Caring for others with chronic illnesses

[jack]

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.

[Sason]

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.

[Sandy]

Hi,

I did a quick internet search and came up with the following list.

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

[Sason]

^^^^^^^^^^^^^

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.

[Sandy]

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.

[jack]

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". 

[jack]

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.

[Sandy]

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.

[jack]

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.

[Sason]

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.

[fritzkep]

All the best, Sonja. And be thankful that you don't have to navigate your way through long-term health care in this country.

[Sara B]

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.

[Sason]

Thank you, Fritz and Sara.

I have phonecalls to make tomorrow, to find out what is available here in my town.

[dahlia]

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.

[Sason]

Thanks Daniela.