According to this article, it is a growing problem that is only going to get worse in the near future.
If you were diagnosed, what would you do as long as you were still coherent?
If your spouse were diagnosed, what would you do?
If you have personal experience, what can one expect and how does one cope?
Choose a good assisted-living facility while I still had the ability to consider it! Get my anime ready - pretty pictures are always going to be fun to watch. Start a journal, just to provide my own version of Flowers for Algernon.
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If I had a spouse - take a nice long trip or vacation, while one still could enjoy it. One of those, “Before we die, we want to see this,” sort of things. Make decisions about joint assets and about long term care.
My grandfather had Alzheimer’s. His temper got very uncertain for the last couple of years he was aware. And then he’d get confused, trying to go into work at the shop (Which had been sold back in the early 60’s.) and finally my grandmother had to get him put into a nursing facility.
sigh For the last three years of his life, it was just the body there, really. Which was heartbreaking. But, the worst was an incident I can recall from early in that period: I was on leave, and went to see my grandfather, and we took the dog along with us. (The dog was always a big hit at the nursing home. Getting a pet might be something I’d consider, honestly, if I felt I had someone who would care for the dog after I couldn’t.)
My grandmother, my mother, the dog and I were all there. The only person that my grandfather recognized was the dog. After a few minutes, he remembered my grandmother. (She came to visit him daily, after all.) I don’t think he ever twigged to who I was. Nor my mother.
And the dog wasn’t even his! It was our dog. I’m glad I went to see him, and glad we brought the dog, too - because it did make his day. But, watching my mother looking for any sign of recognition from her father was hard.
Suicide, without a doubt. I don’t see the point in living when you can’t even remember to go to the bathroom, let alone forget your family’s names.
I would support them in whatever decision they made, but I would hope they’d choose to be put out of their misery, not because it would be “easier” for me (yeah, a dead spouse is a lot better than a spouse without a brain), but because nobody should want to stay alive in that state.
Yes, I had a grandparent with dementia; my dad and his other kids had to drag him out of the house and into a home when they found out he hadn’t bathed for days and was not responsive to speech. (Apparently, it either came on really fast or the family was in denial about how bad it really was; I was really young then and only found out about it later.) Luckily he died a few weeks later from a heart condition. I think it would have been cruel to keep him alive in that state. There are different degrees of dementia, certainly–my grandmother couldn’t remember doctor’s appointments or names but she still read and did crossword puzzles, I certainly wouldn’t have advocated euthanasia for her–but if we’re talking full-blown dementia/AD I don’t see how anyone can call that a life.
If I was diagnosed, I’d kill myself ASAP. You don’t live after you ger Alzheimer’s.
My mom got it, and it is one of the most terrible ways to die you could imagine. All the stories you hear- the temper swings, not recognizing family, all of that. She couldn’t feed or bathe or relieve herself, and that just about physically killed my dad until he finally put her in a nursing home. She screamed and wailed and cried when they came to take her, she didn’t know any of us, but she knew she was going away. She thankfully only lasted about 2 months in the nursing home.
I quoted the above post since I have a little dog that my mom always just adored. When she would get out of control, my dad would call and I could take him over to their house and she would instantly calm down. That dog was the only thing she seemed to know, and the instant calming effect was incredible. She had a photo of the dog that she would set and rub for hours, it went with her to the nursing home.
“All hope abandon ye who enter here”, welcome to hell.
This is not a personal experience, but was related to me by a close friend. She has been friends with this guy for many years. They are both librarians. He recently came to visit her for a week, as he does at least once a year, and told her he had received the results from the medical tests he had been having. AD.
He told her he planned to travel for a little while, then has made arrangements to stay with a friend until he can’t care for himself anymore. He asked her not to visit after she stopped hearing from him, because if she didn’t hear from him it meant he didn’t remember her and he didn’t want her to go through the pain of him not knowing her.
Suicide. Absolutely, unconditionally. I would talk to those I loved, particularly my beloved SO, and explain things to them and beg them to remember me the way I was…not peeing myself and wandering all over the place in a haze. Then I would dismiss everyone but my SO and ask him to hold my hand as I slipped into that last sleep. I’ve already discussed assisted suicide with him
I don’t know. I’m hoping that by the time I have to consider this question, we will have found either a cure or a way to do brain transplants.
I hope I would have the balls to kill myself before it got too late. Obviously the hard part would be letting go while you were still able to.
I would never consider suicide. Never. If I was diagnosed with dementia I would make arrangements to be committed and hang on to the last thread. I owe this to my body which has served me well.
My mother has multi-infarct dementia (a series of small strokes, similar to Alzheimer’s), and my sister and I have both agreed it’s under the train for us if anything like that should happen.
My mother is “lucky” enough to have the money to be well looked-after, and my sister and I to visit regularly, talk to on the phone every day, and look after her medical, legal and financial affairs. I won’t have any of that . . . Thank goodness I won’t get very old, according to my doctor. My cholesterol has skyrocketed again, I’m about 25 pounds overweight, and she “doesn’t like the sound of my lungs.” When I told my doctor I was planning to die in late middle age, she said, “well, that’s good.”
There’ve been numerous studies done (sorry, can’t cite at the moment) about the healing effect pets have on the elderly, particulary those with ALZ or related dementias. We’ve been told time and again by my mom’s neurologist and other doctors (she has ALZ, btw, and lives with us) that there’s no doubt that our “fur children” have played a large part in keeping her on a “plateau”, in that her decline hasn’t been as swift as it could be.
As much as I’d love to hijack this thread and turn it into a heated rant about the day-to-day caretaking of an ALZ patient, I won’t. I remember my mom saying numerous times when I was younger, though, that if anything ever happened to her physically or mentally, she would want me to “do away” with her. Now, there’s no way in hell I ever would, but now I look at her, a woman who now only semi-comprehends anything and can barely walk, and I wonder if she ever remembers saying that. I wonder if she knew she had ALZ before she was officially diagnosed. Most of all, I wonder if she remembers the woman whom she always was for most of my life.
Assisted suicide? Some may see it as a “kind” thing to do. But remember, the one afflicited never asked for it. S/he probably doesn’t realize s/he has it. As a social worker once said to me, “It’s only ‘kind’ in that it alleviates the heartbreak of those witnessing the decline.”
I would just try to forget about it.
So says someone who’s never seen a 90 year old woman who spends all day every day screaming for her mummy.
If I had money, I would make all of my financial arrangements while still cognizant, with a lawyer and psychiatrist attesting to the validity. After that I would enjoy life for as long as I could, and then either enter assisted living or arrange for assisted suicide. If I did not opt for suicide, I would call all of those I cared about and ask them to, when my mind went, regard me as dead and give up absolutely no part of their lives in taking care of me. I’d probably ask them this again and again and again and again…
I’d also ask them to not be afraid to see the dark humor or absurdity in the illness. Laughing about some of my grandmother’s snafus and the like during her last days (the “it wasn’t funny at the time, but…” latter day gallows inclined comedic spin) helps us remember her without getting depressed. Essentially I want the same epitaph as Michael Landon (which he used on the Patricia Neal episode of Little House as well as his own gravestone:
Uh, I don’t see a brain transplant helping. The problem will move with the brain, and your body + someone else’s brain doesn’t really help you any. I’d hold out for that cure, if I were you.
This is an issue in my family. My brother, sister, and I are dealing with my mom’s increasing dementia. Nobody has diagnosed her with Alzheimer’s though.
She often sits and stares into space. She can’t converse with anybody. She answers in single syllables. She recently fell asleep in the bathtub, overflowed it, and then woke up and couldn’t get out of the tub because she has bad knees.
My dad is absolutely against putting her in assisted living, yet he doesn’t want to watch her as carefully as he should.
I don’t know what I’d do in this situation. I’m trying to remake my diet and exercise regime and be healthier. I do a 90 minute work out (yoga) four days a week. I try to keep my mind active.
I don’t want to get Alzheimer’s or dementia after seeing how it’s changed my mom. It breaks my heart when I think that once she had a personality. 
If there’s still no cure, think of a good way to kill myself.
Find a good home and visit him as long as I can force myself to.
Cope? You don’t cope. You hang on, but coping isn’t really what it is. You do the best you can not to lose your mind while they lose theirs.
The most horrific, hellish year of my life is the one when we moved in with my great-grandmother to care for her after she was diagnosed…and I was a college freshman so I could get away most of the time (on the other hand my roommate sucked too, so there was no “good” place to be for months.) My parents and brother didn’t have that luxury, they were there most of the time with her. By the time she died, we all hated her, because that disease steals away every good part of you, and leaves only the most petty, evil parts of your personality.
As a result my parents have forced us to promise that if either of them gets it too, we won’t take care of them ourselves.
Like some other people who have faced this, the only way to reconcile good memories from the bad is to think of my “real” great-grandmother as having died several months before the imposter who took over her body did. That way I can still love my great-grandmother without having to admit she was the same person who deliberately injured people whenever she could, and the one who screamed for hours and couldn’t be comforted.
People think that Alzheimer’s are “forgetful” but that doesn’t even begin to cover what the disease does to you - it eats your brain and you lose all function, not able to care for yourself at all, control your bladder, or, if you live long enough, eventually even get out of bed. Mentally…I think she was fully lucid less than a dozen times the last year of her life. I’m not dying like that.
What’s frightening beyond belief is the fact that scientists want to increase longevity, knowing that 50% of people who live to 85 are going to get Alzheimer’s. It’s the “just because you can, doesn’t mean you should” example.
Several posters responded : “I would commit suicide”. That’s something I already wondered about, and indeed, if possible, if i’m able, it seems to me to be the only reasonnable thing to do.
However, and I considered in the past asking this in GQ : usually, when people are diagnosed with Alzheimer, are they generally still of sound mind, or are they already only a shadow of themselves? I’ve tended to assume the latter, hence that suicide wouldn’t be an potion because I would already be searching for candies or wandering aimlessly in the streets when it would happen.
My mom was still functioning when she was diagnosed. She knew what she had, but had become forgetful and so went to see a doctor. More than forgetful, she would put her dentures in the coffe pot, stuff like that, but was still aware of who we were.
I say diagnosed, the only 100% reliable diagnosis at that time was a brain biopsy, but it was strongly suspected that she had Alzheimer’s. Aricept prolonged the progression, but when it lost it’s effectiveness, she really went downhill fast.
She was certainly lucid enough (to commit suicide) early on, she was able to get her affairs in order before she progressed too far.
make that “delayed the progression…” I can hardly type about this stuff.