What would you do if you had alzheimer's disease?

[imnxpat]

If you were in the the early stages of alhzeimer's or dementia and still alert enough to know that these conditions are incurable and irreversible, would you choose to end your life immediately or die slowly instead as the disease progresses?

[ladelfina]

As an adult, I found out my maternal grandmother had hanged herself in her basement.
Yankee (stoical and no-nonsense), lived alone, and according to my mom knew her mental faculties were declining. I was about 8 at the time.

Dunno if I could go the hanging route. Firearm too messy and traumatic to others. I'd probably like to amass enough of some kind of drug just to have a simple choice, even if I didn't exercise it. I would probably set myself a future date (with a memo! ) depending on the progression and try to get my affairs in order and see the people and do whatever 'last things' I could do.

[chinaco]

I do not think I would not choose to end my life. Keep in mind that different people progress through the stages (faster or slower).

I would get my affairs in order and plan for care through the various stages of the disease. Plus, on medication and therapy to try to prolong the good years.

I watched the progression of the disease in a parent. Some people get violent because of the confusion (my parent did not). Some hallucinate (my parent did)... lose grip on reality

Stages of Alzheimer's

IMHO - Assuming we all die from something! Alzheimers (especially in later stages) is worse on the care giver than the victim of it. Medication can be used through stages to make the person comfortable. It appeared to me that in later stages the person is a shell that is not very aware of anything.

Stage 5 is more difficult and it starts to burden the care giver. Some people just put the person in a nursing home... this is sad. IMHO it is too early. If the victim has money, spend it on home care to give respite to the main care giver. Consider a nursing home after their funds are gone. I have not seen a nursing home give the same level of care that in-home care will provide.

Stage 6 is where is really gets difficult for a care giver and is the time when people are often put in a nursing home. However, if you have funds, you would be better off keeping the person at home and hire a care giver to come into the home. The Alzheimer's patient will get better care than in a nursing home.

Stage 7 is definitely time for a Nursing home, Hospice/In-home care. They are often in a wheel-chair or bed. This is the end.

[donheff]

From my healthy perspective today I would plan to do myself in before I became a burden on my family. In the event, who knows. I suspect I would delay while I was still enjoying life. But that might last until I no longer remembered my original intent. At that point it would be too late and I would ultimately spiral down to become the burden I don't want to be. The same sort of change that leaves you unable to communicate -- or even to know your situation -- can happen with a variety of diseases or traumas.Thats why I advocate ethical assisted suicide with clear advance directives. I am not holding my breath on our society agreeing with that proposal so so I hope I will have enough presence of mind to act while I can.

[brewer12345]

As an observant Catholic, I don't feel I have the snuff option open to me. Not sure I would take it even if I felt differently.

[Rich_by_the_Bay]

There's lots of potential meaningful life - sometimes for years or decades - in the early and middle stages of this disease, for both yourself and your loved ones. Some people experience the full range of human interaction despite their memory loss. Not everyone, but for many.

In the later stages you'll likely lose the ability or judgment to consider more drastic measures.

It's just not usually as "clean" a sequence as implied in the OP.

[Dawg52]

A cousin of mine was diagnosed last year with it. Not sure what meds he is taking but I understand he is doing great so far. He lives in another state so haven't seen him lately. Hopefully better drugs are coming which will slow this thing down even more.

I couldn't pull the plug on myself. Just don't have what it takes.

[donheff]

Quote:

Originally Posted by Rich_in_Tampa There's lots of potential meaningful life - sometimes for years or decades - in the early and middle stages of this disease, for both yourself and your loved ones. Some people experience the full range of human interaction despite their memory loss. Not everyone, but for many. In the later stages you'll likely lose the ability or judgment to consider more drastic measures. It's just not usually as "clean" a sequence as implied in the OP.

Yeah, I suspect my "solution" is just wishful thinking. I would want to live while the living was good so I would end up lacking in judgement. Per your descriptions of the "ifs" doctors face on another thread, advance directives probably could never be clear enough to be dispositive. No easy way out. Lets hope exponential change in medicine will provide a fix in twenty years.

[donheff]

In another instance of sychronicity, we can get the "definitive" answer tonight on ABC. On Boston Legal, Shirley asks Alan to argue a case to do in her father who has Alzheimer's.

[GoodSense]

DH's grandmother had Alzheimers. A few years into it, she couldn't recognize anyone, and was staying at a nursing home. Her husband went to see her twice everyday and fed her cookies. He told me that he went to see her more for himself, since she apparently didn't recognize him anymore. He loved her so much that it was a joy to just watch her eat cookies.

For 1 week, he went on vacation to visit their daughter out of town, and when he returned, the nursing home was so relieved because she had stopped eating when he wasn't showing up everyday. Although there was no trace of recognition on her face when she sees him, she must know that he was important to her. Not seeing him everyday made her decide to stop eating. As soon as he came back, she was back to normal again.

About 10 years into the disease, she passed away peacefully.

This has totally changed my view on the disease. I don't think the sick are necessarily burdens to those who are healthy, and those with the illness could have more brain activity than we know. Who is to judge?

[CyclingInvestor]

Quote:

Originally Posted by imnxpat What would you do if you had alzheimer's disease?

dress even worse than I do now

turn in my bike for one of those big tricycles

sell my stocks, buy annuities

[grumpy]

I doubt that I would have the courage to end my own life while I still had the mental capacity to make the decision. I hope if I ever get to that point that the laws would allow me to delegate that decision to my wife or child. They know my strong feelings on this subject and I would trust them to make the decision to carry out euthanasia, if the law would allow it.

Grumpy

[Jarhead*]

Quote:

Originally Posted by Rich_in_Tampa There's lots of potential meaningful life - sometimes for years or decades - in the early and middle stages of this disease, for both yourself and your loved ones. Some people experience the full range of human interaction despite their memory loss. Not everyone, but for many.

Woody Allen covered this possibility in a stand-up routine he did a few years back.

After methodically going over his will, the last paragraph was:

"No matter how much I whine, and explain that it's not worth it, and in the doctors opinion, I will never ever recover, I want you to promise me that you will never, ever take me off life support.

[W2R]

I would never choose to end my life. I just don't believe that would ever be the best option for me.

Given that, I don't know what else I would do. There are a lot of tough decisions related to care, income, and power of attorney. What a dreadful situation to have to cope with.

[Khan]

Quote:

Originally Posted by Want2retire I would never choose to end my life. I just don't believe that would ever be the best option for me. Given that, I don't know what else I would do. There are a lot of tough decisions related to care, income, and power of attorney. What a dreadful situation to have to cope with.

And a situation that more and more folks are going to have to cope with, either Baby Boomers or their parents.

Will we be allowed to stop eating, or will some intrusive so-and-so insist that granny must 'live' and be subjected to feeding tubes/catheters/diapers... for her 'own good'?

[W2R]

Quote:

Originally Posted by Khan And a situation that more and more folks are going to have to cope with, either Baby Boomers or their parents. Will we be allowed to stop eating, or will some intrusive so-and-so insist that granny must 'live' and be subjected to feeding tubes/catheters/diapers... for her 'own good'?

Well, now that is a bit much even for me! I agree - - I would not want to be forced to eat. I think there is something (is it a "living will"?) that my parents both signed, that would prevent anyone from exerting heroic measures if there was no possibility of recovering. I would look into that, too.

I don't regard that as suicide, personally. Now, shooting my brains out I would regard as suicide.

[Moemg]

Besides a living will you need a power of attorney for health care decisions . It's a good idea to have a very strong advocate to see that your wishes are carried out .

Living wills and advance directives: Tools for medical wishes - MayoClinic.com

[lazygood4nothinbum]

i was part time caregiver for my grandfather and, 20 years later, full time guardian for my mother, both of whom suffered alzheimer's disease. i have no children to burden should the need arise. the only other known family member to suffer was my grandfather's mother, so seems it came down just that one branch of my family tree, which i hope lessens my chance of being afflicted as even on that one branch no other brother or sister had ad.

compared to many cases i've witnessed, read about & heard of, both grandpa and mom, especially mom, seemed relatively alert to the end though they lost speech and mom eventually lost control of most of her body. (if you raised her arm to put on her sweater her arm would stay raised in the air unless you put it down again.) but she was able to answer questions simply, even 6 months before the end. once, after she'd lost the ability to construct sentences and verbalized only garble, she put a sentence together which expressed such sympathy for me that it puts me to tears when i just think of it today.

as my mother had much resource--house, money, insurance, loving children who were capable enough to study & handle the disease and who had the resources themselves including the time and who lived close enough to be so helpful--we were able to construct for her the illusion of independence for years beyond the norm. but even in stage five, it is not always possible or advisable to keep someone at home. in mom's case, though never before a violent person and not really violent during alzheimer's, she did become physical with the home care providers, even throwing things and forceably shoving them out of her house. (the violence stopped once we had her in a proper facility.)

mom became unmanageable for us in the house and so that became a safety issue. safety first is the rule. it was only after we placed mom in a nursing home that we truly realized the chance we had taken by not placing her earlier. once you take a person out of context you can see a lot more clearly the deficits and the dangers. fortunately, we had both the funds and the wherewithall to place mom in a fabulous facility where she received excellent care, though we visited often to assure that.

i do not believe that home care is adequate for alzheimer's victims. and i have heard too many stories of them getting away from the house and wandering the streets. some are finally found dead. for me, and as we were advised by the alzheimer's association, patients required locked facilities, not home care.

as i will not have someone like me to burden, i do consider suicide as an option to suffering alzheimer's disease. i don't see suicide as a moral issue, but rather as a psychological concern in some cases and as a matter of personal choice in others. i don't believe that suicide is spiritually penalized; yet every religion will tell you so. even in dream yoga it is supposedly forbidden to enter what is known as the clear light of death, though those who do are said to have died by the kiss of god. hey, i was just out for a good time.

in any case, it is so personal, that it is outrageous that suicide is against the law. for me, suicide, when well contemplated and understood by a healthy mind and utilized in a productive way, is the stamp on the statement that says: this is my life!

suicide is no stranger to me, having a bit of family history including: greatgrandmother (hanging), grandmother (pills & gas), at least one cousin (don't know method) & the latest was step-father (pills, gas, gun).

i agree with don that there should be available advanced suicidal directives but while i think they should be available and legal, i do not believe they should be, or should even be expected to be, binding. as i've mentioned before, even those who would bear the burden of carrying out such directive has to be able to live with themself too.

some people will hold on to anything, even pain. just to hold on. but there is no denying the stressed caused by watching someone you love deteriorate from alzheimer's. a good friend of mine just lost her mom to alzheimer's. mom didn't have it, her father had it. her mother died of a heart attack while caring for her dad. so now she has buried her mom and inherited what is left of her father. make no mistake, alzheimer's is brutal on survivors, even when there seem a few good moments, they only highlight the pain.

inevitably, most all of us commit suicide. but most of us are in denial about it. maybe we just don't want to admit it. whether we stop eating in our decline or refuse our meds. whether we are tired of a prolonged process of dying. whether we have continued to smoke throughout our years. or overeat. or eat badly. or drink too much. when we drive too fast. even when we are not being careful crossing the street, we take our own lives in our own hands.

why is it assumed so morally different whether we kill ourselves unconsciously & carelessly or when we end our lives willfully, with purpose and peace?

[Khan]

Quote:

inevitably, most all of us commit suicide. but most of us are in denial about it. maybe we just don't want to admit it. whether we stop eating in our decline or refuse our meds. whether we are tired of a prolonged process of dying. whether we have continued to smoke throughout our years. or overeat. or eat badly. or drink too much. when we drive too fast. even when we are not being careful crossing the street, we take our own lives in our own hands. why is it assumed so morally different whether we kill ourselves unconsciously & carelessly or when we end our lives willfully, with purpose and peace?

Yes.

Many (of the uninvolved) are concerned that someone (or their caretakers) might not suffer enough.

Do these same concerned folks spend many hours feeding/turning/diapering those who need such?

[Caroline]

Quote:

Although there was no trace of recognition on her face when she sees him, she must know that he was important to her. Not seeing him everyday made her decide to stop eating. As soon as he came back, she was back to normal again.

Thank you very much for that story, GoodSense. My DP works with Alzheimer's patients in adult daycare and wonders if those who are farthest along remember him from day to day or understand that he cares about them. I'm going to share your story with him -- I know he'll love it.