I thought what monstro said was pretty succinct and understandable. Not sure how I could put it any clearer to you. I assume you realize that nothing I - or anyone else - said in this thread suggests an “eagerness to embrace” death.
If I am not myself, I would rather not exist. I value my independence and self sufficiency greatly. I do not wish to be an emotional and financial burden to my family and society. I would rather be remembered as someone close to who I am, than as something far less.
You - or anyone else - are certainly free to feel differently.
I observe that you have not offered any explanation of why you prefer dementia, your beliefs in an afterlife or not, or your experience with people experiencing dementia.
With respect to the ability of someone with dementia to consent - I agree. That is why I suggest these discussions/decisions take place at an earlier point. But if we agree that an individual lacks the competence to decide to die, then why ought we place much weight on their expressed desire to continue living? Especially if that contradicts their previous informed choice?
My mind cannot conjure up a worse fate than being just another unpleasant task in the workday of some underpaid stranger in a nursing home. Horror stories abound.
Not sure many people know what “advanced dementia” entails here. We’re talking the inability to feed yourself, to swallow without choking, hallucinations, unable to walk or pick things up, and eventually total bladder and bowel incontinence. Advanced dementia isn’t confined to memory loss and confusion.
I (with a history of Alzheimer’s in the family) plan on killing myself LONG before the “advanced” stage of dementia, unless we come up with a cure in the next 20 years.
When I was younger I would have voted for death. Now that I’m officially an elder (78) I think there is always hope for a cure but death is absolute. I don’t wanna die.
Ny grandmother has dementia and I believe there’s a history of it in the family, so it’s certainly a fate that I could encounter at some point.
I choose dementia because there is no afterlife. Death means complete and total non-existence and the complete destruction of the self. I would prefer to lose some of myself then to lose all of myself.
I’d like to partially retract my answer. I was being kind of flippant. I would still rather be alive than dead, that part hasn’t changed. But I do realize that relatives of dementia sufferers have it pretty rough. I do not mean to belittle their struggle, and definitely sympathize with them. I’m just not the kind of person that likes to give up, even when the odds are against me. So please don’t take offense when I say that I’d rather fight than choose death. Your preferences are of course your own, and equally valid.
Since we’re crawling around in each other’s minds here, is it really so hard to understand the allure of “permanent nonexistence”? I’m not in any great hurry to die these days because I feel like my existence can still provide a significant net ‘good’ to the world (not earth shattering, but I can improve the lives of a handful of people). Once that changes and I become a burden I can think of no more honorable thing than to gracefully bow out.
I’ve lived more years than I thought I would (my dad died when he was 6 years younger than I am now, and he was a near-perfect specimen). I would choose death without reservation if I lost the ability to care for myself. The last time someone wiped my ass for me I was a toddler, and it ain’t going to happen again.
I appreciate all of the responses, and take offense at none.
Does anyone know what the general public’s response to a similar question would be? As I looked around the room at the childlike - or vacant - faces, I just felt sad, thinking about how they (I presume) used to be (at least somewhat) independent, competent people. I wondered what they would have thought if, in their younger days they had been able to see what their lives would become, what others had to do for them, what their loved ones thought of their continued existence…
Except with advanced dementia, there is no fight left. There is misery and confusion. There is constant calling for help, which is ignored, because your physical needs have already been met, and no one can do anything for your mental or emotional needs. If you are still ambulatory, you wander the halls of the facility, confused and looking for you lost love one, or for your room, until an overworked staff member can get away from more urgent tasks and find you and get you back where you are supposed to be. You might have trouble swallowing, and choke even on spoonful of pureed food. Your body might be forgetting how to breathe, so you gasp for air. You might be frightened. You might be ashamed of your incontinence. You might be raging so much that you are in constant danger of giving yourself a stroke or heart attack from the rage, which would make your situation worse. You might not be changed often enough, and develop painful rashes and bedsores. If you are in a really poor facility, you might even get scabies or MRSA or something else. You might not have family members coming to visit you often enough to reassure you and make sure the nursing home staff doesn’t neglect you.
Inre in home care: You might not have family members willing or able to care for you at home, or who have the means to hire honest, reliable, competent in-home aides to give them respite, so they don’t have to entirely give up their lives to care for you, just most of their lives. I don’t know anything about you, but if you are of large size and can no longer get to the bathroom, you will need more than one aide and a Hoyer lift to get you up in a wheelchair. Does your house have room for that?
Visit a few nursing homes, and you’ll see that there are not very many happy people with advanced dementia.
There is no rational reason for a society to pay for indefinite cold storage of people who are of only marginal use, even if they can be successfully revived. The cost of reviving and retraining them would also be huge. Unless they are being saved to be revived for slave labor or cannon fodder, perhaps. However, I think it far more likely that power failures or employee incompetence would complete the dying process for the people who have themselves frozen.
I’m reminded of the endless debate among people who read. Some people will stick with a book, no matter how terrible or unenjoyable they find it, because they want to see it to completion. Others think that reading something you don’t want to read and don’t have to read doesn’t make sense.
I’m in that second group. And I see a parallel between that and life. Closing the book when it gets too terrible makes more sense to me. I’m not living for other people, or the planet, or some theoretical ideal. I’m living, and reading, for me. Bringing some happiness or utility to others is good and that could keep me going for a while, but I need to be bringing some happiness or utility to myself, too.
I don’t have a soul that will go on. I don’t have a mind outside of my brain. I just have this one, fragile existence. No need for me to act like getting to the last page is noble or says something good about my character when I’m talking to the void.
I expect to die as the price of living and accept that fully. A prolonged death process slowly losing all that is “me” with my shadow existing as a burden to my family and to the world? I do not expect nor accept that.
I don’t know anyone who has cared for those with advanced dementia (either as a loved one or in a professional capacity) who would not choose death for themselves in the poll of this op.
And this. None of us can truly know what it’s like to be far into dementia, but it’s a dreadful thing for the family to have to deal with.
I have. And it is. Totally with you here.
It’s especially difficult for those around you if you’re body’s still in good shape. When you’re taking a crap out in the yard because your mind’s gone, and your wife or daughter is helpless to stop you because you’re still big and strong, you may be deriving enjoyment from the experience, but I can promise you that they won’t.
I’m not making up this example either. This happened. These were people I knew.
Well put. The only way to avoid non-existence is to not exist in the first place. Everlasting life sounds great but it would necessarily preclude the possibility of reproduction. Not an existence that appeals.
Nor does an afterlife appeal. There is no evidence for it and because I don’t believe it and that this is the only life I’ll ever know, damn right I’ll make the best of the time I’ve got and get out of the way for my kids to do the same.
But dementia isn’t really something you could fight. It’s especially a problem because you wouldn’t even know that you had it. People with Dementia or Alzheimer’s really don’t know that something is wrong.
With the caveat that they are aware as it starts that there is something wrong, that they are forgetting things they used to remember, having difficulty concentrating, have more difficulty controlling emotions, etc. But so much of it is slow and insidious. It’s the reactions and attention of their loved ones that often make it clear there’s a significant problem. One of the issues in the US is that people will handwave certain things as a natural part of aging when they aren’t.
After being on the periphery of watching my grandmother slip into very severe dementia before her death, I decided that early Alzheimer’s would be a great time to take up a life of skydiving and dangerous narcotics. Go out with a splat, not a whimper.
Perhaps it’s not *exactly *answering the OP, but it’s in the spirit of it. I volunteer on an ambulance. Last night, we were called to a nursing home where a woman had fallen out of bed and hurt her face. The woman had dementia, though probably not what would be considered “advanced” dementia. She could answer yes or no when we asked her if she wanted to go to the hospital, but was otherwise uncommunicative with us and her husband did the talking. Her husband was just the sweetest guy, advocating on her behalf, insisting that the hospital should phone any updates not to the nursing home staff but directly to him, and making us promise that we would return his wife to him just as beautiful as she is now.
When we loaded his wife onto the cot and brought her to the door, her husband grabbed his walker and followed us to the door, and asked us all to close our eyes while he gave her a kiss goodbye. He said “Later alligator,” and when his wife didn’t respond, he said in a gently teasing voice, “You’re supposed to say ‘in a while crocodile,’ remember? That’s your line.” It very nearly brought tears to my eyes how much he still loved this woman even as she was not visibly returning his affection.
If I were suffering from dementia and all alone, it would be horrible. But if I were slipping into dementia and had a man like that by my side, I would absolutely want to go on living.