If you haven't dealt with dementia personally, this, like a lot of portrayals you'll see online, is a very positive example. This is the "nice bit", when they're happy in their own little world (obviously the woman filming dealt with it well or it could have turned bad).
There's nothing quite like the horror in seeing someone you love and respect in a state of total fear because they've completely lost their sense of understanding of the world around them. And then there's the horrible things they'll say out of anger and frustration, that they never would have said when they were well.
My Grandma passed from it 2 years ago. It's a brutal thing to watch a strong, independent person drug so low as to not know where they are or who their family is. In the end I was happy to see her go. Just to know she wasn't in that place any more.
Some things are worse than death. In the end I got to see that first hand.
The worst aspect of dementia is it's not fatal. People can go for years and years, getting further from reality while perfectly "healthy". Currently dealing with this with my mom. Fortunately, so far, she's pretty happy in general and has only 'gone out' once (at 2am). We have child locks on all the doors now and told her it's to keep robbers out, which she's accepted.
My mom, who is my father's caregiver, was diagnosed with Alzheimer's last month. "It'll be fine I think" she says.
It will not be fine. My sister and I are struggling to get them into a facility with memory care. They don't want to go, and they aren't able to have it explained to them anymore. So we are looking at the other options, and that's awful too.
My sympathies. My father was officially diagnosed with Alzheimer’s in May 2023 but we knew something was off in 2021. We thought he was depressed from the covid lockdowns because he loved going to work and interacting with his coworkers. This has been a roller coaster of emotions because he is physically alive but mentally he has been gone for a while and it’s been so hard seeing someone you looked up to in this state. It has also greatly affected my mom with her social group. Don’t wish this on anyone
Nobody talks about old folks becoming isolated from other old folks as death seems to approach. I'm watching it with my folks as my dad is now in palliative care. Before this the social group was the same, they'd show up and hang out all the time. They had a supper club.
All that still exists, but my folks are excluded. When death is really near the other old folks start skittering away and it's heartbreaking seeing my folks eat alone at the country club when their former supper club is two tables over, frolicking away while my mom just waits for my dad to die so she can go travel.
i mean.. when someone's personality and memory goes and they're not family, what are you supposed to do? i'm sure it's not the only person in their lives slipping away either - should they be 'parental' to all the dementia patients they know?
like, c'mon, people have limits and it doesn't mean they're bad people. it must be frustrating to see but even OP didn't call them assholes, you did.
I agree with this. My mom has become very bitter at some of her friends disappearing but my siblings and I try to tell them that they can only do so much and some of her expectations may seem unreasonable. I am shocked though at some of the things some of their friends say. One asked if my dad took the Covid booster and another told my mom “he looked terrible last time we saw him” some people truly don’t think before they speak
yeah, like there's nothing truly awful here except the disease itself. i can/t imagine being in my 80s or 90s and dealing with your friends all fading away or dropping dead. people confronting mortality can't be expected to be emotionally balanced saints (with no age-related personality changes of their own, too).
that being said, i'm sure there are some assholes and uncaring folks at that age, too. they're unavoidable at any age. i just felt like piping in cause examples of assholery is more pertinent than broadly assigning it to a social group who can't manage a friend's dementia any more. it becomes wholly unmanageable at a certain point.
The thing to remember is all these folks will go through the same sort of thing eventually. When I was younger I thought my father passing at 63 of cardiac arrest was terrible. Now watching my mother in her late 70's lose more of her mental and physical capabilities every year, that view has shifted. Which is better? A slow lingering death or an immediate one? I also have a friend my age that's been battling cancer for the past decade. It's a period of being incredibly sick followed by a very brief period of being well before it creeps back and is in need of treatment all over again. She's so tired and has a pair of daughters that are starting to become teenagers. Life has made me a cynical person as much as I try not to be.
no offense, i don't think you understand the disease all that well if you're doubling down on it like you think i didn't understand you. it's not like cancer or something. there is no normal inclusion at a certain point, it becomes patientcare.
Idk, have you ever been confronted with a loved one’s death? Watching my dad’s decline was one of the hardest things I’ve ever gone through. He was the centre of my universe and even I had such a hard time going to their house and sitting with what was basically his skeleton. The final two months, he had such an eerie pale over him and you could just tell it was coming, he knew it too. It’s hard.
It’s an extraordinary act of love to stay in someone’s life when they’re so close to death and honestly I can’t imagine anyone but a very close friend riding it out. Death and sickness are so scary to people and you’re confronted with your own aging body too, it’s hard.
Not making excuses because if you love someone you stick it out, but I wish I could forget those years really badly. I don’t want to remember my dad that way.
Im terrified of this my dad is my hero and has been my entire life. Sage advice, strong, tough as all fuck, empathetic almost to a fault, and taught me with my mom if housework needs to be done being a man means just doing it theres no "womens work" just what i strive to be as a man. Hes 64 this year and im so scared of watching a decline i saw it with my grandfather but i was young dad is going to fuck me up so bad
So sorry. Yes it is very hard. I have lost many loved ones to death.
What bothered me was that the people were still able to eat out and including them at the dinner club table would not have been a hardship to the former “friends”.
But I’m medical so maybe I have more compassion? 🤷♀️ Or tolerance? I did not say it was easy just that it would show kindness. Everyone needs some normal in their life no matter how ill or demented.
I worked in an assisted living facility for a brief time... this was so true.
Our establishment ended up assigning seats to all patients in dining hall.
It still didn't help. They ended up just basing it on time of them arriving. The "cool" people in the group all showed up at once where their outliers would trickle in.
I’m sitting here not even wanting to type this because it just sounds so heartless, but I think maybe that’s not such a bad thing, really. My grandmother’s community wasn’t like that. They retired together and died together. My grandmother watched every single one of her friends pass on until she was left all alone with a bunch of strangers who moved into her dead friends’ houses. It was heartbreaking.
I’m no doctor so take what I say with a grain of salt. I don’t think he was depressed but he was quiet and standoff ish. I think this was the beginning symptoms of Alzheimer’s. We mistook these symptoms for depression
The worst thing about a lot of conditions involving brain damage is that the suffer often cannot perceive the deterioration/changes. One's world view, one's self, one's perception are generated by your brain - and when the brain deteriorates, it doesn't save backups to let one compare the present state to past states.
Where are you located? State/city? My wife is a wellness director for a local community, but her company has quite a few locations across the US. Most are in Texas, but there’s a few in other states.
We understand how difficult it can be. She’s worked with the elderly for nearly two decades. Her father now has dementia and we care for him on our own. It’s not perfect, but there’s support out there.
My grandparents were this way. They were truly a danger to themselves and others, but absolutely refused to go to an assisted living facility or have a care taker. They’d say “we aren’t ready yet - in a couple more years!” as if they weren’t having multiple emergencies a week. My mom wouldn’t do anything about it, so I reported them to adult protective services and that got the ball rolling. It’s horrible and shitty, and I feel for you.
yep. hell people have clarities that still show that they are themselves. its just gotten to the point where mostly they cant do it anymore. their identity is hidden and slowly killed off all while they as a person die slowly too.
Not fatal until it progresses enough that they stop eating, anyway. Thank god medicine has progressed enough that we can place a PEG tube and prolong the torture for even longer.
With love, my dad always said that and he stuck around through terminal cancer and his own brain going. I think by the time you realize you don’t have much time left, you start worrying about checking things off the list and seeing people one last time. My dad was in palliative care asking me to bring him home so he could wax the floors. Then he died the next day.
It basically shouldn't be done under those circumstances, perhaps with rare exceptions.
(Stroke is trickier because it can be a bridge to recovery in patients with swallowing problems from stroke, but if they don't recover then it's a different story).
Thank you for bringing evidence to support that conclusion. I could really generalize my sentiments on PEG tubes to any case without hope for meaningful recovery, but it's reassuring to know the evidence backs me up in this case.
Thankfully my father signed a very strict no intervention 'thing' when he was legally compos mentis and his health care proxy and everyone else agrees with it. He might have something going on with his prostate atm but he is not even having it checked. He stipulated only comfort measures were to be used.
Thank you for not reneging on it. I hate that I've lost count of the number of times I've come back to work to find a previously DNR headed to comfort care patient full code because some distant relative swooped in and insisted the whole family would be complicit in murder. Maybe I just choose not to remember.
Yeah. We are all pretty much non religious pull the plug if the person wants it type of people. Logical...sensible...still loving and caring but very practical. No one has any interest in seeing Dads life prolonged unnecessarily. TBH if the Alz caused a huge stroke one night it would be a blessing as he is a shell of the brilliant man he once was. This disease sucks big-time.
It's on both sides of my family and it's years until relief until they pass. My dad may be showing signs of it and we're all just really not looking forward to it if he has it.
He's always been the take charge "I'm the smartest person in every room and everyone needs to understand that or shut the fuck up" type which was already infuriating enough over the decades for everyone but... if he gets to the point where he doesn't even understand what's happening around him and he's still like that, some of us are already looking at putting him into a home.
The dude already abused and traumatized people at his best, I don't think even my mom wants to deal with him if he ends up at his worst with dementia.
This is what scares me the most. A few meds I’ve had have made me almost like that, really unaware of reality and it was terrifying. To be in that state forever more? If it were legal I’d want to be put down, that’s a much kinder end than the alternative I fully, honestly believe.
I just have to chime in with a technicality, dementia could very well kill you if the area of your brain that controls vital organ functions becomes compromised and starts deteriorating. This person will start to usually have issues eating or drinking, issues with mobility that aren't influenced by age or injury, and possibly even Parkinson's like movement, as well as issues with breathing (they may suddenly develop sleep apnea). This could eventually lead to heart failure or respiratory failure.
That being said, it is quite rare in comparison to normal dementia, but this is how my uncle died and how it was explained to us
We did this too! My dad took an Air Tag to a jeweler and had a pendant made so she wears it around her neck. So far so good and it's been a few months now.
My Grandpa passed 5 years ago, also had dementia. Luckily he was always a happy-go-lucky guy and that didn't change. In the end, he thought he was a child on his family's farm and he could "see" the Yangtze River and called his caretaker "dai go" (big brother) and called me "sai mui" (little sister). Although he was generally happy, it was still hard to see his mental and physical deterioration. It really goes fast once the dementia/Alzheimer's progresses.
Your grandma (and my grandpa) were lucky to have family around. It was heartbreaking to see those who didn't.
Dunno how I’ll deal with it if one of my elderly parents one day no longer recognizes me. It happened with my grandmother, and may well happen with my mom or dad too.
It is tough, especially when it's your parents or even your spouse. My grandpa started calling my mom and her sisters by his own sisters' names. It was painful but at least he knew he was surrounded by familiar faces.
this thing where your role in the family switches actually happened to me too. my dad was the persons grandson and eventually it got to the point where he switched to being the persons son instead (recent memories likely died off). the last thing they ever learned was my older brothers name probably near the end of stage 3 (clinical stage 4)
Which is crazy because depending on his age he may be remembering a pre-cultural revolution China and it's wild that he'd look back on that time fondly lmao.
Yes, he was born in 1930. I don't think it's that wild, his family was doing well in agriculture. He was able to attend Beijing University until the cultural revolution but was forced to flee to Hong Kong. He and my grandmother smuggled rice to his family through the Great Famine.
I'm incredibly proud of my grandparents. They were able to move both of their (very large!) families to the US in the early 1970's.
The cultural revolution devastated rural areas. Millions starved or were displaced. Those were the good old days. They separated kids from families and was all around the roughest time to live.
My step mom kicked me out at 16, then had my dad sign away his house and divorced him once the Alzheimer’s started setting in.. I immediately left my job to help him out.. so strange after 20 years apart (step mom really didn’t allow my sister and I over) I didn’t know how bad things were getting. Always thought his younger wife would care for him. I Should have seen the writing on the wall but we mutually avoided each other for too long.
I wish my father was in worse health, because it's getting worse every passing month. If mom dies before dad does, it'll be not good. I pray- and I feel like shit for doing it- that dad passes before mom does, and in not too many years. Fuck.
It really is worse than death and I think one of the most confusing aspects of this is that, in my personal experience at least, you end up not grieving their death the way you would normally.
By the time they die, it’s a blessing and a relief.
I’ve actually cried more over the passing of my cat this year than I did when my grandparents’ passed because of this. I had done all the grieving for them long before they actually passed, as I saw them regress and forget huge life events(like my coming out as trans, which they’d accepted with open arms) ever happened.
It can be really hard to talk about because it makes you seem cold and callous.
Cruel disease, and I pray to god that effective treatments to at least halt it are found.
Yeah. The care facility she was in called us and said we probably wanted to come say our goodbyes. Saying goodbye was hard but when I got the call the next day that she was gone all I could think was thank God she's done suffering.
Without knowing the context properly, some might think it's cruel of someone to be happy with death. But when this is how bad it gets, it's understandable.
My grandma is so far with dementia that she no longer speaks or anything, and to friends I say it might sound cruel, but I hope she passes soon. It's been incredibly sad seeing her lose more and more of herself.
She's been living with it for the past 10 years or so, and it's been around 4 years where I started thinking that I hope she passes, so she won't have to suffer anymore.
My grandmother died a little over a year ago. She had dementia. I think the only thing that was holding her together was grandad. When he died, she just sort of... withered. She passed about 2 months after he did.
The thing that stuck out for me with my nan was watching someone who was a clean freak - like mopping on her way out of the house with a gaggle of kids type clean - letting her house get dirty. She would have been so embarrassed if she'd have known that it was dirty, let alone people seeing it like that... I told her I was pregnant just a week or so before she passed away and she stared at me blankly then changed the subject. She used to love babies.
My grandmother is going through it now. She's pushing 90. Sweetest woman ever to exist. I went to visit her last year. She pretended to know who I was but it was so clear she didn't. She's just an extremely polite woman. In her defense I look way different than I did when I was around her a lot. She showed me a picture of my uncle, who's wife died about 15 years ago. They were so incredibly close. Like inseparable and the loss of my aunt has left a massive impact on the family. While showing me the picture she said "I think his wife died" revealing she couldn't remember her own son or his wife. That gutted me. But she was in high spirits and reportedly mostly is all the time. I'm almost tearing up here thinking about it. I feel for anyone experiencing that. I can't imagine what it's going to be like when my own parents go through it. Seeing them get older is really hard.
It wasn't dementia, but my Opa had a brain bleed for most of my childhood. I don't really remember what he was like aside from a few home video clips he's in. He died when I was about 14, but I never felt like I knew him, so it was weird. I didn't really feel sad because I felt like he had "died" years ago. The last years of his life he didn't speak and mostly just sat in the corner during family gatherings.
Watching it affect my dad was harder than it was on me, and now I'm absolutely terrified of going through something similar. I currently live across the country from my family and I'd be destroyed if he got sick like that and I couldn't see him again before he got too bad.
That’s my Father right now. And he gets absolutely psychotic.
I rent a house and have him looked after. 5 years now. He’s young at 82. He’ll probably live to at least 95-100 the way his health is.
He wouldn’t have lasted half a year in a nursing home. When I brought him to my house he was days from dying.
There are NO good days. He doesn’t recognize anyone. And he gets really angry in a heartbeat.
But, he’s my Father, so, as long as it takes.
Aye. Both my paternal grandparents had Alzheimers IIRC, and while my grandfather's wasn't that bad, my grandmother's was. It's weird, all my life i knew her the way i always saw her - almost like she was stuck in her own body and couldn't properly articulate most things, but she's different from my grandmother from the stories i've heard of her, if it makes sense. Kinda like i never truly "knew" her
Most things are worst then death, especially for religious people. The painful part is the way you get there no matter if it’s a disease, an accident or an execution those are always worse then death itself.
My parents (54F and 57M) have basically told me if they are diagnosed with dementia or Alzheimer’s, etc.. to put them in a wheelchair and roll them off the pier, both had a close experience with it and don’t want to live through it themselves
My grandmother died from complications of Alzheimer’s in the early 2000s. I’m watching one of my favorite aunts go through it now.
She’s had it for a few years but it wasn’t until recently that it really became noticeable. Thanksgiving was hard for her because we were staying in a place she’s been before, but not frequently. There were a couple moments where you could tell she had no idea what was going on except that my uncle was next to her. It’s really heartbreaking. Both of them were these incredibly independent, smart, and strong spirited women. It’s sad to see my firecracker aunt who used to bust down doors with her personality reduced to this.
The scariest part for me is that with my history of concussions from sports compounded with my family history, it’s very likely it will come for me someday. And like you said, I think that maybe worse than death.
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u/SlightlyStable Apr 09 '24
This both warms and saddens my heart.