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Author Topic: Caring for others with chronic illnesses  (Read 236782 times)

Offline jack

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Re: Caring for others with chronic illnesses
« Reply #600 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.   
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Offline Sason

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Re: Caring for others with chronic illnesses
« Reply #601 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.
« Last Edit: April 24, 2009, 10:38:18 AM by Sason »

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Offline Tigs

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Re: Caring for others with chronic illnesses
« Reply #602 on: April 24, 2009, 12:05:23 PM »
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Offline lovelyamazing

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Re: Caring for others with chronic illnesses
« Reply #603 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.
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Offline Sandy

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Re: Caring for others with chronic illnesses
« Reply #604 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?

Offline lovelyamazing

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Re: Caring for others with chronic illnesses
« Reply #605 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!
« Last Edit: April 25, 2009, 12:05:24 AM by lovelyamazing »
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Offline Sandy

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Re: Caring for others with chronic illnesses
« Reply #606 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.

Offline lovelyamazing

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Re: Caring for others with chronic illnesses
« Reply #607 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.
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Offline lovelyamazing

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Re: Caring for others with chronic illnesses
« Reply #608 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.
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Offline Miaisland

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Re: Caring for others with chronic illnesses
« Reply #609 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.
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Offline jack

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Re: Caring for others with chronic illnesses
« Reply #610 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.   
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Offline Miaisland

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Re: Caring for others with chronic illnesses
« Reply #611 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?
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Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #612 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.

Offline Miaisland

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Re: Caring for others with chronic illnesses
« Reply #613 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))))))!!!

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Offline janjo

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Re: Caring for others with chronic illnesses
« Reply #614 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.




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