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.)

[Alex Hogendorp]

Browsing through the comments section of The Caretaker's 6 Album Series known as Everywhere At The End Of Time. You will come across people who share their experiences of having some form of dementia or having their relatives and friends who ended up having a form of dementia. It's a seriously heartbreaking moment to find out someone that they loved ended up with it and later would no longer recognize them. It's also terrifying to hear from people who have problems remembering thing fearing they're going to end up with dementia one day. It usually happens when people are elderly, around 65 years old but some people are extremely unfortunate to have it during their 20s. As terrifying as it is for one day I might possibly experience this myself, it could just be as easy as bliss and blur for me, it's even worse when your parents or other relatives get it, having to witness the loss of someone who is near and dear to you but at the same time is still alive while feeling completely lost and terrified is a scary thought to have. My father has been worrying himself that me might end up having dementia because of the concussions he had during military service. I barely notice he is in cognitive decline though extremely minor and doesn't have dementia left. In the next few years if in this scenario his cognitive decline does progress is when my anxiety grows stronger. The moment he gets dementia is going to be an extremely anxious ridden time for years to come. My mother is less likely to get dementia however it's still possible she might get it. Each way, they're both extremely devastating, the moment my parent no longer recognize me would have me break down. Then it could be my Siblings if I manage to live decades more. I also remember recently and has been known for months Bruce Willis ended up with dementia. If someone would watch his cognitive decline would be so devastating. This is a support thread for those who suffers from dementia or has family members who suffer from dementia.

 

[Jason Wynn]

My mom is starting to show signs: very forgetful, struggles to articulate herself, sudden extreme mood swings, can’t cook for herself anymore. Coupled with her suffering from heart failure it’s not looking good. I’m 38 and you think you’re going to be able to prepare yourself for when your parents draw near the end of their life, but there’s still that naive little kid in you desperately trying to hold on to the idea that your parents are invincible that bad things can’t happen to them.

My sister and I have stepped up to help care for her, while my two brothers do fuck all. It’s led to some pretty heavy talks about the future between my sister and myself. It’s difficult to see the person who raised you slowly turn into a shadow of who they once were. She’s not so far gone she doesn’t recognize me or anything like that, but she’s no longer the person I see as my mother if you understand.

Dementia is something i wouldn’t wish on my worst enemy, and I have made the decision to just end my own life if I start exhibiting signs of it in my old age rather than be slowly erased little by little. It’s awful.

 

[Sparkling Yuzu]

As terrifying as it is for one day I might possibly experience this myself, it could just be as easy as bliss and blur for me

That's not how dementia works. Dementia is not just memory problems, it causes behavioral problems and widespread cognitive problems. Your brain is literally degenerating (rotting) inside you. It is truly a fate worse than death. It is well known that people with dementia who were excellent people become combative and mean due to their disease. Sometimes it is considered a certain phase/stage "the mean stage".
Lots of stories of people's experiences with dementia on the reddit sub r/caregiversupport, which is a good sub. That can give you an idea of the behaviors seen in dementias. One thing people don't understand about the behaviors is that it's the opposite of a developing child, they can only decline, so any supposed rock bottom you hit is not the actual bottom yet. They eventually lose the ability to use utensils so need finger foods or to be spoon fed, to wipe your ass (can't remember how) etc.
They will spread their shit on walls, put shitty toilet papers in the sink and swear "they did it this way their whole life", use toothpaste as handwash, physically fight being showered, get shit and piss literally everywhere when they try to use the washroom... it's so much shit. My sister worked as a homecare worker once and in a yr a woman with Alzheimer's went from being relatively normalish and able to play cards to chasing her around with a log of poop she took from her diaper bc she didn't know what it was or what to do with it (put in toilet).
Another behavior extremely common in the demented is they have an urge to "wander". Many missing persons cases of the elderly, especially in their 80s are people with dementia who wandered. Same goes for unidentified elderly remains. They are a physical danger to themselves and can be hard to control.
I do not blame Robin Williams for killing himself bc of having Lewy Body Dementia. Canada may legalize assisted suicide via advanced directives eventually. Usually I think the laws go too far but this is honestly a good idea. We should not force people to live with dementia who wouldn't want to put their loved ones through that or live without essentially a soul.
More than one person on the subreddit has talked about how they cared for their relative for decades and now they are in their 70s and their health is being impacted but their 90 yr old demented parent has perfect bloodwork and shows no signs of slowing down.
If you suspect your dad is in the very early stages of cognitive decline, set up a POA, advance directives, if he wants hospice or curative treatment at the end of life or not etc, will, funeral plans. That doesn't even get into the financial issues of paying for memory care or homecare.
Some people think they can be the only caregiver themselves to save their inheritance but they can take a surprisingly long time to die and you will have literally no life the whole time, be on call 24/7, the lifting can cause permanent back damage if you don't get a Hoyer lift and learn to use it right or they are too belligerent or proud to allow you to use it.
Strongly recommend to put your kids first if you have them when considering caring for your parents. Your kid will only grow more and more independent while your demented loved one will only disintegrate before your eyes. Your kids will benefit from your attention and love while your demented relative will not remember or appreciate your sacrifices.
You only have so much to give... remember that. You cannot pour from an empty cup. Memory care and frequent visits are really the only way to stay sane if you ever find yourself in that situation.

Coupled with her suffering from heart failure it’s not looking good.

May I ask, are you going to get her a cognitive test? You can request it from your GP. It sounds like she might have vascular dementia due to the heart problems. I'm sorry, siblings that refuse to help are despicable and you and your sister are good people doing the right thing.
My personal anecdote is I've found that people with vascular dementia tend to be nicer and more docile and Alzheimer's more violent and mean. I don't know if there's anything to back that up empirically though.

 

[Niggolash]

My father died of ALS. I wasn't there when he went, so I never got to say goodbye. The last time we spoke (over video chat) he could barely speak anymore and had no idea who I was. It was an absolutely hellish experience that I wouldn't wish on anyone.

 

[Dean Pentel]

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.

 

[Aunt Carol]

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.

Sometimes yes, sometimes no.

Early dementia/mild cognitive impairment can be masked really well in a familiar environment, even at the doctor's office if they aren't specifically dementia screening. One thing you see a lot is an older person admitted to the hospital for something simple, family swears their baseline is completely oriented, and they're not. Sometimes it's a version of ICU psychosis or the reversible effects of an infection (usually UTI), but sometimes it's just that the social skills are the last to go, and Grandma puts on a great show when she's in her own home where she knows where everything is. (And sometimes it's both and you get to figure out which.)

So your question, does the person themself know they have early dementia? Sometimes they'll confess they're "forgetful," sometimes they'll carry the diagnosis and not know, and sometimes they'll be quick to anger if you even imply they're not the gold standard of rationality and memory.

(Reality orientation is seldom the right choice--does it really matter if it's 1985 as long as everyone's chill--but telling Grandpa he broke his femur and literally cannot walk right now turns into arguing with the Black Knight from Holy Grail.)

It's a terrible catch-22. Decades from now, if the doctor gently tells you that you have early dementia, do you think that the "you" then will head home and do a flip? Or say "lol no I'm fine" and keep on keeping on, keys occasionally in the refrigerator, until it's too late and the part that does the deciding is gone?

 

[Michael Wade]

I knew a family friend who had this happen. It was rough stuff, used to take him out to pizza every month and he just got worse and worse. He could hold conversations, but they were just.... Random and disorganized I guess. Eventually It got to the point that car lights in the distance would completely distract him and take his attention away from even talking.

Frankly I hope they eventually make the shit they pumped Biden full of public because as bad as he looks now, he looks a lot better then he did when he first started campaigning. I remember seeing him in how Biden first started acting....

 

[std::string]

(Reality orientation is seldom the right choice--does it really matter if it's 1985 as long as everyone's chill--but telling Grandpa he broke his femur and literally cannot walk right now turns into arguing with the Black Knight from Holy Grail.)

It's pretty much pointless with dementia. Psychosis or good old-fashioned ICU delirium, sure. For real those Alzheimer patients are going to forget what you said in 15 minutes anyway, so do you want to tell grandma her husband is dead for the sixth time today or do you just tell her his flight got delayed but he'll be here sometime.

Anyway regarding if you know if you're developing dementia or not, it really just depends on the person and the disease. The faster onset or more symptomatic types (early-onset Alzheimer, Lewy body), those patients know. If it takes you a while to tick over from mild cognitive impairment to full-blown dementia then...those patients don't really understand what's going on. Cognition seems to go before your memory.

 

[TheBigZee]

@Lunar Eclipse Paradox Enjoy today and don't worry about tomorrow beyond saving for retirement/emergencies, and making sure your resume is up to date.

 

[Dean Pentel]

Sometimes yes, sometimes no.

Early dementia/mild cognitive impairment can be masked really well in a familiar environment, even at the doctor's office if they aren't specifically dementia screening. One thing you see a lot is an older person admitted to the hospital for something simple, family swears their baseline is completely oriented, and they're not. Sometimes it's a version of ICU psychosis or the reversible effects of an infection (usually UTI), but sometimes it's just that the social skills are the last to go, and Grandma puts on a great show when she's in her own home where she knows where everything is. (And sometimes it's both and you get to figure out which.)

So your question, does the person themself know they have early dementia? Sometimes they'll confess they're "forgetful," sometimes they'll carry the diagnosis and not know, and sometimes they'll be quick to anger if you even imply they're not the gold standard of rationality and memory.

(Reality orientation is seldom the right choice--does it really matter if it's 1985 as long as everyone's chill--but telling Grandpa he broke his femur and literally cannot walk right now turns into arguing with the Black Knight from Holy Grail.)

It's a terrible catch-22. Decades from now, if the doctor gently tells you that you have early dementia, do you think that the "you" then will head home and do a flip? Or say "lol no I'm fine" and keep on keeping on, keys occasionally in the refrigerator, until it's too late and the part that does the deciding is gone?

Alright, so not as simple as I hoped. That's life, yeah?

Thanks for the info.

 

[Sparkling Yuzu]

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.

Some people with early stage dementia can feel themselves slipping away or a sense of "something not right" but eventually, they suffer from anosognosia which means being unaware of their condition.
They will do absolutely retarded shit while swearing "I did it this way my whole life". One woman on r/caregivingsupport reminds her mom she has dementia but the mom tells people the daughter caring for her actually has dementia, not her. lol
You may legitimately not be able to recognize it if you do have it due to the natural effects of the disease. Especially if you are advanced enough to suffer anosognosia. It's like how schizophrenics think they are totally fine and rational.
All you can do is maintain a healthy weight, regular physical exercise, healthy diet, avoid benzodiazepine addiction/overuse and head injuries. Try to do cognitive activities you enjoy like new hobbies that challenge your mind. You can't control head injuries you didn't cause or mutations in the APOE gene.

Anosognosia is a condition where your brain can’t recognize one or more other health conditions you have. It’s extremely common with mental health conditions like schizophrenia and Alzheimer’s disease. This condition isn’t dangerous on its own, but people with it are much more likely to avoid or resist treatment for their other health conditions.

https://my.clevelandclinic.org/health/diseases/22832-anosognosia

For real those Alzheimer patients are going to forget what you said in 15 minutes anyway, so do you want to tell grandma her husband is dead for the sixth time today or do you just tell her his flight got delayed but he'll be here sometime.

This is a really important thing anyone interacting with someone with dementia should know. They call it "therapeutic lying/therapeutic fibbing". Usually lying would be bad, but here it's actually good for them. Otherwise you would be basically emotionally abusing them by making them relive the pain of knowing so and so died... over and over again.

 

[IBrokeBob]

31 year old pregnant woman who has early onset Alzheimer's. Such a sad story.

https://m.youtube.com/watch?v=mbtLUChdUlc

I come from a family with an alz history. My granparent and parent had it among other fam members. I took care of my parent in their last months of life and they thankfully passed quickly but it was agony in the last few months before death.

Our family has had frank talks about this. We have a family template for our dnrs and pallative care mandates and our poa paperwork. We have all been very open about our wishes. We have secret pacts about taking each other skydiving or mountain climbing and having an accident as a quick checkout method.

 

[Alex Hogendorp]

31 year old pregnant woman who has early onset Alzheimer's. Such a sad story.

https://m.youtube.com/watch?v=mbtLUChdUlc

I come from a family with an alz history. My granparent and parent had it among other fam members. I took care of my parent in their last months of life and they thankfully passed quickly but it was agony in the last few months before death.

Our family has had frank talks about this. We have a family template for our dnrs and pallative care mandates and our poa paperwork. We have all been very open about our wishes. We have secret pacts about taking each other skydiving or mountain climbing and having an accident as a quick checkout method.

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.

 

[Tism the Return II]

It's never okay but you learn to cope with it. So what if they're telling you the same thing for the fourth time in the span of 30 seconds? You can find some kind of comfort in the nice memories they do have, the things they like to talk about even if they go over and over and over and it's making you go crazy yourself.

 

[Sparkling Yuzu]

It's never okay but you learn to cope with it. So what if they're telling you the same thing for the fourth time in the span of 30 seconds? You can find some kind of comfort in the nice memories they do have, the things they like to talk about even if they go over and over and over and it's making you go crazy yourself.

There is a lot more to dementia than that. It can completely change a person's personality (usually for the worse) and ability to function in even small ways like using a fork, wiping their bum and washing their own hands.

 

[Alex Hogendorp]

There is a lot more to dementia than that. It can completely change a person's personality (usually for the worse) and ability to function in even small ways like using a fork, wiping their bum and washing their own hands.

A fork to them would be perceived as something like this.

 

[Aunt Carol]

Speaking of dementia and perception, it's pretty wild what anti-elopement decor people use to keep demented people out of dangerous areas. In a private house, painting the doorknob so it's the same color as the door to make it no longer read as a door, or putting a stick-on mural over the door and the wall. At nursing homes, you can use dark carpet borders to delineate which ways are OK to wander; demented people usually don't want to step into a puddle or a pit and will follow the lighter-colored carpet as a safe path.




Worked at a place once that redecorated with no input from staff (as if you have to be told). They chose a dark background with scattered lighter zigzags. Of course, residents kept bending over to pick up the zigzags.

 

[Sparkling Yuzu]

10 Strange Signs Of Dementia That Are Less Obvious
It’s not just forgetting where you put your car keys.
By Bev Potter — Written on Mar 10, 2023

The revelation that Bruce Willis has been diagnosed with frontotemporal dementia at the age of 67 adds to the growing awareness that dementia isn’t just one disease. In fact, there are hundreds of different types of dementia.

When Robin Williams died, we were introduced to Lewy body dementia, a form of dementia mainly related to thinking, memory, and movement. Williams’ despair and probable psychological symptoms led to his shocking suicide.

Willis, whose career evolved from light comedy in the 1980s television series Moonlighting to action hero, has stayed out of the public eye as his symptoms have progressed.

After almost a year of using the term “aphasia” to describe his condition, the star’s family has revealed he has FTD.

Frontotemporal dementia is itself divided into two types: behavioral variant FTD (bvFTD), which mainly affects behavior and personality; and primary progressive aphasia (PPA), a group of dementias mainly causing a loss of speech and language abilities.

The most common form of dementia is Alzheimer’s disease, which affects 60% to 70% of those classified as having dementia.

But despite popular perception of the disease, there are early signs of dementia that go beyond forgetting where you put your car keys or momentarily forgetting the names of family and friends.

Here are 10 strange signs of dementia that are less obvious than you think:
1. Failing to recognize sarcasm and spot a liar.
Research has shown that people with both FTD and Alzheimer’s disease tend to have a harder time recognizing sarcasm. They become more literal in their understanding of language and lose their sense of nuance and tone.

Another unusual sign of dementia is that people with FTD often can’t tell when someone is lying, although people with Alzheimer’s disease can. This particular symptom has led to the creation of a “Scam Squad” where I live after one elderly resident lost over $100,000 to a con artist who called her repeatedly and preyed on her inability to recognize his lies.

2. Falling more frequently than you used to.
Frequent falling could be an early signal of Alzheimer’s disease, according to a study published in October 2021 in the journal Frontiers in Neuroscience. The study found that older adults who later develop Alzheimer’s disease are at higher risk for falls and other accidents in the years prior to their diagnosis. Another reason to practice your balance exercises.

3. Disregarding the law and other social norms.
Some people with dementia lose their sense of social norms. Surprising dementia symptoms can include shoplifting, breaking into someone’s house, inappropriate interpersonal behaviors such as sexual comments or actions, and even criminal behavior, according to a review published in October 2020 in the journal Cortex.

Early-onset dementia can hit people as early as their 30s and 40s and be mistaken for drug use or mental illness by the court system since they appear too young for a disease associated with the elderly.

4. ‘Reduced gaze’ and trouble reading.
When a person loses the ability to move their eyes normally, it’s known as “reduced gaze.” We move our eyes frequently and track objects without even knowing we’re doing it. People showing early signs of dementia may look like they’re staring a lot, and they may skip lines when they read.

5. Eating rancid food and nonfood objects.
People with dementia will sometimes eat nonfood objects or foods that are rancid or spoiled. It’s easy to understand that their taste buds and sense of smell may have weakened. I do a weekly scan of my mom’s refrigerator looking for things that are past their prime.

But eating nonfood items is more difficult to explain. One theory is that a person with dementia may simply no longer know which items are food and which aren’t.

6. Not understanding what objects are used for.
Searching for the right word is fairly common. But forgetting not just the names of objects, but what they’re used for, is an early dementia symptom. Oddly enough, people who are losing this knowledge can be very competent in other areas of their lives, again demonstrating that dementia comes in many different forms.

7. Inappropriate behavior and loss of empathy for others.
If someone who is usually considerate and polite starts to say insulting or inappropriate things, and appears to be oblivious or have no concern or regret about what they’ve said, they could be exhibiting an early sign of dementia. They may lose both the ability to read social cues and the ability to understand why it’s not acceptable to say the things they’re saying.

One of the most difficult aspects of caring for someone with dementia is remembering that it’s not the person speaking — it’s the disease.

8. An increase in compulsive, ritualistic behaviors like hoarding.
Hoarding is one possible sign of dementia that captures the public imagination, as is obsessive-compulsive behavior. If someone slowly slides into odd behaviors such as saving scraps of paper or compulsive cleanliness (or the opposite), it might be time for a neurological exam.

9. Having a hard time managing money.
Money management is complicated and requires a level of focus that is one of the first things to go with Alzheimer’s disease. Especially now, as check use disappears and our money migrates to the cloud, people with declining cognitive skills will have increasing difficulty with money management and will need a guardian or caregiver to help them pay their bills.

10. Difficulty forming words or garbled speech.
This symptom is most obvious if you spend a lot of time with your loved one. Their language may become garbled to the point where you have to guess what they’re saying, even though their mental processes are still fairly intact. They simply have increased difficulty actually forming the words to speak.

Someone in the world develops dementia every 3 seconds. Hopefully, as awareness of the condition grows, support will be put in place to help families and caregivers cope.

10 Strange Signs Of Dementia That Are Less Obvious

It’s not just forgetting where you put your car keys.

www.yourtango.com

Strange Signs Of Dementia That Are Less Obvious | YourTango

archived 20 Apr 2023 03:47:36 UTC

archive.ph

My step grandfather had dementia for a lil while (less than a yr) before he died of colon cancer. He started picking his nose right in front of you. He had never done this before. God I miss him, but I guess I'm glad he didn't have to live like that for yrs.

 

[Mr Snrub]

My gran died last year after suffering with Alzheimer's for the best part of 5-6 years, aged 86. The day she forgot who I was broke me.

If you do have a loved one who is starting to show signs of dementia or Alzheimer's, please consider getting power of attorney in advance before they decline. My dad was delayed in sorting this out prior to her declining which created an absolute nightmare in care, money issues etc (granted this was during the UK lockdown when she started to decline and everything was shut).

 

[Aunt Carol]

If you do have a loved one who is starting to show signs of dementia or Alzheimer's, please consider getting power of attorney in advance before they decline.

This is really important advice. There's a catch-22 about being too demented to consent, at which point the government has to get involved.

It's not a problem if there's only one next of kin and the demented person is floridly demented, but there are so many complications to every situation. Maybe you have a local caregiver daughter doing all the work vs. the daughters flying in from California who want a PEG and restraints. 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.

The need to have PoA healthcare/financial comes up, by definition, during a crisis. Better to have the paperwork on hand that says you're the decisionmaker so you can concentrate on helping your loved one with their problems, not the second-degree problems of paperwork.