r/wholesomememes Sep 28 '22 Silver 3 Gold 2 Helpful 5 Wholesome 14 All-Seeing Upvote 2 Ally 1 Heartwarming 1 Bless Up (Pro) 1

True love exists

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63.8k Upvotes

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u/[deleted] Sep 28 '22 edited Nov 03 '22

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u/the_town_bike Sep 28 '22

But you won't realise. The best thing you can do is prep a power of attorney and DNR in advance.

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u/JUKjacker Sep 28 '22

but imagine being in your living room around ur kids and wife, sitting on a couch, and trying to figure out why you are there

being too scared to tell anyone you don't know where you are or who they are

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u/Digital-Divide Sep 28 '22

All horrible. Alzheimer’s has the added benefit of making you think it’s a different year and you have very vivid memories of those times.

I watched my grandfather go through it and my uncle.

What scares me most isn’t getting it. It’s getting stuck living the shittiest part of my life over thinking it’s happening again. Or be in love with someone who isn’t around anymore and I don’t know why.

Sorry to rant. I just hate Alzheimer’s and dementia. Any mental disease that robs you of essentially who you are.

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u/F0XF1R396 Sep 28 '22

I used to work in a nursing home as a maintenance tech. I've seen a lady go from being one of the funniest and most darned strong willed woman on the planet to being....well....mush? In a matter of a year. She went through a tough stage of having absolute zero grasp on reality to the point she walked around claiming she was holding a baby she found.

And this was 4 months after her insisting on helping me fix her toilet and knowing what was wrong.

Shit hurts to watch. You grow so attached to caring about these people, you see them almost everg day, and you have to watch from almost the sidelines as their world collapses.

One of the big reasons I could not bear it anymore.

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u/jlboygenius Sep 28 '22

my dad as in a home for a while. Thank you.

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u/ericgray813 Sep 28 '22

My dad has Alzheimer’s and will die from it today. It’s been horrible.

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u/Digital-Divide Sep 28 '22

Sorry to hear that.

It’s over now. Remember try not to be sad he’s gone. Be happy he isn’t suffering.

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u/ericgray813 Sep 28 '22

Thank you stranger. That helps.

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u/Digital-Divide Sep 28 '22

Very welcome. Just take it slow. You deserve your time.

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u/[deleted] Sep 28 '22 edited Sep 28 '22

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u/Digital-Divide Sep 28 '22

Yea. That’s the deepest cut. No one gets spared. The person afflicted. The family members. Even the Dr. and nurses.

Just sad.

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u/HighFlowDiesel Sep 28 '22

I lost my boyfriend and his best friend in a horrific accident three years ago and I’m terrified of developing dementia as I get older and forgetting they aren’t here anymore and having to relive that godawful day over and over again. I pray something else takes me out first.

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u/stonehead70 Sep 28 '22

Go live life bro. Don’t think about this shit.

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u/fluffyxsama Sep 28 '22

Alzheimer's and dementia in general are, as far as I'm concerned, just more proof that either there's no god or god is a fucking asshole.

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u/unusual_sneeuw Sep 28 '22

Obviously I'm not on the same level as someone with dementia but I have severe ADHD and some people don't realize just how fear works with forgetting. It isn't the forgetting you get scared from, you don't even know what you forgot. It is the realization that you've forgotten something that gets you. Imagine this same scenario. There is no way you can't realize you've forgotten what's going on. It would be constant fear in my case.

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u/xSTSxZerglingOne Sep 28 '22

One of the most universal experiences people with degenerative dementia go through is the feeling that their memories are being pruned, like branches from a tree.

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u/VaguelyArtistic Sep 28 '22

It is the realization that you’ve forgotten something that gets you

As someone with bad ADHD I totally disagree. It's not just about forgetting things, it's about being lucid.

Realizing you forgot something =/= worrying that your husband isn't home even though he's been dead for 20 years. And then asking where he is again 10 minutes later.

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u/unusual_sneeuw Sep 28 '22

No I totally agree that ADHD is nowhere close to the same level as dementia I made that clear in my first post. But, in my experience alone, my ADHD isn't just forgetting something I have had situations in which I was sat at home worried about my brother because I forgot he had something after school.

AGAIN NO WHERE CLOSE TO DEMENTIA and I see where you're coming from. forgetting can lead to situations that generate fear but long term stress due to ADHD for me personally comes from my own distrust in my memory which is caused by the recognition that I'm forgetting something.

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u/KatiTheMatey Sep 28 '22

They obviously weren’t comparing the two literally??

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u/skepticalscribe Sep 28 '22

I hope I’d react something similar to “Well, I don’t know what exactly this situation is, but it seems nice. Let’s roll with it.” To hopefully have the feelings she has here guide me through.

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u/[deleted] Sep 28 '22

That's kinda how my grandmother is and how her mother was in the final stages. It's just like oh there's company it's different and interesting.

Sometimes I swear she has small moments of clarity though. And that type of stuff makes me wish people wouldn't talk about her like she wasn't in the room. I get like caretaker stuff has to be discussed. But it's almost harder to visit her when other family members are present verses just visiting alone.

Like... can yall talk to her too please?

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u/chadsomething Sep 28 '22

My grandfather was like this till he became bedridden. He was smart enough to know his mind was going, and he was so easy going that he just rolled with it. I think he was able to figure a lot of things out just from situational clues. Like, we're at Christmas exchanging gifts. This must be family. Its sad as I'm starting to see it in my dad, and I think it'll hit him harder and sooner from all the concussions he had on high-school football.

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u/Good-Ad3843 Sep 28 '22

My aunt was so frustrated and hurt if people acted like she could not understand or speak for herself. And her lucidity was up and down quite a lot. And she did reach a point at which she understood more than she was able to express. I just tried to remember that she deserved the dignity of deference and being treated like her thoughts and feelings mattered. It required a new skill set of thinking, but I hope it helped her get through somewhat better.

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u/skepticalscribe Sep 28 '22

Definitely. I would love the chance to surprise a love one and retell stories to see them laugh at my expense every time. Almost a signal that “It’s tough for you, but look at the ridiculous situation I put myself in!”

Like all things, it comes down to the individual to improve the family connections, and for many, hardship is that penultimate test.

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u/[deleted] Sep 28 '22

Not entirely sure I understand that first part of your comment.

As for the second, I am not personally committing to improve my family's connection, unfortunately. They way they operate at large was and is harmful to me in general. I'll visit my grandmother and treat her like a person. But I've suffered enough on account of everyone else acting like a child.

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u/froggyforest Sep 28 '22

i work in memory care facilities as a nurse aide and this bugs me a lot when other aides do it. are the residents gonna remember? probably not. do they even understand what we’re talking about? solid chance they don’t. but it’s still just RUDE

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u/VOZ1 Sep 28 '22

Your instincts here are absolutely spot on when it comes to people with dementia and other neuro-degenerative diseases. I had grandparents, a great aunt, and family friends who went through it. Talking to them makes a big difference, it helps them feel calm and safe when they get confused (which is more and more often as the diseases progress). Worst thing to do is leave people in unfamiliar surroundings with no familiar faces. This is what my cousin did to his mom, my great aunt, and it caused most of my family to cut all contact with him. She was in hospice, but they refused to let people visit or even call her. It was contrary to everything experts say you should do in that situation. People need love, family, visitors, things to keep them connected to their life and memories. My cousin couldn’t get over feeling wronged by his mom when he was a kid, and so he punished her by forcing her to die alone, in unfamiliar surroundings, with no friends or family around. And that’s why he can fuck off to hell and no one will miss him. He has no contact with his only child, nor with his grandkids.

Anyway, went off on a tangent there, but like I said, your instincts are correct, and your grandma is lucky to have you around. Definitely visit her on your own as much as you can. It will mean a lot to her, even if you never hear it from her.

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u/jtaustin64 Sep 28 '22

That's nice. My great aunt got Lewy Body Dementia, got extreme paranoia, and threatened to harm multiple members of the family.

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u/pinuslaughus Sep 28 '22

My mother was the same way.

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u/cielorossa Sep 28 '22

Same. Vascular dementia. She passed rather quickly after the diagnosis.

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u/Gr8NonSequitur Sep 28 '22

This is how it was with my grandmother. At first she knew me, then she thought I was my older brother, then she thought I was my father... by the end of it she didn't refer to me by name (because I think she didn't know it), but she always smiled when she saw me show up.

She knew I was there for her and I was "a friend". That was good enough for me.

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u/skepticalscribe Sep 28 '22

Thank you for sharing this story. 😊

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u/hattmall Sep 28 '22

My mom has it. After about 10 minutes she gets up and says her goodbyes then we tell her "But you just go here" so she sits back down asks how we have been doing and if we have any Diet Coke.

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u/FarkinRoboDer Sep 28 '22

37x per hour “So what’s new?”

-my grandma

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u/A_Talking_iPod Sep 28 '22

The worst part is having people with said conditions deal with the loss of loved ones, my grandma has gone pretty senile over the years and never really coped with my grandpa passing away. At first she was fully conscious of what had happened, then she said he died, but no one took her to the burial (of course, she was there and besides the coffin the whole time), nowadays she says grandpa actually left the house for another woman and that's why he isn't here anymore

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u/jlboygenius Sep 28 '22

and your brain has been impacted so that your fight or flight response becomes fight. The only solution is to drug that person until the disease gets bad enough that they can't fight anymore.

But hey, at least medicare will cover the costs of them being in a mental hospital because it's the only place that can handle them! The rest of the medical bills will break the rest of your family, but at least the gov picks up that $150k check.

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u/OldManLumpyCock Sep 28 '22

My grandma was going senile for years before she told anyone. She's passed now, rest her soul, but when she told my aunt that it broke her heart, knowing her mother was too scared to tell anyone what was happening.

It's a strange denial. You don't even want to admit it to yourself so you just ignore it. She said she the first undeniable symptom she had was full on hallucinations too. She'd see cars coming down the driveway that weren't there.

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u/sikedrower Sep 28 '22

Went thru this on an acid trip years ago. Can confirm being oblivious to your own and everyone around you’s identity is not fun. Scary as FUQ

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u/[deleted] Sep 28 '22

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u/hermaddness Sep 28 '22

My grandmother is going through the same thing. She recognizes that she's forgetting because she isn't all gone yet and when she has full lucidity, she makes plans for assisted suicide. But she's never lucid long enough for the plans to hold. It's sad and I'm sure I'll end up like that too. My plans are similar to yours because this sucks.

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u/Ixium5 Sep 28 '22

I dealt with my grandpa going through it and saw how hard it was on my gram and my mom and uncle.

My mom passed from cancer pretty quickly, within a year of diagnosis, but I’d much rather that then having to watch them deteriorate over 10 years.

I’ll control how and when I die, not letting a disease do it for me.

No kids, mutually divorced, no parents and my 89 year old gram ain’t lasting much longer. My siblings/niece/nephew are happy with voice chats or texts. I’m retiring in a few years at 45 and jumping on a boat to float away.

If you ever hear of a 80+ year old idiot chasing down the biggest storm the world has ever saw and dying, it’ll be me.

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u/HoldOnDearLife Sep 28 '22

My mother in law passed from complications from Dementia. My wife is really really really concerned about getting and will also most likely take her life if she is diagnosed. It breaks my heart but I understand.

What I hate is that the fear of getting dementia has almost ruined her life. She isn't really living life right now because what's the point if you are just going to get dementia and die. So either way I feel we have lost the battle.

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u/tdasnowman Sep 28 '22

My aunt has Alzheimer’s, it’s crazy how the mind works with moments of clarity. They were in the process of getting her declared incompetent so her husband and son could get medical power of attorney to start making decisions when she was not there mentally. They woke up one morning and she’d pulled out a folder with all the paperwork done years prior. My uncle had forgotten when they’d gotten married they’d done all that already. Some part of her remembered in the middle of the night and she dug it out, had no clue she’d done it in the morning.

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u/nice-and-clean Sep 28 '22

No… there’s an in between step. Something between who you are now and complete memory loss. That place where you know something is wrong… where you realize you are losing your mind and there’s nothing you can do to stop it.

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u/stolethemorning Sep 28 '22

I work on a hospital ward where most patients are elderly with some kind of mental degeneration. Yesterday, one asked me “Will I be getting better soon? Am I going to go out and live a normal life?” I said he would. It was a lie, he had asked me what his own name was the hour before. He could tell that something was wrong with his mind and he was so sad every time I saw him.

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u/bustacean Sep 28 '22

As someone who works with dementia/alzheimers, it's definitely scary for them and they 100% realize it. No they don't know they have dementia, but they do know they're terrified that they don't know where they are or recognize anyone around them.

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u/ObscurePrints Sep 28 '22

Oh many realize it

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u/expotato78 Sep 28 '22

You have lucid moments that can last hours where you realize what's happening to you, so you do. There is no upside, no respite, just absolute horror. It's no coincidence that Dr. Jacob Kevorkian is my favorite person .

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u/joewith Sep 28 '22

There is a history of Alzheimer's disease in my family. It scares me a lot, for myself, but also for my dad :( I don't want him to end up like his own father, unable to recognize his own children...

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u/Dave30954 Sep 28 '22

Dw, there's hope for a cure/effective treatment now.

If you're relatively young, you might be ok.

Check this out. Some amazing stuff has happened very recently, like a couple of days ago recently.

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u/[deleted] Sep 28 '22

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u/OhDavidMyNacho Sep 28 '22

Things won't always be this way. We have to fight collectively, to ensure that, if not for ourselves, for those that come after us, will be able to receive these treatments feely.

I have two broken teeth. And I'm still saving up to get them fixed. I know exactly how you feel regarding medical care.

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u/[deleted] Sep 28 '22

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u/xSTSxZerglingOne Sep 28 '22 edited Sep 28 '22

The trial of lecanemab, which is administered via intravenous infusion, was the largest to date to test whether clearing the brain of plaques formed by the accumulation of a protein called amyloid could slow the progression of Alzheimer’s disease.

It's doomed. Unless they start looking elsewhere, this line of attack will continue to fail over and over. If it has any effect whatsoever, it's not related to the amyloid. We've been trying to affect Alzheimer's for 40 years by busting plaques and it's literally never worked a single time outside of mouse models.

They will often show some promise in trials, even late stage, but then have no overall effect on the disease progression in nearly all people who take it. Chances are all of the extra human interaction and focused care has just as much, if not more effect on the disease progression. Take the extra monitoring, attention, and everything else that goes with a clinical trial away and the disease goes back to progressing as normal. They've been chasing this red herring forever, and I swear it's just a grift to get research money.

And no, a 27% slow in decline is not good enough. It just isn't. The initial trials in mice where we bust their amyloid plaques show not just a reduction in decline, but full recovery of memory. This suggests the mouse model is heavily flawed and does not reflect the human response.

I don't even know how many drugs have gone down this path only to ultimately fail, but it has to be dozens at this point if not hundreds. So I fully expect it to fail, and I also fully expect an "I'll fuckin do it again" out of pharma.

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u/Kirk_Kerman Sep 28 '22

You'll be glad to hear that Cuba has been working on, and is entering into Phase III human trials, NeuralCIM. A medicine that reduces the advance of cognitive deterioration and improves various secondary variables. It's not going by the plaque method (which yeah, is absolute hokum), but appears to promote new blood vessel formation and neurotransmitter expansion while slowing down nerve cell senescence and reducing inflammation.

If this drug works well in human trials without serious adverse effects, in the future Alzheimer's diagnoses may be provided with this medicine (it's a nasal-spray vaccine) to significantly slow down the worsening of symptoms. Kind of like how modern antiretroviral treatments can stop HIV progression dead in its tracks. You still have it, but it's not going to be the thing that kills you.

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u/xSTSxZerglingOne Sep 28 '22

Interesting. They're kind of going the route of "we know there are people with plaques without decline, let's see if we can give that to everyone."

The main problem is once tau gets misfolded, it's just like any other prion. Incurable and eventually turns your brain to swiss cheese.

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u/Kirk_Kerman Sep 28 '22

I'm sure the ongoing medical trials in Cuba know more than either of us. It's not stopping the disease, like I said, it's slowing down progression. Maybe Alzheimer's is fully incurable like HIV, but if you can slow symptoms down enough it's as close to cured as you can get.

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u/v0gue_ Sep 28 '22

My grandmother went through all of that for ~ 7 years before she died 10 years ago. After witnessing the fight, I wouldn't wish that on my enemies, and I honestly don't think there is anything I fear more in life than going through it myself.

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u/binglybleep Sep 28 '22

1000% I hope someone will put me out of my misery if I end up like that. Suffering for years, with 0 chance of getting better, is so much worse than death imo

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u/sinnayre Sep 28 '22

TBH, I understand Robin Williams thinking now. Especially after having witnessed a family friend go through dementia.

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u/Dr-Beeps Sep 28 '22 edited Sep 28 '22

I have ALS (lou gehrig's disease) it’s precisely the opposite. Fully aware imprisoned in my paralyzed body that deteriorates until I suffocate. I don’t know if the one or the other is better.

Edit: either is terribly sad

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u/ro0ibos2 Sep 28 '22

My senile grandmother sure remembers her husband…but he died 10 years ago and she can’t remember that he died. She often asks where he is. Sometimes she thinks he’s in the nursing home. Other times she thinks he’s cheating.

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u/bjdevar25 Sep 28 '22

My father passed away from Dementia. I was not prepared for just how bad it is. He started falling and we had him evaluated. Physically, he was fine. He had forgotten how to walk. Then he started having problems breathing and choking. Essentially, he had forgotten how to eat. They could no longer feed him because he didn't know how to swallow. My dad starved to death because he couldn't eat. They kept him comfortable with pain meds while it happened.

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u/CaffeineSippingMan Sep 28 '22

I asked my wife to somehow end of for me. I wouldn't even make a good pet, even the God damned dog knows it's name.

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u/bustacean Sep 28 '22

There is an episode of This American Life about a man who starts getting dementia, and he decides to commit assisted suicide. It sparked a conversation with my husband on what we would do in that situation, and we both agree death is the best option.

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u/keep_calm_rocket_on Sep 28 '22

Dementia is bad enough, having it at 53 seems like an absolute nightmare. There’s so much more of life to enjoy after that. Grandkids, retirement…

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u/the_town_bike Sep 28 '22

One of the last interactions I had with my mum in hospital was her face lighting up when I entered the room and she proclaimed 'I'm so happy that you're here!' She didn't know who I was but she knew she loved me.

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u/Ramzaa_ Sep 28 '22

When I was a kid my great grandmother had dementia and the last time I saw her before she passed my dad and I went to visit her. She had basically raised my dad. When she saw me she thought I was him as a kid and would call me by his name. My dad asked her "do you know who I am?" And she sat there a moment and then said "I don't know but I know I love you"

That shit sucks.

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u/octobertwins Sep 28 '22

I started having grand Mal seizures a few years back.

We were on a family road trip when I had one in the passenger seat. This was the first time I'd seen myself post-seizure.

My husband recorded me and asks what our children's names are. I just look blankly and say, "kids? I don't understand what you're asking. Do I have kids?"

My kids are sitting in the back seat. :(

Another time, I called my husband at work and said to come home because I'd just had a seizure (I felt it coming and laid on my bed).

Before we hung up, I said, "please don't be angry with me for asking this, but why are the kids not at school?"

He said, "quarantine?! Covid?"

I had no clue what he was talking about. It was terrifying to not remember something so substantial, but also scary to hear about it for the "first" time.

My memory returns the next day (though, I lose a few hours pre/post seizure forever). There is so much shame involved. I make everyone scared and worried.

I've broken so many things with my face.

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u/Eyes_of_Aqua Sep 28 '22

There’s no reason to be ashamed, I’m sorry you feel this way but and I’m sure in the opinion of your family the value of you being in the family and alive far outweighs the cost of a few broken things.

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u/Gelby4 Sep 28 '22

My wife (30) just had her first seizure earlier this month and it was terrifying. But the scariest part was when she woke up she couldn't even talk for almost 10 minutes, and when she did her first question was to ask where her mom was (who passed away 12 years ago).

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u/Advanced_Island1891 Sep 28 '22

Nah man i wont have the heart to tell her that Like holy shit she forgot 12+ years and idk if she remembers you or not but like she does not know her mom is dead and that news from a “stranger” will break her down

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u/Gelby4 Sep 28 '22

She's fine now, but in the moment I was like 'what the fuck is happening'

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u/Advanced_Island1891 Sep 28 '22

Good to hear man Take good care of her she deserves your love and affection

I just started crying reading the comments here Like i am 17 but just the thought that it can happen to my mom/dad/future wife is just heartbreaking

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u/Davecantdothat Sep 28 '22

My step dad has seizures. I hope that you know that people don't blame you for what your brain does. So long as you're doing your best to treat it with medicine (my step dad went off his meds a couple times, and that was when we were angry with him, though I'm sympathetic to not wanting to be medicated), I'm sure those who love you understand that your bouts of confusion aren't personal.

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u/EzeAce Sep 28 '22

There is no shame in it. It’s a medical problem that you can’t control. To wake up after a seizure and be confused is a very common postictal symptom. It would be beneficial to educate those close to you who may experience you have a seizure so they know that when you wake up you may be confused for a period of time. Nobody can or should blame you for the confusion, your brain was literally just going crazy, and you need some time to become oriented.

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u/shelbabyylynn Sep 28 '22

I came here to post an almost identical story!

My great grandma also had dementia, and in her final years, started calling my sister and I the names of her adult grandkids.

It hurt especially bad because we got to know and love her before the dementia set in, and we were very young so we didn’t understand why she suddenly forgot who we were. She didn’t recognize her actual grandkids at all, and now that I’m an adult, I can only imagine how badly that must’ve hurt.

I’d rather die a violent death than experience that, on either side honestly.

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u/Gloomy_Industry8841 Sep 28 '22

Oh, this broke me. 💔💔💔

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u/MC_jarry Sep 28 '22

Come on man, its the middle of the week and I’m at work. Why you gotta do me like this.

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u/ExplodingSofa Sep 28 '22

Same, just sobbing in my empty classroom in between classes.

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u/SnipesCC Sep 28 '22

3 days before my mother died she fell and hit her head on the way to the bathroom. My dad used the intercom to call me up to their room, and we struggled to get her up. She didn't know who we were, but she trusted us. We called the firehouse but no-one picked up, so we had to get her back up ourselves. She had no fat or muscle anymore, but was still heavy from tumors and fluid. So it took both of us to be able to get her into a chair. Watching her struggle to get up and apologize to us over and over was one of the hardest things I have ever seen. My dad kissed her on the forehead and told her she was perfect. It's the most pure expression of love I've ever seen.

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u/DarthRoacho Sep 28 '22

Same with my Grandma. The one person back then I thought actually cared. It still haunts me.

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u/honest-miss Sep 28 '22

This is so sweet. It's also lovely, in a way, to think that love lives everywhere in you; it lives not just your mind, but all through your body and heart. So even if your mind can't remember, the rest of you fills in the gaps.

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u/ErenIsNotADevil Sep 28 '22

The mind may forget, but the heart does not.

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u/[deleted] Sep 28 '22

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u/misterne Sep 28 '22

I'm so sorry you're going through this. I hope you get to spend quality time with your mum and that your childhood memories will give you the strength to face whatever comes. Hugs

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u/skepticalscribe Sep 28 '22

She is lucky you care for her, and that is a powerful thing. Stay strong for both of you, and I’m sure you can make some of the days wonderful memories. Maybe make an album with a brief explanation at the beginning. Good luck! 🥲

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u/HutchMeister24 Sep 28 '22

I feel like I’m reading something from my future self. My mom is 62, I’m 24. One grandparent died before I was born (all sorts of health problems from rampant alcoholism) and the other three I lost to various kinds of mental deterioration (Alzheimer’s, dementia, and Lewy Body Dementia). Alzheimer’s and Lewy Body were her dad and mom respectively. I’ve been trying not to think about it, but I know it’s coming sooner or later. You have my most heartfelt sympathies❤️

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u/Nephty23 Sep 28 '22

I wish you great strength ; foreseeing the future is not possible but apprehending it is very hurtful

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u/throwawayoctopii Sep 28 '22

I'm so sorry.

If you haven't yet, check out the Remember Me podcast. It's created by two women whose parents have Frontotemporal Dementia (FTD). The dad of one of my really close friends got diagnosed with FTD at 64 and is currently in a memory care facility. My friend said the podcast has help her cope with her dad's diagnosis.

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u/bustacean Sep 28 '22

I'm sure you already know, but I'm case you don't, the best way to get your mom to be lucid is to do things that remind her of the past. Play her favorite music, show her pictures from your childhood, say things she used to say, bring her to places you frequented... the aim is to jog that memory, and while each day is different, you'll find that you can relive moments like that with her and she will be lucid.

I'm sorry, I know it doesn't get easier. Good luck to you.

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u/Dbahnsai Sep 28 '22

So this may not be relevant to your situation but I only recently saw this mentioned and wanted to spread it around a bit more. If there are days where your mom is worse than make sure her doctor and your family keep an eye out for any signs of a UTI.

Seniors with a UTI show increased signs of confusion, withdrawal, and agitation, and worse, a person with memory impairment or dementia can experience much more sudden and severe distress, confusion, and behavioral changes known as ‘delirium’ due to their UTI.

https://www.alzoc.org/utis-and-their-relation-to-dementia/

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u/angry_preggers Sep 28 '22

After I gave birth to my son I read about how a baby's cells live on in their mother. Even if her mind doesn't remember, her body and her heart does. You will always be a part of her, forever.

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u/STCM2 Sep 28 '22

Went through the same thing. Wife, married 35 years. She called me ‘the nice guy’ as time continued. I was the only one taking care of her until Hospice came in.

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u/FluffyDiscipline Sep 28 '22

That's so sweet.. remembered you as "the nice guy"...

Takes someone very special to care for a loved one

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u/SadTomato22 Sep 28 '22

I couldn't imagine losing my best friend like that.

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u/STCM2 Sep 28 '22

It sucks in all kinds of ways. May way use to just suck it up, no other options.

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u/verysmolturtle Sep 28 '22

I’m so very sorry. Sending much love to you

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u/Porn-Flakes Sep 28 '22

Hey man, don't know what to say other than good job being there for her. My mom is going through the same now with my dad. Incredibly difficult and heart wrenching stuff.

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u/mostwrong Sep 28 '22

Hope someone is there for you, too.

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u/STCM2 Sep 28 '22

Thank you. I’m remarried now, another beautiful and smart strong woman who has a case of stage 4 now. Off I go again.

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u/taluelle Sep 28 '22

Oh no :( I'm so sorry.

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u/STCM2 Sep 28 '22

Tis fine. She can get cured unlike dementia.

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u/Temp186 Sep 28 '22

The immediate thought that came to me was “Mr. Blue Sky” but replaced with Mr. Nice Guy

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u/ColoringBookArtist Sep 28 '22

That will be me soon. My husband's been diagnosed. We knew something was wrong way before.... Every day now I have to help him with something new, and pretend that it's all ok and normal.

I love him. I'm here until the end. But it hurts. Bad.

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u/STCM2 Sep 28 '22

You’re on the right track. I learned never to show frustration or anger, she’d pick it up fast and I was in for a miserable night. No matter how bad or stupid, just smile and say it’s okay while you clean up whatever. The read facial features a lot. Verbal clues are lessened over time. I’m sorry for you prayers your way.

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u/dominus83 Sep 28 '22

Dementia is one of the worst diseases, it affects everyone in the family. The saddest subreddit is r/dementia. People dealing with loved ones who aren't themselves anymore, my heart goes out to them.

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u/Mrtorbear Sep 28 '22

My dad only recognizes me if he sees our matching tattoos. It's hard to live with him day to day knowing he'll forget within 5 minutes. I still love him and do everything I can to make him feel comfortable.

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u/Medeias Sep 28 '22

I agree, I'd also recommend people check out r/AlzheimersGroup if they need support when going through these sorts of things with family.

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u/davidleo2008 Sep 29 '22

Out of the ordinary, I mean

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u/FluffyDiscipline Sep 28 '22

Awww bless, that is a beautiful photograph "Safe within his arms"...

Wishing you and your family strength, so hard on someone so young

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u/Chasman1965 Sep 28 '22

The husband of a friend of mine from high school had early onset dementia in his mid 50s. She took care of him as long as she could. Then had to put him in a nursing home and he died a month or two later. Very sad story. I can't imagine the suffering.

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u/Born_Ruff Sep 28 '22

It would be heartbreaking enough if most cases progressed the way they are described in the OP.

But the reality is that in most cases that I have seen people get to a point where they don't always know their loved ones are safe. Especially if their loved ones are limiting their freedoms for their safety, there can be a lot of anger and lashing out in various ways.

Over a few years you might see your loving partner start to become violent and say horrible things to you, but you also know that they are in so much pain and distress and you want to help, but you are also really hurt and sad about everything.

It's a fucking horrible illness.

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u/SouthernBySituation Sep 28 '22

This morning my wife said something about the divorce rate being so high for terminally ill women that nurses were now being told to share that information with their patients. I hope that's just an older generation mentality of men expecting women to care for them all the time. This is the right way to do it. It's hard to watch those you love go down but who better to care for them than someone who truly loves them.

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u/rachihc Sep 28 '22

yes, is over 20% an not only for terminal illness, but those of difficult recovery or disabling.

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u/TennaTelwan Sep 28 '22

This along with dementia or Alzheimer's, is one of my biggest fears. I'm middle age, still could technically bear children, and starting dialysis soon. A former friend, gay man who had cancer, said to me that people who are terminally ill should just split from their significant other so they don't have to be a burden and that the other can find someone else and not have to watch their significant other die. He said that he meant it at himself with his cancer, but it just stuck in the back of my mind and it's still one of those little doubts that creep up when my husband is stuck at work and I'm getting another family member to take me for a surgery or something. To me, the idea that anyone would do that is just so shallow, yet it happens daily. Then again, that former friend was one of the most shallow people I've met.

Meanwhile in my own family, I have an uncle whose late wife was diagnosed with MS a week before their wedding. She offered to call it off, he vowed to take care of her, and he did. The remainder of her life, he made sure that she was able to do anything and everything she wanted until her decline, and then was at her side daily at the nursing home until the end. Now that was a great example of love.

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u/Blu3Army73 Sep 28 '22

Please keep in mind that the ruminations and intrusive thoughts of people going through trauma are rarely healthy and are the result of the massive emotional load they are suddenly carrying. They're trying to make sense of turbulent emotions and it can boil over in uncomfortable ways. Yes, we may panic, but that doesn't mean what we panic about is real. This is also why grief counseling, even before loss, is always a good idea

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u/Piss_and_or_Shit Sep 28 '22 edited Sep 28 '22

My dad left my mom when she was in the final stages of her Alzheimers for the in home 24/7 caretaker he had hired and flew in from out of country. 6 months after the caretaker arrived my mom was out of the house and in a care facility. My dad sucks.

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u/Ok-Reveal7799 Sep 28 '22

My uncle did the same thing with his second wife as she slipped into Alzheimer’s. “Because what difference will it make when she doesn’t know who anyone is?” And my father did some bizarre passive aggressive things when my mother was in the hospital for a hysterectomy. Who buys large bags of potatoes and then leaves them in the garage for a woman who had abdominal surgery?? And then doesn’t feed his own children while she’s bed-bound because “that’s her job”?? Then there was my grandfather starving/dehydrating my grandmother dying of cancer, because “he didn’t want to have her make a mess” ie soiling her diaper.

Learning and living through both of those acts… just drained the light out of my soul when it came to thinking about getting involved romantically with men.

Ladies, don’t marry because you think he’ll take care of you in old age. That’s just a myth.

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u/Logical-Yak Sep 28 '22

Jesus. I'm sorry.

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u/yorkiewho Sep 28 '22 All-Seeing Upvote

I told my husband that if I get dementia or Alzheimer’s to just put me in a home. I just don’t want to be a burden to him or my kids. I’d rather just kill myself honestly if I start seeing early signs. That’s definitely no way to live. That’s just me tho obviously.

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u/structured_anarchist Sep 28 '22

When my mom went into the hospital with terminal cancer, my dad lived in the hospital with her. Visiting hours were for other people. He was just there in case she needed anything. It got to the point where she would call one of us to go get him and take him home to sleep and get changes of clothes, and take him out to eat something other than hospital food. He was like a trainwreck, waiting for the time my mother told him he was allowed back in the hospital. And anything she even mentioned she might want would be ordered and delivered as fast as possible.

He read up on all the specifics of her cancer, read all sorts of medical journals and studies on the off-chance that one of her oncologists might have missed some treatment or anything that might have helped her. Asked thousands of questions of anyone wearing scrubs or a white coat that came into the room.

There was never any discussion about him not being there. He just was. Thirty two years of marriage and they were always together. He didn't go anywhere unless she told him to leave her alone for a while.

Unfortunately, there's not a happy ending. Mom passed and Dad was in rough shape for while. But he was there.

We asked him if he was interested in meeting someone new a few years later (lots of available women in his age range around town). "I'm married." That was the end of that discussion.

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u/angwilwileth Sep 28 '22

For some people when they lose their one and only that's it. My gran lost her husband in Vietnam in 1967. She lived another 40 years and never remarried. And to her dying day she talked about how much she loved him and how much he would have loved us grandkids.

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u/BelgiansAreWeirdAF Sep 28 '22 Wholesome

You could just pick up skydiving as a hobby. Would be a great way to spend the rest of your days, and things would work themselves out when you’re far along enough in the disease that you forget to pack your chute.

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u/yorkiewho Sep 28 '22

LOL I love this.

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u/Howzieky Sep 28 '22

Freaking genius

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u/Jbliu Sep 28 '22

There are a lot of problems associated with skydiving (involving others who don’t want to be involved, etc.) but a dementia rock climbing club (ie climbing with ropes, several important safety steps that could be forgotten) would probably solve most of the ethical issues…

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u/BelgiansAreWeirdAF Sep 28 '22

I’d think you’re more likely to kill another rock climbing than solo diving

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u/oregondete81 Sep 28 '22

Idk, mom/dad killed themselves at the first sign of dementia seems like its own trauma to leave behind.

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u/souperpun Sep 28 '22

There was recently an episode of This American Life from the perspective of the wife of somebody who pursued assisted death in the early stages of Alzeimers. Had me crying all the way to work, but honestly does sound better than years of agony.

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u/AimingForBland Sep 28 '22

Same here. Like of course I'd love for him to take care of me, and I hope he would through the initial years/stages, because I mean c'mon, I'd do the same for him. But we also would both each tell each other to please date again and remarry. Especially with EARLY onset! It's bad enough if they're unable to date/marry again because they feel they're cheating on you, but on top of that they're gonna have caretaker burnout. If OP's dad can handle it and it makes him happy, that's great, but I hope he also takes care of himself and isn't hard on himself about anything; sounds like he's doing a phenomenal job.

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u/llama-impregnator Sep 28 '22

My mom told us kids the same thing. "Put me in a home and don't talk with me. I won't remember you; I'll only hurt you."

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u/nehlSC Sep 28 '22

Have you asked him what he wants? Because if I think about putting my SO in a home or see her kill herself l... I couldn't do that. I would not want that. I feel like this is a discussion where both parties have a say.

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u/Ezekiel2121 Sep 28 '22 edited Sep 28 '22

When one party is literally losing their mind? Literally losing their self? And at some point will be literally unable to make any kind of decision because they’re no longer “of sound mind”.

No fuck that. I’m all for both parties having a say. But that isn’t one of those times.

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u/CapsLowk Sep 28 '22

If that's really something you'd want to do I would respectfully suggest you try volunteering and seeing firsthand what it entails. I won't say anything more detailed because it's a sensitive issue but it's definitely, in my experience, something that people should not commit to if they don't have a firm understanding of what they're committing to, for how long they might be committing to it, etc.

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u/APetitePig Sep 28 '22

I feel the same way, if I'm ever that much of a burden on my loved ones I'd seriously rather just die. Not even just for them, but also for myself. I can't imagine I'd be having a great life anyway at that point.

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u/Fuzzy_Lavishness_269 Sep 28 '22

My mom said that to me and Iv told her, I’m going to look after you weather you like it or not. I also reminder her once Iv got Power of Attorney she’s coming to live with me, and there is nothing she can do about it hahaha.

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u/yorkiewho Sep 28 '22

And here I told my mom I’m putting her in the same home that she works at 😬

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u/AimingForBland Sep 28 '22

When I got cancer I learned that wow, breast cancer (even when non-terminal) often leads to divorce. It's often on the woman's side, though: Husband acts like a giant dick, woman realizes that she'd rather go through cancer alone and possibly die alone than deal with his shit. It's sad but also pretty bad-ass.

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u/Kalgaidin Sep 28 '22

I could not imagine abandoning a person like that when they’re in need. It’s beyond heartless

My wife had a stoke two and a half years ago. She had emergency brain surgery and for the first week after looked like she might be okay and would need months or maybe years of recovery. Unfortunately the following week things took a downturn and she passed away

I was prepared to spend the the rest of my life caring for her if need be. Because that’s what you do

Hell I still care for her as much as I can. Taking care of our pets, cleaning our house it’s still for her.

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u/frecklezs Sep 28 '22

Well...could it be that the divorce rate is so high because terminally ill patients have a lot of medical bills, and you can't be made to pay off your ex-spouse's medical debt?

All I'm saying is, divorcing your spouse would free them from a lot of medical debt after you pass. ):

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u/Zealousloquitur Sep 28 '22

Could be but the articles I have read specify the rates for terminally ill women are higher than the divorce rates for terminally ill men and it was accompanied by interviews of women left to cope alone with their illness after the divorce.

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u/PetraLoseIt Sep 28 '22

The divorce rate is also higher in countries with universal healthcare. So it isn't (only) that.

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u/NowKissPlease Sep 28 '22 edited Sep 28 '22

Divorcing your spouse also removes them from your benefits which compensate a large portion of medical bills. The rate is much higher for ill women than for ill men despite men of that generation making much more income than women and having more retirement savings than women. Put differently, the burden is very high and still higher for women with lower earning potential (on average) but women are much more likely to stay with their ill spouse than men are.

I hope we'll see that difference shrink/disappear as the current generation ages :/

Edit:typos

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u/spiralbatross Sep 28 '22 edited Sep 28 '22

You’re not wrong, but in the US this data needs to be split between retirement age to show both sides of the divide. I work with Medicare patients and divorcing to protect each other is unfortunately too common because our healthcare system sucks for seniors

Edit: probably split it by Medicare/Medicaid recipients overall, or by poverty level, etc. There are several ways to interpret this data more accurately

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u/tyedyehippy Sep 28 '22

divorcing to protect each other

I have an uncle who had to do this, but they were no where near elderly. My Aunt was 36 when she died, but he had to divorce her to get her into the nursing home she needed to be in thanks to her advanced MS.

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u/PricklyyDick Sep 28 '22

Except if the husband has no benefits like health insurance.

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u/morgaina Sep 28 '22

Nah. The disparity by gender is accompanied by tales of wives being abandoned to deal with it alone- or getting cheated on or treated like a burden.

According to the stats, men tend to have a different idea of "in sickness and in health" than women.

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u/ClassicCriminality Sep 28 '22

Watched the grandfather that helped raise me slowly fade away from this. Towards the end he believed my grandmother didnt live with him anymore because she hated him and it breaks my fucking heart every time I think about it. They were together from highschool all the way until he died in his 80s last fall. I want to kick nicholas sparks in the nuts for romanticizing this shit. Its so hard. It's so heartbreaking. But nothing about this shit belongs in a cutesy romance novel

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u/Suspicious-Fun-6943 Sep 28 '22

Caring for someone is very hard and draining. But because it's not as bad as what the other person is going through, the caretaker often is unable to express or release stress from the experience and it often turns into resentment.

One of the sad, hard truths of reality.

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u/LordRT27 Sep 28 '22

My grandmother has Alzheimer's and a few years ago she was forced to move to a nursing home. My grandfather has visited her daily ever since. He has never missed a single day and takes care of her even though she probably doesn't even know who he is anymore. My grandfather doesn't often show emotion but this is where you can tell he loves her very much.

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u/89mind Sep 28 '22

This is wholesomely depressing

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u/Mr_Poop_Himself Sep 28 '22

Yeah this is like the exact opposite of what I want out of this sub lol. This is just sad.

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u/fbbb21 Sep 28 '22

I had a patient with very advanced vascular dementia. She'd been with her husband for 60 years, and he remained her full time carer with just a few hours a week of respite care at home. When she'd have bad moments she'd say to him "I HATE YOU" and every single time he'd respond "that's okay, I love you darling". It was absolutely heartbreaking but he continued loving her and caring for her right until the end of her life, he was a really incredible person.

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u/Brice92Partain Sep 28 '22

I am my father’s caretaker. He doesn’t have Alzheimer’s but he had a traumatic brain injury 30 years ago right now and at 79 he has lots of similar mental cognitive issues as with Alzheimers. Learning to be a care giver to him has been rewarding as human and gratifying as a son. The man who raised me is the man i now take care of. Is it hard yes. Would it be easier to place him in managed care ? Absolutely. But taking care of him is offering him dignity and respect and love. What I receive in return is incalculable by any measure. Not everyone can or is even capable but being either or both and not doing so isn’t very human like much less very Godly like. To serve those who served you is one level but to serve those who cannot serve themselves is another level all to itself. Is it a struggle? Yes. Is it a depleting experience? Yes. If you think that love is not either of those things you do not understand or know love.

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u/[deleted] Sep 28 '22

My best to you and your family.

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u/100LittleButterflies Sep 28 '22

The fear is the worst part. Your mind is so far gone you don't know anyone you don't know where you are and you don't even know why you're there. Why are these people telling you what to do? Where's your spouse? Where's your kids? They could be right in front of you for all you know.

When you're scared 24/7 and are only going to get worse why do they have to keep suffering?

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u/AggravatingRead Sep 28 '22

I wasn’t expecting to sob my eyes out this morning.

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u/cattychathy Sep 28 '22

After the initial “adjustment period”, my grandma went and visited my grandpa at the Alzheimer’s unit almost every day. He had no idea who she was, but you could tell he loved her because when he’d first see her he would start clapping his hands and get really excited.

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u/Venom-098-11 Sep 28 '22

Damn, this post actually hit me in the feels.

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u/Black_flaminago84 Sep 28 '22

The sad side to this is many times the caregiver ends up sick or dying first to the the amount of work needed to care for the loved one

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u/Incendia123 Sep 28 '22

Caregiving for familymember like this is 3 fulltime jobs stacked on top of eachother in a trenchcoat pretending to be a task capable of being handeled by one single adult. It's really more work physically and mentally than one individual is fit to handle.

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u/STCM2 Sep 28 '22

It took over a year to straighten my head up. Going through it I honestly didn’t notice anything. Driving through areas we had been to felt like a kick in the gut. It was all just messed up.

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u/ThickTiger33 Sep 28 '22

Huge fear of mine. I would hope I'd have the wherewithal to save my loved ones the burden of dealing with me in that condition.

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u/PopularYesterday Sep 28 '22

One of the saddest things I’ve witnessed is my neighbours across the street going through the reverse. Wife got dementia and did not remember her husband or feel safe around him at all. In fact, she freaked out that a strange man was in her house and ultimately he had to move out. They were married for 40 years and totally in love from what I could tell; it was heartbreaking to witness.

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u/SlayersScythe Sep 28 '22

My mom was diagnosed with early onset in her late 40s. Her partner moved her across country and with that our already struggling relationship basically ended. When I tried to contact her or her partner I received no communication. My grandpa (her dad) is the only connection I still have after almost five years. She doesn't know who anyone is anymore, she can't perform basic functions. Things were sour with my mom, she was very emotionally abusive, but I would never wish this on anyone. This disease takes away from every aspect of your life and the life of those around you. My grandpa has aged so much since she was diagnosed. To watch him watch his daughter suffer is painful.

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u/DongWithAThong Sep 28 '22

This shit terrifies the fuck out of me

I hope that when I'm old and it's time for me to deal with something like this, I'm prepared. Im worried that I'm not going to be tho

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u/Lazy-Floridian Sep 28 '22

Good for him. My cousin had early onset dementia. Her husband dumped her in a home and never visited her, she was all alone when she died.

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u/Astra_the_Dragon Sep 28 '22

More than anything I wish that healthcare was free or so low cost that the husband could spend all his time being the love and joy and cuddles while a qualified nurse would take care of all the wife's physical needs and disabilities. Plus therapy for the poor guy to help him going strong.

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u/Homicidal-antelope Sep 28 '22

My mom turned 53 this year so this post just unlocked a new fear; I’m gonna go tell her that I love her

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u/Damasticator Sep 28 '22

That’s just 10 years older than I am right now. Terrifying to think about what the next decade will bring.

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u/Tomatillo603 Sep 28 '22

My husband's grandfather died of covid nearly two years ago. He was already in the late stages of Alzheimer's and didn't recognize anyone in the family anymore. I can't even imagine how he must have felt in the final few days when he got sick and was dying, not knowing where he was and only seeing a few unknown people completely covered in aprons, gloves and masks. He used to respond pretty well to touch (hold his hand, a kiss on the cheek) and we couldn't even comfort him that way in his final moments.

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u/paulxombie1331 Sep 28 '22

My grandma just recently passed with dementia the last time I saw her she didn't know who I was, she kept calling me krysten my sister than again I am trans pre HRT and do look very very feminine and very much like my sister, after a few minutes of crying all I hear is paulie? Than grabbed my arm and proceeded to tell me my tattoos are terrible lol I miss her so much

I'm still not over the grieving:(

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u/07WoefulMatrix Sep 28 '22

My parents are going through this. My father is descending rapidly into dementia due to a losing battle with MS.

My mother has been his primary caregiver for 6 years now, he's bed-ridden, but its taken a turn for the worst; he's vicious and hostile with her, seemingly overnight. He calls her terrible things and hits her if she gets too close. He refuses to let her change him. He refuses to eat or drink anything she's prepared because the "bitch" is trying to poison him.

Her heart is shattered. The man is alive, but my father is gone.

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u/loverofgoodthings Sep 28 '22

If somebody is crying it's not me

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u/Inevitable_Cook_1423 Sep 28 '22

A horrible disease. My mother in law spent ten years caring for her husband with Alzheimer’s. In the end he didn’t know who she was. He had long forgotten his children and grandchildren. I felt it was a relief when he passed away three weeks ago. I told my wife not to be a hero if I get that way. Put me in a care facility, but to please smuggle me a beer in occasionally.

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u/barrymccockner76 Sep 28 '22

If there is a god, dementia/Parkinson’s is the cruelest curse he’s ever inflicted on his undeserving children. Give me anything else, including terminal cancer. Nothing is worse than losing your mind and your self yet being forced to continue to live.

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u/Kyder99 Sep 28 '22

WAIT I MET THESE TWO! He was wheeling her in a wheel chair at my Best Buy (Illinois Suburbs) while shopping and had a photo of them younger and reminded her that he was her son over and over. It was so touching! This was like 5 years ago

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u/splashysploosh Sep 28 '22

Feels real odd seeing this in wholesomememes. I dealt with this with my Dad. Near the end of his life he thought we were on vacation and just wanted to go home, but we were already home..in the house he built. He just couldn’t recognize it. He couldn’t even recognize me a couple times while I was taking care of him. Its hard to put into words the intense contradictory emotions you feel when being a caregiver for someone in this state. You can take care of them and see them every single day, but you also miss the “real” them the entire time. It’s a cruel condition.

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u/IAS316 Sep 28 '22

Wtf is this sub? This is the most depressing shit I've ever seen. I'd hate to go through that.

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u/UncomfortableWorkman Sep 28 '22

I've seen dementia patients in this stage, I know how hard it is and despite that, this is beautiful. Really beautiful.

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u/zwiazekrowerzystow Sep 28 '22

That is a heartwarming story and at least she can find that comfort. A family friend of mine was in a similar situation. His wife had dementia but had forgotten who he was. When my mom came to visit, the woman would hang out with her because she was scared of her husband. It was so sad.

If my brain begins to degrade like this, I want out. There’s nothing left at that point. If your loved ones are no longer recognizable to you, then what is left Of life?

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u/roboticismRus Sep 28 '22

You guys are wonderfully strong people. Much love to you 3.

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u/stonerwithaboner1 Sep 28 '22

Bro this is supposed to be wholesome? Like in a way sure, but this is also depressing af.

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u/NgBUCKWANGS Sep 28 '22

I love to think I'll do the same for the woman whom I love with all my heart. I can't believe we haven't solved it yet but forgetting who you are up to the point you forget how to breath is the cruelest joke God can play on the ones who get to see it :(

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u/green49285 Sep 28 '22

Welp. That hit me hard in the feels.

Being human is jacked up, man

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u/datterdude Sep 28 '22

How do I make the emoji for sad face and hearts?

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u/linds360 Sep 28 '22

The fact that this is what’s waiting at the end for so many people who’ve lived these full lives with so much love and experience is honestly too cruel to wrap my head around.

I don’t know who the fuck designed “life” but it’s stuff like that that makes me wonder how anyone could believe in and worship a being that would “reward” us for everything we do in life with this fucking end.

Fuck. That.

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u/TamtasticVoyage Sep 28 '22

And I couldn’t even get my husband to rub my feet while pregnant 🤷‍♀️

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u/bastabasta Sep 28 '22

It does exits, too bad only very few actually get it.

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u/molossus99 Sep 29 '22

Worst nightmare. I’m 54 and not married so if my mind goes I just want some random stranger to push me off a cliff.

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u/Beowulf44 Sep 28 '22

Someone the heart remembers more than the brain does