[baskethead]

It's a lovely story, but quite honestly, Alzheimer's/dementia is a shitshow. I wouldn't wish it on my worst enemy and there are many people I despise. There is nothing crueler than dementia.

My mom is suffering through dementia right now. We did something similar. We made photo albums, and went through them every day, until my mom stopped responding to them. Within a couple of years, she forgot who we were, or she would mix up my sister for her sister.

After 7 years from her diagnosis, she no longer talks and she no longer responds to me. My sister is taking full time care of her, and she is cleaning her several times a day because she's incontinent. My mom recently has stopped swallowing. She also seems to have contracted a mild case of COVID, and my sister has been self-flagellating herself because she felt guilty about it. I of course told my sister there's no reason to feel guilty, everyone is getting it and it's something everyone will deal with, especially my mom. I secretly wish it would take my mom's life to end her misery.

The worst part in the first few years were her lucid moments. During one of those moments she wrote a letter to God, asking to die, because she knew something was wrong but she didn't know what. We found the letter hidden in her dresser. Every time I think about it, I burst out in tears, even now. It's disgustingly cruel for someone who spend her entire life sacrificing her life for her kids and family, and asking nothing else.

So when articles like this come out, it is extremely difficult to contain my contempt at any stories that don't paint the picture exactly how it is: a complete and utter shitshow. It's unfair for the victim and it's unfair for the caretakers. And it's extremely expensive and almost impossible to keep your loved one living in a modicum of dignity.

[IvyMike]

I lost a loved one to dementia, and articles like this one make me want to scream.

Every experience is different. But most people think "oh, they just start getting forgetful", but as the mind decays, everything, everything, goes. Imagine your parent screaming at you in rage because they are hungry, but they've also decided that they hate every food you put in front of them, and they have refused to eat for two days. They are quite literally starving. "What do you want, I'll literally make you anything!", and they scream back "JUST BRING ME SOME FOOD!" Your life is falling apart trying to take care of them. And your parent tells you they hate you, and that you must hate them, since you aren't helping them. They can't shower, they can't brush their teeth, they can't use the bathroom without help. You start to need to take care of them like they are a baby, but babies are tiny and weak, your parent is large and while they're not "strong" anymore, they're still able to fight you in a way a baby cannot. They're in constant physical pain, but they can't describe where, and they lash out both physically and verbally.

They'll forget how to speak, or maybe they just stop trying. Then, they'll forget how to chew, and then once you move to a liquid diet, they'll eventually forget how to swallow.

Fuck this article.

[the_clarence]

Hopping I won't offend anyone here. There's a history of alzheimer in my family and I actually know a number of families that had to deal with the third generation going cuckoo. I've always thought that, if it would happen to me, or to one of my parents, perhaps the only sane solution would be to kill them. I'm wondering if I'm the only one thinking this. It seems like most of today's culture is about keeping people alive as long as possible, even if they're not themselves anymore, even if they're suffering.

[hackflip]

I think that a lot of people think this in theory, but in practice the "boiling frog" phenomenon prevents them from following through.

[Baeocystin]

My mother went through the same, and my feelings echo your own.

There is absolutely nothing good about losing a loved one to dementia. It is constant pain, for years.

I still remember the first time my Mom flinched in fear as I went to give her a hug, as she didn't recognize me. Her greatest fear was losing her mind, and it happened, and there was nothing any of us could do about it. It was a mercy when her body passed, as everything she was had died, inch by inevitable inch, years before. It was cruel, horrible, everything.

[sizzle]

Same with my dad after a hemorrhagic stroke and he was on warfarin blood thinners. It basically felt like dementia, couldn’t remember a thing and couldn’t use half his body, confined to a wheelchair. I still mourn the loss of my former dad who is a shell of a once great man.

[benatkin]

Irrespective of whether you think the most of the years of her being in a nursing home are a waste, the entirety of it is a touching story to me. Society has prescribed keeping her alive by tending to the extensive requirements in order for her to stay alive (such as helping her swallow and sit up and get around), and the author and his daughter are making the best of it. Reading the book and telling his story are not keeping her alive and making her suffer longer, being in the nursing home likely is. So IMO it can only help, not hurt. He isn't putting forth the argument that his love poem practice has helped her up to this day, but that it at least helped her early on in the progression of Alzheimer's, and I think it did help her early on in Alzheimer's because I think she still had capacity to experience life for some time after her diagnosis. I also think it is a good father-daughter experience, given the circumstances. I think he leaves it an open question as to whether it was helping her in the later stages of it, or if Alzheimer's is nothing but an utter shitshow at this point, so while I see how the article pours salt on wounds, I'm not going to fault the author for it.

[mezentius]

Thanks for this. I had the same series of thoughts after reading the article, and struggled to feel more charitable about it. "Shitshow" is a kind description.

On my father's increasingly rare good days, I often think of Stanislaw Lem's "Solaris" — "I persisted in the faith that the time of cruel miracles was not past."

[supperburg]

Your contempt is absolutely justified. I went through something similar myself. These people, who have absolutely no voice, are the victims of the virtue signaling, moral crusading army of idiots who are very happy to tell people like us that it’s wrong to want to die or to help someone to die. They sell today for tomorrow. They trade in the suffering of thousands so that they don’t have to confront reality or say something unbecoming. It’s truly infuriating because this results in real and profound suffering. When someone is in need of death, and is writing letters to god for a merciful death, what societal/cultural mechanisms are there to fall on? None! It’s a fucking disgrace and a stain on the human race that such conditions are allowed to go on. Truly on a stain on us.

It just boggles my mind that the moral crusaders scream endlessly about ending the suffering of these people or those people… and yet they do nothing to end the suffering of millions who are right in their back yard and who’s suffering can be ended relatively quickly and easily through very simple legislation, awareness and education. It’s the lowest hanging fruit and yet it goes unpicked.

And there is a large skilled nursing industry that is very happy to profit from it all…