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.)

[Matzo Nazi]

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

Worked in the same field for nearly a decade, it fucking sucked and was some of the most depressing work I ever did. Had the exact same experience as you and many similar, solidified my plan to end it on a beach with a gun if I ever get diagnosed with dementia. Had a 103 year old women bawl her eyes out because "I just don't understand why God hadn't taken me yet, he took my kids and all my friends and family first". Needed a few drinks that night.

 

[grump]

The best thing people can do for a real solution is to lobby for increased research. We are just starting to get serious about finding out the mechanisms behind stuff like Alzheimer's. The first therapies that attempt to treat the actual disease process are starting to roll out. Its of limited effectiveness but there is some promise in its effects. A lot of the hold up is for decades we didn't really understand anything and then once we started understanding some of the process drug companies simply went for the lowest hanging fruit without full comprehension. With some more funding of basic research and focused effort on some basic research a breakthrough in the near future is very possible.

 

[Aunt Carol]

Had the exact same experience as you and many similar, solidified my plan to end it on a beach with a gun if I ever get diagnosed with dementia.

A little off-topic but this is why I feel 1. the USA needs a couple years of mandatory service and 2. one of the options should be working as a CNA.

Every thinkpiece you read about dementia, caregiving or the dying process starts with "I totally had no clue things were like this!!"

The only way to get people to plan ahead, and to get LTC reform legislation to pass, is for the understanding to spread.

 

[GAY DEAD MUPPET GANGBANG]

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.

My grandmother had it and it was hard to watch. She was always the busy bee who did everything and then my mom and grandpa had to start looking after her in the toilet before eventually putting her in a home. It devastated my grandpa to such an extent, because it was clear she didn't quite realize why. She would regularly ask him when he visited "When can I get to go home?" to which all but destroyed him. The people there said that even at that time, she was up and about and doing stuff, until eventually she was just alive and a husk who could barely talk. I could not see her like that, to have that be the final memory of her, but I saw pictures from my mom and it's hard to look at. Like someone gasping in pain and not the sweet grandmother who used to cook and take care of us.

I had such bad anxiety, I couldn't be there when she passed, but my mom told me she was having a bit of a panic but then calmed down when my mom and grandpa told her that "We're here"; she might not have KNOWN, but she could probably feel it and it put her at ease, then she slowly passed.

I hate that I missed that, but I'm also glad I didn't at the same time. :x

In any case, just try and live your best life; there's nothing you can do at that time, and hopefully you'll have somebody around you at the very least... God, that sounds horrible, I'm sorry. :x

I firmly believe it doesn't have to wind up this way and there's always still time to live the life you want to lead...

 

[Motherf*cker]

How did I miss this?

I moved back to be a full time caregiver for my dad who has a slow progressing dementia and I also care for my mother who recently had spinal surgery.
Being a caregiver can be so lonely, and I have experienced a world of pain but I'm finally at the point where I have accepted my dad will never be the same and I have to be more understanding and patient.
I have lost my dad slowly piece by piece but he's in the moment and the only ways he connects day to day are notecards where everything notable has been stated in bullet points.


My grandfather died peacefully in his sleep but I have vivid memories of him completely losing his mind because of Alzheimer's.

 

[dick brain]

I thought it would be funny to start making the same post here over and over but it sounds like you guys are going through it. My condolences.

 

[Aunt Carol]

Recently I've met two (unrelated) demented people who could be distracted by their smartphones, and it makes me wonder how that's going to change the landscape in the coming years.

I've seen tons of demented people who used their phones as phones, of course, and video chat is really helpful for helping calm someone down, but these people who would just scroll. And scroll. And scroll. These were people who could still read, but they usually got into a run of AI short videos, so maybe they'll still get enjoyment out of the mobile Internet when they lose their literacy.

Spoiler: story

Normal sundowner, she knew she had to do something but not what, go somewhere but not where, and she was going to call her daughter right now. Helped her realize that her phone was right next to her, with the assumption she'd call her daughter and get talked down a bit and into a calmer mood. But instead of calling, she just muscle-memory opened Facebook and started compulsively scrolling. Like a digital version of trying to find something, and she did it for almost an hour (as she settled down emotionally).

It was like something you'd put in an episode of Black Mirror if you were really out of ideas.

 

[Blue Gem Kosher Queen]

I know this will read very dramatic but is my way of coping. I grew up in a family that seems plucked from one of those somewhat depressing folk songs/stories. There wasn't a lot of anything but the tragedy of illness. I've been hearing from the elders about how one day they will be gone for as long as I can remember.

To save you a long and terribly sad powerlevel, my grandma on my father's side has Alzheimer's, that after surviving cancer. I've a complicated relationship with my father's side. For one my father lost part of his inheritance and his floundering business once my grandma started to succumb to it. My grandma kind of raised me, as in she took care of my sister and me during our primary school years since we lived near by. She was a frail lady that cooked the most insipid food possible and dragged us to church every day. She was always scared and made me self-conscious before society even had a chance to do it. She taught me to play piano.

Today, matter of fact an hour ago, I accompanied my dad to visit her for Mother's Day. The place was as quiet, muted and depressing as I remember it when I was a kid. The only source of anything is the TV on one of those fail clip shows themed around Mother's Day. I don't know and I guess is better if I don't question if she even likes it. But I sit, watch and stay silent like when I was a kid. My uncle, who is partially on the dispute that made it so my dad barely visits, shows up and I instinctively do the sign of the cross (the version where you also do a small cross on forehead, mouth and heart) which I learned from my grandma. She actually reacts and takes an interest in me for the rest of the evening even while not remembering my name (I was creatively named after my dad who was named after his) or that we are even at her house. Is this interest that makes the adults around me recount my not so happy childhood but I soldier on because that's what you are supposed to do. My grandad takes care of my grandma. He was a hardass that basically prevented her from having a normal life and turned my dad and his siblings into the messes they are. But he definitely loves her.

That was the first time I saw my grandma since Christmas of 2024. Well, we had an extended family reunion two months ago but I wasn't near her. The dispute between my dad and his family is retarded but they are like that. They are a bunch of children and for a second me and grandma were on the same level of being complete outsiders to their scuffles. We both are treated like children now. I don't think she remembers me at all but most people forget me anyway.

All I do is prepare mentally to try to mitigate what may come. If you can't fight it, you may as well learn to ride the storm. Music, ambience, gum health and plaque toothpaste, adaptogens and nootropics, exercise and tons of probiotics. I can't afford to be any less stable than I am. My family is more retarded than me.

I have a little cope I want to share:
Having dementia is like being half alive, half dead. Half asleep, half awake. The reason you can't recall your dreams after you wake up is because they are adventures you have with your ancestors. They can be as scary as inspiring. In between the horror and disorientation, I like to imagine that those that endure dementia are taken care off as much by the dead as by the living. You don't have one guardian angel, you have thousands that are dead to meet you once your time comes. Know that when you take care of someone, even if just by being present for as little time as you can spare, you are doing the greatest good one person can do for another: turn suffering into joy if for just a moment.

We are more than the sum of our deeds. We are the echoes of those we love and loved us back. When we march to the great beyond, we take something with us. A story and the dead love stories as much as the living. It can be short and uneventful but is yours and that's all that matters to your family. When lost, sing and if you can't sing, hum. They will find you. And if you don't relate to the relatives you met in life, there are many just as odd as you and eternity to get acquainted with them. And the best part of eternity is the time to remember what we forgot.

I may not remember you, but that doesn't mean you weren't here for me.