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.)

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Maybe the demented person can answer all the questions right for now, enough to be allowed back to their house of squalor and continue PayPal'ing money to scammers.

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

Happened to my friend's MIL who had Alzheimer's. She'd literally spend hours a day talking to scammers in her room and writing checks for thousands of dollars. My friend would just come to "mail them off" at the end of the day, void them and shred them.

Kept her busy, at least, but it would've ended incredibly badly if she lived alone.

 

[ForgedBlades]

Good idea for a thread. I unfortunately have a lot of experience.

My dad's mom started getting bad about six or seven years before she died of heart problems. We know it started getting really bad when she would call our house wondering if anyone had seen my grandfather who had been dead for years. It's amazing how true the regression to an infant behavior is. By the end she had this baby doll that she would "feed", "tuck in", and talk to exactly like a child would do with their dolls.

I never met my great-grandfather, but he apparently got to the point where he was completely non-verbal and immobile. The story was he was skin and bones by the end, weighing less than 100 pounds and would spend all day curled up in the fetal position. My grandmother sticks to the conspiracy that the nursing home kept him alive years longer than they should have (i.e. violating DNR orders and keeping how dire the situation was from my great-grandmother) just because he had money and they wanted to milk his stay for all he was worth. Don't know if I buy it, but still. What makes the decline especially rough was the fact that he was fucking brilliant. Multiple degrees, Ph.D., patents, etc.

 

[Sparkling Yuzu]

It's amazing how true the regression to an infant behavior is. By the end she had this baby doll that she would "feed", "tuck in", and talk to exactly like a child would do with their dolls.

That's fucking tragic, I'm so sorry you went through that. Does she have vascular dementia? A lot of people don't understand the memory loss is more than that, you literally lose everything and regress until you only have your earliest memories.

 

[Septictic]

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.

 

[XYZpdq Jr.]

I've been amazingly fortunate that the two people I've worked with who had major memory issues were generally in good spirits, once was some dude who fought for Canada in WWII who had parkinsons, he knew there was something up with how the food kept appearing in the morning, but he attributed it "the night crew" and didn't really care.
another was a guy who had a stroke during a car crash, and he'd worked with elderly people for decades so he knew what to be on alert for and a lot of really easy stupid shit to do like "just write it down"

It's a massively different thing if they accept they've got brain problems and don't mind asking for help.

 

[TheCakeIsALie]

I was directed to this thread. I worked for four years caring for people with dementia and Alzheimer’s in s program. My own grandma had vascular dementia.

The worst part to me isn’t the memory loss but the aggression and violence. Sweet people become very agitated and awful to deal with. I had a few that were so bad they caused physical fights several times and were removed from the program.

One guy had Alzheimer’s and glioblastoma, that was particularly awful. I hope i never get it. I’m taking myself out if I do.

 

[Sparkling Yuzu]

My own grandma had vascular dementia.

My great grandmother had that. Luckily, she was never physically violent and I loved sitting out on the veranda and talking to her as a kid, when she lived with my grandparents. I didn't mind that she repeated stuff, lol.

 

[TheCakeIsALie]

My great grandmother had that. Luckily, she was never physically violent and I loved sitting out on the veranda and talking to her as a kid, when she lived with my grandparents. I didn't mind that she repeated stuff, lol.

oh man. My grandma would chain smoke and forget she would have cigs lit and would light some more. It was kind of funny.

She never changed in personality, but some of the patients absolutely did. I’m talking really nasty. Oh and wandering. Running after people was common. Since it wasn’t a facility, we were not allowed to lock anything.

 

[Sparkling Yuzu]

She never changed in personality, but some of the patients absolutely did.

I believe you, I've read a lot about it. My mom's friend has worked in homecare for over a decade. Crazy some of the stuff she deals with.
Her dad was a very intelligent man and engineer but now he has Alzheimer's, is getting grumpy and saying mean things to people when he goes in public/muttering mean things about people under his breath (he would have never done this while healthy) and cannot be trusted with a microwave bc he almost caused a fire in his assisted living home. He used to do extensive work on his old house constantly, now even a microwave is too complicated...

I’m talking really nasty. Oh and wandering. Running after people was common. Since it wasn’t a facility, we were not allowed to lock anything.

The wandering is sooo dangerous. I sometimes look through missing persons and unidentified descendents databases for "fun" and the amount of people in their 80s with known dementia who wander off is insane. It's such a dangerous symptom.
They recently found one in the UK near the railroad tracks about 4 miles from his home, a guy in his 80s who was delirious from a fever and sent home alone. He wandered off and died and was not discovered for 13 yrs:

Body found by railway line in Yorkshire identified as man who went missing in 2009

British Transport Police have identified the body of a man found beside a railway line in Hull as a pensioner who went missing in 2009.

www.yorkshirepost.co.uk

Archiving in progress.....

ghostarchive.org

 

[Aunt Carol]

They recently found one in the UK near the railroad tracks about 4 miles from his home, a guy in his 80s who was delirious from a fever and sent home alone. He wandered off and died and was not discovered for 13 yrs:

Body found by railway line in Yorkshire identified as man who went missing in 2009

British Transport Police have identified the body of a man found beside a railway line in Hull as a pensioner who went missing in 2009.

www.yorkshirepost.co.uk

Archiving in progress.....

ghostarchive.org

There was an Australian man with dementia, Bernard Gore, who got lost in the access stairs of a mall and died. In that case, the family was used to letting him roam freely, but dementia doesn't exactly send you a registered letter when it's going from moderate to severe. (The mall was also partially at fault--doors weren't clearly marked as one-way, and there wasn't a routine security check--but it was worrying how blasé the family interviews were about him wandering off and finding him eventually, and that they didn't push the issue of him wearing a locator.)


What makes demented people harder than little kids to care for isn't just the size, it's that they retain so many skills, memories, and an understanding of dignity. Worst case scenario, you can pick up a half-naked 2-year-old and carry them back in to get pants on. An affected adult is going to argue with you about being able to dress themself, and you being the child. And they have muscle memory of how to drive, while a toddler would have to get lucky to even get the parking brake off.

 

[Septictic]

What makes demented people harder than little kids to care for isn't just the size, it's that they retain so many skills, memories, and an understanding of dignity. Worst case scenario, you can pick up a half-naked 2-year-old and carry them back in to get pants on. An affected adult is going to argue with you about being able to dress themself, and you being the child. And they have muscle memory of how to drive, while a toddler would have to get lucky to even get the parking brake off.

Most people aren't capable of all the fawning involved in caring for demented people. And when upset they can use maximum force, which is dangerous for everyone.

 

[booklover]

I don't have any experience with this directly, so I'm asking you all. Can those who suffer from dementia see it coming? I ask because I suspect I'm going out this way. I just want to know if I can tell when it's onset so I can punch my own ticket and be done with it.

Usually, people with dementia, any kind, know that something is wrong with them, with one exception and that is frontotemporal dementia. One characteristic of it is that people who have it are unaware that anything is wrong with them, which may seem great for them but not so great for those around them.

I know a woman who, before putting her husband in a nursing home, had to (among other things) bail him out of jail a couple times because he was peeking in the neighbors' windows, something he NEVER did before.

Robin Williams' LBD was not diagnosed until his autopsy; I had heard that he had "symptoms of Parkinson's" and LBD is indeed like a cross between Alzheimer's and Parkinson's, and worse than either. One of the most cruel things about LBD is that people who have it can live in the final, terminal phase for incredibly long periods of time, as in 10 years or more. He really did himself and his family a favor by choosing to end his life; I have never, since hearing he had LBD, considered his death to be a suicide.

Having Alzheimers before being middle aged is extremely unfortunate. Could you imagine being born and then growing up you find your mother doesn't recognize you? I heard a story about a girl in China who get dementia when she was 17. It's a very eerie feeling being older than a dementia patient. I wish the best for them. Dementia is an extremely cruel disease.

One wonders if the 31-year-old woman got extra copies of a bad gene. Huntington's usually strikes in middle age or later, but if the aberrant gene is "bigger" (see footnote), let's just say, the "bigger" the gene, the earlier the onset. My parents knew of a couple whose adopted daughter developed it in her late teens or early 20s. Thankfully, she did not have any children.

I also knew a woman whose daughter, as a teenager, developed Alzheimer's-like symptoms, and fortunately she saw the right doctors who had seen the rare autoimmune disorder she had, and it was treated and she made a near-complete recovery.

Footnote: The Huntington's gene is part of a set of repeating DNA codons, and if a person had >15 repeats, they WILL eventually get it. At 15 repeats, they will probably die before they have symptoms, or be misdiagnosed, but if they have repeats in the hundreds, it will strike much earlier. I worked, years ago, with a woman whose father was believed to have Alzheimer's until SHE got an HD diagnosis in her 40s! That was quite a devastating blow to everyone; she didn't have any children either. ETA: And she died in 2021! She lived with this nightmare for more than 15 years.

 

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One wonders if the 31-year-old woman got extra copies of a bad gene.

There are a few alleles that guarantee you'll get Alzheimer's by 30 at the latest, but I think they're all isolated to small ethnic groups in South America.

 

[Alex Hogendorp]

Good idea for a thread. I unfortunately have a lot of experience.

My dad's mom started getting bad about six or seven years before she died of heart problems. We know it started getting really bad when she would call our house wondering if anyone had seen my grandfather who had been dead for years. It's amazing how true the regression to an infant behavior is. By the end she had this baby doll that she would "feed", "tuck in", and talk to exactly like a child would do with their dolls.

I never met my great-grandfather, but he apparently got to the point where he was completely non-verbal and immobile. The story was he was skin and bones by the end, weighing less than 100 pounds and would spend all day curled up in the fetal position. My grandmother sticks to the conspiracy that the nursing home kept him alive years longer than they should have (i.e. violating DNR orders and keeping how dire the situation was from my great-grandmother) just because he had money and they wanted to milk his stay for all he was worth. Don't know if I buy it, but still. What makes the decline especially rough was the fact that he was fucking brilliant. Multiple degrees, Ph.D., patents, etc.

Alzheimer's is a very cruel and wicked disease. The fact it pushes it's patients more viciously than the mainstream media could ever achieve with the most impressionable terrifies me. It's already bad enough uncovering any form of psychological warfare they were waged on in the past but losing all cognitive ability to discern any logical fallacies your brain gives you is beyond insanity. And then nothing make sense anymore and you cannot make out anything of what's left anymore. The worst part about this is that patients cannot express how much they hate getting Alzheimer's during it's late stages. Everything has become completely futile. There are some things worse than death and Alzheimer's in well within that category.

There are a few alleles that guarantee you'll get Alzheimer's by 30 at the latest, but I think they're all isolated to small ethnic groups in South America.

I heard of a girl in Beijing, China who got Alzheimer's at the age of 17. Just imagine graduating high school only to gradually forget everything just right after that. I cannot put in words how cruel that is.

 

[NoReturn]

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.
How many people are we going to be seeing going through this as the boomers age? People whose parents left nothing for them, who spent it all until nothing was left and then had their children take care of them until they die?
Who takes care of those children when they're the same age?
How awful.

 

[Aunt Carol]

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.

You see this a lot in people with alcoholic dementia. It hits relatively young and their adult children are, by definition, children of alcoholics. Lot of people martyring themselves in hopes that the shell of what used to be their abusive parent will one day return the love they've always been trying to get from them.

It'd be rad to be able to support a family on a single income and have one parent stay home and care for the kids and help Grandma with the one or two ADLs she needs, but Grandma also helps with the kids. That's not the model any more, for multiple reasons. It used to be that when you lived to 80, that was because you were healthy in mind and body; when an elderly person died it was reasonably quick. Now, we're just good at keeping people technically alive.

For the most part, the West isn't throwing their venerated elders in a nursing home and thus losing their age-old wisdom, for which the noble savages are looking at us in sad disbelief. Those fount-of-wisdom elderly are still trucking like they always have been, but nursing homes are a limbo of incarnate ghosts.

An interesting term to explore is "Sandwich Generation," for people who are caring for their elderly parents at the same time as their own children. Imagine having to watch someone you love hit their developmental milestones backwards.

 

[NoReturn]

It'd be rad to be able to support a family on a single income and have one parent stay home and care for the kids and help Grandma with the one or two ADLs she needs, but Grandma also helps with the kids.

What if the adult children don't even have kids? If they've chosen not to have them for fear of being like their own parents (or other reasons) it feels like they'd face pressure from society like "Oh you need to take care of them, you have nothing else to do." but I don't think that's true.
Given the state of things, it's pretty fucked up that these people would be expected to financially support their own parents at their own expense, knowing that when they get to that age themselves they will have no support nor any money. (I know that's getting into the le eternal Boomer discussion, but I think it's relevant).

An interesting term to explore is "Sandwich Generation," for people who are caring for their elderly parents at the same time as their own children. Imagine having to watch someone you love hit their developmental milestones backwards.

 

[Aunt Carol]

What if the adult children don't even have kids? If they've chosen not to have them for fear of being like their own parents (or other reasons) it feels like they'd face pressure from society like "Oh you need to take care of them, you have nothing else to do." but I don't think that's true.
Given the state of things, it's pretty fucked up that these people would be expected to financially support their own parents at their own expense, knowing that when they get to that age themselves they will have no support nor any money. (I know that's getting into the le eternal Boomer discussion, but I think it's relevant).

I think you're saying the adult kids don't need to care for the parents, not that they don't face pressure from society, or from the rest of the family, because that happens a lot. Of course Suzy will take care of Mom; she lives nearest and she's just a homemaker/she's just part-time/she's fully employed and raising her own kids, but you see, she lives nearest. No we're not going to help, or give her money for respite care once in a while. As soon as Mom's in the hospital, though, we're flying out and demanding everything be done so you can all see what good adult children we are, not like Suzy who was going to let them kill Mom. Mom definitely wants a PEG placed; it was her life's dream to have her wrists restrained forever so she doesn't pull out her feeding tube. OK bye see you Christmas maybe.

My crackpot soapbox: if the US had mandatory national service but one of the options was nurse's aide (other options being armed forces, scanning/transcribing records, doing something with national parks, etc.) then a bunch of legislation would just naturally follow in 20-ish years.

Congregate care settings don't have to be hellholes (and many of them aren't now), but they need to be adequately staffed and routinely inspected. The invisible hand of the marketplace isn't cutting it, and there are going to need to be a lot more beds soon.

 

[WE'RE ALL GONNA]

I don't have much experience with dementia, maybe perhaps the passing my grandfather who suffered of a stroke, slow recovery and then died of another stroke. Couldn't really verbalize his thoughts and hardly recognized me but he was coherent to a certain degree. My late grandmother was showing signs of cognitive decline, but so was everyone in 2020.

I just wanted to post this as a helpful post for everyone who some family history of dementia, with supplement and lifestyle advice. There are ways to prevent, delay or at least push back triggering Alzheimer's into an age old enough things won't matter much anymore.

Methylene Blue: A chemical made in 1876 that was used to stain things blue. Turns out the chemical had some other side effects, such as being an effective way of treating methemoglobinemia, which is a disorder preventing blood cells from properly carrying oxygen to your body. Also used to help fish recover from wounds, people just drip some blue in a bucket and let their fish rest. It also used to be the main treatment for malaria, carbon monoxide poisoning and cyanide poisoning. The potion clone can help promote the mitochondria (the powerhouse of cell), and acts as an antioxidant resulting in improved memory and mood. Like anything, you should have it in moderation or it can fuck you up (Like 1 drop of 1% USP grade in a cup of water when you start). Also not recommended to be used with antidepressants or any SSRIs. It's not a miracle drug, just a supplement.

Exercise: This is pretty much the most important you need regardless of what age, how poor or rich, whatever you are. Use it or lose it, that's your body. Do at least 30 minutes of exercise a week (Walk for fuck's sake, you fat fucks). Like how your muscle atrophies if you don't move whatsoever for an extended period of time, this applies to your brain as well. Use your head, play video games, play chess, talk with friends, do art, make music, doesn't matter, do whatever's stimulating even if you're bedridden- because if anything stagnation will kill your body. Why do people who go to retirement homes die so quickly? It's because they do jack shit. If your body can tell you're doing nothing it's going to be nothing.

Externalities: Don't drink coffee. Don't drink alcohol. Don't smoke cigarettes. Don't do drugs. Don't eat sugar excessively. All of these things are literal poison and you are bombarded by larger society to indulge in these "small vices" in your journey of life. Don't be fooled by those absolute cretins, these fucking fleshnigglets. The greatest danger is not in the single pill, the brown needle or the cup of coffee, it is habit. Habit is the most invisible and important thing. Habits compose most of your life. Look at soon-to-be-late Metokur or Ralph. Both are pitiable men, slaves to habit. If you rely on these externalities as a crutch, they will consume you. Death comes to all of us and it's on you how good the meeting goes.

 

[Harbinger of the Demiurge]

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. He's not doing a stellar job either and the rest of the fam needs to help him with stuff a lot. It stresses him out - both the caring part and the "you suck at this and you need help" part too.
No big signs of cognitive decline but physically she can't do anything. Breaks my heart. As I was saying goodbye the last time I saw her she reached out, grabbed my hand, and kissed it. That was probably the most she'd moved in a week aside from going to the bathroom. Nearly brought me to tears.

Don't get old Kiwibros.
Also this is my 100th post so I'm dedicating it to her. God bless her. I love you, Grandma.