Let me start by saying that although I am 58 and my family has a history of both, I am not worried about it, but that if it did happen to me, I am not sure it is a bad way to go out.
Your grandmother has one or the other, she remembers very clearly what happened 50 years ago but can’t remember that you are her grandson. Or believes that she is talking to someone else.
This has not happened to me, it’s just an example. But we have all seen movies where that was the case, and all the family members are distressed because they are not talking to the “real” person and I can understand that. But they always try to talk them back into “reality.”
But let’s say that I am lucky enough to live for 20 or 30 more years and become afflicated. Might I sit in the old folk’s home reading a book and having an imaginary conversation with the author, or one with my friend who is not there but I believe is there? We all have imaginary conversations, but we know they are imaginary.
I would not think that the person with has “lost his mind” would realize that. I just thought of “Rain Man”. On the trip they stop somewhere along the line, and there is a man rambling on and on about American history. And he knows a lot about it, and is reciting but no one is paying any attention, because he is a crazy old man.
But he is having fun, he is educating the people in the room, at least in his mind.
I think I would rather go out that way, instead of being fully conscious that I was going to die from whatever the thing was that was going to kill me.
I am not afraid of dying, but I think I would rather go out living in a dream world
We noticed odd behaviour with our mother starting a little over a year ago she’s 72. We’re positive it’s some form of dementia and in the process of sorting this all out - PSA to all, if the parents you love don’t have power of attorney make them get it now. We’re in a fn mess because my mom doesn’t have one.
She is happy for now in her own little world. She just loves watching TV, listening to French music all afternoon then going to bed at 6PM. From what I’ve researched it’s going to get worst and very confusing for her and it’s going to scare and frustrate her when it happens.
Just dementia things
Sometimes soils herself in the morning, will just wipe and not ditch the clothes and not take a shower
Repeats the same questions over and over again
Conversation is limited and all over the place with no rhyme or reason with anything she says most of the time
Thinks every man she comes across in public no matter the age is flirting with her
Believes her condo board is stealing money from her, because of monthly fees and expenses for repairs every couple of years.
Whatever she offers you, we’ve learned to just go with it eg. want a coffee ? Otherwise she’ll just keep asking.
refuses to turn on the heat, it’s winter here -20 today - even when I visit to check up, bring her food, cook for her. I wore my winter coat the last time I was there. She’s proud of keeping her electric bill so low.
says inappropriate things around my 9 yr old niece,
eats horribly now
can’t take her medication properly obviously
Is suddenly racist, never was before.
IMO the worst way to die would be via this disease, I’d rather go out with liver failure than slowly losing your my mind, forgetting your family, shitting my pants, and whatever other bullshit comes along with it for the next X amount of years.
Going out with liver failure is not easy, very painful, and all patients dying in a hospital are shitting into their bedpans. You would rather experience that painful death than forgetting your family, which I would hope they would understand because it was not your fault?
I am not trying to argue with you, I get your points.
I have two possibilities. I an completley rational and know I am going to die in a week or two. Or I live in a dream world for my last years where everything is great.
I am perfectly OK with the fact that I am going to die, I go to sleep forever, I won’t even know I am dead, or that I have ever been born. I don’t have to worry about anything
That is my rational side. I would rather die on the dream side.
They are being awakened in what they think is middle of the night, by people they don’t know, in a place they don’t recognize. Every time they say ‘up’ they are corrected no it’s ‘down!’
This isn’t your home, you think you are a prisoner. Your dinner comes, you think you’re being poisoned.
EVERY. SINGLE. THING. You thing is ‘this’, you are told, ‘No, it’s NOT!’. That’s not your dead wife, this is your grandchild, the war is over, etc, etc on endlessly.
For most patients this is understandable destabilizing, aggravating, frustrating and even terrorizing. How long could you remain passively unconcerned in such a world? Where everything is upside down and makes zero sense.
The OP seems to have a rather rosy picture of the reality of this disease, in my humble opinion.
I’m sorry, but I think it would be a horrible way to go. I’d rather someone put me out my misery somehow.
There are a few things that terrify me:
Locked-in syndrome (a major stroke that basically leaves you paralyzed from the nose down (your eyes are the only thing that you can move). But–you can still feel everything, like pain, hunger, etc… An itch that you can’t scratch can drive you to the brink of madness. I had a brother-in-law who had that and we unplugged him.
Dying in a fire, or perhaps even worse, surviving and having to go through the healing from it, which I have been told is extremely painful.
Losing my mind or faculties due to a thing like Alzheimer’s or dementia.
Most of the times it’s very frustrating dealing with her, but I don’t blame her and bring as much patience as I can. But yes, I’d take liver failure over that . One or two weeks and it’s over compared to five plus years of dementia. I lost my step-father due to liver failure, while it was hard to watch him in pain with yellow skin. It was over relatively quickly.
From my research into it, dementia patients are due to experience extreme fear, confusion, outbursts, loss of ability to speak, and depression as this progresses. Like I’ve mentioned she’s content now in La-La land, and semi-grateful for that but we know that’s going to change.
Also not trying to argue with you, you do you - just my 5cents.
This was my grandmother. She was convinced that she could live on her own and basically spent all of her time complaining that she should be able to get an apartment.
She couldn’t remember to take her medicine, she almost electrocuted herself (water and electricity don’t mix) and would forget to eat. She originally had a microwave in her room at the nursing home, but she would forget stuff in it, meaning there was a mess in the microwave, from overcooking or from being left there for days.
Unlike some, she never got violent, but people got tired of listening to her complain about her lack of freedom. She never accepted that she needed help. As far as she was concerned, the last 1.5 years of her life were hellish.
If you have no interest in your identity as a thinking, somewhat rational human, that could be the case. Of course, hope you do not end up not only unaware and incompetent, but also afraid, confused and in pain.
My MIL died a long death related to dementia. Yes, for a large part of it, she was content to just smoke and watch TV, and have other people (family, live in help, and then assisted living) take care of her. While her loved ones got to see her slowly cease to be the person they used to know and love.
This may be improper for GQ, but IME it really is stupid to suggest senility/Alzheimer’s is anything other than horrible and tragic.
My father and several of his siblings had Alzheimer’s. I’m now at the exact age he was when he was diagnosed. Every time I forget something I worry.
I remember him saying, “I’m not the man I used to be.” He could remember when his mind was intact. He could remember some of the things he used to be able to do.
My mom went through hell with him before he passed. It took a tremendous toll on her own health. I have no intention of putting my husband through that. If it comes to that, I’ll find a way out while I still can.
My Dad died from the complications of good old fashioned Senile Dementia - essentially a hardening of the blood vessels in his brain and a subsequent shrinkage of brain tissue.
It was not easy.
He knew he was losing his faculties, but not which ones or how badly. He was extremely intelligent, which meant that he was able to hide his problems for far too long. It basically resulted in my sister and I having to whisk him out of his home and put him in a closed ward in an assisted living facility. We tried to recreate his home in a single room with his own furniture and favorite things, but he still knew he was essentially a prisoner.
He HATED for anyone to do anything for him, and he ended up having to have someone all the time because he would forget that he couldn’t walk well unassisted.
His life ended when the dementia had progressed to he point he couldn’t swallow well enough to avoid choking and pneumonia.
It. Was. Awful.
My husband suffered a terrible head injury several years ago and his biggest fear is that it has increased his chances of Alzheimer’s. It’s my fear too.
Our experiences w/ my MIL contributed to our having discussions w/ our kids, in which we said we never wanted our kids to think of and do for us in the way we did towards MIL. We expressed our clear preference to be dead, and discussed w/ our kids the point beyond which we would not wish to exist. My wife and I will assist each other commit suicide if it got to that point, and 2 of our 3 kids agreed to assist.
My personal opinion (which others may not share) is that a desire to be kept alive with advanced dementia is supremely selfish. To be sure, being selfish is a valid choice, but not the way I wish to act and be perceived/remembered.
My Dad died of Alzheimer’s. The fancy memory care facility was OK for a few years, up until he started falling a lot and injuring himself. The last time he fell, they said he could not come back. So the rehab place moved him to a hospice where, thankfully, he died shortly afterwards.
Towards the end, he had no idea where he was or who he or anyone else was. He could not talk and I doubt he could think much either. Emotionally, it must have been very upsetting.
There was no point in visiting him because he would not know you or remember that you were there.
I know the old him would have been embarrassed, sitting there, helpless in his own shit, unable to talk or form coherent thoughts.
On the plus side, early on, his brain melting did turn him into a nicer person for awhile. Was that person him?
When they do not die of pneumonia, often people die of Alzheimer’s when their brain is so atrophied that they can no longer breathe. That does not sound like a fun or dreamy way to go. That is the way he died.
Gotta agree with everyone but the OP.
Dementia and Alzheimers, watched what happened to my Grandmother and her sister. The descriptions of the experience by those who have dealt with it are spot on and I’ll only add this. Don’t start with just any retirement home, if dementia and alzheimers is there, just go straight into a “memory care” facility.
Just another example: my mother had Alzheimer’s, and it went through phases. Some were pretty nice.
There was a stretch where she read voraciously, mostly those multi-generational family sagas. She would read, happily engrossed, from mid-morning to bed time (about 7:30 at that point) with short breaks for meals and bathroom trips and such. You could legitimately say she was leading a near idyllic life. The only problem, at first, was finding enough books to keep her supplied.
And then that stopped being a challenge, because we discovered that she didn’t really remember the books much past closing the cover. While reading she could follow that Mary was married to William but she’d used to love James and they’d been tragically parted or whatever. She could retain that well enough to understand when Mary’s child fell in love with James’ child later on. But let any time at all pass, and the memories would, not just fade, but be wiped away completely like a white board being erased over night. We gradually found a few books that absolutely suited her tastes, where what happened was just exactly what she’d wanted to happen to her characters, and we simply gave her those four books in rotation. And each time it was like reading your absolutely favorite book for the very first time. A special bonus, yes?
Except everything else would be happening for the very first time, too. Some days she would get stuck in her mind about people she loved that she hadn’t seen recently. Where’s my husband? Why hasn’t my mother come to visit? How come my awful daughter hasn’t even called for ages? And there we’d be. Having to tell her, the thousandth time for the first time, that she was a widow, that her beloved husband of sixty years had died and left her alone. That her mother had been dead for decades. Her uncles, aunts, her siblings, even her baby brother! were long dead.
And each ‘new’ death was a fresh blow, something to suffer and mourn. Even when it wasn’t a case of death – for example, her ‘awful’ neglectful daughter was standing right there talking to her, it’s just that I wasn’t the college girl she remembered but a middle aged woman with graying hair – getting slapped with that fact of the failure of her memory was a fresh blow each and ever time.
It was the best of times, it was the worst of times.
I’m on the lookout for signs that my memory is failing, things beyond the ‘where did I put my keys this time?’ level, and I’ve made preparations. I am NOT going to go through that, and especially I am not going to put anyone else through it on my behalf.
On the occasions that I’ve visited memory care units, I can’t recall seeing an individual who impressed me as “happy.” Well, not sure what was going on inside some of the noncommunicative/nonexpressive folk. I guess there is little reason to think they were any less happy than a piece of furniture.
We’ve been experiencing this w/ my FIL. As he has become more frail (92), he seems less of an asshole.
I can disabuse you of that notion. While some sufferers may temporarily appear happy, in general it is an absolutely horrible way to go.
We noticed that my mother, who was always a very capable and independent person, began “losing it” when she was about 83. We hired a family friend to be with her during the day and help her. She absolutely hated it (this person was over talkative and bossy, but she was the only one affordable to us). One night my mother got up in the middle of the night looking for my father, who died 20 years earlier, and fell. She lay on the floor for hours, even though she had a medical alarm around her neck, until she was able to alert the downstairs tenant by pounding on the floor. After that some of my brothers began to take turns sleeping over at night, and we hired a better caretaker during the day.
The most difficult period was when she began to develop psychosis and become hostile a few years later. We had a nice 85th birthday party for her in the backyard, and she was very happy. A few days later I and my brother had dinner with her on the actual date of her birthday. We had been limiting her alcohol intake because of low blood pressure, but as a treat decided to allow her one beer. When she asked for another and we refused, she flew into a rage and smashed the bottle, and tried to attack me by scratching and had a screaming fit with us. The next day she had completely forgotten everything, On another occasion she tried to hit my sister with her cane.
Then she started to hallucinate, in particular that she heard babies crying somewhere. She would insist that you go look for the babies and help them. If you didn’t she would accuse you of being complicit in murdering them.
She lived on the second floor of our house, with my brother’s partner living downstairs. When she became shaky on her feet, we got a chair lift to get her up and down the stairs. We had a baby gate at the top of the stairs to keep her from going down to look for the babies.
One day I was looking after her and inadvertently left the gate open for a few minutes. She immediately tried to get down them. I blocked her since she was quite likely to fall and kill herself if she tried to get down without the chair. But I wasn’t able to get her to go back up.’
We had a stalemate for about 20 minutes while she screamed at me that I was “killing the babies.” So I eventually allowed her to go downstairs in the chair if she agreed to go back up if she didn’t find the babies. Instead she managed to get out the front door onto the porch. There she began to shout to people on the street “Help! Help! He’s killing the babies!” while I sheepishly waved, saying “Hi, my mother has dementia. I’m not actually killing babies.” Fortunately our next door neighbors heard and managed to coax her back upstairs.
That night she got up at 2 AM and began to scream out the front window, “Help, police! They’re killing the babies! Won’t someone please help!” Fortunately no one heard or reported it. I was most afraid that if the cops came they would take her away and we would lose control of the situation.
The creepies thing was that sometimes she would think I or my brother were my father, and ask “Do you want to make love to me?”
Shortly after that we were able to get her some better anti-psychotic medication and she calmed down. Sometimes she would still hear the babies but if you told her they were all right she would drop it.
Then she went through a phase for several years of constantly asking the same questions over and over again. What time is it? What day is it? (even though we had a big digital clock giving the time and day in front of her) What’s for lunch? What’s for dinner? (starting immediately after lunch). How old am I? (Sometimes I would try to make her remember, and she occasionally got it) How old are you? I would sit with her for most of the day to keep her company, and I had to train myself to just answer her no matter how many times she asked. It was a test of patience.
The saddest thing was that she “lost” her 11 grandchildren, that she formerly doted on. She would recognize that she had seen them before, but not know their names. She would stare at one and ask “Who’s that guy?”
At least she remembered her six kids to the end. (We joked that we were going to need to get t-shirts that said, “Hi! I’m your son [name].” She did remember people she knew from decades ago, but not ones she only got to know in the past 30 years like her grandkids. She often didn’t recognize her caregivers who were with her 24 hours a day.
She couldn’t read or even follow TV shows, because how can you understand a story if you can only remember what happened five minutes back? She became extremely bored, and began spending most of her time in bed.
My mother passed away on March 2, 2020 at the age of 89. I had seen her last on January 2. I’m grateful at least that she still remembered me at that point, and was able to give me a smile. (Fortunately we were able to give her a proper wake and funeral just before the covid restrictions kicked in. If she had passed away a few weeks later we wouldn’t have been able to.) At least my mother died in her sleep in her own bed in the house where she was born, which is better than most people get.
Dementia is a terrible disease. My mother’s experience ranged from fear and terror to disorientation and boredom. I would not wish it on anyone.
I think you’re taking a few vignettes and extrapolating them out to a whole life. It was seven and a half years between my wife’s diagnosis and her death. Most of the time she was okay, but there were also times when she was terrified.
She was in denial for about a year, but then we went through a phase where, once a week or so, she would realize she was forgetting things and she would tearfully ask me what was wrong. I would have to explain, again, her diagnosis. It would devastate her. Then she would forget and we would go through that again several days later.
When she reached the point where I had to help her take a shower and go to the bathroom, she was still aware enough to want her independence. She would get furious with me for helping her. She was adamant that I was a pervert who just wanted to get her clothes off.
Her last few months she reached the point where she didn’t seem to understand anything. I can only guess at what she was thinking because she couldn’t speak, but her eyes often looked terrified. I don’t think she knew where she was or who any of us were, and she was at our home where we lived for twenty years with me and our sons. Imagine being in a care facility surrounded by staff and other patients.
Now read all of that and realize that my wife’s dementia case was one of the good ones. She never went through a personality change; she was kind and calm and wonderful the entire time. She never tried to wander away, she never got violent, she was mobile until the last two months. I heard stories from other spouses that were heartbreaking. So, while the vignettes are true(*), there is a lot of bad stuff that happens as well.
(*) One wall of our living room is a giant mirror. My wife would stand in front of that mirror and have long conversations with herself. She would chatter away and laugh. The conversations were very simple and repetitive, but they were also genuine and sweet.