.

there seem to be expatriate americans throughout the world, so i don't think twice about it.

you are far more optimistic about india's potential for growth that will be reflected among all its citizens, but then, i am pretty pessimistic about most countries, and for mankind.  i will do all i can on the positive side of the scale, but i think the tipping point likely passed us by.   
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 24, 2009, 10:25:09 AM
Quite true, Sason.  But it's difficult to maintain much semblance of one's own life when you're the responsible party for someone who is no longer capable of making their own decisions.  I try to get away as much as possible, and enjoy it when I do, but there's a constant 'nagging' in the back of my mind when I do, and the very real possibility I'll get "The Call" while out of town.


Glenn, I wasn't trying to belittle the difficulties of being responsible for an aging and dependent parent, I'm sorry if that's how it came across. I can imagine (can I?) how hard that must be, even though I''m lucky enough that my own parents are still independent and fairly healthy. But I'm very aware that can change any day.....and then I'll have to step into the role of caregiver, since my brother lives abroad.

What I was trying to say, maybe clumsily, is that it's easy to loose oneself in the responsibility for the needs and wellbeing of others, esp if it's our own parents (or children, btw), and maybe for a certain period of time it has to be that way. But somewhere in all that, and this is easily said but not easily done, I think we also owe ourself some consideration and selfprotection. I don't know where that balance is, everyone has to find it for her/himself, but I think it's important to at least try to balance it somehow.
Like you say you're doing, for example.  And I'm sorry your mother is having such a hard time, dealing with the loss of her room mate.
Title: Re: Caring for others with chronic illnesses
Post by: Tigs on April 24, 2009, 12:05:23 PM
{{{{{Angel}}}}}

Cowntess  :-*
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 24, 2009, 08:47:18 PM
ah, i see.  i was just speaking from my perspective.  i am essentially rootless.  there is no country, locale, or people to whom i am at heart connected.  i am, as it happens tropical by nature and seem to fit in anywhere people have a relaxed way of life... and a rich cuisine.

there seem to be expatriate americans throughout the world, so i don't think twice about it.

you are far more optimistic about india's potential for growth that will be reflected among all its citizens, but then, i am pretty pessimistic about most countries, and for mankind.  i will do all i can on the positive side of the scale, but i think the tipping point likely passed us by.   

Jack I had typed a detailed response to this and right then internet packed up. Everything stopped working except my yahoo mail. Luckily everything's alright since I woke up today.

I had a lot to say on situations specific to my country which could definitely have parallels both current and from the past, in other cultures which are in a flux. My optimism is based on what I've seen actually happening which is very positive and just needs to be worked on. I will post again in detail about the practical options that can work in India (especially because human bonding is still very strong) and can work elsewhere too. Indians have a strong sense of family and community, only the models that hitherto appeared to work, became too rigid and long outstayed their time; these have broken apart leaving a void. What we need is to create new models that can work to suit the changing needs of the human race as a whole, of which we are all parts. There will be a generation of us coping with that void and we need to hold out and use our hearts and heads.
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on April 24, 2009, 09:49:51 PM
Hope you don't mind my jumping in. My experience of South Indian society was that the elderly were taken care of within the context of the extended family, a group at once larger and tighter than the American nuclear family. With greater mobility in the present (relatively), are there institutions in place to look after the elderly if an extended family is not available?
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 24, 2009, 10:11:21 PM
Hope you don't mind my jumping in. My experience of South Indian society was that the elderly were taken care of within the context of the extended family, a group at once larger and tighter than the American nuclear family. With greater mobility in the present (relatively), are there institutions in place to look after the elderly if an extended family is not available?

Nice to have you jumping in Sandy :)

Tell me more about your experience of South Indian society?  Have you lived in South India? (No I haven't but I've had a taste of the current urban situation in South Indian metros)

These extended families have broken up. It was happening for a long time since the beginnings of independent India and women's empowerment but a very rigid shell concealed the stirrings within and to the outsider it looked like all was fine. But these exteriors have broken up very rapidly.

Extended families (actually derived from the patriarchal and hierarchical joint family system with clearly defined roles that do not fit the modern situation) clearly do not work when families become smaller(birth control) and everyone needs to or chooses to work outside the home and is pulled in different directions by the needs of work, education, etc. Care for the elderly was increasingly taking a back seat even in families that were not subject to these constraints. Elders are welcomed as long as they are useful as in baby sitting and housekeeping. Suffering elders are increasingly unwelcome (and unaffordable if the caregiver is not well off). It is the negative side of evolution of a society towards the importance of the individual's needs for self fulfilment and I wouldn't ever want to reverse the process itself, being one of the beneficiaries. But we need to pay attention to the creation of alternative support systems to counteract the negatives. We are way behind on these alternatives and we ourselves should be pursuing this at the local level.
 
While people are increasingly living alone and not in groups/families, there continues suspicion of single people (cultural hangover?) and unfriendliness towards them in many areas.  But we still have a strong sense of bonding with people that we are thrown together with and the new "families" are being created out of these communities that live and work together. For better, for worse.  Call us a culture of paradoxes!
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on April 24, 2009, 10:31:39 PM
I lived in Madurai for two years and Mysore for one, about 25 years ago. Yes, I do recall the suspicion of individuals living alone or, worse, several unrelated individuals living together.  :D  The two cities were relatively sleepy backwaters then (which I actually enjoyed), and I understand that they have changed very much in the past quarter century.

A Tamil couple I knew in Mysore has set up a free medical clinic in Ramnad district, with the wife donating her inheritance. I do not know how common or extensive this sort of charitable work is, but they feel they have made a contribution. There was an online article perhaps one year ago about an American executive who set his aged father up in Pondicherry for medical and retirement reasons because it was cheaper to do so there (and on a strict vegetarian diet, he not longer needed medication for high cholesterol). Still, the dharmic call for the elderly to cease being a householder and going to live their last years in the forest does not seem viable. It will be interesting to see how new institutions arise there.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 24, 2009, 10:52:27 PM
I lived in Madurai for two years and Mysore for one, about 25 years ago. Yes, I do recall the suspicion of individuals living alone or, worse, several unrelated individuals living together.  :D  The two cities were relatively sleepy backwaters then (which I actually enjoyed), and I understand that they have changed very much in the past quarter century.
I guess your work took you there? These places have changed very rapidly beyond recognition and especially the IT industry (just starting 25 years back) has contributed to that. Within a city there are areas that are more liberal and accepting of diversity. Like my own area in Kolkata (very mixed, economically and culturally diverse). Very positive attitude to single people and very accomodating towards varied lifestyles.

Quote
A Tamil couple I knew in Mysore has set up a free medical clinic in Ramnad district, with the wife donating her inheritance. I do not know how common or extensive this sort of charitable work is, but they feel they have made a contribution.

I think they certainly made a valuable contribution. Each such individual effort is important. Ramanathapuram is a rich district - landowners and business people - so the inheritance could have been substantial and it was wonderful to use it that way. Charitable work is fairly common. As in contributing money. The gap is in where/how the money could be used as well as in th level of human involvement. Keeping things small and controllable always does it better here.

Quote
There was an online article perhaps one year ago about an American executive who set his aged father up in Pondicherry for medical and retirement reasons because it was cheaper to do so there (and on a strict vegetarian diet, he not longer needed medication for high cholesterol).
Yes there are a lot of people who find it cheap by the standards of the developed world - what we would find pretty expensive.

Quote
Still, the dharmic call for the elderly to cease being a householder and going to live their last years in the forest does not seem viable. It will be interesting to see how new institutions arise there.

No forests left sadly :) :) Maybe I would start one of those institutions. It's like getting a group of us to plan now for our own later years. And doing this in small collectives.
btw Prince Manvendra (India's out and proud gay former prince) is setting one up in Gujerat for aged gay persons.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on April 25, 2009, 12:51:57 AM

What I was trying to say, maybe clumsily, is that it's easy to loose oneself in the responsibility for the needs and wellbeing of others, esp if it's our own parents (or children, btw), and maybe for a certain period of time it has to be that way. But somewhere in all that, and this is easily said but not easily done, I think we also owe ourself some consideration and selfprotection. I don't know where that balance is, everyone has to find it for her/himself, but I think it's important to at least try to balance it somehow.

I completely understand what you mean Sonja. We need to invest a part of our energy and attention in our own future well being. It's quite a challenge trying to keep up this process together with the responsibility for and attention towards others. And care for those who are suffering over a long period like Glenn's and Jack's mothers, whose mental state can be so unpredictable and who are emotionally fragile, can sweep one totally away from oneself.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on April 25, 2009, 04:17:23 AM
Sorry for jumping in like this as I am not at the moment taking care of a someone with a serious disease. But I have done so. My second son had a serious kidney disease between the age of 4 and 12. We almost lost him when he first got sick and for those years he was more sick than healthy. Long, long periods at hospital and staying home from school. He wasn't allowed to move, even sat in wheelchair for periods...Heavy medication with tough side effects... Noone could tell if this disease was something he had to live with all his life or if it would grow away. Today we think he is totally cured...

Those years was very hard for me. Hospital care for children in Sweden depends on parents staying at the hospital with the child. And for the long periods nursing him after that I had to 'move' my work and run things from home, mostly. Thinking about those years now I find it strange that our rather developed welfare system doesn't include any kind of psycological support to parents in situations like this. In that sense we were on our own for all those years.... Noone even asked us how we were cooping... As the years went by we also became more and more isolated during the long sick periods at home...

What I DID get from friends even some of my relatives was that I ought to think about ME, take care about MYSELF.... And the only way they seemed to think I could do that was to do things without my son. And the longer a hospital or nursing period became the more I got that advice. It led to me feeling guilty for not being able to make time or space for the ME-things (besides of all the other guilt-things I had, the other kids, relationship to my husband, always being behind in work....). It took me some time to realize this advice had more to do with the friends own anxiety for having someone depending on them, for not being 'free' or something. At one point I got angry with my best friend for this, asked her to stop saying this all the time and instead ask me what I felt about it, what I needed. When we talked it through she could see that my situation made her dread a similar situation. And that this was the reason for her saying this.

In retroperspective I wish I could see this and take it up with my friends long before this. It would have saved me some guilt problems and made these long nursing periods easier to deal with.

((((( Jack, Glenn and everybody taking care of others with serious diseases )))))
And for the rest of us when that time comes.
It's all about love.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 25, 2009, 05:06:40 AM
mia... i had to have virtually the same conversation, and not just about the me time aspect.  i had to tell some very good friends to quit telling me what to do, or what needed to be done or not done, or that i was doing what i was doing all wrong.  i had enough on my mind without being pecked at.  either support me, lend a hand, or just take a hike.  i wound up getting more strokes and understanding from the many random strangers i vented to, most of whom it seemed had gone through something similar, but at a younger age, with a family for support and with better finances, and they were quite aware of what i was going through and how very tough it was.  some of that support came from right here, although i sure wished some of you were closer by physically.

my old friends are back in my life, and i think they are somewhat chastened by their own shortcomings in a time of need, and surprisingly, i don't hold it against them.   
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on April 25, 2009, 06:35:41 AM
mia... i had to have virtually the same conversation, and not just about the me time aspect.  i had to tell some very good friends to quit telling me what to do, or what needed to be done or not done, or that i was doing what i was doing all wrong.  i had enough on my mind without being pecked at.  either support me, lend a hand, or just take a hike.  i wound up getting more strokes and understanding from the many random strangers i vented to, most of whom it seemed had gone through something similar, but at a younger age, with a family for support and with better finances, and they were quite aware of what i was going through and how very tough it was.  some of that support came from right here, although i sure wished some of you were closer by physically.

my old friends are back in my life, and i think they are somewhat chastened by their own shortcomings in a time of need, and surprisingly, i don't hold it against them.   

Oh Jack... I'm sorry you had to go through this.

What you say here makes me think even more about all the time, the years, it took me to put up the boundaries, to realize these 'advices' had more to do with what my friends was dreading than it had to do with my, with our, situation. Can you imagine all the telling what to do or what not to do I got from others as a parent? There was no end to that.....

I'm glad to hear you don't hold this against your old friends. Neither do I. A few times - after these years - I have been able to 'be there' for friends in similar situations. And even if I couldn't be of practical help I learned something from this. In a way that I could at least listen and ask the right questions.

One gets more humble. Isn't it so?
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 05, 2010, 10:23:06 AM
Some of you know that a few weeks before Christmas, as the result of an almost chance blood-test, my husband was found to have severely damaged kidneys and had to have immediate dialysis. He’d had no symptoms at all apart from some tiredness.  This was worrying enough, but further tests showed that it was caused by myeloma, a bone-marrow cancer, which apparently can take several different forms; also people respond to both the disease and the treatments in very varying ways.  There’s no cure at present, but quite a few different methods of trying to control it. 

At the moment everything is uncertain. He may get some kidney function back, but is on dialysis 3 evenings a week for now, luckily at our local hospital 7 miles away, to which he can drive himself.  And he’s on steroids and a low-dose chemotherapy by tablets, which shouldn’t cause severe side-effects.

He’s surprising everyone by how well he looks, and on the whole feels too.  He’s had virtually no side-effects from any of the treatments, so that’s a good start, and all we can hope for for the moment.  It’s also reassuring how impressive, efficient and friendly the service we’ve received from our sometimes maligned National Health is – we really couldn’t ask for anything better.

It’s been a big shock, but we’re both being very positive, and friends and family are so helpful.  I also much appreciate the support I’ve had on the forum – it really does make a difference, and it’s nice too just to come and chat and laugh.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on January 05, 2010, 10:31:38 AM
Just a note for now, to tell you once again that you and Mr M are in my thoughts.

Very much.

Love to you

Dearest ((((((Sara))))))!!!

 :-* :-* :-* :-* :-*



Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 05, 2010, 01:37:41 PM
Just to let you know that you and Mr M are in our thoughts and prayers. So glad to hear that the situation has stabilised a little and that you and the patient are keeping positive and cheerful.




(http://i88.photobucket.com/albums/k189/skinnjes/celebration%20animated%20gifs/bouquet-roses.gif)
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on January 05, 2010, 04:23:04 PM
Hugs, Sara.

Remembering both of you in my prayers still.

Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 05, 2010, 06:18:53 PM
Thanks for posting Sara, and please keep us updated when possible.

Keeping Mr. M and your and family in my prayers.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on January 05, 2010, 10:52:24 PM
Keeping you both in my thoughts and prayers, Sara.
I so hope things continue to go well.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 06, 2010, 03:16:11 AM
You and M are in my thoughts, Sara.

I'm glad you're satisfied with the treatment so far, and hope things will go well from now on as well.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on January 06, 2010, 08:06:07 AM
It’s been a big shock, but we’re both being very positive, and friends and family are so helpful.  I also much appreciate the support I’ve had on the forum – it really does make a difference, and it’s nice too just to come and chat and laugh.

(((Mr M and Sara)))

thinking fondly of the two of you, wishing all the best - improvement, courage, strength, optimism and joy!!

many good vibrations for the two of you from Nice!

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: roby on January 06, 2010, 11:00:07 AM
I've just found this thread, better later than never...

(((Sara))) a big Italian hug to you and your husband. Please go ahead with optimism.

I try to send positive vibes from here, they should cross the Channel easily   :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 06, 2010, 11:30:47 AM
((((((Mia, Jess, Fritz, Chuck, Linda, Ing, Roby))))

Thank you all so very much for your thoughts from around the world (and the beautiful flowers, Jess) - they mean so much to me, and Mr M is surprised and touched by your responses.

I wanted to be able to talk about it all occasionally without making the Diner too medical so will post updates from time to time.

Love to you all'
Sara  :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on January 12, 2010, 03:00:44 PM
Ciao Sara.

Just read your post about your husband.

What can I say?

Keep us updated, please send your husband my warmest hugs...

I think I can understand a little bit how you feel. In 2008, in spring, my mother discovered she had a salivary gland cancer. It was totally unexpected, she had this 'innocent' little lump inside one cheek.
She was operated in August and had radiotherapy after that.
For the time being, it's not too bad. Apart from a little puffiness of the cheek, and having lost part of the ability to taste food.

I found out that the psycological aspect is the most relevant. The tremendous blow of having cancer.

So, it is very good that you two manage to be positive about it.

I think this can be of great help for coping with the disease. My very best wishes of recovery for Mr.M!

And keeping (((you))) in my thoughts.

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 13, 2010, 01:59:40 AM
Thank you so much for that, ((((Daniela))).  I remember about your mother, and I'm glad she's pretty well now.

(I also remember when you told us that I said I wasn't sure whether or not I'd want to share something like that, if it ever happened to my family. And now that it has, and I have talked about it here, I know how much support it has given me.)

Last week Mr M had low haemoglobin - apparently quite common with his treatment and condition - and had a routine blood transfusion.  And since then he's been pink and full of energy - walked up a hill faster than I did.  In fact he says he's feeling completely normal, and long may that last.  It certainly makes it easier to live in the present, and at the same time to be hopeful about the future.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on January 13, 2010, 03:13:28 AM
I am very glad to hear you that you feel support, that talking about it here can be of good.

And to hear about the effects of the blood transfusion. I am sure that energy is good for Mr M and good for you after the last couple of weeks.

(((((((Sara))))))) !!
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on January 13, 2010, 03:14:05 AM
A special hug to you ((((((Daniela))))))!!

Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 16, 2010, 01:46:40 PM
Glad to hear that M is feeling so well Sara!!   :-*
Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 16, 2010, 03:27:40 PM
Mr M is an inspiration to anyone facing difficulties in life. Much love and encouragement to you both.
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on January 16, 2010, 04:03:25 PM
Another note to you, Sara.

I'm keeping you and Mr M in my thoughts and prayers.

I'm glad he's getting such good medical care, and that his procedures are comfortable for him.

It's good to hear that he's feeling so well.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 17, 2010, 01:00:14 AM
((((Mia, Sonja, Jess and Debbie))))

Thank you for your thoughts :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 05, 2010, 10:44:05 AM
My husband's haematologist rang at half-past seven yesterday evening to say that his bone marrow is starting to show very good results from the treatment for the myeloma.  We were impressed and encouraged that he'd taken the trouble to ring, when Mr M has an appointment with him next Friday anyway, and that he sounded so positive as well.

This was the first measurable improvement that we've been told about, in the 6 weeks since his diagnosis, so we're both feeling good :) :) :).
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on February 05, 2010, 10:51:36 AM
Good to hear, ((((((((Sara and Mr M)))))))))))))!!!

Title: Re: Caring for others with chronic illnesses
Post by: brian on February 05, 2010, 12:12:06 PM
So pleased. Good to know you have a caring specialist.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 05, 2010, 01:52:01 PM
Good to hear, ((((((((Sara and Mr M)))))))))))))!!!



Thanks, Fritz :-*.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 05, 2010, 01:53:24 PM
So pleased. Good to know you have a caring specialist.

Yes, we're very grateful for it - thanks Brian.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on February 05, 2010, 04:15:46 PM
That is just the best news, Sara. Love to you and to Mr M.
Title: Re: Caring for others with chronic illnesses
Post by: roby on February 05, 2010, 04:25:22 PM
((Sara!!))

So glad to read about your good news  :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on February 06, 2010, 02:05:18 AM
My husband's haematologist rang at half-past seven yesterday evening to say that his bone marrow is starting to show very good results from the treatment for the myeloma.  We were impressed and encouraged that he'd taken the trouble to ring, when Mr M has an appointment with him next Friday anyway, and that he sounded so positive as well.

This was the first measurable improvement that we've been told about, in the 6 weeks since his diagnosis, so we're both feeling good :) :) :).

that is wonderful to hear, sara!! i'm keeping my fingers crossed that from now on, you'll only see improvement and recovery!  :)
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on February 06, 2010, 02:22:12 AM
This is wonderful to hear.

(((((((Sara and Mr M)))))))

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 06, 2010, 04:24:47 AM
(((((Jess, Roby, Martina, Mia)))))

Thank you all so much.
Title: Re: Caring for others with chronic illnesses
Post by: atruant on February 06, 2010, 08:13:20 AM
Great news Sara! All the best to Mr. M!
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 06, 2010, 09:45:45 AM
Thank you for that, John.

I was just going to talk to you in the Diner the other day (?yesterday), but you disappeared :).
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on February 06, 2010, 10:06:04 AM
Thanks so much for the updates, Sara. I know you and Mr. M are relieved.
Such good news.
I am so glad!
Title: Re: Caring for others with chronic illnesses
Post by: Sason on February 06, 2010, 10:35:33 AM
Wonderful news, Sara!!!   :-* :-*

So glad to hear you've had such positive news!!
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 06, 2010, 10:36:10 AM
((((Linda and Sonja))))
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on February 11, 2010, 02:23:53 AM

This was the first measurable improvement that we've been told about, in the 6 weeks since his diagnosis, so we're both feeling good :) :) :).

That's really wonderful news, Sara. So glad to hear this.
Title: Re: Caring for others with chronic illnesses
Post by: jack on March 28, 2010, 06:36:54 AM
sara, i hadn't been to this thread in a while, as i have largely moved on to other parts of the web, but i do want to wish you and your husband the best results and the strength to weather the storm.  i can't help but reflect how lucky you are to be in the UK to deal with this health crisis.  for a good many here, this might have gone undiagnosed for lack of medical access, or gone untreated for lack of insurance.  even those who had access and insurance might find themselves buried in debt by uncovered treatments.  so sad.

also, an update on my mother.  she is in a full care facility, not the best, but its the best she can get access to.  her alzheimers progresses, and her focus narrows to is she comfortable or not, and she sleeps much of the day.  she still knows who i am, but little else of the world outside her bed is of interest.  its not a fate i would wish on any of us, but she fought so hard in life so long, and fears death, she will not willingly let go.  prayers for her ease would be welcome.

jack
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on March 28, 2010, 07:21:58 AM
Jack, thank you, and yes, I will pray for your mother and you.  I know how heartbreaking it is to see one's mother - or anyone - changed by dementia.

I was wondering whether to post an update on my husband, but there isn't a lot to say except that he is generally very well and everything stiil seems to be going in the right direction, with amazingly few side-effects  Not much change in his kidneys though, so dialysis wil continue for the indefinite future, but when he comes off the chemo they may be able to be more aggressive to try and kick start the kidneys again - there's still hope.

Eventually he'll probably change to peritoneal dalysyis at home, but either way we are planning holidays - Scotland with dalysis in Edinburgh in June, and Australia to our daughter next January.

And yes, the health service is doing him proud - it doesn't always but we've been very lucky. The thought of it not being available would be terrifying - insurance is very expensive, and so many people couldn't afford it.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 28, 2010, 07:58:56 AM
Sara, glad to hear about M's condition, that it's more or less status quo and not worse. And still with hope for progress!

It seems the dialysis works fine for him, and it's great that you're planning vacations under these circumstances!!!
Title: Re: Caring for others with chronic illnesses
Post by: janjo on March 28, 2010, 12:39:05 PM
Bravo! To that.
So glad to hear all of the positive news, and of Mr M, and your own, positive outlook.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on April 18, 2010, 01:53:41 AM
Just a short update on my husband's myeloma (bone-marrow cancer). The chemo is still producing positive results - the proteins in his blood which shouldn't be there dropped from over 2000 in December to under 100 now and still gradually falling (I don't really understand except that this is good  :)).  When the figures have stabilised for 3 readings he'll come off the chemo and we'll see what happens.  The 3 times a week dialysis continues, but fairly soon he should change over to peritoneal dialysis which he can do every day or night at home so we'll have more flexibility. We have a week's holiday in Scotland booked for June, with dialysis in Edinburgh - everyone is very helpful.

So they are pleased with him, and of course we're pleased too.  I probably won't put more updates here for the moment - just assume things are going well.  Most of the time we just carry on as normal as far as possible and don't worry - but at odd moments it hits me, and I know that the uncertainty about the future's always there.  But then the future is always uncertain (sorry, cliché) and I'm so grateful that the treatment is effective and that he's not suffering.

And it helps enormously to have the support that I know is here.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on April 18, 2010, 05:51:59 AM
Thank you, Sara. Good to hear.

Title: Re: Caring for others with chronic illnesses
Post by: janjo on April 18, 2010, 06:09:31 AM
That is the most wonderful news, Sara. Love to Mr M to keep up the excellent progress.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on April 18, 2010, 07:46:50 AM
((((((((((((Sara and Mr M))))))))))))

I am so pleased to hear this.

Thank you for letting us know, Sara.

Love!!
 :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on April 18, 2010, 10:05:41 AM
Thanks so much for letting us know the progress of Mr. M.
I know you are so thankful for the good reports.

I also know about the thoughts at the odd times.
There are no clichés during times like this. :-*
Title: Re: Caring for others with chronic illnesses
Post by: Nikki on April 18, 2010, 11:31:36 AM


Sarah, I just read this thread about Mr. M.  Both of you are in my prayers.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 18, 2010, 12:29:57 PM
Wonderful news, Sara, that the chemo is working so well!!

It seems the dialysis is what affects your everyday life the most, and that you've found ways to deal with it.

Overall good news!! I hope it continues that way!!   :-*
Title: Re: Caring for others with chronic illnesses
Post by: Paul029 on April 18, 2010, 12:53:24 PM
Dear Sara,
My sincere best wishes for M's continued improvement. 

(http://i412.photobucket.com/albums/pp201/rasalgethi_photo/G-4BestWishesDove.jpg)

Paul


Title: Re: Caring for others with chronic illnesses
Post by: brian on April 18, 2010, 01:16:57 PM
Am also very glad to hear of the improvement and will continue to remember you both in my prayers.
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on April 18, 2010, 01:57:26 PM
Same here, Sara.  :)



 :-*


Title: Re: Caring for others with chronic illnesses
Post by: Sara B on April 18, 2010, 02:22:21 PM
Thank you all so very much for your thoughts  :-*.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on April 19, 2010, 02:28:17 PM
Thanks so much on the update, I'm so glad that he continues to improve.  ;D
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on April 20, 2010, 01:28:23 PM
That's very encouraging news about Mr M, Sara.  I will continue thinking of both of you.

Good luck with the Scotland trip.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 11, 2010, 11:07:57 AM
Mr M saw the haemotology consultant today. He (the doctor) is not a good communicator - very nice, and we have faith in him, but he throws facts, opinions, results and names of drugs at us in a not-very-easy-to-follow foreign accent.  However, as a result of asking what we hope are the right questions - like "Should we feel pleased about this?" (we really had no idea), answer "Oh yes!" in a surprised voice - we think:

- M is in partial remission from his bone-marrow cancer ("but this term is very vague")
- He has come off the chemo and steroids for the moment and will be monitored every month
- His kidneys are no better but he can start the process of getting ready for home dialysis which is flexible and portable

So yes, we are happy :).
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on May 11, 2010, 11:25:05 AM
So good to hear Sara  :)

Title: Re: Caring for others with chronic illnesses
Post by: janjo on May 11, 2010, 12:08:27 PM
Excellent news, Sara. Please give him a hug from us.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 11, 2010, 01:08:37 PM
Rose,  thanks so much :) :).  
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 11, 2010, 01:09:11 PM
And Jess, hug will certainly be forwarded :-*.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on May 11, 2010, 01:19:53 PM
Fantastic news, Sara!  ;D
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 11, 2010, 01:20:46 PM
(((Chuck)))
Title: Re: Caring for others with chronic illnesses
Post by: brian on May 11, 2010, 02:35:16 PM
Yes, Good to hear this, praying the good news just keeps getting better.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 12, 2010, 01:45:53 AM
Thank you, Brian - yes please keep him in your prayers from time to time :).
Title: Re: Caring for others with chronic illnesses
Post by: Sason on May 21, 2010, 01:29:37 PM
Excellent news, Sara!!

So glad to hear it!   :-*
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on May 25, 2010, 04:50:06 PM
Good to hear the news, ((Sara)).  I continue to think of you both.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on June 23, 2010, 11:22:29 AM
Only a few weeks ago my stepmother got diagnosed with cancer in a tonsil and she is now going through a 7 week radiation treatment.

Today, after four of those weeks it is hard for her. It is hard for me to know how to be there for her.

And now the midsummer celebration weekend is coming up.....

Hope I can be there with and for her as much as she needs.

Love her very much.

Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on June 23, 2010, 03:01:55 PM
(((mia)))

I know how hard this is from experience and just want you to know I'm thinking of you...
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on June 23, 2010, 03:07:32 PM
(((mia)))

I know how hard this is from experience and just want you to know I'm thinking of you...

Thank you so much!!!!!!!

Means a lot to me to hear.

((((((hugs)))))))!!
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on June 23, 2010, 03:13:27 PM
((((((((((((((((((Mia)))))))))))))))))))

My thoughts are with you, and your stepmother right now!

I know this is really hard from my own experience too.. 

Love and strength and courage to you!



Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on June 23, 2010, 03:17:49 PM
Thank you so very much ((((((((((((((((((((Sue)))))))))))))))))) !!
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on June 23, 2010, 03:20:55 PM
You're welcome ((((((((((((((((((((((Mia))))))))))))))))))))) !

Title: Re: Caring for others with chronic illnesses
Post by: desertrat on June 24, 2010, 03:26:30 AM
((((((((((((((((mia))))))))))))))))))))

i wish you lots of strength for the next weeks! but i know that it will be easier for your stepmother knowing that you are there for her and with her.  :)
Title: Re: Caring for others with chronic illnesses
Post by: atruant on June 24, 2010, 07:16:17 AM
Love and strength to you and your stepmother ((((Mia)))).  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on June 24, 2010, 01:12:57 PM
Thank you so much (((((((Martina))))))) and (((((((((((John)))))))))

Your thoughts means so much to me.

 :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: roby on June 24, 2010, 03:59:58 PM
(((Mia))

Love and positive thoughts from me too  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on June 25, 2010, 08:55:18 AM
Mia,

Good luck. Having been on the other side of this situation, I can tell you it is always appreciated to have someone there for you.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on June 25, 2010, 10:04:19 AM
Dear (((Mia))))

Love and strength to your stepmother and to you and all the family.
 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on June 26, 2010, 02:19:08 PM
(((((Roby, Sandy and Sara)))))) !!

Thank you so much for your thoughts.

Title: Re: Caring for others with chronic illnesses
Post by: Sason on June 26, 2010, 04:27:26 PM
Wishing all of you the strength you need now, (((( Mia ))))!
Title: Re: Caring for others with chronic illnesses
Post by: janjo on June 27, 2010, 07:35:26 AM
And from me too, Mia. I know how hard these things are.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 07, 2010, 09:35:37 AM
Thank you for your thoughts ((((Sonja and Jess))))))

Days like this thoughts from friends are indeed needed. Today my mother was also taken in for hospital care. Something is really wrong with her. She is to stay for two days as tests will be taken. I am really worried.

My stepmother has a bed at the same hospital for the last week of the radiation treatment. Last treatment on Friday. She is really weak now.

It's a bit to much right now...



Title: Re: Caring for others with chronic illnesses
Post by: Sara B on July 07, 2010, 10:34:49 AM
Thank you for your thoughts ((((Sonja and Jess))))))

Days like this thoughts from friends are indeed needed. Today my mother was also taken in for hospital care. Something is really wrong with her. She is to stay for two days as tests will be taken. I am really worried.

My stepmother has a bed at the same hospital for the last week of the radiation treatment. Last treatment on Friday. She is really weak now.

It's a bit to much right now...





(((Mia))), I'm so very sorry to hear about your mother now.  Much love, and my thoughts are with you :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on July 07, 2010, 11:19:52 AM
(((((mia))))) i really hope they are both going to be well soon again!

(on the positive side - having the m both in the same hospital saves you a lot of time when visiting! ;) )
Title: Re: Caring for others with chronic illnesses
Post by: brian on July 07, 2010, 01:22:08 PM
Thinking of you Mia. Hope they will both soon be on the road to full recovery.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 07, 2010, 01:22:16 PM
Thank you (((((Sara)))))))

Thank you (((((Martina)))))

Thank you ((((((Brian))))))

Your thoughts mean so much to me right now. :-* :-* :-*

12 hours of waiting for test results... Guess I am in for a sleepless night....
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on July 07, 2010, 01:58:27 PM

It's a bit to much right now...


It IS too much, it IS too much, it IS too much (((((((((((((((((((((((((((((Mia))))))))))))))))))))))))))))))))))))))

I am so much with you in spirit, and thoughts, and hope  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 07, 2010, 02:27:58 PM
Thank you so much for being with me

((((((((((((((((((((((((((((((Daniela))))))))))))))))))))))))))))) !!

It means more than you know....

You and your mother are in my thoughts too.

Love you!

 :-* :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 07, 2010, 11:41:18 PM
((((((Mia))))))

I am thinking of you and your mother and step mother.
My prayers are with all of you.
Please make sure to take care of yourself as well.
Haven't been around much as family is still here, I am with you in spirit.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 07, 2010, 11:43:51 PM
Thank you ((((((((((Linda))))))))))

I am just about to go to the hospital. They moved mother to intensive care.

Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 07, 2010, 11:48:55 PM
I am praying , Mia!! :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on July 08, 2010, 12:48:52 AM
Thank you ((((((((((Linda))))))))))

I am just about to go to the hospital. They moved mother to intensive care.



(((((((((((((((((((((((((((((((((((((Mia)))))))))))))))))))))))))))))))))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on July 08, 2010, 04:20:30 AM
(((Mia)))

Keep us posted, sweetie.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 08, 2010, 05:25:42 AM
Oh Dear, Mia.

Thinking of you with love.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on July 08, 2010, 05:30:44 AM

I am just about to go to the hospital. They moved mother to intensive care.

((((((((((((((((((((((((((((Mia)))))))))))))))))))))))))))

I am keeping your mother and stepmother and you in my prayers!

This is too much for you.  Please know that I am there with you in spirit.

Much much love to you.

 :-* :-* :-* :-* :-*

Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 08, 2010, 01:43:14 PM
Thank you ((((((((Jess)))))))))

and thank you ((((((((((Sue))))))))))

Your thoughts mean so much to me.

LOVE!  :-* :-* :-* :-* :-*

Sitting here in the heat in my mothers apartment trying to collect my thoughts after going back and forth between my mothers on different floors at the gigantic hospital. It feels surreal but I am thankful they are both taken care of.

This afternoon I followed as mother was moved from intensive care to the lung specialist place (not sure what you call it so I use place)

She was really bad last night. Really really bad. It was obviously the breathing and a stroke was suspected too. It seems as it is only the lungs though. It's from the smoking. COPD of the worse kind. She has refused to seek a doctor for a very long time.

It is now stabilized we think. She got some oxygen and got rid of the Carbon dioxide "poison" that was so dramatic last night.



Title: Re: Caring for others with chronic illnesses
Post by: killersmom on July 08, 2010, 02:24:51 PM
Thanks for keeping us posted (((((MIA))))

I know about the smoking and the COPD because of Rick.

Continuing to think of you and both mothers.
Take care of yourself! :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on July 08, 2010, 02:50:59 PM
(((( Mia ))))   :-*

Wishing you strength to cope at this difficult time. Hoping for the best possible outcome for them both.
Title: Re: Caring for others with chronic illnesses
Post by: roby on July 08, 2010, 03:12:16 PM
Dearest (((Mia)))

thinking of you, praying and trying to send positive vibes from here.

Thanks for finding the time to let us know how the things are going on.

All my love.
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on July 08, 2010, 03:43:21 PM
Oh Mia  :(

You and yours are never far from my thoughts....

I can't believe that both are so bad at the same time.... :(
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on July 08, 2010, 04:45:35 PM
Mia, keeping you and your family in my thoughts and prayres.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on July 08, 2010, 05:22:40 PM
(((((((((((Mia)))))))))))))))), I'll put them on the choir prayer list on Sunday.

Title: Re: Caring for others with chronic illnesses
Post by: kathy on July 08, 2010, 06:32:09 PM
 :)  Dear ((((((((((((((((((((Mia)))))))))))))))))))))))):

I am so sorry to hear about the illnesses in your family and am thinking about you.  Lung diseases from smoking (COPD, chronic emphysema w/overlying pneumonia) are what took my beloved daddy; I hope & pray your mother and stepmother come out of this well and strong.  It is very hard on family members to see, I know.  

Thinking of you...

Much hugs, love and wishes from
kathy   :-*
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on July 08, 2010, 08:08:17 PM
((((((((((((((((((((((((Mia)))))))))))))))))))))))))


Thank you for the update... I am keeping both your mothers and you in my thoughts and prayers. 

My own mother is suffering now from the long term effects, emphysema, of 50 years of smoking..  It's such a destructive habit, and she is so debilitated now from it. 

Although there is no cure for COPD, I hope the doctors can make your mother's breathing easier and help her to regain some normalcy.  Hoping too that your stepmother will heal quickly from the treatments she is undergoing.

Sending you loads of strength and love and healing thoughts to you and both of your mothers.

 :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: kathy on July 08, 2010, 08:32:34 PM
What constant, long-lasting smoking does to a person!!  It is so awfully sad to see this in your loved one(s).  My daddy was so bad that he could not speak;he still understood for a while; it was awful seeing him like that.  Some hospitals and doctors are so awful too; I envy anyone who gets a caring doctor, fine hospital setting, and caring staff.    
He was always so active and fit; even to an elderly age, yet he became so frail and ill.  And some loved ones go into denial.  
Those damned, cursed cigarettes. >:(  

I am so truly sorry to hear of anyone going through this.  

kathy   :'(     :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 09, 2010, 02:40:58 PM
Thank you so much for caring dear ((((((((((friends))))))))) !!

Am back home. Stepmother had the last radiation treatment. I am really happy about that. Now it is the waiting game to see when she can start to eat again (and the hopes that the treatment worked...). And when we can take her out to the island.

Mother is stabilizing as it seems. We are preparing for learning to live with the disease phase... It is not going to be easy for her, or for us.... I don't know what to expect from the weeks to come.... But I do hope that she will get some help to breathe and that it will help her to eat and to come back to some lust for life. And to moving.

I will of course try to be there for them both. Not sure if what I can do will be enough or if I can do the right things.... I can only say I will try.

I am really grateful to share it with my brother, and to share the concerns for my mother with our stepfather. How hard it would be if they weren't around.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on July 09, 2010, 02:58:00 PM
Dear (((Mia)))

I'm so glad that they have both come through these acutely anxious times, and that you now have the possibility of hope for a way forward.

Of course you will do what seems to be the best that you can at any particular time - nobody can do more than that, and I'm sure you'll be a wonderful support. And don't forget to look after yourself too :-* :-* :-*.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 09, 2010, 03:57:22 PM
Thank you ((((Sara)))))

Thank you for caring and thank you for the thoughts about looking after me too.

For the same thoughts; thank you ((((Linda)))))!!

It is of course the hardest.... I am so grateful for having all you guys around.

LOVE

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on July 09, 2010, 04:02:11 PM


(((Mr M)))

(((Mia's stepmother)))

Thinking of you very much and sending loads of encouraging vibes to England and Sweden.

 :-* :-* :-*

Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 09, 2010, 05:46:03 PM
Can I second everyone elses thoughts here, Mia.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on July 10, 2010, 02:50:29 PM
What Jess said!

Hope things will calm down a little for you and them now, Mia, and that you all will be able to cope with what is to come.

Living with a chronic diesease like COPD isn't easy, but it's possible.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 10, 2010, 04:12:45 PM
Thank you ((((friends)))) for your support and thoughts about my mother and stepmother.

It seems mother is now on the safe side when it comes to oxygen in her blood. It is good to talk about how to live with the disease. First today I realized that she almost died the other night.

I am grateful to still have her around. A little longer.



Title: Re: Caring for others with chronic illnesses
Post by: kathy on July 10, 2010, 04:18:54 PM
Oh!!   :-*
Mia...it's so sad to go through.
Thinking of you,
kathy   :-*
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on July 11, 2010, 03:11:19 PM
Oh mia!  I am so glad things are a little better with you at the moment and I know that you will be trying to be all things to everyone at the moment but.....take some time for you - it is not selfish but very necessary if you are to cope - I learnt that the hard way  :(

Anyway I am thinking of you  :)

Hugs

Rose x
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on July 11, 2010, 03:43:49 PM
((((((((((((((((((Mia)))))))))))))))

I am so happy to hear that your mother has turned the corner and is doing better now, and that your stepmother has taken her last treatment.

I will keep both of them, and YOU, in my thoughts and prayers and wishing them both good recoveries.

I know that you want to do all that you can for each of them, but please remember to take care of yourself during this time!

Sending you much love and strength and courage for these next days and weeks.
 :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on July 12, 2010, 09:30:36 AM

Renewed good vibes to (((Mia, mother & stepmother))) !

All our positive and confident thoughts from Nice to you and your family.

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 12, 2010, 11:20:49 AM
(((((Kathy, Rose, Sue and Ingmar))))))))

Thank you for your thoughts and for your support. It is really helpful. Just came home from the hospital. Every day I do so with a little bigger hope for mother who is improving by the day. A plan for her continued care is being made that we all feel very good about. Stepmother has now moved home with nurses coming there to help as long as it is needed.

We have a good health care in Sweden.

I feel exhausted at the moment for many reason. Had a mother - daughter discussion yesterday that became a little too much. It is all sorted out now so all is well. Except the exhaustion. I am seeing my own  doctor on Wednesday, I think I need to get some help to sleep. Maybe some counselling too for some time.
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on July 12, 2010, 02:41:36 PM
 ((((Mia))))

 Good to hear on all counts  :)
Title: Re: Caring for others with chronic illnesses
Post by: kathy on July 12, 2010, 02:48:32 PM
Dear (((((((((((((((((Mia)))))))))))))))))))))) --

To follow HR, this is good to hear on all counts.  I truly wish all will be well regarding each issue.
Thinking of you, your exhaustion, feelings, etc.

Much hugs,
kathy   :-*      :-*
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on July 12, 2010, 04:07:18 PM
It is all sorted out now so all is well. Except the exhaustion. I am seeing my own  doctor on Wednesday, I think I need to get some help to sleep. Maybe some counselling too for some time.

YOU need some support and help yourself. Sleep is important, and some "mental" time away from it all.

I wish you every possible luck to get some personal relaxation.

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: roby on July 13, 2010, 12:59:34 AM
Take care of yourself too, Mia   :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on July 13, 2010, 01:08:05 AM
((((((((((((((((((Mia))))))))))))))))))))))))

you've been giving so much the last weeks, it is time for you to think about yourself, too. get what you need to feel better!
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on July 13, 2010, 12:03:52 PM
Your support is wonderful and overwhelming ((((friends)))

Today I took a lot of the day 'off' and spent it with Andy who was visiting Stockholm for the day. It was a really good day, the weather and everything was perfect.

I feel much better now. And the news from the hospital are good today. Healing process has begun for both my mother and stepmother.

 :) :) :) :) :)

Thank you all for being here. It means much more than I can express.

Love!

 :-* :-* :-*


Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on July 13, 2010, 03:03:32 PM
Great way to spend the day Mia  :)

I am so pleased for you bet it gave you a much needed boost!
Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 13, 2010, 03:54:34 PM
Excellent news, Mia, and how could you not feel better after spending the day with Andy?

Title: Re: Caring for others with chronic illnesses
Post by: atruant on July 13, 2010, 04:06:49 PM
^^^^^

Haha! Great news, Mia!! And I cherish the time I had with you, and Jess, and Andy in Oxford!

Never enough time, but better than never.....
Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 13, 2010, 04:25:04 PM
I can't tell you how much I regret not having more time to talk to you when we were in Oxford, John. I hope we can get together again at some time in the future. Brokies being what they are. I feel sure we will.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on July 13, 2010, 04:30:44 PM
I'm glad to hear about the positive news, Mia!
Title: Re: Caring for others with chronic illnesses
Post by: Sason on July 16, 2010, 04:43:32 PM
Good news about your mother and stepmother getting better, Mia!
Title: Re: Caring for others with chronic illnesses
Post by: kathy on July 16, 2010, 06:36:58 PM
Oh, I am so glad, Mia.  :-*

kathy   :-*
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on August 02, 2010, 03:23:54 AM
YOU need some support and help yourself. Sleep is important, and some "mental" time away from it all.

I wish you every possible luck to get some personal relaxation.
   Am afraid I missed hearing the news, Mia, as I don't always get to this thread.  But Ing is so right.  I hope you get plenty of rest!
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on August 03, 2010, 06:31:36 AM
((((((((((((((Mia))))))))))))))))

I'm glad the news on both your mothers is positive. 

PLEASE, remember to take care of yourself in all this, that is very important, and to make sure that you get any help you might need for YOU. 

Thinking of you and both your mothers with much love!

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 04, 2010, 04:17:22 AM
An update on my husband - really that there's no change, which is definitely good.The myeloma still seems to be under control and he's not on daily medication.  Check-ups have decreased to every 8 weeks now.

There's no improvement in his kidney function, but next week he's going to  be trained to do peritoneal dialysis at home - to begin with it's four 40-minute sessions a day, with the later possibility of a small machine which does it all for him overnight (every night).  It shouldn't disturb his (or my) sleep once he gets used to it.  So we should be ablre to start travelling again, and hope to manage an orchestra trip by car to France in October, one way or another.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on August 04, 2010, 04:20:23 AM
Hello Sara,

I'm glad that his condition has held steady.  I hope the sessions are not uncomfortable.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on August 04, 2010, 07:26:23 AM
That is the most wonderful news. It is amazing how the technology has leapt forward to make all these things possible. Mr M has such a good and positive attitude too, which has stood him in good stead.
Hugs to you both, :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 04, 2010, 08:30:41 AM
Thanks, Chuck and Jess.  The haemodialysis he's had up till now in hospital hasn't been uncomfortable, apart from muscle cramps which are now almost gone. and as far as he knows the new procedure shouldn't cause any problems.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on August 04, 2010, 08:36:28 AM

Glad about these news, Sara and Mr M ! And here's to travelling & singing in France!

 ;) ;) ;) ;) ;)
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on August 04, 2010, 08:42:26 AM
This is good news ((((Sara and MrM))))!
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 04, 2010, 09:26:48 AM
Glad about these news, Sara and Mr M ! And here's to travelling & singing in France!

 ;) ;) ;) ;) ;)


(((Ingy and Sue))))

(it's playing the double bass for him and I'm just a 'spouse' :D)
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on August 04, 2010, 09:53:36 AM

Spouse, mouse = it's all music to me!

 ;)
Title: Re: Caring for others with chronic illnesses
Post by: brian on August 04, 2010, 01:04:47 PM
Good to hear, I hope it all goes well.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on August 04, 2010, 01:15:51 PM
Thank you for your kind and caring words ((((friends))))
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on August 04, 2010, 01:17:02 PM
I am glad about these news ((((Sara and Mr M)))))
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on August 04, 2010, 02:55:07 PM
It is always a good to have a trip to plan for...

Glad all is going well Sarah  :)
Title: Re: Caring for others with chronic illnesses
Post by: Sason on August 04, 2010, 03:52:52 PM
That is truly wonderful news, Sara!

I'm so glad M's condition is stable, and the home dialysis will be much easier once he gets used to it.

(((((( Sara and M )))))))
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on August 05, 2010, 03:30:15 AM
wow, i'm really happy for you sara! i'm glad and thankful that we live in this really far developed and rich place in the world, where damaged kidneys can be managed to only become a minor disability in daily life.   :)
Title: Re: Caring for others with chronic illnesses
Post by: roby on August 05, 2010, 04:11:53 PM
I am so glad to read good news from Mia and Sara  :-*

(((Mia and Sara)))

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 06, 2010, 01:38:29 AM
(((Brian, Rose, Mia, Martina, Sonja, Roby)))

Writing that list of names makes me feel so good - thank you.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 06, 2010, 01:40:05 AM
wow, i'm really happy for you sara! i'm glad and thankful that we live in this really far developed and rich place in the world, where damaged kidneys can be managed to only become a minor disability in daily life.   :)

I know - and the treatment for myeloma has made huge progress in the last few years.  No cure yet, but more possibilities for containing it.
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on August 06, 2010, 01:43:17 AM
So glad about the good news, Sara.

To Mr.M:    Keep on travellin', and playin', and jammin'! (I mean apricot-jammin' of course)  :)
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 06, 2010, 02:28:24 AM
So glad about the good news, Sara.

To Mr.M:    Keep on travellin', and playin', and jammin'! (I mean apricot-jammin' of course)  :)

I'll tell him! :D.
Title: Re: Caring for others with chronic illnesses
Post by: chuckyv on September 22, 2010, 01:06:25 AM
The forum has grown so huge now, that I am still finding new areas. This thread is fascinating. I have experience of caring for chronic & terminal patients, and it is never easy. I used to find it incredibly annoying when people would say that it takes a "special" kind of person to do that kind of a job. No it does not. You get on with it, do what is required of you, and remain accountable for your actions. Empathy does not always have to come into it, although certainly helps the patient, and the carer. When people say things like "special", they mean well, and are usually at a loss for words, or find the sometimes gruesome nature of the job difficult to talk about. 
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on October 27, 2010, 06:49:27 AM
Another positive update on my husband Michael.  It's now 10 months since the diagnosis of multiple myeloma and kidney failure, and 6 months since he's been in 'partial remission', no longer on any cancer drugs. The haematologist seems particularly pleased that he's done so well on the first level of chemotherapy.

He now does peritoneal dialysis at home, 3 times a day, and this is going fine. He has done it in car parks, in a tent, on the car ferry crossing the channel, in French hotels......  Travelling is ok in our own car, but will be more difficult flying, as he uses about 6 litres of saline/glucose solution every day.  It can be delivered all over the world, so will be fine for going to Australia for 3 weeks in February to visit our daughter, but spontaneous shorter trips may be hard.  But we adapt, and there is a lot of support available.

He never complains, just gets on with it.  Most of the time I don't worry too much, but there's an anxious time whenever the blood tests come around.  But thank God, all going well.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on October 27, 2010, 07:21:39 AM
That is such good news, Sara. Michael is a very special and inspirational person, and he shows this by the way he is coping with his illness. It is an amazing testimony to his strength, courage and "can do" attitude.
Lovely to hear how well he is doing.
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on October 27, 2010, 11:08:05 AM
Certainly is good news Sara.

I am so pleased for both of you and amazed at the way you are both coping and not letting it stop you doing things and going places  :)
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on October 27, 2010, 01:49:20 PM
Thanks for the update, Sara!  I'm glad to hear he's doing well!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 27, 2010, 04:03:55 PM
Yes, glad to hear that things are going well, Sara!

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on October 28, 2010, 05:02:28 AM
Jess, Rose, Chuck, Fritz - thank you for your nice words :).
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on October 28, 2010, 05:16:58 AM
I am very glad to see your good news about Michael.

((((((Sara))))) :-*
Title: Re: Caring for others with chronic illnesses
Post by: brian on October 28, 2010, 08:28:09 AM
Glad to hear such news. And you are going to Australia in February!  Almost wish I could fly over and show you around but guess you will be in good hands. My sister and brother-in-law are coming to visit me in Dunedin in February. I can hardly just swap homes especially as I will be staying with them in Sydney over Christmas and am planning to visit them again at Easter probably on the way to the UK.  At the moment I am in San Francisco and flying home on Friday night. After 3 months away I am counting the hours. I have rambled rather than just discuss your wonderful news, Keep it coming.
Title: Re: Caring for others with chronic illnesses
Post by: roby on October 28, 2010, 02:13:22 PM
(((Sara)))

I'm so glad  to hear the good news  :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on October 28, 2010, 03:33:21 PM
Sara, that is such great news!!

I agree with Jess, Michael is a very inspirational person.
I'm glad he's coping so well, and that the two of you are still able to travel,
even though some additional preparations are needed.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on October 28, 2010, 08:19:55 PM
((((((Sara))))))

This is very good news indeed!  I keep both of you in my thoughts.

hugs for (((((MrM)))))) too.

Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on October 29, 2010, 01:14:25 AM

(((Sara and Mr M)))

Here's to you both, to Australia & your new home!

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on October 29, 2010, 07:59:31 PM
(((((Sara & Mr.M)))))

I am so very glad for the good news about Mr. M.
I know you are both very glad for this, but know that this relieves you.

It is fantastic that this is not slowing either one of you down.

Keeping you both in my thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on October 30, 2010, 09:57:25 AM
Dear Mia, Brian, Roby, Sonja, Sue, Ing and Linda (in chronological order :)), I do hope you don't mind being listed like this - it means so much to me to have your support and thoughts.  Thank you  :-*.

As you may know, Michael is still slightly bemused by the whole Brokeback 'thing' (though he really likes everyone he's met :)), but he is also very touched when I tell him about the posts here.
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on November 20, 2010, 09:43:44 AM
My partner’s mother was admitted to hospital yesterday for the third time in the last couple of months with breathing difficulties. She’s apparently able to breathe with the oxygen tube there. Mama is 83 years old and lives in a village some 250km from Bangkok. The problem is her heart. I’m not sure exactly what because I only get Thaiglish translations of a few short statements reported from what Phong’s sisters tell him on the phone – there has been mention of clot/s and of half her heart not working. She doesn’t seem to have had a heart attack, as there has been no mention of pain, only breathing difficulties, fatigue and weakness and inability to eat or keep anything down.

The first time she was in hospital it was at the State hospital in the nearby district town. The doctor there apparently didn’t explain anything to Mama and refused to speak to her adult daughters. I wonder if he was so rushed for time with too heavy a workload or whether it had to do with his attitude.

Thai citizens are now entitled to free medical/hospital care in State hospitals, though the latter are seriously underfunded and understaffed especially upcountry. Not enough doctors or specialists are prepared to work in provincial and rural State hospitals. Many leave, preferring private hospital jobs in Bangkok with better salaries, lighter workloads and more and better equipment.

When Phong told me Mama couldn’t eat, we took her some Ensure which she liked and took regularly and it seemed to help restore her strength and in time her ability to eat normal food too.

It is difficult to do much at a distance. We go upcountry when Phong doesn’t have work. He is not often free on weekends. He apparently encouraged his sisters to be a bit more assertive, so the last time, they drove her to the big State hospital in the provincial capital where she was in a huge, very cramped ward. She spent 9 or 10 days there with oxygen and intravenous injections of antibiotics (maybe other meds?). Phong’s sisters were able to talk to the doctor there. There doesn’t seem to be any other treatment in consideration because of Mama’s age.

Phong gets frustrated with the family members in the village, because although they visit Mama in hospital every day (and may tire her out in fact), he thinks they don’t do anything practical. Last time, she wasn’t eating the hospital food and it turned out Suri and Noi forgot to take the supply of Ensure to the hospital for her. When we went up two weekends ago and found out what was going on, Phong bought a bag of soft noodles freshly cooked with tofu, vegetables and pork from the food court and fed her. We went out and bought 2 cans of Ensure and some yoghurt and I took extra bananas from our hotel breakfast buffet. Noi fed her one and a little bottle of yoghurt.

She was discharged and the word a few days ago was that she was strong and eating. She was due for an outpatient appointment next Wednesday but she couldn’t breathe yesterday and so Phong’s sisters took her back to the Maharat Hospital where she is apparently breathing okay with oxygen today.

Phong thinks she’ll probably be in and out of hospital.

I’m hoping we can find a weekday when we can go up to Khorat and make an appointment to see the doctor and see if we can understand things better and try to organize Mama’s care better if possible.
Title: Re: Caring for others with chronic illnesses
Post by: brian on November 20, 2010, 11:11:12 AM
My thoughts are with you. Please tell Phong I am thinking of him and his mother.
My mother was on oxygen for the last few years, at first just at night then later continuous. In Australia we could rent a machine for the home and buy cylinders for when we took her out. I guess that is not so easy in Thailand. However her heart was strong until the end, it was her lungs that were the problem. I do hope Phong finds a doctor who is willing to communicate.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on November 20, 2010, 01:20:11 PM
Dear Tony and Phong. Thinking of you, and hoping that Phong's mother feels a little better soon.
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on November 20, 2010, 05:52:43 PM
Thanks Brian and Jess. I did mention to Phong when we were in Khorat a fortnight ago that we should get oxygen for Mama at home and I think his younger brother spoke about it to her and said he would pay half (his wife works in a hospital in BKK), but being back in BKK, we didn't get a chance to organize it by the time she was discharged. I'll have to get Phong to phone Noi about it.
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on November 29, 2010, 07:50:16 PM
Phong's Mama was discharged from the State hospital in the provincial capital last week. His sister rang to ask our opinion on a treatment that Phong translated as an "injection in the leg". I suggested he tell her to make an appointment to see the doctor. Apparently the doctor's decision about the treatment was relayed by a nurse. They did make an appointment at a private evening clinic in the district town and saw the hospital doctor there and he explained the procedure. (He didn't charge a fee.)

Mama is to have a coronary angioplasty tomorrow at the state hospital .

Phong is going to the Red Cross in Bangkok today to make his regular 3-monthly blood donation. He's hoping the merit will flow to Mama and make the angioplasty successful.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on November 29, 2010, 08:07:29 PM
I wish her much luck with her testing, Tony.
Title: Re: Caring for others with chronic illnesses
Post by: brian on November 30, 2010, 10:55:44 AM
Prayers for Mama
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on November 30, 2010, 04:15:46 PM
Tony, please keep us posted on how everything goes!  Much luck to Mama!
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on December 01, 2010, 07:58:06 PM
Linda, Brian, Chuck, thank you.

My head is spinning.

Monday is the king's birthday/Fathers Day in Thailand. Last month, Phong's older sister rang and said she wanted to organize a merit-making ceremony and also organize a performance of traditional Korat singing for Papa. Making merit involves inviting monks (usually 9) to come and chant and feeding them breakfast. She asked us to contribute to the total costs of about 10 000 baht (about $330). She has arranged it all for Saturday. Phong has planned for us to go to the village on Friday and spend the weekend.

Mama was taken to the hospital yesterday where she had blood, urine and stool tests and an ECG. the results of all of which were apparently satisfactory. When she found out that the coronary angioplasty would mean staying in the hospital at least overnight and perhaps for a few days, she decided to postpone it till next week so that she can participate in the merit making and enjoy the music on Saturday.

She's apparently okay and happy this morning, talking with one of Phong's older brothers.

She'll go back to the hospital for the angioplasty on Tuesday.

(Getting an account of the details is quite challenging because Phong uses the universal present tense and other features of Thaiglish which rely heavily on context, forgetting that I know very little of it, not having been part of the Thai conversations.)


Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 01, 2010, 08:02:39 PM
It's good that "mama" is in good spirits.  All the tests point to her health being as sound as possible, so she'll have fun on the weekend, and then go in for her procedure on Tuesday.

Keeping the fingers crossed for her, and her family.
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on December 01, 2010, 08:31:02 PM
It's good that "mama" is in good spirits.  All the tests point to her health being as sound as possible, so she'll have fun on the weekend, and then go in for her procedure on Tuesday.

Keeping the fingers crossed for her, and her family.

Thanks, Chuck. I've been on tenterhooks over the past couple of days. Making merit will give Mama a psychological boost.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 02, 2010, 05:05:34 AM
Mama sounds a good soul, Tony. Anyone who would come out of hospital to listen to some good music is OK with me.

Thinking of you all.
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on December 07, 2010, 01:47:09 AM
We went up to the village on Friday for the merit making and the Khorat Songs on Saturday and Father's Day on Sunday.

Lots of people came to help out and join in the merit-making ceremony where 9 monks and novices chanted and had breakfast and blessed everybody before they departed. After the monks had gone, Phong's eldest brother was helping Papa to move form his platform and go inside the house where the ceremony had taken place (most of the men had stayed out in the yard continuing the drinking), when somebody said it was Mother's Day inside (Mother's Day is actually 12 August and we'd all been there for Mama) and that the Father's Day ritual would be held the next day. I went inside to look and found Mama and two very ancient and decrepit looking old women sitting with their hands cupped over a bowl. People were taking it in turns to sprinkle herb-infused water from the monks' alms bowl over their hands with a bundle of twigs or a sprig of leaves, then giving each woman a 20 or 100 baht note (20 baht is about 65 cents, 100 baht is about $3.)

Meanwhile the singers, two couples, had arrived and been given a meal. A small, high, rough plank stage covered with reed matting had been erected  in the yard with plastic mesh netting canopy held up by bamboo poles. The two couples in costumes took it in turns to perform duets. One would sing into the suspended microphone while the partner danced around her/him. The duets were a kind of a capella recitative in Khorat dialect and had the audience shrieking with laughter. They went on for 3 hours or more. Papa sent notes with requests for two particular pieces, which they performed to his liking. The performance cost 6000 baht. Quite a few people, including Mama, went up to the stage during the performance and tipped each singer 20 baht. The last part of the performance was a series of individual songs accompanied by two people in the audience on bongos and with a few people getting up to dance. Mam and Papa were pleased and Phong's sisters were happy that we'd been able to organize things.

Mama was able to walk around the house and yard and get up and own off the floor unaided. (Like  many Thais, they sit and eat on mat on th floor and sleep on sleeping mats on the floor. Phong's younger brother had brought the tank of oxygen up from Bangkok and set it up in the evening. Mama woke during the night and called for oxygen.

About noon on Sunday, Papa and Mama sat side by side for all the member of the family to bathe their hands with water containing the petals of the marigolds from the Buddha altar of the day before and (the adults) give them gifts of money and make prostrations at their feet. Papa blessed everybody with incantations as we knelt in front of him and he sprinkled us liberally with water from a monk's alms bowl.

We came back to Bangkok later on Sunday as Phong had to get up before dawn to meet customers at the airport on Monday.

Mama is going back into the hospital today and is due to undergo the coronary angioplasty tomorrow.

Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 07, 2010, 04:13:40 AM
Thanks for the update, Tony.

I have to admit, I know basically nothing of the Thai culture, but your post makes the ceremony sound wonderful.  It sounds like it was a large success and enjoyed by everyone.

Thanks for taking the time to post about it, and keeping good thoughts and fingers crossed for Phong's mother.
Title: Re: Caring for others with chronic illnesses
Post by: hampshirerose on December 08, 2010, 12:51:54 PM
Sounds like a time "healing"  :)
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on December 08, 2010, 10:15:51 PM
Phong said his sister told him yesterday the angioplasty revealed "three main lines no good". If I understand correctly, the doctor didn't insert balloons or stents. The hospital was keeping Mama overnight and planning to discharge her today.

Phong's response was to say that he needs to find more medicines for her. I reminded him that she is already on several prescribed medications (I suggested he find out because don't know what they are).

Phong himself had an annual checkup last month - the tests revealed a couple of things in the liver were way too high. The doctor ordered him off the various unprescribed pills he was taking. He had a blood test last week that showed the levels were back to normal. The doctor explained to me that pills made from traditional Thai or Chinese herbs can have bad effects on the liver of some people. Phong admitted I was right to be sceptical of all of them. His friends and contacts are always coming up with some miracle pill or drink that they recommend and some of them in their efforts to make a better living for themselves become sales reps for companies that push various patent medicines and, tellingly, cosmetics. Some of them use emotional blackmail to get people to buy and join the company too. I can legitimately reject all patent medicines on the grounds that they would interact dangerously with the warfarin I have to take daily.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 09, 2010, 05:45:06 AM
Well done, Tony. You can't afford for Phong to get ill too.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 05, 2011, 01:26:27 PM
My mum had a stroke on Monday.

The first three days she was in an ER ward, which was a horrible place.
They didn't know the first thing about how to take care of a stroke patient, and she wasn't taken care of the way she should.
I was with her constantly, all day, to see to her needs.

She was then transfered to rehab, and I saw immediately it's an excellent place.
I'm very very pleased she was moved there, they know exactly how to treat stroke and I know she's in good hands there.
So now I can relax a little, and go back to work. I'll only be able to visit her at weekends, since it's an hour from here.
But the main thing is she gets the best rehab that's available around there.




Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on March 05, 2011, 02:25:18 PM
Praying for your mother, Sonja.

The first time Earl went to the ER (when I was still down in SC on New Year's Day 2009) they misdiagnosed and sent him home. He had to back to the ER three days later on the 4th, and they had better personnel there then, so he was admitted to the hospital right away. Possibly if he had received the proper treatment the first time he would not have lost so much of his vision. But it's impossible to prove such a thing.

Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 05, 2011, 03:14:16 PM
Thank you Fritz.

I'm sorry Earl didn't get the correct treatment right away. Of course he should have had it the first time he went in.

With my mother I didn't feel convinced the diagnosis was correct, as her symptoms are not very typical of stroke.
One would have thought the doctor was able to see that too. But I had to demand for a neurologist to see her, and
the neurologist agreed with me and ordered an MRI. Turned out it really was a stroke, but located in a less common part of the brain.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on March 05, 2011, 04:19:23 PM
Oh Sonja, I am so sorry to hear about your Mum. At least it sounds as if she is in the right place now. Well done you for getting her the right treatment.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 05, 2011, 09:02:42 PM
Sonja, I'm sorry to hear about your mom.  I'll keep her in my thoughts and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on March 05, 2011, 09:37:48 PM
  Sonja, so very sorry.  Am hoping for a complete recovery !
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on March 06, 2011, 10:43:30 AM
Sonja,

All my best wishes for a speedy recovery.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on March 06, 2011, 11:41:14 AM
Oh (((((((( Sonja ))))))) I am so sorry to hear.

How good that she is now in good care and that you could be there. Hope you can find time and energy to take care of yourself too.

Keeping you and your mother in my thoughts and prayers. For a fast recovery.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 06, 2011, 02:34:11 PM
Thank you all for your good wishes, it means a lot.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on March 09, 2011, 01:10:14 AM
Dear Sonja, I'm so hoping your mother is making progress.

Lots of love to you  :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 09, 2011, 02:51:34 PM
Thank you Sara.  :-*

Unfortunately she isn't at the moment.

She's too tired to participate in rehab, and she had another clot this weekend.

They'll adjust her sleep meds, maybe they cause her tiredness.

If only she's a little more alert, I'm sure she'll make progress, since the rehab place she's in, is really excellent.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 09, 2011, 07:21:04 PM
I am so sorry about the lack of progress and the further clot with your Mom, Sonja.
I am thinking of you and your Mom. I hope things improve. :-*
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on March 09, 2011, 07:27:10 PM
Hoping and praying for the best, Sonja.

Title: Re: Caring for others with chronic illnesses
Post by: janjo on March 10, 2011, 04:51:50 AM
It is early days yet, but this must be terrible for you. Thinking of you.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 13, 2011, 04:43:12 PM
Thank you so much dear friends. Your support means a lot.

My mum is less tired now, which means she's able to take part in the rehab a little more. So that's good.

Other than that her condition is more or less the same. She can eat by herself, but other than that she's totally dependent on others for everything she needs.

I'm so glad she's in such a good place, she gets the best treatment available there.
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on March 13, 2011, 05:04:02 PM
  It's great to hear at least a little good news on your mother, Sonja !  Can only hope she continues to do better, at whatever pace is necessary.
Title: Re: Caring for others with chronic illnesses
Post by: roby on March 14, 2011, 04:52:16 AM
(((Sonja)))

hope your mother will do better and better. I'm glad she is in a good place where they take good care of her.

All my prayers to her and you  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on March 14, 2011, 05:17:11 AM
More love to you ((((Sonja)))) :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 16, 2011, 02:59:26 PM
Thank you so much dear (((( friends ))))

I so appreciate your greetings and good wishes!!

No real news about my mother. She's more awake, and can take part in rehab a little bit.

But other than that there's no real progress.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 20, 2011, 03:29:38 PM
My life is a surreal nightmare at the moment.

Both my parents are now in hospital, in different towns.
I've spent a weekend from hell going back and forth between them, making sure they get what they need, bringing them things from home, comforting them, talking to doctors and nurses, and making sure their house is in order while nobody is there.

I don't know when any of them will be released and going home, so this nightmare will continue for an indefinite time.

My son is a wonderful support.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 20, 2011, 03:32:49 PM
((((Sonja))))
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on March 20, 2011, 03:37:06 PM
((((Sonja))))

That's terrible - I'm so sorry.

Sending you all so much love and support.

 :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 20, 2011, 03:39:20 PM
I am so very very sorry, ((((((Sonja))))))!!
Sending love and prayers and support.
Title: Re: Caring for others with chronic illnesses
Post by: Marz on March 20, 2011, 03:45:05 PM


((((Sonja)))) sending my love and prayers and thinking of you at this difficult time
its great you have your son for support :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: janjo on March 20, 2011, 04:46:31 PM
That's terrible Sonja. Thinking of you.
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on March 20, 2011, 04:56:19 PM
....My son is a wonderful support.
  Thank God for that!  Sonja......am sure it really is a nightmare.  But keep your strength up.  We all are wishing you well.....and hoping for better to show up.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on March 20, 2011, 06:53:36 PM
((((((((((Sonja)))))))))))))

Hope they both pull through.

Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on March 20, 2011, 10:43:40 PM
((((((((((((((((Sonja))))))))))))) sending more love and energy for both of them and my prayers that they may both pull through this crisis. You're coping courageously and calmly, power to you!
Much love  :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: roby on March 21, 2011, 05:04:39 AM
((((Sonja))))

I checked the thread to find good news and didn't expect the last events.
I'm so sorry.
Keeping you in my prayers.

Title: Re: Caring for others with chronic illnesses
Post by: dejavu on March 21, 2011, 08:34:11 AM
(((Sonja)))

I knew about your mother, but not about your father.  This must be a terrible time for your.
Sending you all the strength and good luck that I can, and best wishes for both of your parents.
Title: Re: Caring for others with chronic illnesses
Post by: atruant on March 21, 2011, 04:12:03 PM
(((Sonja)))

Be strong and have faith.
Title: Re: Caring for others with chronic illnesses
Post by: jack on March 24, 2011, 09:15:15 AM
sonja, very different circumstances, but my gut wrenched in sympathy reading my life is a nightmare.  i completely identify.  i was there in that place, and it went on for so long i am still in physical and emotional deficit.  although i wasn't dealing with two parents i had to deal completely alone, with very limited financial resources.  i had to come to the forum for anything like emotional support.  it is amazing how people have no idea of how depleting the circumstances and are too busy to help, have opinions on how you are doing and suggestions on how to do it better.

while you may be dancing as fast as you can, be assured that at any time if you COULD do more, you would and don't judge yourself when you have to stop and rest.  i am quite sure that living through my version of ordeal cut years off my life, and diminished the quality of my current life.  i do know i made up for the many years i wasn't there or willing.  i think the comfort i got from the forum kept me semi sane.  wishing you the best.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on March 24, 2011, 11:20:11 AM
(((Sonja))) Thinking of you, my prayers go out to you and your parents :-*
Title: Re: Caring for others with chronic illnesses
Post by: bentgyro on March 24, 2011, 01:35:21 PM
((Sonya))
One can only do what one can do and you are.
How nice that you have the support of your son.
Good thoughts to you.
HT
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 26, 2011, 02:42:06 AM
Thank you so much for all the encouragement and support, dear (((( friends ))))

It means more than you know.

And Jack, ' while you may be dancing as fast as you can, be assured that at any time if you COULD do more, you would and don't judge yourself when you have to stop and rest. ', these words gave me instant relief from guilt that I'm not visiting them today although I technically could, but I'm just too tired. Thank you.

The latest news is that my mother will be released from the rehab place this week, very much to my regret because it's an excellent place. She will be transferred to a different 'short term care' facility, with only a minimum of rehab. I fear she won't get enough time from the rehab staff to actually make any progress.

My father will probably also get released this week, and I've succeeded in convincing him that he can't go home and be on his own, so hopefully, with a bit of luck, he may go to the same place as my mother. At least for a short while.

On wednesday, I have to go with him to the eye doctor, cause he won't be able to remember what the doctor told him without my help, and then go to my mom and pack her things together and follow the semi-ambulance in my (hers) car to the new place. I'm trying to arrange for someone to go with her, I don't like that she'll be lying down all alone in the car except the driver and he won't be able to hear her. Then unpack her things and install her, make sure the staff get all the info and such. And find out what the rehab resources really are at the new place, because I fear the worst. Before that I have to get her own clothes, buy new ones that are easy to put on for her helpers, make sure to bring all her meds and go to the pharmacy for new ones, and a few more things.

These last few days I've made sure their bills got paid, which was a hassle because they pay each their bills and have each their bank. I think I got it all sorted in time before the end of the month.

My dad is now allowed leave of absence from the hospital when I'm with him, and he asked that we go to visit my mum, but I'm simply to exhausted to do it today. I'll do it tomorrow. My dad's hospital is on the way to my mum, the round trip to them both is 180 km.

I simply can't visit them every day like I did in the beginning and over last weekend, this week I was there monday, wednesday and friday. And going tomorrow again. Everyone tells me I need to take care of myself too, so I try by staying home today and try and get some sleep. Although I woke up way too early this morning, but at least I may be able to take a nap.

I'm deeply worried my mum won't get enough qualified rehab in the new place, and how my dad will cope when he does get home.

Meanwhile I'm on the phone several times a day with my brother who lives abroad, and we juggle different ideas. He will come in a week, and start looking at options for moving them from their house to a flat, which is a very big project. Then we need to empty the house and sell it, which probably is an even bigger project. We will also look into ways of enhancing my mother's rehab, if what she gets isn't good enough.

I have a list of a million things I need to do, and people to call, to deal with it all.

Within two weeks, my life suddenly turned into a surreal chaos.
Title: Re: Caring for others with chronic illnesses
Post by: bentgyro on March 26, 2011, 02:35:01 PM
Things will hopefully be a little easier when you can share things with your brother.
(((hugs)))   HT
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 26, 2011, 03:35:22 PM
Yes, thanks, I think they will. He'll only be here for a week this time, but at least that'll be good. And he'll come back.
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on March 26, 2011, 07:21:13 PM
....Within two weeks, my life suddenly turned into a surreal chaos.
   Sonja, it may be that it will get out of the surreal and more to normal, but a new normal.  And it will, then, be so very important that you find rest where you can, and go at your own pace.
   I don't know if you cook, but rehab and partial care homes often have drab food.  It can mean a great deal to someone if, every so often, they get a plate of something they would have had at home.  Even if it is just heathy snacks.  Grapes, cookies, etc.
  Please know, above all, you have our support here.  And anything you share with us is appreciated !
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on March 26, 2011, 07:28:07 PM
That's a very good idea, Tony, about the food.  When my mother was in a rehab center in 2008, she found much of the food, and the general menu, unpleasant.  I didn't cook, but I brought her food from outside the facility (even a McDonald's hamburger or an Arby's roast beef, or a a turkey sandwich from a deli cheered her up).
 
Sonja, I think you'd rather cook something yourself, from what I know of you, but it's something to keep in mind, as long as it's not putting another burden on yourself.  Maybe every now and then, on a weekend, as a treat. 
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on March 26, 2011, 09:38:46 PM
That's a very good idea, Tony, about the food.  When my mother was in a rehab center in 2008, she found much of the food, and the general menu, unpleasant.  I didn't cook, but I brought her food from outside the facility (even a McDonald's hamburger or an Arby's roast beef, or a a turkey sandwich from a deli cheered her up).
 
Sonja, I think you'd rather cook something yourself, from what I know of you, but it's something to keep in mind, as long as it's not putting another burden on yourself.  Maybe every now and then, on a weekend, as a treat. 
   Very true, Debbie: they don't always have good food.  And you HAD to mention Arby's didn't you?  Now am craving one of their Reuben sandwiches, this late at night  :D.  Also, very true Sonja should not take on more than she already has on her.  A friend of mine has been bringing food to her Mom, in a rehab place, and it has run her ragged, as it's a long drive, and her Mom has grown to expect the lasagna, spaghetti, chili, etc., every other day. 
 That Sonja has two parents that are ill, makes the matter all the more difficult.  I can't imagine what she must be going through, and can only hope things settle down, after the initial shocks. 
 
 Sonja, you certainly have my admiration, good will, and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: lovelyamazing on March 27, 2011, 02:21:01 AM
Yes, thanks, I think they will. He'll only be here for a week this time, but at least that'll be good. And he'll come back.

Sonja you have been incredibly brave and are an inspiration to others who may be going through something similar. I've been there but not with both parents together and I think you're being remarkably calm and balanced through this. Thank you for sharing the details with us and for expressing your anxieties. I agree with all our friends here that you need to rest yourself. Treat your own rest as part of your contribution to your parents' recovery. This has been a challenging time for your whole family and you have risen to meet it beautifully. You are going to come out of the stormy seas and find yourself in calm waters. Take one step at a time, know that we're all with you, and before you realize it, all these mountains will be climbed.
Loads of luck, love and prayers.
 :-* :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on March 27, 2011, 04:50:05 AM
I was going to post an update on my husband's myeloma and kidney failure, but the news is all so positive I'll put more in Sharing Joy :).  In short, his 'partial remission' continues, and the cancer levels are even slightly lower, and his dialysis has become a problem-free routine.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on March 27, 2011, 01:02:33 PM
Fantastic news, Sara!  ;D
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 27, 2011, 02:39:09 PM
Dear Tony, Debbie and Maya, your words are such a comfort and support to me tonight!  :-* :-* :-*

Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 27, 2011, 02:43:35 PM
Hi Sonja. I hope your day was not too taxing and you can get some sleep tonight!!
((((((((((((((Sonja)))))))))))))))) :-*  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 27, 2011, 02:57:10 PM
Thanks Linda!!   :-* :-* :-*

Let's just say my day was not easy. And I don't expect this coming week to be either.

Am very tired, so I also hope to get some sleep.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on March 27, 2011, 04:41:59 PM
I hope you do too, Sonja. I know how hard it is to turn your mind off at the end of the day.
Please do take care of yourself as I worry about you>
Much love and hugs. :-*
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on March 28, 2011, 03:00:50 PM
((((((((((hugs))))))))))) to all of you who are going thru such a difficult time!!  I'm praying for you
Title: Re: Caring for others with chronic illnesses
Post by: Sason on March 28, 2011, 03:52:59 PM
Thanks Nellie.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 02, 2011, 07:05:45 PM

Meanwhile I'm on the phone several times a day with my brother who lives abroad, and we juggle different ideas. He will come in a week, and start looking at options for moving them from their house to a flat, which is a very big project. Then we need to empty the house and sell it, which probably is an even bigger project. We will also look into ways of enhancing my mother's rehab, if what she gets isn't good enough.

i don't know what your parents finances are or what facilities are available in your area, BUT, if you are getting your parents moved from their house, instead of getting a flat, i can recommend strongly enough getting them into an assisted living facility, where they can maintain as much independence as they are physically and mentally capable of, and at the same time any rehabbing they need, or nursing care is available right on site.  many such places have in place levels of care which are flexible over time and conditions.  folks can come in as independent living, availing themselves of arranged travel and social activities as well as restaurant style dining.  usually such places have security round the clock and staff that is trained to assist folks to their apartments should they forget the number or lose the keys.

they are also set up to accommodate handicaps and enhance safety for older residents.  they sound expensive at first glance, but considering all the services provided they can be a bargain, and certainly they enhance the quality of life or older or disabled residents.  so much better than a small bedroom and being underfoot in an offspring's house.

the apartment i got my mother was so nice i would gladly have lived in it.  would that she was there now.  medicaid & pension snafus cost her that place, and now she is in a full care nursing home, with little left of her personality but the contrarian  nature that the disease exacerbated.

if you can find the right spot for the right money, your parents need never move, even as their levels of care change.  i hope you will check it out.  you will have already succeeded in the hardest part, getting them out of the old homestead, as many here will attest.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 03, 2011, 02:38:37 AM
Thanks for the advice, Jack.

What you describe sounds perfect, but I don't think we have places like that in Sweden.

However, there are other possibilities, and now my brother is here he will look into different options.

My parents have agreed to move from the house, but we haven't gotten further than that yet.
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on April 04, 2011, 09:09:37 AM
Hi,

I did a quick internet search and came up with the following list.

http://www.retirementhomes.com/country/Sweden_C20.html (http://www.retirementhomes.com/country/Sweden_C20.html)

It suggests that there are facilities in Sweden that are comparable to assisted living communities in the United States. The difference between assisted living and skilled nursing care depends on the acuteness or severity of the resident's medical conditions. Skilled nursing facilities here typically take care of the more serious cases.

Hope this helps.

Sandy
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 04, 2011, 01:03:38 PM
^^^^^^^^^^^^^

Oh wow, thank you so much, Sandy!!!

I had no idea you could search them like that.


Unfortunately there are only a few of them in all Sweden, and none of those in this part of the country.

At the moment we're looking into an adapted apartment, with the kind of public home service that is available everywhere here.
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on April 04, 2011, 02:18:26 PM
That sounds like a good choice. Most care providers think it's better to provide home health care to residents in a home-like setting rather than send them off to institutitons.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 06, 2011, 02:02:45 PM

Unfortunately there are only a few of them in all Sweden, and none of those in this part of the country.

At the moment we're looking into an adapted apartment, with the kind of public home service that is available everywhere here.
the advantage of some, if not all, of the type of place i described is that they are constructed to allow different levels of care as aging and disease progress.  this is especially important in cases where dementia is present or expected.  public home service can only address patient needs up to a point, unless highly trained live-in caregivers are available.  to put your parents in a living situation only to have them have to move yet again in a matter of months or a year is very difficult on them, whereas in a tiered community, the relocation is minimal for additional services or medical supervision.

just a suggestion, but i strongly recommend a field trip to one or more of the full service facilities before you make a decision, even if it takes your parents further away than you might choose.  in a good situation much of the care and concern can be taken off your shoulders and leave you free to just be their loved ones, providing comfort, memories, and special treats.

because of the financial complications, and my own near indigent state, AND my mother's extreme needs, i could no longer juggle all the responsibilities and it became dangerous for both of us, and physically and emotionally exhausting.  i was lucky enough that there was an opening with a public guardian who took over responsibility for dealing with legal aspects of her care, and becoming her de facto guardian.

i was set free to become her loving son (or a close facsimile.)  this worked out well until my health and financial issues wrought havoc on my life, eliminating my transportation and putting me in the hospital 4 times in the past year.  although my mother has been "on her own" for many months as i rehabilitate from the last crises, surgery rehab, new heath issues that put me on a walker, at least i knew my mother was getting trained care, even though she is often combative.  i can concentrate on getting better until i can begin visiting again.

that's my experience, hence the suggestion.  good wishes your way from one who "gets it". 
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 06, 2011, 02:07:38 PM
That sounds like a good choice. Most care providers think it's better to provide home health care to residents in a home-like setting rather than send them off to institutions.
sandy, that is only true when the patient is manageable by caregivers in a home setting.  dementia and serious physical disability mitigates that.  it is especially difficult for couples when both are infirm, but one requires a great deal of care,  inevitably, the sturdier spouse tries to do more that s/he is capable of and improper care is the result, even with visiting caregivers.  the trick for at home is knowing when assisted living is no longer the best choice.

ETA most facilities would bristle at being termed institutions.  that is a concept from another era, although a few may still exist.  nursing homes or assisted living apartments is a much better description.
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on April 06, 2011, 03:03:43 PM
Hi jack,

I am aware of the limitations of home health care, but, all things being equal and where it is feasible, care givers think it better to provide care in home surroundings rather than insitutitional settings.

The kind of facility you noted above, with differing levels of care, is known as a CCRC, or continuing care retirement community. It generally includes indepedent living, assisted living and skilled nursing. It may or may not include dementia care. These facilities are far fewer in number than stand-alone ALFs, ILFs or SNFs, and they are generally very costly, at least here in the U.S. For folks who require higher acuity of care, such as skilled nursing, CCRCs may not be the right answer.

In any event, the Swedish system (it actually has a system, whereas we have a crazy quilt of care) will be different.
Title: Re: Caring for others with chronic illnesses
Post by: jack on April 07, 2011, 12:27:42 AM
you, of course, know whereof you speak.  i have a slightly skewed point of view, since i live in south florida.  the only shortage of ccrc's here is those that can offer care to dementia patients.  some are fully geared, fewer had a limited number of slots for dementia patients, and some have arrangements with other outlets that handle mostly severely handicapped or dementia patients.  i visited no fewer than 6 facilities researching for my mother's needs.  i went with the one that had an advanced alzheimers wing on site.  i posted pictures of it at the time.  it was ridiculously nice, and the independent living units fell nicely within my mother's pension income, and actually provided far more assistance and eyes than most of its kind.

given that sweden has far better health care provisions, i wonder if such units are available as needed, along with better trained home health aides.  i did HHA work when i lived in hawaii although i was unlicensed, but here in florida the need is so great that it is rare to find any caregivers fully bonded, even if they are certified, and very few speak english as a first language, many barely at all. my ex-wife now has her mother, blind and bedridden, in her home, and says she feels like she and her current husband are living under a black cloud of gloom.  apparently we still have things in common after all these years.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 10, 2011, 02:28:12 PM
Thank you, Jack and Sandy, for your input and your concern.

The Swedish system is very different from the American one. We (my brother and I) try to navigate it
as best we can, but so far we haven't found the right place for my parents. We're looking into options both
in their town, and in mine. My brother lives abroad, so he can only be here for a limited amount of time, each time he comes.

The good thing is that we are in no particular hurry, my dad is doing fairly ok on his own in the house, and my mum is being taken
care of not bad at all in the short term facility. My guess is she'll be staying there for a while still, so we can use that time for the search.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on April 10, 2011, 02:30:43 PM
All the best, Sonja. And be thankful that you don't have to navigate your way through long-term health care in this country.

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on April 10, 2011, 02:34:05 PM
Thank you, Jack and Sandy, for your input and your concern.

The Swedish system is very different from the American one. We (my brother and I) try to navigate it
as best we can, but so far we haven't found the right place for my parents. We're looking into options both
in their town, and in mine. My brother lives abroad, so he can only be here for a limited amount of time, each time he comes.

The good thing is that we are in no particular hurry, my dad is doing fairly ok on his own in the house, and my mum is being taken
care of not bad at all in the short term facility. My guess is she'll be staying there for a while still, so we can use that time for the search.

Glad you don't have to do anything in too much of a hurry, Sonja.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 10, 2011, 02:38:00 PM
Thank you, Fritz and Sara.

I have phonecalls to make tomorrow, to find out what is available here in my town.
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on April 13, 2011, 03:30:20 AM
My life is a surreal nightmare at the moment.




((((((((((((((((((((((((Sonja))))))))))))))))))))))))))))))))))))))

I can really understand you. And am with you in spirit. It is hard. So hard.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 14, 2011, 02:55:32 PM
Thanks Daniela.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: janjo on April 14, 2011, 04:51:50 PM
We are still thinking of you too, Sonja.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 15, 2011, 10:18:15 AM
Thank you Jess, it means more than you know.

The latest news are that my brother and I are frantically searching for somewhere my parents can live.

There are many problems, one is that their needs are different, another that there are extremely few places that we find suitable, and most of those have long (2-4 years) queues. A third problem is that my parents don't have real insight in what they actually need, and it's very hard to talk some sense into esp my dad.

So it's not looking very bright at the moment.
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on April 18, 2011, 11:05:24 AM
(((Sonja)))

Wishing you all the best with this very difficult situation.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on April 20, 2011, 02:16:28 PM
Thanks Debbie!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 22, 2011, 12:34:32 PM
For family and friends, nothing new with Mother. (While I was down there earlier this month she was hospitalized for 5 days with pneumonia, and is growing progressively weaker) She's under care of the home hospice group (Hospice of the Upstate), and has some good days and some bad days. So nothing major to report, I just talked with my sister down there this morning.

This is an amazingly good organization. I just hope that something similar is around when my time comes.

http://hospicehouse.net/

Title: Re: Caring for others with chronic illnesses
Post by: killersmom on October 22, 2011, 07:58:23 PM
Thanks for the update, Fritz!
My prayers are with your Mom and you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 22, 2011, 08:11:14 PM
Thank you, Linda.

Title: Re: Caring for others with chronic illnesses
Post by: kathy on October 23, 2011, 07:27:38 PM
For family and friends, nothing new with Mother. (While I was down there earlier this month she was hospitalized for 5 days with pneumonia, and is growing progressively weaker) She's under care of the home hospice group (Hospice of the Upstate), and has some good days and some bad days. So nothing major to report, I just talked with my sister down there this morning.

This is an amazingly good organization. I just hope that something similar is around when my time comes.

http://hospicehouse.net/

**Fritz:  I'm glad it seems to be an extremely good operation.  It's so sad she grows weaker.

I'm coping with mom's health problems too.  Isn't easy, is it?

kathy   
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 23, 2011, 07:35:48 PM
**Fritz:  I'm glad it seems to be an extremely good operation.  It's so sad she grows weaker.

I'm coping with mom's health problems too.  Isn't easy, is it?

kathy   

No it's not, Kathy, and most of the burden falls on my sister who lives down there.

Thinking about and praying for all our mothers.

Title: Re: Caring for others with chronic illnesses
Post by: kathy on October 23, 2011, 07:47:42 PM
**I have 3 older brothers; only one helps us in different ways.  He does try, but he has his own health issues (in remission from cancer), and is married.  
It seems to me, fritz, that the "girl" has so much on her head...  The fact that you realize this says so much for you.      

I'll be thinking & praying for all our moms too.**  

kathy  
p.s.  I know it's hard, very hard.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 24, 2011, 03:07:41 PM
Well it seems like all this is dragging ....I wish we can just get to the bottom of everything and get it over with..

Wednesday I go with my dad to get his cat scans done...they took more blood...doing an EKG Thursday and we wait some more.

My dad says he will allow an operation but if it's spread to his liver and other organs, he wants NO CHEMO....we have to respect his wishes...I just don't want him to suffer  :'(
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 24, 2011, 03:32:59 PM
Thinking and praying for your father too, Nellie.

Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on October 25, 2011, 05:55:15 PM
Fritz...Nell....Kathy ..... thinking of you and your moms and dads are in my prayers.
Title: Re: Caring for others with chronic illnesses
Post by: kathy on October 25, 2011, 05:56:37 PM
**Thanks so much, suely.**

kathy    :-*
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 25, 2011, 06:39:04 PM
Thank you, Suely.

Talked with my sister tonight, Mother's so afraid of falling that she doesn't want to get up out of bed at all, which makes things very difficult for my sister.

Title: Re: Caring for others with chronic illnesses
Post by: janjo on October 26, 2011, 03:12:08 AM
Thinking of you, and your sister and your Mum, Fritz.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on October 26, 2011, 03:23:49 AM
You are all in my thoughts too, my thoughts and prayers

(((((((((Fritz))))))))
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 26, 2011, 03:46:09 PM
Thank you, Jess and Mia.

Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on October 26, 2011, 06:28:03 PM
(((((((((((((((((((((((((((((( FRITZIE )))))))))))))))))))))))))))))))))))
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 26, 2011, 06:30:08 PM
((((((((((Nellie))))))))))))))))))))

Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on October 28, 2011, 03:23:05 PM
(((((((((((((((((Fritz)))))))))))))))

Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 28, 2011, 03:25:11 PM
((((((((((((Sue)))))))))))))

Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on October 29, 2011, 07:49:58 PM
                         
Still thinking about you both.


                         (((((((((((((((((((Fritz and Nellie)))))))))))))))))))))))

                            " Hugs are the greatest thing....one size fits all. "                 
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 29, 2011, 08:01:05 PM
Thank you, Suely, no news, probably won't be any change for a while yet.

Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on October 29, 2011, 08:19:21 PM
OK. Fritz ...will just keep checking this thread.  Goodnight.
Title: Re: Caring for others with chronic illnesses
Post by: Flyboy on October 29, 2011, 10:33:25 PM
Thinking of Nellie and Fritz today!  :)

I know it's not much, but it does help to know others have you in their thoughts and prayers!

Keep us posted if you can..........take care now..........Jonn
Title: Re: Caring for others with chronic illnesses
Post by: jack on October 30, 2011, 03:16:33 AM
Talked with my sister tonight, Mother's so afraid of falling that she doesn't want to get up out of bed at all, which makes things very difficult for my sister.
fritz, now that i read my way through that hug fest and back...

there are many different hospice organizations around the country, some better than others, but by and large they all do a wonderful job, both monitoring care and advocating for the patient.

i mention this in particular because your sister's situation with your mother ought to be brought to their attention ASAP.  there are a variety of ways they can help with this, from a hoyer lift to a "kneelng" bed.  by all means, urge her to call, and should she demur, call for her.  neither should have to struggle with this insecurity.

while you all are praying for mothers, think of my mother as well.  she is in that least desirable of situations, not in her right mind and being warehoused in a less than stellar facility, the very thing she most feared.  i am powerless to affect the situation, legally and physically.  t wll be a relef when she passes... assuming i don't predecease her. 
Title: Re: Caring for others with chronic illnesses
Post by: morrobay on October 30, 2011, 09:43:45 AM
Fritz & Nellie & Jack,
I'm also praying for you and your Moms and families. No matter what, we have to just know that we all do the best we can.

You're all in my thoughts....
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on October 30, 2011, 12:06:51 PM
Jack......I didn't know that you and Fritz are almost in "the same boat".  My thoughts are with youand your mom too.

Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 30, 2011, 12:07:40 PM
Thanks, Nancy.

Jack, you and your mother are always on my prayer list.

Title: Re: Caring for others with chronic illnesses
Post by: tonydude on October 30, 2011, 01:04:24 PM
 I haven't been posting here, but I have tryed to keep up, and I wish everybody going through these troubles all the encouragement in the world.  My own agoraphobia dates back to the illness and death of both parents, some 25 years ago, so I do very strongly react and empathize to caring for those that are ill, and also grieving.  It's just that sometimes I don't know what to say.
 I do remember, though, from helping with hospice care, some small but important helps for the loved one:

* Sometimes they need color in their room.  Not flowers, but color in the form of art prints, plants, or even photos of dogs and nature, etc., taken from magazines, and taped to the wall.

* towards the end, most hospices suggest music therapy with the person's favored music by headphones. But it should be what they want to hear.  If they are too depressed to choose, their loved ones should try to remember what they liked.  Often the family must do this, themselves.

* it's extremely important to include the ill person into choices and decisions, over food, clothing, and day-to-day matters.  Too often, they can have further sadness from feeling powerless, and no further ability to be a part of life, if every choice is made for them.  Just the smallest matters, referred to them, can make them feel still functioning and able to relate to the world.

Again, I wish everyone going through the troubles, strength, courage, and love.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on October 30, 2011, 01:31:36 PM
Oh, that's for sure. When I'm there I frequently have the TV on to TCM, and when they play movies from way back when, especially musicals, she reacts very favorably, moving and dancing in her chair. Of course, that was before her most recent hospitalization.

Title: Re: Caring for others with chronic illnesses
Post by: tonydude on October 30, 2011, 09:13:54 PM
 Am glad there are some good days for your Mom, Fritz.  And have hopes for all the others in these times, which we will all face, sooner or later.  Am hoping for the best for everyone that has posted here !
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 01, 2011, 09:21:23 AM
Never a dull moment...never


I have to add this note to this thread...

Even though my dad is battling colon cancer....we still are waiting for results of his cat scan from last Wednesday..btw..

last Thursday night at 9 pm ,my dad was watching TV...he hears a noise at the front door...he peeks out the window and see's a guy who looks like my 24 yr old nephew...gets up opens the door,turns on the porch light....it wasn't my nephew...it was a punk with his 2 buddies trying to break in...he manages to open the storm door but my dad tried holding it shut...couldn't...so instead he grabs the guy by the wrist with his other hand grabs him by the neck and throws him down the cement stairs...the other 2 guys run...my dad loses balance and falls down the stairs with this punk,lands on top of him...before the guy was able to get up my dad throws him a good punch to the face!!!

you believe this shit!!??

THANK the good Lord in heaven ,these punks didn't gang up on him,didn't stab or shoot him,didn't get in the house!!  my mom was running out,didn't see all the commotion... was screaming because she saw blood everywhere...my dad scrapped his leg badly on the steps...she didn't know if he was stabbed or what...neighbor is a retired cop...calls the cops...a big mess...

One of the cops that was there taking the report was shocked at how strong and brave my dad was...found out he was a Marine...the cop was a Marine and together they say "Once a Marine ,always a Marine!! "

I love it

but still....it's just crazy...my dad needs to think before he plays Superman...God bless him though....I hope he fights this cancer like he fought these thugs!!
Title: Re: Caring for others with chronic illnesses
Post by: morrobay on November 01, 2011, 10:45:47 AM
Wow, sounds like a tv show!

Thank God he's ok...and that same strength and courage will no doubt help him in his fight against that damn cancer.

Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on November 01, 2011, 06:19:43 PM
                                                                       ^^^^

This is the thing isn't it....no matter how old or frail you may be....it's human nature to fight back. He may have fallen down Nell...but at that moment I bet he felt 20 again !! Enough is enough now.Tell him to take it easy and to put all that energy into fighting this illness that has cast such a shadow over him and over all of you.Thinking of you . :-*
Title: Re: Caring for others with chronic illnesses
Post by: kathy on November 01, 2011, 08:17:32 PM
**Ditto.**

kathy    :-*
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on November 03, 2011, 04:19:46 AM

while you all are praying for mothers, think of my mother as well. 

((((Jack))))
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on November 03, 2011, 04:21:27 AM

* it's extremely important to include the ill person into choices and decisions, over food, clothing, and day-to-day matters.  Too often, they can have further sadness from feeling powerless, and no further ability to be a part of life, if every choice is made for them.  Just the smallest matters, referred to them, can make them feel still functioning and able to relate to the world.


Yes, this sounds very sensible and important.
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on November 21, 2011, 05:25:29 PM
I know we don't know him ...but lets all pray for Robin Gibb. That family has had so much unhappiness.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on November 28, 2011, 08:28:38 AM
My dad goes for his surgery this Thursday...please keep him in your prayers
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on November 28, 2011, 09:15:37 AM
My dad goes for his surgery this Thursday...please keep him in your prayers

Thoughts and prayers for your dad and all your family, Nellie. :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on November 28, 2011, 10:18:39 AM
Sending up prayers for him, darlin'!  Please keep us posted!
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on November 28, 2011, 03:51:38 PM
My dad goes for his surgery this Thursday...please keep him in your prayers

Oh, Nellie, will do that for sure.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on November 28, 2011, 04:47:17 PM
Definitely, Nellie.

Title: Re: Caring for others with chronic illnesses
Post by: dejavu on November 30, 2011, 03:59:17 PM
That's tomorrow.  Thinking of you and your dad, (((Nellie)))
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on November 30, 2011, 04:01:04 PM
Same here, Nellie.

Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on November 30, 2011, 04:15:04 PM
Have faith Nellie....we're all offering up a prayer. :-*
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 01, 2011, 06:08:02 PM
After what seemed like a long surgery 4-1/2 hours, my dad's surgery went well. They removed a part of his colon that had a tumor the size of a baseball. My God...they are checking the lymph nodes and checking for more cancer....he had a cyst on his liver and kidney and they said it didn't look cancerous but are testing....

Than you all so very much for thinking of my dad and for the prayers...please continue to keep him in your thoughts..he looked good....

Love you guys

Nellie...xo
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on December 01, 2011, 06:53:32 PM
((Nellie))

Thank you for keeping us updated with that report.  4-1/2 hours, that is a long surgery.  But I'm happy to hear that they got the tumor out.  Keeping my fingers crossed that nothing else turns up cancerous.

If he looked good, that's to be thankful for, for right now.  We will certainly continue thinking about him and keeping him in our prayers.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 01, 2011, 07:21:02 PM
Glad to hear it, Nellie. Our whole choir said a prayer for him.

Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 01, 2011, 08:29:23 PM
keeping your dad in my thoughts and prayers!
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on December 02, 2011, 08:19:22 AM
Wishing your dad a speedy recovery and disease-free prognosis.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 04, 2011, 06:14:05 AM
Well, they took out the tube from his nose to his stomach...making him walk around now. He's eating jello and drinking water and tea and light things like that...so far so good.Only thing now is that his sugar and blood pressure are a little high

He has 2 cute nurses taking care of him   ;D ;D ;D ;D so he's happy

Nurses said if he keeps this up he may be able to go home by Monday...now let's see what the doctors think

Thanks again for your thoughts and prayers,I truly believe that helps in the healing process;you guys are awesome!!

 :-* :-* :-* :-* :-*

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: Flyboy on December 04, 2011, 07:25:28 AM
Thanks for the update, Nellie! ;D

Sending healing thoughts and prayers for your Dad.  ;)
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on December 04, 2011, 10:17:46 AM
Good news, Nellie!
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 04, 2011, 01:57:19 PM
My prayers and thoughts of healing for your father ((((((((((((((Nellie)))))))))))))) !!

 :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 04, 2011, 02:08:12 PM
My mother was sent to the hospital in an ambulance this afternoon. She has been really bad and getting worse the last couple of days, with a very high fever today. A year and a half ago she finally went tosee a doctor and was then diagnosed with a severe COPD, she almost died that night. And a year ago, in January she got a complication, Pulmonary embolism. Since then there hasn't been any comlications. Of course she is living a very limited life because of her condition but no complications until now.

They are keeping her at the hospital of course, took lots of tests and she got help with the breathing and something that took the fever down.

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 04, 2011, 02:53:33 PM
Oh (((((Mia))))), I'm so sorry. I do hope she will make good progress.  Thinking very much of you and your family.  Much love  :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 04, 2011, 03:04:25 PM
Good thoughts and hoping for the best possible outcome for your father, Nellie, and your mother, Mia!!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 04, 2011, 03:14:49 PM
Thoughts and prayers for your mother, ((((Mia))))).

Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 04, 2011, 04:39:51 PM
Oh (((((Mia))))), I'm so sorry. I do hope she will make good progress.  Thinking very much of you and your family.  Much love  :-* :-* :-* :-* :-*

Thank you ((((((((((Sara))))))))) !!

 :-* :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 04, 2011, 04:40:14 PM
Thoughts and prayers for your mother, ((((Mia))))).



Thank you so much (((((((Fritz)))))))
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 04, 2011, 04:40:36 PM
Good thoughts and hoping for the best possible outcome for your father, Nellie, and your mother, Mia!!

Thank you, Sonja.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 04, 2011, 06:05:30 PM
Mia, keeping your mom in my thoughts and prayers.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 04, 2011, 06:15:04 PM
Nelli, I am so very glad and happy your dad is doing so well.
Continuing to send thoughts and prayers for his continued improvement!
Also for you, your mom and your whole family that your strength continues to hold.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 04, 2011, 06:16:31 PM
Mia, I am sending up prayers and thoughts to you and your family and especially your mom that things improve for her.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 05, 2011, 01:16:38 AM
Thank you ((((Chuck and Linda))))

Waiting right now to hear something from her.... Hope to be a little calmed by hearing her voice.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on December 05, 2011, 01:22:43 AM

Fondest thoughts for your dear mother, (((Miafriend))).

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 05, 2011, 01:26:33 AM
Thank you ((((Chuck and Linda))))

Waiting right now to hear something from her.... Hope to be a little calmed by hearing her voice.

Hope you hear soon :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on December 05, 2011, 01:30:51 AM
Thinking of all mums and dads....hope they'll all be fine and back home for christmas!

(((((nellie and mia))))
Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 05, 2011, 06:22:31 AM
So glad to hear that your Dad is doing well, Nellie, and so sorry to hear about your Mum, Mia. I will be keeping both in my thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 05, 2011, 09:44:35 AM
(((((((((((((((( MIA )))))))))))))))))))))

I'm sending prayers your way Mia....I hope they can stabilize your mom to a fast recovery!!  Please keep us updated!

Nellie...xoxoxo
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 05, 2011, 09:53:13 AM
And when it rains it pours!!

My younger sister is staying with my mom while my dad is in the hospital...yesterday she took a big fall..trying to do so much around the house to keep her mind busy...she trips over the area rug..her wrist is swollen,her knees are scraped,she has bruises on her chin...OMG...ice isn't helping...we're going to need to take her in as well...

what the hell !!

I'm just glad nothing is broken,it could of been worse...

Last night my dad looked really good...his stomach is functioning like it's suppose to. The doctors will decide if we can take him home tonight or tomorrow...

((hugs to all ))

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on December 05, 2011, 04:17:29 PM
Nellie.....sorry I am so late with posting this.

I'm so very happy to hear the good news about your Dad. I am hoping for a really fast and complete recovery for him. Tell him to be good and to do exactly what the Doctors tell him !! So pleased with the news.  :)
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on December 05, 2011, 04:26:14 PM
Mia....when I think about you (and I do....often!) ...your Mom automatically also comes to my mind. I remember her being so ill before. So....like the last time..... I offer up a prayer for your Mom. Hoping all will be well for her and for you.


                                                       (((((((Mia and her Mom)))))))
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 06, 2011, 01:22:32 AM
Thank you for your thoughts dear friends, ((((((((Ingmar, Sara, Martina, Jess, Nellie, Suely)))))))))

She is really not well at all. I saw her yesterday. It is nothing to do, just to wait for the test results. They are really testing everything, not just the lungs.

It is good to know she is taken care of.

And thank you for the thoughts for me too. :-*
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on December 06, 2011, 01:25:40 AM

I hope she will be better soon, and you'll feel better too!

 :)
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 06, 2011, 01:33:09 AM
I hope she will be better soon, and you'll feel better too!

 :)

Thank you, dear friend. It means a lot. :-*



She just called, can't talk more than a few minutes now, it seems they found no tumors in her lungs and that was what she feared the most. She is very tired.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on December 06, 2011, 01:41:14 AM

Oh good, no tumors. That's essential!

Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 06, 2011, 01:48:33 AM
Oh good, no tumors. That's essential!



Yes it relieves her from that fear and those worries. I hope less worrying will help her get some rest.

I must say I am also scared about a really bad pneumonia.

Her coughings yesterday was terrible.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on December 06, 2011, 01:49:24 AM

I'll continue to send healing vibes.

And energy for you both.

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 06, 2011, 01:53:46 AM
I'll continue to send healing vibes.

And energy for you both.

 :-*

Thank you so much (((((((Ingmar))))))))

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on December 06, 2011, 01:56:36 AM

 :-* ;)

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 06, 2011, 01:57:13 AM
Thank you for telling us, ((((Mia)))).  I do hope today brings improvement. :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 06, 2011, 02:03:51 AM
Thank you so much for caring dearest ((((((((Sara))))))))

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 06, 2011, 08:45:26 AM
Yes it relieves her from that fear and those worries. I hope less worrying will help her get some rest.

I must say I am also scared about a really bad pneumonia.

Her coughings yesterday was terrible.

Saying my prayers for your mom, Mia.....stay positive hon...xoxoxox
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 06, 2011, 12:15:33 PM
Best wishes for your mum, Mia!!!
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 06, 2011, 12:16:03 PM
Glad to hear you dad is doing so well, Nellie!!!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 06, 2011, 03:02:22 PM
My dad is home!!! he's feeling pretty good.

The lymph nodes came back negative for cancer...no chemo needed!!

so happy....thank you all so much for your thoughts and prayers

love u guys

Nellie...xoxo
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 06, 2011, 05:18:04 PM
fantastic!!!!
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on December 06, 2011, 07:42:33 PM
What a Christmas prezzy Nellie ?? Great news.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on December 07, 2011, 04:42:33 AM
Thank you for your thoughts dear friends, ((((((((Ingmar, Sara, Martina, Jess, Nellie, Suely)))))))))

She is really not well at all. I saw her yesterday. It is nothing to do, just to wait for the test results. They are really testing everything, not just the lungs.

It is good to know she is taken care of.

And thank you for the thoughts for me too. :-*

Dearest ((((((Mia))))))

Your mom and you have been in my thoughts and prayers and continue to be..

I'm glad they found no tumors in her lungs .

Sending you both love, strength, healing thoughts and my sincerest wish that she will improve soon. 

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on December 07, 2011, 04:43:54 AM
My dad is home!!! he's feeling pretty good.

The lymph nodes came back negative for cancer...no chemo needed!!

so happy....thank you all so much for your thoughts and prayers

love u guys

Nellie...xoxo

(((((((Nellie))))))

This is very good news, indeed! 

Love and hugs to you and your family

Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 07, 2011, 06:01:48 AM
My dad is home!!! he's feeling pretty good.

The lymph nodes came back negative for cancer...no chemo needed!!

so happy....thank you all so much for your thoughts and prayers

love u guys

Nellie...xoxo

I am so glad to hear this.

(((((((((Nellie)))))))) !!

Love!

And thank you for your prayers and thoughts for me and my mother.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 07, 2011, 06:02:15 AM
Best wishes for your mum, Mia!!!

Thank you so much, Sonja!!!
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 07, 2011, 06:03:49 AM
Dearest ((((((Mia))))))

Your mom and you have been in my thoughts and prayers and continue to be..

I'm glad they found no tumors in her lungs .

Sending you both love, strength, healing thoughts and my sincerest wish that she will improve soon.  

 :-* :-* :-*

Thank you dearest ((((((((((Sue)))))))))

Thank you from us both. It means a lot.

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on December 07, 2011, 08:11:14 AM

I'm glad, Nellita. What a relief!

Title: Re: Caring for others with chronic illnesses
Post by: dejavu on December 07, 2011, 07:32:55 PM
Good thoughts and hoping for the best possible outcome for your father, Nellie, and your mother, Mia!!

Best wishes for both Nellie's father and Mia's mother from me, too.
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on December 07, 2011, 07:39:17 PM
My dad is home!!! he's feeling pretty good.

The lymph nodes came back negative for cancer...no chemo needed!!

so happy....thank you all so much for your thoughts and prayers

love u guys

Nellie...xoxo

So glad to hear that he's home, Nellie.  That's such a relief for you, I know.
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on December 10, 2011, 01:04:47 AM

I must say I am also scared about a really bad pneumonia.

Her coughings yesterday was terrible.

Dearest (((((Mia)))))) you must feel so worried and scared. My best wishes for you and your mother.  :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on December 10, 2011, 01:05:56 AM
My dad is home!!! he's feeling pretty good.

The lymph nodes came back negative for cancer...no chemo needed!!


That's wonderful news, Nellie!
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on December 10, 2011, 01:11:04 AM
My father suffered from an acute pancreatitis on December 1st, he was brought to hospital in an ambulance. They really feared for the worst, it was such a bad infection.

Thankfully, he recovered quite quickly. He had his first light lunch yesterday, and he is not feeling bad now. We still don't know when they will send him home.

Being 81, of course, the risks are many. And a prolonged hospital stay is not the best thing for his mood and his energy in general. He spends almost the entire day dozing off.

Let's hope he will be able to return to his usual daily life at home soon.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 10, 2011, 01:25:54 AM
I'm so sorry, Daniela - I believe that's a really horrible thing to get, and what a worry for you all.  I do hope your father recovers well.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 10, 2011, 02:30:09 AM
My father suffered from an acute pancreatitis on December 1st, he was brought to hospital in an ambulance. They really feared for the worst, it was such a bad infection.

Thankfully, he recovered quite quickly. He had his first light lunch yesterday, and he is not feeling bad now. We still don't know when they will send him home.

Being 81, of course, the risks are many. And a prolonged hospital stay is not the best thing for his mood and his energy in general. He spends almost the entire day dozing off.

Let's hope he will be able to return to his usual daily life at home soon.

Oh ((((((((((((((((((((((((Daniela)))))))))))))))))))

Dearest!!!!I am so sorry this is happenening now, this too.

Though thankful he recovered and feel better. I so hope he will be able to come home soon. That he won't have to stay too long att he hospital.

My thoughts are with you. You know.

And thank you so much for your thoughts for me and my mother.

 :-* :-* :-* :-* :-*

Title: Re: Caring for others with chronic illnesses
Post by: dejavu on December 10, 2011, 07:34:49 AM
(((Daniela)))

My thoughts are with you and your father.  Hoping he will be able to come home soon.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 10, 2011, 09:21:27 AM
For all our moms and dads.....(((((((hugs))))))))))

Dear Lord with all your Grace,please keep our parents safe and healthy...keep them strong!




so hard to have aging parents... :-\
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 10, 2011, 09:56:25 AM
Hope he recovers soon, Daniela.

Amen, Nellie.

Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 10, 2011, 12:12:04 PM
Best wishes for you dad, Daniela!!

What a scare, I'm glad he's on the mend already.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 10, 2011, 12:12:38 PM
so hard to have aging parents... :-\


No kidding.... :-\
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 10, 2011, 12:56:02 PM
Update on my parents:

My mum is home, in the new apartment. There's still plenty to do, unpacking and getting things sorted, and making the place cozy. Still no curtains e.g. But there's slowly progress, I try to do a little each time I visit.

The home care seems to work fairly well, to my enormous relief.
The girls (of different ages) who come to help her are all very sweet, and from what I've seen they take good care of her, on the whole. They are there about 5 times a day, and a couple of times at night as well.

She also has home rehab a couple of times a week. Three times a week she goes to daycare, to meet other people and to allow my dad to have some time on his own.

My mum is totally dependent on others, she can't even move her wheelchair a meter on her own. That is one of the things she's working on with the home rehab PT.

My dad is very patient with her, wheels her around and gets things for her.

Under the circumstances, they seem to have adjusted pretty well, and their daily life is pretty much under control.

But the overall responsibility is totally relying on me. I organize everything when they're going somewere, arrange for the mobility service, home care, that they bring what they need, and stay with them wherever they're going. I arrange for my mum to go to the doctor, audionom, optician, speach therapist, take her there, get her prescription medicines, and stay in touch with the home nurse. I take her to town to do shopping, and have to plan it very carefully, since you can't go everywhere in a wheelchair. I make sure she has clothes for the season, since a lot of her old clothes are not very suitable for wheelchair use, or very hard for her helpers to take on and off.
My mum doesn't always have a realistic notion of what she needs, so I have to have it for her. And make sure she gets it.

I remind my dad of dozens of things, and have to do it very carefully, as he's easily offended by it.

Since neither of them is capable of taking the full responsibility or planning ahead or arranging things, all of this relies on me.

There isn't one single day at work where I don't make at least one phonecall regarding my parents, often more.

Everybody tells me to take care of myself too, and I try to. I'm so happy I was able to go to Chicago in November, I really needed to get away.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 10, 2011, 01:04:43 PM
Oh ((((Sonja))))

I know you're not asking for sympathy, but it must be very hard.  And with your brother so far away....  When my mother was becoming more and more dependent, at least she was living next door to us, and I had Michael too.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 10, 2011, 01:26:26 PM
Thank you, Sara.

The extreme stress of their move and my mum's first weeks at home is over, and if nothing takes a turn for the worse, it's sort of manageable the way it is right now.

But my dad has caused several crisis already, since he doesn't always know what my mum needs, or his own limitations. He's trying to do things he can't, or shouldn't, and I'm afraid it will happen again.

Yes, it is hard. In a way it's like having responsibility for children, only much harder.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 10, 2011, 04:27:31 PM
Glad to hear that you are coping so well, Sonja, and that everyone has as much quality of life as is possible, but it must be a terrific responsibility for you, and such hard work. Do take care of yourself. :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 10, 2011, 05:02:04 PM
Sonja, I'm glad to hear your parents are doing well and adjusting, I hope the situation continues to improve.

Daniela, I'm sorry to hear about your father, I hope he returns to his schedule soon!
Title: Re: Caring for others with chronic illnesses
Post by: tonydude on December 10, 2011, 07:09:02 PM
My mum is totally dependent on others, she can't even move her wheelchair a meter on her own. That is one of the things she's working on with the home rehab PT.

My dad is very patient with her, wheels her around and gets things for her.

 Sonja, this must be very exhausting.  I did wonder, though, if your Mom could improve enough to use one of those Jazzies, or motorized wheelchairs.  They can be used in a home or outside.  Right now, though, it doesn't seem she would be able to concentrate enough. But maybe later. Am not sure if they are covered, in Sweden, by the health care system, but they are, here.

 Meanwhile, I wish you well, along with everyone else taking care of their parents.  You have the love and support of all of us !
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 10, 2011, 08:29:40 PM
I am so glad your dad is home, Nellie! What wonderful news and so very glad that there is to be no chemo or radiation.
So very happy for your dad, you and your family!
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 10, 2011, 08:32:03 PM
(((Mia))).
I am continuing to pray and send thoughts to and for your mom.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 10, 2011, 08:38:26 PM
Daniella, I have had two attacks of pancreatitis, and the pain is far worse than anything I have experienced, so I know how your dad was suffering. I was much younger too, so it know it had to have been so bad for him. I am so glad he has responded so well and that hopefully he will be able to be home soon and get back into his routine.

I am thinking and praying for him and you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 10, 2011, 08:44:37 PM
(((((Sonja)))))
I know how hard and stressful it has been for you and the situation with your parents.
I know you are doing everything right for them.
I am hoping settle more for you and them.

I am so glad you were able to make it to Chicago as well. it was great being able to spend time with you1
I know you needed it.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 11, 2011, 03:24:24 AM
Thank you so much Jess, Chuck and Linda.

These messages of sympathy and support mean a lot to me.
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on December 11, 2011, 03:40:25 AM


I remind my dad of dozens of things, and have to do it very carefully, as he's easily offended by it.

Since neither of them is capable of taking the full responsibility or planning ahead or arranging things, all of this relies on me.

There isn't one single day at work where I don't make at least one phonecall regarding my parents, often more.


Oh ((((Sonja)))) that sounds so familiar...........

More or less the same for me here. But what else can we do? We must cope, we must cope! And be thankful for the moments of spare time and vacation we can get!
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on December 11, 2011, 03:41:53 AM
Daniella, I have had two attacks of pancreatitis, and the pain is far worse than anything I have experienced, so I know how your dad was suffering. I was much younger too, so it know it had to have been so bad for him. I am so glad he has responded so well and that hopefully he will be able to be home soon and get back into his routine.

I am thinking and praying for him and you and your family.

Thanks a lot (((Linda))). Yes he was very much in pain, but that has passed now.

Thanks again for your good thoughts!
Title: Re: Caring for others with chronic illnesses
Post by: dahlia on December 11, 2011, 03:42:51 AM
Thanks you all, dearest (((((friends)))). Your words count a lot!
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 11, 2011, 03:43:22 AM
Sonja, this must be very exhausting.  I did wonder, though, if your Mom could improve enough to use one of those Jazzies, or motorized wheelchairs.  They can be used in a home or outside.  Right now, though, it doesn't seem she would be able to concentrate enough. But maybe later. Am not sure if they are covered, in Sweden, by the health care system, but they are, here.

 Meanwhile, I wish you well, along with everyone else taking care of their parents.  You have the love and support of all of us !

Thank you so much for your concern, Tony!

I know exactly what you mean, since I've been working professionally with them for years.
In fact, I've been part of a group that set the rules for electrical wheelchairs in our part of the country.

My mother has asked for one over and over again, and they are fully covered by the health care here.

Unfortunately she's not able to safely drive one, due to her cognitive impairment as a result of the brain damage the stroke caused.
I don't have much hope that this will improve enough to allow her to drive one without any risk for herself or others.

Kinda ironic, isn't it?
I've been working with electrical wheelchairs for years, doing assessments to see if people are able to drive them, made sure there home is suitable for using them, tried them out with people, taught them how to drive them, and even set the rules for the whole   operation. And my own mum can't even have one although she really wants one. She doesn't even really understand why she can't have one.

 
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 11, 2011, 03:51:23 AM
Oh ((((Sonja)))) that sounds so familiar...........

More or less the same for me here. But what else can we do? We must cope, we must cope! And be thankful for the moments of spare time and vacation we can get!

Thank you Daniela!

You're right, there's nothing else we can do, so we must cope.

Like a friend (brokie) of mine said: It's major payback time.
And it really is. It's the reverse situation of what our childhood was.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 11, 2011, 08:55:08 AM
(((Mia))).
I am continuing to pray and send thoughts to and for your mom.

Thank you ((((Linda))))

She is home from the hospital now.

Not well enough to manage on her own, I dont' know how it would have worked woithout my stepfather.

She still almost has no voice but the inflammation is cured as it seems.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 11, 2011, 08:55:48 AM
((((((Sonja))))))

Strenght and good energy for you.

You are doing a wonderful thing.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 11, 2011, 11:14:20 AM
Thank you, Mia!


I'm glad your mum is well enough to be sent home.
Title: Re: Caring for others with chronic illnesses
Post by: desertrat on December 12, 2011, 01:50:02 AM
so, it seems all mums and dads are back home by now and recovering? sending good thoughts for al of them, hope they'll all be able to celebrate christmas and see some happy hours with family and friends!  :)
Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 12, 2011, 04:34:38 AM
Yes! Thank goodness for that.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 12, 2011, 01:46:56 PM
Thanks Martina!
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on December 15, 2011, 10:24:46 AM
(((((( Mia )))))))

glad your mom is home now...she' ll get better now!!!

xoxoox
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on December 18, 2011, 07:32:49 PM
My mum is home, in the new apartment. There's still plenty to do, unpacking and getting things sorted, and making the place cozy. Still no curtains e.g. But there's slowly progress, I try to do a little each time I visit.

My mum is totally dependent on others, she can't even move her wheelchair a meter on her own. That is one of the things she's working on with the home rehab PT.

There isn't one single day at work where I don't make at least one phonecall regarding my parents, often more.

Everybody tells me to take care of myself too, and I try to. I'm so happy I was able to go to Chicago in November, I really needed to get away.

Quoting just part of your post there, Sonja.  Thanks for filling us in on the details.  That is so much responsibility that you are facing, and you are doing it well. 

I'm glad your mother is getting along as well as she is, but you're right, you need to take care of yourself, too.  I was so glad you could come to Chicago; I'm sure it did you much, much good.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 19, 2011, 11:09:39 AM
Thank you Debbie!

You're right, going to Chicago, getting away a bit, and meeting everybody did me a world of good!

I'm sooo glad I was able to go.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 19, 2011, 03:23:28 PM
Same here, Sonja!

Good wishes to everybody doing caregiving.

Title: Re: Caring for others with chronic illnesses
Post by: Sason on December 19, 2011, 04:09:16 PM
Thanks Fritz!
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 31, 2011, 02:41:08 AM
Good news for a new year for our family. At his recent (every 6 weeks) appointments with the haemotologist, my husband was still doing well with his multiple myeloma, but the ratio of A to B - never quite sure what these are - were very slowly drifting upwards, not enough yet to need further treatment, but heading that way.  But yesterday they were quite a bit down again - it's all apparently quite difficult to measure accurately, but the doctor was very pleased, and wrote down 'asymptomatic myeloma'. So my faint worries (Michael just doesn't seem to worry at all!) have been switched off again.

It's now 2 years since his diagnosis, and I have heard of several people recently who have died with in a few months.  It's a very variable, unpredictable cancer - we thank God that he is doing so well. In spite of his 3 times a day dialysis he feels perfectly normal and fits his life around it without frustration.

Perhaps this isn't quite the right thread at the moment - I am not a carer - but 'vicissitude' doesn't seem the word either...

So I'll put it in the Happy News thread too :)
Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 31, 2011, 10:05:04 AM
What excellent news, Sara. Michael is an inspiration to us all, and to hear such good news is well deserved.

A Very Happy New Year to all the family from us here in Westcliff.
Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on December 31, 2011, 10:43:21 AM
 Sara, I couldn't help but notice that you posted a summary of the news, on New Year's Eve.  That seemed to me an extremely healthy, and practical, way to look over what had been, this last year, and the hopes for the new year arriving.
 I just hope you know we all want the next year to be good for you and your VERY tough husband.  These health problems are a hurt, even if just the uncertainty.  You both are troopers.

 I wish you the VERY best, and also the same for those who have lost a loved one, or have a chronic illness, or are suffering from the illnesses of their own loved ones.  It's not internet empathy.  We mean it !!!!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 31, 2011, 12:34:47 PM
Wonderful news, Sara!

Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 31, 2011, 12:43:02 PM
Thank you so much, Jess, Fritz and Tony.

Tony, you put that so nicely - And it's true that whenever anyone posts here, or anywhere on the forum, about their own difficulties of body or mind, or of those who are important to them, I do think about them at the time and afterwards, and wonder how they are getting on.  It's good when people do post an update - I don't like to bother them by asking too much, and I always wonder if PMs seem intrusive. I hope not, because I always love to receive them...
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on December 31, 2011, 12:43:33 PM
Wonderful and amazing news, Sara! I know about that little niggle in the back of your mind, but you both are being strong about it and not letting it impact your lives more than it has to. That worry will always be there, but you are handling it well. Michael is amazing. But you already know this! He truly is an inspiration!

My thoughts are with you both in this new year! :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 01, 2012, 03:57:28 PM
Thanks, Linda :-*
Title: Re: Caring for others with chronic illnesses
Post by: jack on January 03, 2012, 03:23:18 AM
Good news for a new year for our family. At his recent (every 6 weeks) appointments with the haemotologist, my husband was still doing well with his multiple myeloma, but the ratio of A to B - never quite sure what these are - were very slowly drifting upwards, not enough yet to need further treatment, but heading that way.  But yesterday they were quite a bit down again - it's all apparently quite difficult to measure accurately, but the doctor was very pleased, and wrote down 'asymptomatic myeloma'. So my faint worries (Michael just doesn't seem to worry at all!) have been switched off again.

It's now 2 years since his diagnosis, and I have heard of several people recently who have died with in a few months.  It's a very variable, unpredictable cancer - we thank God that he is doing so well. In spite of his 3 times a day dialysis he feels perfectly normal and fits his life around it without frustration.

Perhaps this isn't quite the right thread at the moment - I am not a carer - but 'vicissitude' doesn't seem the word either...

So I'll put it in the Happy News thread too :)
feel free to add a bit of sunshine to the vicissitude thread anytime.  so happy to hear of your good fortune, wring all the joy out of it you can.  clearly none of us know from day to day where our fortunes will take us.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 03, 2012, 11:20:29 AM
I suppose this is good news ??? I have my orthopaedic outpatient appointment for 6th February!
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 03, 2012, 11:47:24 AM
Good luck with it, Jess!
Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on January 03, 2012, 03:31:40 PM
I suppose this is good news ??? I have my orthopaedic outpatient appointment for 6th February!

 I hope it turns out well, Jess.  Things have gotta get better sooner or later, right?  Best of luck !!!
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on January 03, 2012, 07:35:10 PM
Fingers crossed for you, Jess!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on January 03, 2012, 07:40:36 PM
Geaux Jess!

Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 04, 2012, 01:28:25 PM
I will have to convince the surgeon to do the knee replacement, but assuming I am successful in that, the waiting time is just fifteen weeks from referral by GP, so it could be done really quite soon.
I don't know whether to look forward to it or not!

Thank you all for your thoughts anyway. I don't know what I would do without my Brokie friends.
Title: Re: Caring for others with chronic illnesses
Post by: atruant on January 05, 2012, 11:52:00 AM
All the best, Jess. A number of my friends have new knees - they're going forward so fast they haven't looked back!
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on January 06, 2012, 08:53:26 AM
Good luck, Jess, with the procedure.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on January 06, 2012, 11:44:54 AM
Good luck, Jess, my b-i-l had one knee done a couple of years ago, and now that he's retired will get the other knee done.

Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 06, 2012, 11:45:00 AM
Thank you guys. That is very encouraging to hear. I really appreciate your thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 09, 2012, 03:46:25 PM
Thank you dearest ((((((((((Sue)))))))))

Thank you from us both. It means a lot.

 :-* :-* :-*

You're welcome dearest (((((((((((Mia)))))))))

I really hope she's on the mend now and getting better. 

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 09, 2012, 03:51:30 PM
My father suffered from an acute pancreatitis on December 1st, he was brought to hospital in an ambulance. They really feared for the worst, it was such a bad infection.

Thankfully, he recovered quite quickly. He had his first light lunch yesterday, and he is not feeling bad now. We still don't know when they will send him home.

Being 81, of course, the risks are many. And a prolonged hospital stay is not the best thing for his mood and his energy in general. He spends almost the entire day dozing off.

Let's hope he will be able to return to his usual daily life at home soon.

(((((((((Daniela))))))))))

I am so sorry your father and you are going through this now, but glad to hear that he recovered quickly and hope that he's home by now.  My thoughts are with you.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 09, 2012, 03:52:11 PM
For all our moms and dads.....(((((((hugs))))))))))

Dear Lord with all your Grace,please keep our parents safe and healthy...keep them strong!




so hard to have aging parents... :-\

Yes...  Here's to our parents and to ((((((((hugs)))))) for them all!
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 09, 2012, 03:54:20 PM
Thank you, Sara.

The extreme stress of their move and my mum's first weeks at home is over, and if nothing takes a turn for the worse, it's sort of manageable the way it is right now.

But my dad has caused several crisis already, since he doesn't always know what my mum needs, or his own limitations. He's trying to do things he can't, or shouldn't, and I'm afraid it will happen again.

Yes, it is hard. In a way it's like having responsibility for children, only much harder.

(((((((((Sonja))))))))) 

My thoughts are with you!  I know how difficult this must be.

Take care of youself too.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 09, 2012, 03:57:00 PM
Good news for a new year for our family. At his recent (every 6 weeks) appointments with the haemotologist, my husband was still doing well with his multiple myeloma, but the ratio of A to B - never quite sure what these are - were very slowly drifting upwards, not enough yet to need further treatment, but heading that way.  But yesterday they were quite a bit down again - it's all apparently quite difficult to measure accurately, but the doctor was very pleased, and wrote down 'asymptomatic myeloma'. So my faint worries (Michael just doesn't seem to worry at all!) have been switched off again.

It's now 2 years since his diagnosis, and I have heard of several people recently who have died with in a few months.  It's a very variable, unpredictable cancer - we thank God that he is doing so well. In spite of his 3 times a day dialysis he feels perfectly normal and fits his life around it without frustration.

Perhaps this isn't quite the right thread at the moment - I am not a carer - but 'vicissitude' doesn't seem the word either...

So I'll put it in the Happy News thread too :)

(((((((Sara)))))))

This is very good news.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 09, 2012, 03:58:00 PM
Thank you guys. That is very encouraging to hear. I really appreciate your thoughts.

Good luck with all of this ((((((Jess))))) !
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 10, 2012, 10:37:16 AM
(((((((((Sonja))))))))) 

My thoughts are with you!  I know how difficult this must be.

Take care of youself too.



Thanks, (((Sue))), I'm trying to.
Title: Re: Caring for others with chronic illnesses
Post by: kittykat on July 05, 2012, 05:17:35 AM
As some of you know, my mum has had a blood clot in her leg for a few months now, and has been having weekly blood tests and scans. She even spent a night in hospital with pneumonia :( She had a scan last week and she and my dad got the results yesterday - she's got lung cancer :'( It was absolutely awful when I found out and I was hoping to talk to somebody on here...
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on July 05, 2012, 05:23:14 AM
Dear Kathryn - thoughts and prayers for you and your family.  I have experience of what you're probably feeling :-*.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 05, 2012, 06:17:21 AM
Dear Kat, I am so sorry to hear about your Mum. My thoughts are with you.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on July 06, 2012, 03:23:25 PM
So sorry to hear about your mum, Kathryn.

I wish for the best possible outcome.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on July 18, 2012, 05:05:36 PM
I, too, have experience in what you are feeling and going through Kathryn.

My thoughts and prayers are with you all. 
Title: Re: Caring for others with chronic illnesses
Post by: kathy on July 18, 2012, 09:39:39 PM
As some of you know, my mum has had a blood clot in her leg for a few months now, and has been having weekly blood tests and scans. She even spent a night in hospital with pneumonia :( She had a scan last week and she and my dad got the results yesterday - she's got lung cancer :'( It was absolutely awful when I found out and I was hoping to talk to somebody on here...

Hello kk:

I wasn't aware of your mother's condition; I'm so sorry to hear of this.  I really don't know what to say except I'm thinking of you all and wishing you all the best luck.

Is she a longtime smoker?   My daddy did not have lung cancer but chronic emphysema and COPD, due, unfortunately to longtime smoking.  He passed away in Feb. 2007; I was in terrible denial.  Nothing has ever been the same.

I just hope this situation for your mother, your dad and yourself will come to a happy outcome and the illness has been caught quickly.

Kathy     :-*
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on July 21, 2012, 02:19:20 PM
I guess this is the proper thread to report my mother's outcome. She, for those who are not up to events, is suffering from terminal cancer. It's spreading and the Doctor saids it's not a good idea for Chemo. She also has a brain tumor besides. Today I was with her when a headache occurred it was not pretty. She started to cry and holding her head. Her sister, my aunt, was there at the time too. She took her medicine and within minutes she was fine. She is done with her radiation to shrink it, but will not know if it did anything until next week sometime. She can't sleep, for she coughs all night long. She takes 10 to 15 minutes naps thru out the day only. I had a great time with her this weekend. I go back to Minneapolis to look for a job on Sunday. My step-father and mother are constantly fighting right now. I think they don't know what to do for one other. Her sister live 4 hours away and will stop by once every other week to help. Another sister lives in the same town as the the other sister, so she'll come down the other weeks. So, in a sense they will be alternating weeks. It will be a tough road ahead. They give her 3 to 6 months.  :'( :'(
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on July 22, 2012, 02:16:42 PM
Still thinking of you and your family, (((Tom)))
Title: Re: Caring for others with chronic illnesses
Post by: Sason on July 23, 2012, 01:03:34 PM
(((((Tom)))))

Yes, a tough road for you all.

Do you have anyone around to draw support from?
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on July 23, 2012, 01:10:23 PM
^^^^

Some friends, no Family members in town. Can Call them if needed.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on July 23, 2012, 01:23:53 PM
Glad you have someone at this trying time.

And of course, you can always come here. We're all thinking of you.   :-*
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on July 23, 2012, 03:37:57 PM
(((((Tom)))) .... saying prayers for you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 25, 2012, 05:31:55 AM
Hope you are doing OK, Tom.

This must be such a terrible time for you.
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on July 25, 2012, 06:21:50 AM
^^^

I'm doing ok. But being laid off sucks. It keeps me thinking about my mother even more. Had 2 interviews yesterday, one today and one on Friday. But nothing I really want. But will take the one on Friday if offered. All around my life sucks right now.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on July 25, 2012, 07:46:52 AM
It is so unfortunate that everything has come at once, doesn't it always.
It is probably better to take a job, any job, than having too much time to think, at present, and work does tend to make work, in that you make new connections who might let you know if something better comes along.

Wishing you strength in adversity. :-*
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on July 25, 2012, 06:39:16 PM
You deserve some luck Tom so fingers crossed for a new job. Still saying a prayer for your mom. ((((Tom)))
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on July 26, 2012, 03:11:39 AM
And the same thoughts from me, Tom :-*.
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on August 12, 2012, 08:30:45 PM
My mom shaved her head on Monday. We went shopping for a hat, found one too. She started her walking again. She is doing 1/2 a mile a day. Her goal is by next week 1 mile a day. She uses a walker with wheels for support. The only problem is that she is loosing weight and muscle mass. I told her to buy some 5lbs wights to exercise with.

later, Tom
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on August 12, 2012, 09:15:51 PM
My mom shaved her head on Monday. We went shopping for a hat, found one too. She started her walking again. She is doing 1/2 a mile a day. Her goal is by next week 1 mile a day. She uses a walker with wheels for support. The only problem is that she is loosing weight and muscle mass. I told her to buy some 5lbs wights to exercise with.

later, Tom

Thanks for keeping us posted. Tom. I saw your lovely picture of your family on FB.
My prayers continue to be with your Mom, you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on August 13, 2012, 01:53:18 AM
Your mother is showing such strength and courage, Tom. Thoughts with you all.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on August 16, 2012, 05:04:41 PM
(((((Kathryn)))))
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on August 16, 2012, 05:05:02 PM
(((((Tom)))))
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on August 16, 2012, 07:35:26 PM
My younger brother is getting married on Friday Sept. 14th. One of my mother's last wishes. I might be starting a new job that week too. Working as a temp at Wells Fargo. Its not what I want, but it's something. Talk to my mother about this, she is very happy. She also thinks, shel'll make it  for the wedding. However, she indicated that she is going faster than she thought. Boy that was hard to deal with. I'm confused on what to do. Do I go or tell them I'll start after the wedding? I'm at the point of nervous breakdown.
Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on August 16, 2012, 09:06:27 PM
  Tom, my heart goes out to you.  I've been in the same place, too, as have others here, as well.  Try not to stress out, and, yes, I know that's not easy.  As for what to do, you are the only one who can make the choice, but am hoping you have more options (about the job, and income), and that you check with the prospective employer (carefully), and factor in just what you can handle and what you can't.
 We are always going to be here for you, and please be sure, it's not wrong to let us go along with you, week by week, or even day by day. I feel very strongly, myself, in wishing for the least possible hurt for you, and your loved ones.  Get as much rest as you can, when you can !
Title: Re: Caring for others with chronic illnesses
Post by: janjo on August 17, 2012, 09:39:23 AM
Tom :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sason on August 17, 2012, 11:42:13 AM
Hang in there (((Tom)))

There is only so much you can do, try not to strain yourself.

Easily said, I know. But you need to save some strength for yourself too.   :-*
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on September 25, 2012, 02:58:34 PM
About my mom. I knew she would go down hill after my brother's wedding 2 weeks ago. Words are in my step-father's voice.


There has been a big change here with Dee. This morning she is in a lot of pain so now I suppose we are going to have to go on some strong pain killers and see if that helps. It is so hard to see this wonderful woman go down like this. I just hope and pray the Lord takes her fast so she don't have to put up with this, and also myself. It is going to be hard after she passes I know that but she will not be in any pain and if that book (Heaven is for Real) is right she will be in a lot better place. We both believe in Heaven and have very big faith in God so that dose help a lot. Dee is ready to go at any minute and if she could have her way she would go this morning. Please pray she goes soon and fast. Going to get hold of Hospice and see what they are going to do.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on September 25, 2012, 03:10:55 PM
((((Tom)))

I'm so sorry. :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on September 25, 2012, 03:33:31 PM
Dearest (((((Tom)))))

I am thinking so much of you and your Mom and family. Know that I am sending prayers for a peaceful final path for your Mom. I sent you an e-mail.

Much love to you, Tom and know that you have so many people here who love you.

:-*
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on September 25, 2012, 05:17:17 PM
Prayers for you and your family, Tom.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on September 25, 2012, 07:26:31 PM
Prayers and thoughts for you and your family, Tom. Hospice care is wonderful, my mother is experiencing the home equivalent now. They don't prolong suffering but make the time that remains as comfortable as possible.

Title: Re: Caring for others with chronic illnesses
Post by: Trigger Hippie on September 26, 2012, 07:44:51 AM
Tom, I spent 7 years caring for my mother who had a continuously degenerating disease, while holding down a full-time job. There is nothing easy about it, particularly towards the end, but you know this. It is a very long grieving period.

There comes a time when they need to go, when they have had enough. It is not what those that remain behind want. Finding acceptance in that, doesn't make the loss any easier, however it does allow you to start thinking about yourself again.

It will be hard, all of it, but you must only do what you are able to do, try not to try for more than you can do. Remember yourself.

Your mother would want you to find a way forward, that is what you should do.

It does get better!

N.
Title: Re: Caring for others with chronic illnesses
Post by: jack on September 28, 2012, 02:10:44 AM
what nick said...
Title: Re: Caring for others with chronic illnesses
Post by: Ennis Del Mark on September 28, 2012, 04:11:51 AM
((((Tom)))

I'm so sorry. :-* :-* :-*


Me too, my friend.  It will be 12 years ago tomorrow that my mother died.  Like yours, mine was suffering from cancer.  The last three days she was in a coma.  I remember holding her hand and telling her that it was all right to go. I so know what you are going through. My prayers are with you and your family and that your mother's suffering will soon be over.  
Title: Re: Caring for others with chronic illnesses
Post by: Sason on September 29, 2012, 11:37:41 AM
((((Tom))))
Title: Re: Caring for others with chronic illnesses
Post by: janjo on September 29, 2012, 11:40:02 AM
Thinking of you, Tom.
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on September 29, 2012, 12:15:39 PM
Thoughts and prayers to you, Tom.
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on September 29, 2012, 12:34:26 PM
moe info about my mother from my step-father.

I don't know what is going on here. Yesterday Dee was a mess and this morning you  would not even think she is sick. Hospice did make some medication changes and last night she got a good nights sleep and looks a chipper as a new born baby this morning. I hope I didn't put a scare into any of you but Dee was not in the best of shape yesterday. Just thought I would give you a update on this change. Maybe this is the way Cancer works I don't know this my first time dealing with this stuff.
                                                TOOT
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on September 29, 2012, 12:50:54 PM
Hoping and praying for the best, Tom.

Title: Re: Caring for others with chronic illnesses
Post by: killersmom on September 29, 2012, 12:58:32 PM
Keeping all of your in my prayers, Tom!
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on October 10, 2012, 07:16:56 PM
more info on my mother. In my step-father's words.

We have moved up one more step on the ladder. This morning when Hospice was here they gave Dee some Morphine and she told me she wants some before she goes to bed tonight. Hospice has showed me how to give it to her and how to fill the Syringe. At this point she is on a very low dose like 0.13 ML It is about as much as a tear drop. I just fill the syringe and put it in her mouth and squirt it in. It is not being given like a shot with a needle. I don't think they would let me do that  kind of stuff. She gets tired real easy and is sleeping more and more. Sunday including and night sleep she was a sleep about 14 hr. But she had a real big day on Saturday so I think that had a lot to do with it. Hospice told me it might take her a couple days to recover from a big day. She is a lot better in the morning and that might be the best time for company, and not to long a stay. We are still able to get out to eat and she loves that a lot but when we come home and she comes up our stairs and gets in the house most of the time it is night night time. The Hospice Dr. is coming over to see her this coming Monday the 15th. Dees lungs are making a nose and the nurse wants to have the Dr. lessen to her lungs. They have a rattle in them when she breathes real hard. I am aware that what is happening is just part of the phase of her dieing but it is very hard to see, and I know it is just going to get worse. I will try to still find time to give you all updates on Dee but when she needs my full attention it might be a lot harder to do. This is why I have cut down on forwarding on emails I get.
 I went to the Dr. for my yearly check up and had to have a x-ray on my Lungs and ribs. The Lungs were ok but they said they want me to go have a bone scan on my ribs, they said it looked like there are two ribs that might be cracked and there was something else there they wanted to look at. When this is going to be done I don't know, but will keep you informed also. Also Dee and myself have the same Cancer Dr. and he asked about Dee and I told him she still gets out to eat etc. He said that we did the right thing by not taking Chemo because she just night not have had as good a life these last 4 months as she has had. Going to close for now and Keep Dee in your prayers and I will have to say one thing our Church has been so nice a helpful to Dee that I just can't say enough about it. People we don't even know say they are praying for her. I just wish she has a peaceful passing that is all.
                        LOVE and GOD BLESS YOU ALL
                           
Title: Re: Caring for others with chronic illnesses
Post by: Sason on October 12, 2012, 04:18:24 PM
This must be so hard for you (((Tom)))

How often are you able to go see her?
Title: Re: Caring for others with chronic illnesses
Post by: morrobay on October 12, 2012, 05:53:55 PM
Tom, thinking of you during this difficult time.
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on October 12, 2012, 08:02:22 PM
Only just caught up with this thread.

(((Tom))) ...... Thoughts and prayers are with you and your family.
Title: Re: Caring for others with chronic illnesses
Post by: Sandy on October 13, 2012, 12:57:04 PM
Tom,

My thoughts and prayers are with you.

Hugs,

Sandy
Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on October 30, 2012, 05:56:23 PM
more from my step-father about my mother.

I have to make some changes here. This morning when I came out of the
bedroom I seen Dee siting on the walked that I have with wheels. I said what you
doing and she said going to the bathroom, I told her to hold it and got her pushed
into the bathroom and on her pot. See I always take her into the bathroom on
that walker and it has handles just like her ca-mod and I suppose she thought                     
that was what she was on when she was on the walker. She also said she hurt
last night so the change is going to be I am coming out here in the living room
to be with her. Shes not in favor of it but I said that is the way it is going to be
as long as you are here and that is it....... I think she got the message, I have let
her have her way most all the time but not this time. Hospice is making a extra vist
today and never no might just raise the Morphine.
Title: Re: Caring for others with chronic illnesses
Post by: kathy on October 30, 2012, 06:03:46 PM

Tom, I feel very bad to read of this. 
I wish things were so different.  Thinking of you and your mom,

kathy

Title: Re: Caring for others with chronic illnesses
Post by: jack on November 04, 2012, 06:32:49 AM
you are doing the right thing to be there with her.  you won't regret it later, even though it is tough now.

Title: Re: Caring for others with chronic illnesses
Post by: brokebacktom on November 06, 2012, 05:36:48 PM
Update on my mother from the words of my step-father.

Things have changed to the worst again. Family, I am sorry that I have to let
you know this by email but there is no way I have time to contact you all by
phone. I called Hospice last night and they helped me through the night with
Dee and her regular Nurse came over this morning. He checked her out and her
pulse was 111 and her BP was great 120/66 But she is now sleeping just about
around the clock, stopped eatting. I asked him straight out, how much time do you think she
has left. He said she could go in the next couple days or it could last maybe a few
weeks. There is no more of this Month talk anymore. She can not walk anymore
so she will be in the Hospital bed from now on. She was sleeping in our recliner which
she loved but that is out now. We are also going to be putting in Catheter today
and that will make my job a little easier. Before when she had to go to the
bathroom I had to get her up out of the recliner and last few time she just screamed
in pain and I don't want to here that sound again. It made me feel like I was
hurting her. She can't swallow pills anymore so we have to move to liquid stuff,
or smash the pills and stick them in a syringe with water. It is not necessary to
answer this letter. I know you are all praying for her and I thank you a lot for
that.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on November 06, 2012, 05:39:40 PM
(((Tom)))
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on November 14, 2012, 07:00:07 PM
(((((Tom)))))

Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 17, 2012, 03:49:55 PM
I am not sure if this the right place to post this now, but after so much worries for a long time about my husband, Mr H, this seems to be the place, even now. It affected me too very much. It was hard for me to talk about and one of the reasons I haven't been posting on the forum for long times.

As some of know we have had big worries about Mr H's health for a very long time. There were some months when Mr H was feeling totally exhausted, he was treated in two turns for Lyme's disease and there was talks about if he had some stress syndrome. Again and again they tested and even when the tests came out saying he didn't have that kind of cancer they said that they couldnt' rule it out so they kept on testing for that, no other cancer form and no other disease. After four months they said it was probably Myeloma and they started to test him for that, again and again and when the tests came out saying it was not Myeloma they still tested again, saying it couldn't be ruled out and sometimes that maybe the biopsy missed the exact spot.

He also had other symptoms last winter, for instance he had a blue and swollen foot that they noticed but didnt' do anything about. Not until new doctor's at a new and bigger hospital discovered from three months old x rays that he had blood clot in the lung. Then they checked the foot out and he coudl get medicine for it. After living five months with blood clot in the foot.

And the Myeloma tests continued. They took more advanced tests and specialist biopsies. They started to talk about other possibilities than cancer, thay said it is a possibility that it is the result of Lyme's disease, what he had problems with the months before they started to talk abotu cancer. And Mr H started to get better. He stopped taking the blood thinning shots they gave him and still felt better.

And today - 16 months after they told us he had metastases in his back - they now say that it isn't!!!

What a long journey this has been. Now I hope there will be time for healing. For him but also for me. Not that I should complain as I am not the one who had the symptoms, but it hasnt' always been easy.... So I'm hoping for healing time for us both!
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on December 17, 2012, 04:20:21 PM
Hoping and praying for proper diagnosis and swift healing, Mia.

Title: Re: Caring for others with chronic illnesses
Post by: janjo on December 17, 2012, 05:28:53 PM
Well, it sounds as if Mr H is at least going in the right direction, Mia. Thinking of you.
Title: Re: Caring for others with chronic illnesses
Post by: kathy on December 17, 2012, 08:35:25 PM
Dearest (((((Mia :-*):

I'm so sorry to read of this.  All that time - it must have been so hard. 
Sending my best to both of you always and - Mr. H - please get well! 

hugs from
kathy    xoxoxo
Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on December 17, 2012, 09:20:44 PM
 Mia.....am hoping both you and your husband have rest and some relief from these hurts !!!!  A big hug...... and please keep us informed.....
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 18, 2012, 03:41:17 AM
Thank you so very much for your support dear Fritz, Jess, Kathy and Tony! It means a lot.

It's been a long time. I don't' think they will know for sure what it was that caused these problems. They say it is a possibility that the blood clots was caused by one of the tests for prostate cancer.  :(

There is no way to say for sure if the reason for the rest of the symptoms was Lyme's disease and if so there is nothing to be done about it but wait. As he is so much better today they don't' plan any more tests now, if he doesn't' get new symptoms of course.

On the good side he is thoroughly tested now. I think we can rest from this. And think about the future in a more constructive ways. :)
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on December 18, 2012, 04:26:24 AM
Dear Mia, I'm so glad for you both. And I do understand how hard the uncertainty must have been for so long - particularly for you, I think. :-*
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on December 18, 2012, 05:12:13 AM
Thank you so much for this and for understanding, dear ((((Sara)))) !!  :-*
Title: Re: Caring for others with chronic illnesses
Post by: jack on December 22, 2012, 07:03:43 AM
mia, you know i know how physically and emotionally exhausted you must be, and all that uncertainty on top of the worry.  i hope you will really pamper yourself with rest and anything that makes you feel whole again.  reading your narrative i empathized the whole way.

my best to you and your husband.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 24, 2013, 11:00:43 AM
An update on my husband Michael.

I haven’t posted for a long time as he’s been pretty stable:  Not much change in the myeloma, and peritoneal dialysis 3 times a day at home (and abroad – Australia twice, walking holiday in Italy, sailing in the Greek islands, on trains, planes, taxis and on mountainsides) has been very successful over the past 2 years. It would have driven me mad if it had been me, but he just adapted to it and fitted his life around it.

But in the last few months he has been gradually going downhill, with exhaustion, nausea, clumsiness and difficulty in walking, and since New Year he (and I) started to get really depressed and worried about himself, something which rarely happens. Last week it was a relief to find out  that this is unlikely to be caused by the cancer, and a complete x-ray showed that he still has no bone damage from the myeloma.

Today however we learned that it was what had been becoming more likely – his kidney function has deteriorated almost to zero, and the level of dialysis is no longer enough, so that he has become poisoned by the waste products in his blood. It was some comfort to know that all his symptoms can probably be attributed  to this, and also that a return to haemodialysis in hospital 3 times a week should improve things considerably.

This will start on Saturday, at first in the large hospital 25 miles away, but soon hopefully in a small hospital an easy drive from home, where he was before. In some ways it will be a lot less time-consuming, but much less flexible of course, and holidays will have to be planned even more carefully - but still possible. Generally I feel relieved.

So I am just praying that he will start to feel better soon, and return to the near-normal life he’s been leading for the majority of the time since it was all diagnosed (just over 3 years ago)
Title: Re: Caring for others with chronic illnesses
Post by: kittykat on January 24, 2013, 11:06:24 AM
(((Sara))) :-*
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on January 24, 2013, 11:22:31 AM
Hope the increased dialysis helps, ((((Sara)))).

Title: Re: Caring for others with chronic illnesses
Post by: killersmom on January 24, 2013, 11:24:24 AM
An update on my husband Michael.

I haven’t posted for a long time as he’s been pretty stable:  Not much change in the myeloma, and peritoneal dialysis 3 times a day at home (and abroad – Australia twice, walking holiday in Italy, sailing in the Greek islands, on trains, planes, taxis and on mountainsides) has been very successful over the past 2 years. It would have driven me mad if it had been me, but he just adapted to it and fitted his life around it.

But in the last few months he has been gradually going downhill, with exhaustion, nausea, clumsiness and difficulty in walking, and since New Year he (and I) started to get really depressed and worried about himself, something which rarely happens. Last week it was a relief to find out  that this is unlikely to be caused by the cancer, and a complete x-ray showed that he still has no bone damage from the myeloma.

Today however we learned that it was what had been becoming more likely – his kidney function has deteriorated almost to zero, and the level of dialysis is no longer enough, so that he has become poisoned by the waste products in his blood. It was some comfort to know that all his symptoms can probably be attributed  to this, and also that a return to haemodialysis in hospital 3 times a week should improve things considerably.

This will start on Saturday, at first in the large hospital 25 miles away, but soon hopefully in a small hospital an easy drive from home, where he was before. In some ways it will be a lot less time-consuming, but much less flexible of course, and holidays will have to be planned even more carefully - but still possible. Generally I feel relieved.

So I am just praying that he will start to feel better soon, and return to the near-normal life he’s been leading for the majority of the time since it was all diagnosed (just over 3 years ago)



(((((Sara)))))!!
I am so very relieved they have been able to give you a definite diagnosis of what his problem is, and that there is a positive treatment for it.
I know you are too, and so I am hoping and praying the treatment starting Saturday will bring him back to his more active and feeling better self.

I am sorry that the home dialysis has not worked, but I am praying for a workable solution for both of you!

:-* and hugs.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 24, 2013, 11:33:21 AM
 :-* :-*Sara and Mr M :-* :-*

I am so relieved that disruptive as hospital dialysis will be for Mr M, that the myeloma is no worse and there is something that can be done to restore him to his usual amazing self.

Thinking of you both, love from Mr Janjo and myself.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on January 24, 2013, 11:37:07 AM

(((Sara and Michael)))

Relieved too, in a way, and also hoping that things will improve soon, and that your mood will improve back to optimism.  ;)

Mr S and I send love, positive vibrations and encouraging hugs and think of you constantly & fondly.

Best wishes  :-* :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on January 24, 2013, 11:40:14 AM
(((Sara)))

It is good to know that something can be done for M, and starting as quickly as Saturday.

Hope it helps.  May thoughts and prayers are with you both.
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on January 24, 2013, 11:45:07 AM
((((((Dearest Sara)))))) !!

For you, for both of you I so hope that the hospital dialysis will change things fast, so that Mr M gets energy back very soon.

Thinking about you with love and praying for both of you.

 :-* :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 24, 2013, 11:56:24 AM
Fritz, Kathryn, Linda, Jess, Ingy, Debbie, Mia - thank you all so much for your support and sympathy. As most of you know, it really does help.
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 24, 2013, 12:46:39 PM
Sara, I'm so relieved to hear this!  (((Sara & Mr. M)))
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on January 24, 2013, 01:48:00 PM
Geaux Sara and Mr M!

Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on January 24, 2013, 02:31:53 PM
Sara.....I'm glad the news you and Michael received was something that could be dealt with.
Please keep us updated as much as you can.......' cause we care  :-*  :)
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 24, 2013, 04:17:37 PM
((((Sara and Michael))))   :-* :-* :-*

So relieved that the myeloma is under control still, and that his symptoms can be remedied by increased dialysis.

Hopefully he'll be back to his usual self again soon after the new dialysis starts.

And you'll still be able to travel!!
Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on January 24, 2013, 04:22:53 PM
 Sara - it's really progress to have a diagnosis.  Much worse than not knowing.  And am especially hopeful that things can get somewhat back on track. Thanks for letting us know.  We all are with you, on this.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 25, 2013, 08:34:11 AM
((((Sara and Michael))))   :-* :-* :-*

So relieved that the myeloma is under control still, and that his symptoms can be remedied by increased dialysis.

Hopefully he'll be back to his usual self again soon after the new dialysis starts.

And you'll still be able to travel!!

Thanks, dear Sonja - and yes, fingers crossed to all that!  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 25, 2013, 08:35:26 AM
Sara - it's really progress to have a diagnosis.  Much worse than not knowing.  And am especially hopeful that things can get somewhat back on track. Thanks for letting us know.  We all are with you, on this.

Tony, thank you. And I really do feel the support.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 25, 2013, 08:39:26 AM
I found it difficult to talk yesterday so sorry I didn't acknowledge all your lovely thoughts individually. (((Dear friends))), it means such a lot.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on January 25, 2013, 08:41:15 AM
We cared so much about you yesterday.
Don't worry about us.
That's what we are here for.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 25, 2013, 08:47:05 AM
((((Jess))))
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on January 25, 2013, 09:06:56 AM
Sara....hope things seem a bit more positive today. Thinking of you and Mr M.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 25, 2013, 03:52:47 PM
An update on my husband Michael.

I haven’t posted for a long time as he’s been pretty stable:  Not much change in the myeloma, and peritoneal dialysis 3 times a day at home (and abroad – Australia twice, walking holiday in Italy, sailing in the Greek islands, on trains, planes, taxis and on mountainsides) has been very successful over the past 2 years. It would have driven me mad if it had been me, but he just adapted to it and fitted his life around it.

But in the last few months he has been gradually going downhill, with exhaustion, nausea, clumsiness and difficulty in walking, and since New Year he (and I) started to get really depressed and worried about himself, something which rarely happens. Last week it was a relief to find out  that this is unlikely to be caused by the cancer, and a complete x-ray showed that he still has no bone damage from the myeloma.

Today however we learned that it was what had been becoming more likely – his kidney function has deteriorated almost to zero, and the level of dialysis is no longer enough, so that he has become poisoned by the waste products in his blood. It was some comfort to know that all his symptoms can probably be attributed  to this, and also that a return to haemodialysis in hospital 3 times a week should improve things considerably.

This will start on Saturday, at first in the large hospital 25 miles away, but soon hopefully in a small hospital an easy drive from home, where he was before. In some ways it will be a lot less time-consuming, but much less flexible of course, and holidays will have to be planned even more carefully - but still possible. Generally I feel relieved.

So I am just praying that he will start to feel better soon, and return to the near-normal life he’s been leading for the majority of the time since it was all diagnosed (just over 3 years ago)


(((((Sara and Michael))))))

You have been in my thoughts and prayers... I am glad that the myeloma news is good news and the rest of it seems pretty positive too  Here's to Michael getting his strength and energy back soon after the new dialysis treatments start and to the both of you feeling better and climbing out of the depression quickly. 

Sending love and positive energy to you both.   :-* :-*
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on January 26, 2013, 05:42:19 AM
Good Morning Sara ,

Hope things are going better for you and Mr M. In ny thoughts and prayers.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 26, 2013, 08:59:28 AM
Thank you very much for your thoughts, (((Sue and Sue))) :)

3 hours' dialysis (I'm getting so good at spelling that!) this morning. It went fine, but now he's sleeping it off at home. Nothing till Tuesday now, which seems really strange...
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on January 26, 2013, 01:58:05 PM
Sara, I'm sorry to hear that the home dialysis was no longer effective for Michael, but it is a relief that he can get treatment at the hospital. I hope he is recovering well.
Title: Re: Caring for others with chronic illnesses
Post by: jack on January 26, 2013, 10:44:01 PM
dear sara,

i just wanted to say to you both what a wonderful job you have done thus far at using what you have rather than stewing over what you hadn't got.  that is one of the main lessons i took away from my father's life as he dealt with the depredations of chronic heart disease.  over time it would get worse and his body would get insufficient oxygen to do the active things he knew and enjoyed the best in life, but he always found a way to max out what strength he did have to great advantage, developing sides of himself neither he nor i knew he had.  in time science would provide an advance that gave him more strength and mobility for an indeterminate period, and he would up his performance accordingly, until that gain too petered away.  he lived fully that way 25 years longer than anyone expected given the family history of heart disease, dying at 80.  the first time i heard him sound defeated by a diagnosis, i hitchhiked from florida up to upstate ny, because that simply wasn't his way, and i think my coming back pleased him more than anything else i had ever done.  we had one good day, and the next he went into that death spiral that those at the end of their life enter and died the day after that.  at 80, in his own home, his family and cats all present.

to have managed all the traveling you have done, and to enjoy life fully, and to return in short order again using all that you have and not wasting time regretting what you haven't.  that isn't failure to me, that is successive successes.  my best to you both.  enjoy life.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 27, 2013, 10:59:14 AM
Sara, I'm sorry to hear that the home dialysis was no longer effective for Michael, but it is a relief that he can get treatment at the hospital. I hope he is recovering well.

Thanks, Tony - he's still tired, but says he really is starting to feel different - in a good way. Hope we may manage a trip to Oz in your autumn - and perhaps see you again.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 27, 2013, 11:01:08 AM
Jack, it was so nice to read your post. Thanks - and good to hear about your father (and that he was a cat-lover too ;)).
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on January 29, 2013, 01:16:16 PM
Sara....hope things are still going well for Mr M.....and you. Take care  :-*
Title: Re: Caring for others with chronic illnesses
Post by: bubba on January 29, 2013, 01:45:30 PM
Yes you take care, I had no idea!

((((HUGS))))
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 30, 2013, 03:03:24 AM
Sara....hope things are still going well for Mr M.....and you. Take care  :-*

Thanks, Sue. He had a bad reaction to the dialysis yesterday, but he's quite a bit better today. We'll find out tomorrow how common this is and if it should improve soon (It didn't happen when he had haemodialysis 3 years ago.)
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 30, 2013, 03:03:49 AM
Yes you take care, I had no idea!

((((HUGS))))

Thank you for the hug, Bubba :-*.
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on January 30, 2013, 03:27:59 PM
Thanks, Sue. He had a bad reaction to the dialysis yesterday, but he's quite a bit better today. We'll find out tomorrow how common this is and if it should improve soon (It didn't happen when he had haemodialysis 3 years ago.)

Other Sue here.... I am so sorry to hear about the bad reaction, but glad to khow he's feeling better today.  I do hope the trend continues and that it's just a reaction to the stronger dialysis after having been on the less effective treatments recently.

Thinking of you both (((((Sara and M))))
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on January 31, 2013, 04:49:54 PM
Thanks, Sue. He had a bad reaction to the dialysis yesterday, but he's quite a bit better today. We'll find out tomorrow how common this is and if it should improve soon (It didn't happen when he had haemodialysis 3 years ago.)

Hi Sara,
Did you find out what caused the bad reaction to Mr M's dialysis yet ?? Do hope things will settle down for him....and you. It must be a big worry. In my thoughts and prayers

                                                         ((((((Sara & Mr  M))))))
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on February 01, 2013, 01:48:46 AM
Hi Sara,
Did you find out what caused the bad reaction to Mr M's dialysis yet ?? Do hope things will settle down for him....and you. It must be a big worry. In my thoughts and prayers

                                                         ((((((Sara & Mr  M))))))

Apparently the reaction (sickness, faintness and headache) is quite common. It's such an invasion the body can take time to adjust - up to a month. So it's a relief to know it's normal (they had mentioned headaches), and yesterday it wasn't so severe and he ate a normal meal in the evening. Thanks (((both Sues))) :)
Title: Re: Caring for others with chronic illnesses
Post by: janjo on February 01, 2013, 03:46:33 PM
Glad to hear that, Sara.I have been up in Cambridge with daughter Caroline who is due to give birth any day now, but I have been keeping a forum eye by using my Kindle, so I had stopped worrying about Mr M just a little. The Kindle has an on screen keyboard, which I hate as it doesn't work very well with a full set of gel nails. :D  I can use it, but it is  very slow so it is nice to be home however temporarily and to have my laptop to speak to everyone properly.
I may have to shoot back up to Cambridge at any time, so I am doing my washing and preparing to return as soon as I get the call.
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on February 01, 2013, 06:27:39 PM
                                                                 ^^^^
Hi Sara,

Good news to know that the reaction to this type of dialysis is sometimes expected. Just a case of waiting it out now.
Hope the reaction passes quickly. Take care....both of you . :-*
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 29, 2013, 03:38:32 AM
It's been some time since I've posted about Michael's health. At least the symptoms of uraemic poisoning, headache and nausea, have pretty much gone, but the weakness is no better and he is only able to walk slowly for 5 minutes or so, and has no energy for most day to day activities. He has lost quite a lot of weight, especially muscle, and is fairly anaemic.  There have been various setbacks in the last few months, including a small stroke, all of which he has pretty much recovered from, but which haven't helped. He is up and about but tends to fall asleep frequently during the day, and feels the cold badly. I think everyone hoped the the dialysis would achieve more improvement than it has.

Apart from the anaemia, none of this is particularly typical of multiple myeloma (a bone-marrow cancer), the root cause of his kidney failure, and the levels of the cancer are not rising at the moment, but the haematologist feels that the time has come for more chemotherapy and steroids. This will be starting next week, in tablet form. The side-effects of lenalidamide shouldn't be too severe, but will tend to exacerbate what he's feeling at the moment, at least until it starts to take effect. He'll be monitored regularly and assessed after 4 months.

It was a relief, because something had to be done. I just wish they could be more definite about the reasons for him feeling bad – it would somehow help, for me at any rate.

Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on May 29, 2013, 03:42:43 AM
Keeping my fingers crossed that the chemo and steroids will show a quick improvement for him!
Title: Re: Caring for others with chronic illnesses
Post by: Miaisland on May 29, 2013, 03:50:51 AM
Thank you for the update dearest (((((((Sara)))))))) !!

I also hope for quick improvements with the new treatments.

Keeping Michael and you both in my thoughts and prayers.

Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on May 29, 2013, 02:10:11 PM
 Thanks for letting us know Sara.  I guess it's good news that they will be resuming treatments, as that holds out hope for some improvement.
 But the appointments and so on will be stressful.  I just wish you well, so very much, and hope you stay strong !
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on May 29, 2013, 02:15:28 PM
Keeping both of you in my prayers, and of the whole choir too, Sara.

Title: Re: Caring for others with chronic illnesses
Post by: morrobay on May 29, 2013, 02:18:21 PM
Praying for all the best for Michael, Sara.  Don't forget to take care of yourself, too....
Title: Re: Caring for others with chronic illnesses
Post by: lawgoddess on May 29, 2013, 02:29:54 PM
Thank you for the update, Sara.

Thinking of both of you.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on May 29, 2013, 03:30:54 PM
Thanks so much for letting us know how Michael is. And as you say, at least they are doing something, even though they are not sure.

Just know that your family here is thinking and praying for you both and as Nancy said, please take care of yourself as well.
Title: Re: Caring for others with chronic illnesses
Post by: janjo on May 29, 2013, 04:08:04 PM
Thinking of you both, and remembering you in my prayers.

We are back from the USA and the jet lag is receding so I will be in touch very soon.
xxxxxxxxx
Title: Re: Caring for others with chronic illnesses
Post by: suelyblu on May 29, 2013, 06:23:41 PM
(((Sara)))......I had no idea that Michael was so poorly. I just thought "no news.....was good news ".....apparently not.  :(

I really hope he starts to feel better soon ....and you take care too.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on May 29, 2013, 07:07:34 PM
Thinking of you both, Sara, and hoping that Michael starts to feel better soon.
Title: Re: Caring for others with chronic illnesses
Post by: roby on May 30, 2013, 12:31:30 AM
He'll be monitored regularly and assessed after 4 months.

I just wish they could be more definite about the reasons for him feeling bad – it would somehow help, for me at any rate.

Being monitored is so important.  I do understand you about the reasons, I always need a reason but sometimes is not available.

All my love to you and M.   :-*
Title: Re: Caring for others with chronic illnesses
Post by: Trigger Hippie on May 30, 2013, 06:19:06 AM
I so understand the problems with not knowing.

Thinking of you both.

N
x
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 30, 2013, 07:23:54 AM
Dear Chuck, Mia, Tony, Fritz, Nancy, Barbara, Linda, Jess, Sue, Debbie, Roby and Nick - sorry about the list, but I do so much appreciate each and every thought. I know some people might feel that a forum like this is not a place for private worries, and I can understand that too, but for me it helps so much to have the extra support.

I don't know how much improvement we can hope for - both conditions are incurable, though often manageable - but I AM still hopeful.

And Fritz - I love to have the prayers of your choir. :)
Title: Re: Caring for others with chronic illnesses
Post by: morrobay on May 30, 2013, 11:34:37 AM
I think this is the perfect place to be able to come for support....you have it here...
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on May 30, 2013, 11:53:38 AM
Thank you, Nancy - I really do feel it :)
Title: Re: Caring for others with chronic illnesses
Post by: tfferg on May 30, 2013, 05:00:25 PM
Sara, I do hope that the treatment will be quickly effective and that your needs are met too. You have been and will remain in my thoughts.
Title: Re: Caring for others with chronic illnesses
Post by: jack on June 01, 2013, 07:32:54 PM
sara, i am so sorry to hear of your husband's decline.  in honesty, it doesn't sound good.  i will pray that you both have that peace that passeth understanding that fritz would mention.  it is a good place to be at times so challenging.

(http://1.bp.blogspot.com/-aPS3ToGQJfk/UFnNCo_C3xI/AAAAAAAACFA/d8PgmTnOWIQ/s1600/Serenity+Prayer+-+101+Blog..jpg)
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on June 02, 2013, 04:26:55 AM
Thank you, Jack, and those are good words. I am very worried, but haven't given up hope for some improvement.
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on June 02, 2013, 04:28:26 AM
Sara, I do hope that the treatment will be quickly effective and that your needs are met too. You have been and will remain in my thoughts.

Good to hear from you, Tony, and thanks. I'm sorry I didn't get my Australian trip this year - it would be nice to see you both again.
Title: Re: Caring for others with chronic illnesses
Post by: Sason on June 02, 2013, 05:06:30 AM
Sara, you and Michael are in my thoughts. Good wishes for some improvement with the new treatment. I'm glad you're feeling some hope.

And, as someone mentioned, don't forget to take care of yourself too, in all this. It's important, otherwise you won't be able to be there for Michael either.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: MaineGirl on July 18, 2013, 03:13:22 PM
It's been some time since I've posted about Michael's health. At least the symptoms of uraemic poisoning, headache and nausea, have pretty much gone, but the weakness is no better and he is only able to walk slowly for 5 minutes or so, and has no energy for most day to day activities. He has lost quite a lot of weight, especially muscle, and is fairly anaemic.  There have been various setbacks in the last few months, including a small stroke, all of which he has pretty much recovered from, but which haven't helped. He is up and about but tends to fall asleep frequently during the day, and feels the cold badly. I think everyone hoped the the dialysis would achieve more improvement than it has.

Apart from the anaemia, none of this is particularly typical of multiple myeloma (a bone-marrow cancer), the root cause of his kidney failure, and the levels of the cancer are not rising at the moment, but the haematologist feels that the time has come for more chemotherapy and steroids. This will be starting next week, in tablet form. The side-effects of lenalidamide shouldn't be too severe, but will tend to exacerbate what he's feeling at the moment, at least until it starts to take effect. He'll be monitored regularly and assessed after 4 months.

It was a relief, because something had to be done. I just wish they could be more definite about the reasons for him feeling bad – it would somehow help, for me at any rate.



(((((((((Sara and Michael)))))))))))

I know this is late in reply, but you are both very much in my thoughts.  Healing thoughts and prayers for Michael... and for you. 
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 17, 2014, 03:33:37 PM
This New Year hasn't been that all great.I've had nothing but bad news since December.

My cousin who is only 55 yrs old was diagnosed with liver cancer.He kept it a secret from us all for a few months.Especially his parents who are elderly of course and battling their own illnesses. My uncle has signs of Parkinson's and my aunt was just diagnosed with stage 2 Alzheimer's. My other cousin,his sister, had to move back home from Florida to Chicago to stay with parents when we all found out about her brother.She had asked us to visit them during Christmas because it will probably be the last Christmas together. We went...it was terribly sad. He looked horrible.Hardly said a word,was just looking around and taking it all in.I was wondering what was he thinking. Absorbing it all,our laughter,our tears! As we said our goodbyes he hugged me and said I love you guys.The only words I heard him say all night. I cried all the way home.

He is in ICU now. Having to go through dialysis.His organs are shutting down. Now we wait

My aunt and uncle?  They visit my parents every other Tuesday.It's a matter of time they won't be able to drive.My mom can no longer move around either. Shit,it's so tough to get old. To get sick.

I continue to pray for you all. For strength and peace in your hearts!

Nellie
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on January 17, 2014, 08:44:24 PM
Damn Nellie, I'm sorry to hear about all this!   Sending your family strength and love.
Title: Re: Caring for others with chronic illnesses
Post by: Tony_ on January 17, 2014, 09:16:08 PM
  Nellie, from another Brokie, all my hopes you and your family see better, as much as possible, after so much gone painful. It's beautiful that you ended your post by saying you kept us all in your prayers. I'll keep you in my own, as well.....
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on January 18, 2014, 03:27:50 AM
Nellie, I'm so sorry for all the sadness and worry in your life at the moment.  :-*
Title: Re: Caring for others with chronic illnesses
Post by: jack on January 18, 2014, 03:42:29 AM
nellie, i remember my surprise when i found myself unburdening myself as i found myself enmeshed in my mothers dementia, and my limited abilities to cope and try to advance the situation.  i had no family, and friends not in the situation were in fact useless because most of them were much younger and simply hadn't experienced that kind of pressure yet, or if they had, they had spouses and family to share the burden.  strangers, and folks here on the forum showed empathy, gave encouragement, reminded me that in time the situation would change.  i did the best i could, got my mother in care, and got her a legal guardian who had office staff and the knowledge necessary to properly place her and deal with the financials.

of course, no sooner than i had breathed my first sigh, ready to resume my own life, than my health plummeted, and that plus a drunk motorcyclist, put me in the hospital and long term arthritis and back injury removed my ability to walk without assistance.

there is of course a happy ending.  i still need a walker for anything longer than a walk to the bathroom, but the fact is i AM able to take care of myself, and despite my meager finances, i lucky blip in those finances allowed me to move out of southwest florida and the social environment that was strangling the life out of me, and plop me down, alone as usual, on the island of oahu, the city of honolulu, and a capricious greater power even provided an unexpected significant other, quite literally out of the blue (hawaii).

i believe strongly the death is just another stage in the cycle of life, and what matters is not that you are going to die, but that you have lived as fully as possible.  that is my wish for everyone, to live fully and love deeply.
   
Title: Re: Caring for others with chronic illnesses
Post by: Sason on January 18, 2014, 06:55:41 AM
So sorry for all the sadness in your family, Nellie.
Title: Re: Caring for others with chronic illnesses
Post by: ingmarnicebbmt on January 18, 2014, 07:13:44 AM

(((Nellita)))

BIG HUGS

 :-*
Title: Re: Caring for others with chronic illnesses
Post by: dejavu on January 18, 2014, 03:59:05 PM
Very sorry to hear of the troubles in your family, Nellie.  I'll be thinking of you and praying for all of you.
Title: Re: Caring for others with chronic illnesses
Post by: mcnell1120 on January 22, 2014, 02:19:52 PM
Amen Jack
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on April 16, 2016, 06:06:20 PM
I would like to ask for your thoughts and prayers for my friend Michael, whom I have known since grade school and who lives in Houston. His partner, Joel, who thought he had a cold the week between Christmas and New Year, went to the doctor in early January. They diagnosed bronchitis, and gave him antibiotics and a steroid.

It got better, but when he went in February for his yearly check up, had a Cat Scan, they discovered a spot in his lower left lung. He was referred to Pulmonologist, who took a biopsy. It was discovered to be cancerous, but they did not know what type. He was referred to an Oncologist, who had an MRI done and it was discovered that there was a lesion in his brain as well.

He had opted not to have any treatment on the lung cancer, as he had nursed his previous partner of 38 years through 2 years of cancer chemotherapy and decided that is not what he wanted. They did however, decide to do radiation therapy on the brain lesion, as it was in the part of the brain that would affect his sight.

The type of cancer that was discovered is so rare and aggressive, there is no treatment or chemotherapy protocol for it. They had given him 6-12 months.

Last Sunday he could not breathe, so after going to the Oncologist on Tuesday, they determined he needed to be on hospice care. He is now on 24 hr care and Michael told me today he is relatively unresponsive. Michael has been calling me everyday to update me and to just talk. I have met Joel several times and am so very sad for the both of them. Michael is 62, and Joel 70.

They were together about 8 years, and decided to amicably separate about 4 years ago, but kept in contact. About 6 months ago they decided to live together again for financial reasons and to take care of each other as they have gotten older. Michael has a mild form of MS.

Please keep them both in your thoughts and prayers. Thanks.
Title: Re: Caring for others with chronic illnesses
Post by: fritzkep on April 16, 2016, 06:09:09 PM
Definitely, Linda.

Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on April 16, 2016, 07:39:17 PM
thoughts, prayers and good vibes going out to Mike  and Joel.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on April 16, 2016, 07:46:18 PM
Thanks, Fritz and Chuck. ♥
Title: Re: Caring for others with chronic illnesses
Post by: Sara B on April 17, 2016, 02:30:46 AM
I'm so sorry, Linda - I know what an important friend Michael is to you. Thinking of Joel, Michael and of you.
Title: Re: Caring for others with chronic illnesses
Post by: killersmom on April 17, 2016, 12:36:45 PM
Thanks Sara. I love Michael very much and like Joel a lot as well. I think the saddest thing is that they thought they had a little more time. :'(
Title: Re: Caring for others with chronic illnesses
Post by: CellarDweller115 on December 28, 2016, 05:39:05 PM

(http://i327.photobucket.com/albums/k463/dcfmod/were%20moving.jpg)

Hello members!!!!  The Admin/Mod/Tech team is coming to you with news for the new year.

When this forum was originally founded, it was under the URL we all know, www.DaveCullen.com, however, it was often referred to as the "Ultimate Brokeback Forum".  Dave's website had a link to the forum, and the two entities were joined as one.

For a host of technical reasons beyond Dave’s technical ability, he needs to turn his website over to a service that can handle much of the work—and it can’t support the massive forum database. Dave really wants the forum to proceed, so the solution is simple: just split Dave’s personal pages and the forum to two separate web addresses. Everything else remains the same.

To continue to follow Dave Cullen, you can use the existing address,   www.DaveCullen.com .

To access the Ultimate Brokeback Forum, you will need to bookmark this new address:   https://www.UltimateBrokebackForum.com/forum.

We expect this change to take place within a week's time, and there should be no major disruption to the forum.   While the UBF will no longer be linked to DCF,  Dave Cullen will retain his ownership of both sites. 

Please continue to watch the threads/newsbox for further updates!  We will attempt to give you all 24 hours notice before the change takes place.  However, you should make note of the new address now.  If you try to log in at the old address and you are unable to, try to use the new address.  Thanks for your continued participation in this community!