Dementia Support Thread - For anyone who is suffering from or if had family members and friends who suffered from a form of Dementia (Alzheimer's, Parkinson's, Huntington's, etc.)

[Aunt Carol]

Lotta talk about Alzheimer's ITT but what about Parkinson's? Anyone know anyone with it?
A family member of mine has it. It's a terrible thing. She's totally laid up in bed and can't do anything herself, and she can barely squeak out a "yes" or "no" when you talk to her. Her husband is taking care of her, but he's old too and was never the homemaker so it's new territory for him.

Not telling you anything you don't know, but if her husband is overwhelmed by everything, please try to have another reasonable family member has access to her medical chart, ideally someone who can go to doctor visits with them. Understanding a new devastating illness, navigating the medical system, while grieving your partner, keeping her clean and warm and trying to figure out what to cook for supper and how the washing machine works--it's possible he's missed things, or misunderstood things that affect decision-making, and never realized.

Spoiler: family diagnosis story

A distant family member had a really fatalistic view of Parkinson's. He just got the diagnosis from a GP and shut down, couldn't think about it any more than that. He decided, "well, when it gets bad, my wife is going to help me murder-suicide." His wife was a big proponent of this plan--we should all have such a good marriage--but they weren't even going to try any treatment in the meantime. Too big and scary to think about; it was just going to be all or nothing.

Some of the medium-sane and more medical family members convinced them, mostly the wife, to at least give meds a try first. Once he got a specialist and a Sinemet script, the Parkensonian decline slowed down drastically. He ended up getting a deep brain stimulator and now they're looking at a lot of quality time left. They can still mutual-toaster-bath if they decide to, but that's years of Thanksgivings that were going to go out the window because a new diagnosis was too big to think about.

The moral of my weird family story isn't "never kill yourself, even if your quality of life is not tolerable to you." It's that sometimes people shut down in the face of a terrifying diagnosis and aren't able to think rationally about something that affects them so suddenly and deeply. If you can get a third person involved who can help keep track of the paperwork, medication lists, make base-touching phone calls, advocate and jump through the hoops for home health and other assistance--that relieves a lot of mental burden on her husband, and could also turn up some options that previously got lost in the deluge of information.

It'll also be good for after she's gone. There will be someone who knows what he went through, and who can say with certainty, not just empty platitudes, that they know he did the best he could for her and made the best decisions anyone could, knowing what he did at the time.

 

[Sinner's Sandwich]

Huh? Why am I in this thread again?

 

[Harbinger of the Demiurge]

Not telling you anything you don't know, but if her husband is overwhelmed by everything, please try to have another reasonable family member has access to her medical chart, ideally someone who can go to doctor visits with them.

If you can get a third person involved who can help keep track of the paperwork, medication lists, make base-touching phone calls, advocate and jump through the hoops for home health and other assistance--that relieves a lot of mental burden on her husband, and could also turn up some options that previously got lost in the deluge of information.

Don't worry at all. We've got the bases covered (because we knew this would happen lol). We live pretty close so we're seeing them often, we've got all her medical info, and there's an aid that comes every day. It really is kind of like taking care of two people instead of one. My grandfather is a product of his time if you get what I mean, so he has no idea how to do even the simple stuff like do grocery shopping, or do laundry, or pay bills, which is a big problem when you're the one in charge. All he did was bring home the bacon and Grandma did pretty much all of the housework. Thankfully, my immediate family and I are helping out a lot, so even though he'll never admit that it's a huge PITA having a bunch of people in his business, he's happy to have us. I swear, my immediate family and cousins are more stressed than him about the situation, but he really is doing his best.

It's funny, my parents say to me "Harb, I swear when we get older we're never gonna do this to you. We're gonna be SO easy to take care of." So, naturally, I'm waiting until they get older and wind up doing the exact same thing to me except they won't realize it. Then I get to get old next. Round and round and round she goes.

 

[EclecticMermaid]

This is a good, heartfelt idea for a thread. I'm not sure if brain cancer would count, but I've seen a friend's family member decline from it and it was awful.

 

[Cpl. Long Dong Silver]

My dad struggles at times to remember specific words and jokes he's going demented. He's only 65 and retired. He is a former pilot so he busies himself with mechanical work and home improvement but as I said he sometimes relies on me for certain words. Not normal nouns or adjectives but more often technical terms.

Should I be worried? I love him so much and I lost my mom young to cancer so he's all I got left. Like I said he's totally functional and carries on his own just fine, he just has gaps in his verbiage.

 

[Aunt Carol]

Should I be worried?

Likely not. tl;dr Tip-of-the-tongue experiences are known to increase with age, but don't correlate with pathology.

 

[naaaaiiiiillllll!!!]

I started a weekly fasting regime of 72 hours, which is supposed to prevent the accumulation of plaque in the brain. I got Alzheimers on one side of the family and Parkinson's and MS on the other. Having experienced dementia both via work and home life: a quick death is the only good option.

I don't know if you heard, but the plaque accumulation theory of Alzheimers has been discovered to be a gigantic decade-long case of scientific fraud. Reported here (TOR):

https://kiwifarmsaaf4t2h7gc3dfc5ojh...heimers-research-and-drug-development.125310/

My dad struggles at times to remember specific words and jokes he's going demented. He's only 65 and retired. He is a former pilot so he busies himself with mechanical work and home improvement but as I said he sometimes relies on me for certain words. Not normal nouns or adjectives but more often technical terms.

That said my whole life he's passed himself off as some country bumpkin who lucked himself into being a commercial pilot and advanced college degree holder.

Should I be worried? I love him so much and I lost my mom young to cancer so he's all I got left. Like I said he's totally functional and carries on his own just fine, he just has gaps in his verbiage.

Likely not. tl;dr Tip-of-the-tongue experiences are known to increase with age, but don't correlate with pathology.

My dad and grandpa always joke about getting "alternator disease" (they all worked on cars in the 20th Century) whenever they have word slip-ups. This is a retarded non-PC tradition I proudly continue.

I remember as a little kid seeing an ancient Oprah episode with Dr. Oz (I know, cringe, but I was stuck at home alot as a kid) about knowing you had dementia when taking a memory test was NOT from failing a memory test BUT forgetting you're taking a memory test. No idea if this is true and almost seems too simple, but IDK. Maybe our amazing fren @Aunt Carol can provide input?

 

[Aunt Carol]

I remember as a little kid seeing an ancient Oprah episode with Dr. Oz (I know, cringe, but I was stuck at home alot as a kid) about knowing you had dementia when taking a memory test was NOT from failing a memory test BUT forgetting you're taking a memory test. No idea if this is true and almost seems too simple, but IDK. Maybe our amazing fren @Aunt Carol can provide input?

Here's a PDF copy of the SLUMS test, one of the quick tests for dementia and cognitive impairment, with instructions (and Spanish version!).

Not suggesting that @Cpl. Long Dong Silver SLUMS-test his dad every time they go fishing, but reading this might better explain what symptoms clinicians are looking for. Social skills are the last to go; I've seen people who make impeccable small talk bomb this test hard. You really can tell them to remember five things, then transition to the next question, more small talk and equivocating, and the five things are just gone completely.

When I am a demented old lady there's a chance I am going to fix an occupational therapist with a steely gaze and say "Jill was a stockbroker; she went back to work when the kids were teenagers and they all lived in Illinois" the second she asks me to draw a clock. If you want to study for the MMSE instead, you gotta practice counting backwards by sevens and remember DLROW.

 

[Meat Target]

I listen to EATEOT and its fan projects a lot. It's fascinating.



The last time my brother and I saw my grandmother, she thought we were my dad and uncle. She passed away in a home during Covid.

My aunt was the only one living in the same city as her, so she had been having to care for her for years (grandma was fiercely independent). I think people with dementia get grouchy because they want to remain independent and feel like they're becoming a burden.

There's a whole scam industry out there calling elderly people and seeing if they're demented enough to make you out a check.

If you have a loved one who may be showing signs of dementia, be sure the executor of their estate or whomever has power-of-attorney over their finances is someone you absolutely trust. Especially if any of your relatives are shitbags. Money is a tragic and stupid thing to break up families over.

 

[Mordecai "3 Finger" Brown]

My dad struggles at times to remember specific words and jokes he's going demented. He's only 65 and retired.

My grandfather called everything a "whatchamacallit" for 30+ years and only developed any other signs of dementia when he was 95+.

 

[Alex Hogendorp]

I heard learning languages also help fortify your brain against dementia making you less likely to have it. But not completely immune to it though, as people with dementia often revert to their mother's tongue.

 

[Iron Hamster]

My dad struggles at times to remember specific words and jokes he's going demented. He's only 65 and retired. He is a former pilot so he busies himself with mechanical work and home improvement but as I said he sometimes relies on me for certain words. Not normal nouns or adjectives but more often technical terms.

Should I be worried? I love him so much and I lost my mom young to cancer so he's all I got left. Like I said he's totally functional and carries on his own just fine, he just has gaps in his verbiage.

Nah. I'm 63 and starting to have issues periodically bringing a word up that I want. I'll sometimes lose the word just before I want to say it.

 

[XYZpdq Jr.]

there's a joke about how using weed helps people who are likely to get alzheimer's and other forms of memory loss
pot doesn't PREVENT it, but it gives you lots of practice at working around forgetting everything

 

[Daddy's Little Kitten]

I'm not giving weed to my Alzheimers-ridden grandma.

 

[Philipp Batz]

Bio-mom had HD, but died from unrelated reasons in her late 40's, finally had the opportunity to get tested anonymously myself so I did like a month ago, got it positive with relatively high cag (no symptoms, since I'm still very young), haven't lived or really talked my family for couple of years or so (moved away and we grew apart, and not that I really liked them that much), just don't know if I should tell them, everyone would be devastated despite us not being close.
Just don't really know what to do now, probably going to drop college after semester ends (about two months or so) and either join the military or just do something else.

 

[Aunt Carol]

, just don't know if I should tell them, everyone would be devastated despite us not being close.
Just don't really know what to do now, probably going to drop college after semester ends (about two months or so) and either join the military or just do something else.

Damn, I'm sorry.

With estranged family, even if it's drifting apart rather than drama, and this on the horizon, be sure to make it plain what your medical/end of life wishes are, and determine who you want making those decisions if you can't. A lot of times a niece or nephew gets contacted because they're the legal next of kin for a relative they haven't seen in decades, and to them it comes out of the blue and they flounder, to the relative's detriment.

 

[Philipp Batz]

Damn, I'm sorry.

With estranged family, even if it's drifting apart rather than drama, and this on the horizon, be sure to make it plain what your medical/end of life wishes are, and determine who you want making those decisions if you can't. A lot of times a niece or nephew gets contacted because they're the legal next of kin for a relative they haven't seen in decades, and to them it comes out of the blue and they flounder, to the relative's detriment.

I honestly just haven't given any thought to that, I have a good decade, maybe decade and a half, hopefully two on me, plan to do everything that I've wanted and quit before it gets too bad, haven't really had much experience of people with HD, only my mom when it was still mostly bearable, but from what I've seen online and researched on my own it's just not worth pushing it to that point. And I just even the prospects of you know, like thinking about it, daunts me, I always knew it was basically a cointoss, but never kind of realized it before, it's just that now I see people around me talking about stuff like college and uni and like more long term plans like family and I know none of this stuff is for me

 

[plastic Consumer]

They will spread their shit on walls, put shitty toilet papers in the sink and swear "they did it this way their whole life"

The "I did it this way my whole life thing" is frustrating, I'm not caring for anyone with dementia but I know someone who has cognitive issues that their family doesn't recognize fully because they're not around much. They will attempt to clean up poop with a sponge and then use that same sponge to wipe down the counter and do dishes. When told to not do that they simply go "I did it this way my whole life" or respond as if they couldn't hear what you said or with something nonsensical. Theres a lot of behaviors like this that can end up being dangerous but this isn't a blog post to vent about it.

This is going to sound terrible, but I don't actually fault anyone who chooses not to take care of a dementia patient and leaves that to the professionals instead.
It's not someone everyone can do, it's fucked up we expect them too.
I can totally see a life of someone who was born to a fucked up parent, who had to parent that parent, had their lives eaten by that person, and then had their own mid-to-late life taken by the same person.

I know someone in that sort of situation, its tragic honestly, these boomers shouldn't be this horribly disabled physically nor mentally in their 60s, they have the capacity of an 80yo, things you expect to do for a parent in their 80s you're now supposed to do when they're 60 and they aren't leaving anything behind for their adult kids but expect them to waste their own 40s-60s taking care of them.

 

[Lovely Kin]

While I never truly knew my grandfather, him having dementia really scared me, and despite him being a piece of shit like everyone said, I can't help yet feel bad. The only time I "knew" him was around the end of his life and how he was just staring blankly at the ceiling or wall in a silent room. No movements, just laying there quietly, even a little kid like me knew it was probably hell to be trapped in that body and just staring blankly forever. Doubt he could feed himself as well at that point.

 

[CoolFool]

I am terrified to get dementia. It runs on both sides of my family. The only "comforting" thought I have is that everyone in my family who had it, were also extremely unhealthy (Heavy drinkers and smokers), so I like to tell myself I won't get it since I'm not like them. But I know it can still happen no matter how healthy you are.

Working in a nursing home really spooked me further about getting it. It's such a horrific way to go. The worst thing is seeing patients have a moment of clarity about their situation. One of the creepiest things I can't get out of my head was this old man who was in the end stages of dementia and it was so bad he couldn't recognize most of his family members. I remember him telling me and another person how cruel it was that we were keeping him alive. We thought he was long gone already and didn't have any orientation to his situation (He basically just laid around doing nothing all day and couldn't hold a conversation), but for a brief moment he was alert and orientated, and in that moment he chose to tell us how much he was suffering. He died a few weeks later.

I have so many stories that haunt me and weigh heavy on my mind. Aging sucks.