My mother (and our family) had a very long and horrible hell of early-onset Lewy Body dementia and who knows what else. I left work for several years to care for my parents and I am sobbing now bc dementia is so awful and I was never able to come to terms with it. I met the most awesome doctors, therapists, day program providers, skilled nursing facility staff and programs, and fellow patients but it was still all so horrible what happened to my mother. My experience with her was the exact opposite of the aging, physical decline, and natural and peaceful death of my da. I was fortunate to be his main caregiver with help from my siblings. If anyone needs to talk about what they are going through or needs to brainstorm solutions to issues or a respite, feel free to contact me. I am interested and (used to be) skilled with dealing with people with dementia, but just couldn't feel okay about it with my mother then or now.
@IOnceWasLegend you are kind to have started this thread. I find it interesting how dementia affects people in any group I am part of when the topic comes up.
It's so, so terrible because there's never any 'why' or coming to terms with it beyond what I call 'diet okay': you drink it long enough that you forget the taste of the real thing.
My father has dementia, I don't know if it's really bad or not as I have no point of reference with others I suppose even a mild case is "really bad" if you've never dealt with it. It's one of those things that when we finally pegged it we realized all the signs that were staring us in the face, one of the things was he loved to go to Lowes (which was near by) and we found in his garage an absolute butt ton of weed whacker string replacements and at least 5 weed whackers all of which worked he just forgot that he had them and kept buying them.
One day I got a phone call from the San Bruno PD asking if I knew where my father was, and a bit later my mom called too, turns out dad left the day before and never came back, as it turns out he got confused and didn't know how to get home, he eventually got home about 11am (roughly 18 hours later) was really tired etc, police came talked to him and a few days later he got a summons to the DMV, I drove him there and luckily after asking him some questions, his license got forever revoked. He professes they were out to get him from the beginning but listening to his answers that he gave there was definitely something wrong and he was completely oblivious to it.. We were just thankful that he didn't injury or kill someone while driving, and luckily the DMV stepped in to stop him forever.
But yeah it's hard, my mom is over an age that she can't take care of him, and one day she got so stressed out she had to go to the ER due to all sorts of physical things, so for a few days I had to stay with my father and oh boy that was not fun. Between sleeping pretty much all day, and getting up constantly in the middle of the night to go to the bathroom, I realized very quickly that I couldn't do that either or I should say that I wanted no part of doing that. The difference between my mom and me is she's hard of hearing so doesn't hear him every time he gets up, wanders out of the house, etc, where as I do, there were also some other things I noticed that my mom didn't.
Luckily my father is in a care facility now where professionals can handle it, unfortunately the health care system of this country failed the elderly long ago when it decided that any sort of help for the elderly should be done pharmaceutically and not through actual care because it was cheaper to give pills than to pay people to care which means the cost for said care is more than most people pay for rent in the bay area, and while my mom can afford it for now if it lasts too long she won't be able to. Veterans benefits apparently won't help either because their net worth is "too much" and I'm not sure what will happen then maybe when they go through all their savings the VA will assist with care in some way not that they could afford much then.
Then there's me wondering if what he has in is anyway genetic, as there are times when I'd forget something like a common word and then wonder if these are early signs for me, and I fear putting my wife through that, truly hoping death takes me before I get to the stage my father is. Then I also feel like a horrible person for hoping my father just goes to sleep one night and doesn't wake up for the sake of my mother, as grief can be temporary but the stress of dealing with this is never ending even when he's in a care facility.
Those experiences mirror my own and my stepmom's.
It started for my father with aphasia/speech problems. He'd forget a word, or a descriptor, or how to say something. I remember him saying, "So...are you still, um...up there?" and it took me a bit to realize that he meant up north, in Michigan, for grad school. It progressed to him seeing people that weren't there, arguing they were, and then Capgras delusion, where he would randomly make allusions to neither I nor my stepmom being the "real" versions of ourselves.
Unlike Alzheimer's, memory problems weren't present for quite a while. It wasn't until three or four years after we realized there was a definite issue that he didn't recognize me. We took a trip up to their small vacation home for some father-son bonding time. I stopped at a gas station (like your father,
@sfsuphysics , his license had been revoked at that point after he'd gotten lost driving to Fresno) and used the restroom. When I came out, he was wandering the parking lot. I asked him what he was looking for and he looked at me for a long moment before going, "I'm, uh, I'm looking for my son."
For a couple years, I would go visit my dad and stepmom every other weekend, three times a month maybe. They live near Sacramento, so it's hard to make it up as often as I'd like. Despite the disease taking his mind, his body was still in great shape for his age, and he liked to walk. So he'd get up in the middle of the night, get dressed, walk around the bedroom, go back to bed, repeat. My stepmom couldn't leave him alone for any length of time, and wasn't getting more than an hour or two of uninterrupted sleep a night. I would insist she go visit friends and get out of the house on the weekends I watched him, because that was really the only respite she had.
They did everything right. They saved for retirement, planned on selling their larger primary home, moving into their small vacation home, and traveling. Instead, because of my father's illness and the complete lack of support from our healthcare system, my stepmom has had to sell pretty much every extraneous thing she owns, pinch every penny she can, and has recently started working a retail job to help make ends meet. This is in spite of the fact my wife and I provide financial support every month, which is a luxury many people cannot afford. Instead of traveling to Italy with my father like they'd always wanted, she's weighing the pros and cons of a reverse mortgage on her home or outright selling it, renting a small studio apartment, and hoping my father passes before the money runs out and we're forced to place him in a state facility.
And you're not a horrible person for thinking that. My grandfather suffered from dementia of some kind, and - after watching him go through that - my father made it very clear that he would rather be dead than have to deal with that. That, unfortunately, is not what happened. But it's not cruel to wish they would pass on, since a painless end is likely better—both for them and their loved ones—than dealing with the illness every day.
