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For future reference…From Wikipedia,: One way to think about basic ADLs is that they are the things many people do when they get up in the morning and get ready to go out of the house: get out of bed, go to the toilet, bathe, dress, groom and eat.
One ironic way to remember them is DEATH: dressing/bathing, eating, ambulating (walking), toileting, hygiene.
Instrumental activities of daily living (IADLs) are not necessary for fundamental functioning, but they let an individual live independently in a community.
A useful mnemonic is SHAFT: shopping, housekeeping, accounting, food preparation/meds, telephone/transportation.
On another note, I'm also open to buying in to a continuing care community. I know of a couple of people who've done that…and have been pleased.
My mother moved into an independent living facility because she had to. That is, she could no longer prepare food reliably, so something had to give - some change needed to take place. That change was meals provided in the dining hall, and the weekly maid service was a big plus too.
However, one interesting thing I discovered after my mother moved into that facility (which was a good one and which she liked) is that there were also people there who had chosen to move there before they had to. They still had their cars, still drove, etc. I can imagine they were also people who did nto particularly enjoy cooking. It was like they still lived in their apartments or their homes, but with meal service and maid service added.
I thought to myself, "What a rational decision on their part; they don't view being there as an admission of being unable to function in life because they could indeed still function just fine." Whereas my mother had resisted the move for a long time because of its symbolic meaning (i.e., she was in denial of her decline and was fighting against admitting it).
It can't have been early onset Alzheimer's because she was almost 79 when she showed her first symptoms. By definition, early onset Alzheimer's is diagnosed before age 65...
Yes, I would take a test if there were an easily identifiable genetic marker for the disease. I'm terrified of going through what my mother went through. The fear and the disorientation of watching one's powers slip away until one is completely helpless. Not knowing who people are or what is happening.
If I carried the gene and I felt the symptoms start, that would be it for me. I would take action of my own in the earlier stages, before the disease progressed too far and I didn't understand what was happening to me.
I think my children would understand because they saw what their grandmother went through.
I used the phrase "early onset" because it seems to be a more acute disease than "late onset". And your mother had a relatively acute case. Note that IANAD - so take what I say about this with big grains of salt .
If I were interested in genetic testing - I would consult with my primary care doctor - and get her opinion. Here is some information you might want to read before talking with your doctor:
My mother moved into an independent living facility because she had to. That is, she could no longer prepare food reliably, so something had to give - some change needed to take place. That change was meals provided in the dining hall, and the weekly maid service was a big plus too.
However, one interesting thing I discovered after my mother moved into that facility (which was a good one and which she liked) is that there were also people there who had chosen to move there before they had to. They still had their cars, still drove, etc. I can imagine they were also people who did nto particularly enjoy cooking. It was like they still lived in their apartments or their homes, but with meal service and maid service added.
I thought to myself, "What a rational decision on their part; they don't view being there as an admission of being unable to function in life because they could indeed still function just fine." Whereas my mother had resisted the move for a long time because of its symbolic meaning (i.e., she was in denial of her decline and was fighting against admitting it).
Yes, very much so by intent especially at the nicer ones. We expect to be there prior to any need and use that the same as we do our current or even another home prior to. There are levels of comfort and services at some places and the amenities while with a price are great. It is truly independent living and that can be independent of home care and maintenance even if you own. Going on your own can give you choices you otherwise might not have at a later date. We were told that about LTC insurance and it was great advice.
What about people who are really alone? Those who don't have close relatives or they live too far away? If you live in a senior condo, with minimal facilities to make things easier for very old people, such as metal bars in the bathroom to hold on to, elevator so you don't have to use stairs, etc., what happens when you're sick in the hospital and when you're recovering you want to go home but the doctor worries that you shouldn't be alone? Could that become a disaster because doctors have the power to send old people to assisted living or nursing homes, so you might never be able to go home, even if you would actually do ok there? Or what if you need a nursing home while recovering from an illness or accident, but while you're there, a social worker sells your condo to pay for your care, so you can never go home again, even if you recover enough to do fine there?
Doctors - social workers and the like generally can't make decisions like this on their own without courts/government agencies (like protective services) getting involved. In general - if a person is legally incompetent - a court will appoint a guardian of the person and/or property to handle things.
Note that anyone can appoint someone he/she trusts - as opposed to taking one's chances with a court - to take care of things in the future if/when the need arises. The exact laws/rules/forms will vary from state to state (in Florida - we have something called a "Pre-Need Guardian" form which you execute when you're competent and file in the court where you live - we have other forms too - like "Health Care Surrogate" forms). I strongly suggest that everyone - especially seniors - should consult with an attorney who specializes in these things and get his/her ducks in a row when it comes to planning for whatever may happen down the road. Robyn
...However, one interesting thing I discovered after my mother moved into that facility (which was a good one and which she liked) is that there were also people there who had chosen to move there before they had to. They still had their cars, still drove, etc. I can imagine they were also people who did nto particularly enjoy cooking. It was like they still lived in their apartments or their homes, but with meal service and maid service added.
I thought to myself, "What a rational decision on their part; they don't view being there as an admission of being unable to function in life because they could indeed still function just fine." Whereas my mother had resisted the move for a long time because of its symbolic meaning (i.e., she was in denial of her decline and was fighting against admitting it).
My father is in the category you mention. He moved into a senior independent living place when he was 87 - after my mother died and he sold his house. He still has his car (at age 97!) - but doesn't drive that much these days. And he also still prepares some of his own meals (I gave him a Griddler as a housewarming present when he moved in - and he uses it a lot). Robyn
I used the phrase "early onset" because it seems to be a more acute disease than "late onset". And your mother had a relatively acute case. Note that IANAD - so take what I say about this with big grains of salt .
"Early onset" just means you were younger when you first started showing dementia symptoms. It says nothing at all about how rapidly the person declines.
The thing about early onset is that you can still do physical things because you're younger. The wife of a friend of mine has it. She has no problem skiing but we have to watch her carefully because she'll end up at the liftline not knowing where she is.
Doctors - social workers and the like generally can't make decisions like this on their own without courts/government agencies (like protective services) getting involved. In general - if a person is legally incompetent - a court will appoint a guardian of the person and/or property to handle things.
Note that anyone can appoint someone he/she trusts - as opposed to taking one's chances with a court - to take care of things in the future if/when the need arises. The exact laws/rules/forms will vary from state to state (in Florida - we have something called a "Pre-Need Guardian" form which you execute when you're competent and file in the court where you live - we have other forms too - like "Health Care Surrogate" forms). I strongly suggest that everyone - especially seniors - should consult with an attorney who specializes in these things and get his/her ducks in a row when it comes to planning for whatever may happen down the road. Robyn
A doctor or hospital can't discharge a patient with dementia. They'd be sued to oblivion if something happened. That's when social workers step in and get a judge to appoint a legal guardian.
There was a case locally like that where an assisted living place punted a resident to the hospital for non-payment. The nasty tactics for-profit corporations use to evict people. The guy's ex-wife was power of attorney and had embezzled all his assets. She's now in jail and he has a court appointed guardian. I'm sure the guy had a viable plan initially. You never really know with "appoint someone they trust".
A doctor or hospital can't discharge a patient with dementia. They'd be sued to oblivion if something happened. That's when social workers step in and get a judge to appoint a legal guardian.
There was a case locally like that where an assisted living place punted a resident to the hospital for non-payment. The nasty tactics for-profit corporations use to evict people. The guy's ex-wife was power of attorney and had embezzled all his assets. She's now in jail and he has a court appointed guardian. I'm sure the guy had a viable plan initially. You never really know with "appoint someone they trust".
I know of a case and the nursing home had not been paid for five months before it was discovered and the taxes on the family home not paid and they may lose that and family still lives there etc etc. Between LTC and SS or pensions or just LTC we can handle the cash flow and that should not be a worry plus my son who is executor would be in deeeeep professional trouble as would his wife if they did anything at all wrong.
"Early onset" just means you were younger when you first started showing dementia symptoms. It says nothing at all about how rapidly the person declines.
My understanding is that studies have show that "Early onset" Alzheimer's is actually more aggressive and progresses more quickly than Alzheimer's diagnosed later in life. Doctors don't know why that is exactly.
I've thought that cruel and some what ironic. That the earlier you get it, the quicker it takes over.
But now I don't' know. Which is "worse" (as if any of this is to be compared)?…. to be diagnosed at 46 and dead by 51, or diagnosed at 80 and still lingering as a human shell at 90?
((The documentaries "Not Fade Away" and "To Not Fade Away" profile the family of an early onset patient. One thing I'd never thought of….that they ran into was that…many services for AD patients are for seniors. They had a hard time finding a "senior day care" center that would take their loved one, and she didn't qualify for some "senior" services (even though she might have needed that kind of help) because she was only in her 40s.))
Kind of like on the caregiving board where most people talk about taking care of seniors or the elderly…..and sometimes parents taking care of disabled children feel…where's the help for them? They're caregivers, too.
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