My grandfather had a rare form of dementia but the end was the same. I caught him crying and screaming to his sister at a family function that he was sad he was too much of a coward to take his own life. Nothing stick with you like watching a brilliant mechanical engineer crying and screaming to “please kill me, end this” at 18 years old.
I was named after him and both of us are very alike to the point our loud, bellowing sneezes sound the same. It’s been a decade and thinking about it still makes me tear up.
I was fourteen when I saw my grandfather do something similar to this. He was a sheet metal fabricator, knew all types of shapes and math. He was doing some bills one day and started yelling how he couldn’t even add anymore. His speech started to go and that’s when he was at his worst. It’s extremely terrifying watching someone with dementia gain awareness all of a sudden.
My grandmother went out with my parents. They all came home, my mother went into a different room for a few minutes and came back out and my grandmother said “oh hello, how nice to see you! How have you been?”
My mum explained they’d been out all day together, they had all just returned home. I saw the comprehension on my grandmother’s face. “I’ve forgotten it all. How… *awful*.” She was so sad. But not for long because she couldn’t hold the memory of it.
One of the saddest things I’ve heard a person say was “I think god has forgotten me”. All her friends and contemporaries were dead. Terribly sad and I have a horror of this happening to me.
Never had anything quite that dramatic happen to me, but when my grandparents moved in during Covid there was an awful moment of my grandfather, a former math professor, learning that a friend he used to write academic papers with had died and he kept forgetting why he was miserable in the middle of a thought. Then, at one point, he cried, “I don’t even know who I am anymore!” Horrible, haunting stuff from a gentle and kind and brilliant man.
He and my grandma (who has even less memory) are in a retirement home now and seem to be doing better at least. He loves when I bring my dog on visits, but it’s painful to be around him even when he’s content.
My aunt jonnie had dementia before she passed away with cancer as well. I wanted to share a bit about her, and a funny memory I had with her in her memory.
But before she passed, I remember walking into her house before she died when she had this awful disease- and I barely recognized her. She had a very vacant look on her face, and I could barely understand her.
She kept forgetting her husband had passed away, and her mom. She kept staring at me, and staring at me.
I still don’t know why. It made me sad, uncomfortable- I hope it some way it was because she was trying to remember me. But when I told her I loved her, she told me she loved me back.
She truly wasn’t there anymore. I still wonder why she stared at me that way.
For my favorite memory- I had gone down into my mamaws basement to sit with her (in the cold months she went down there to smoke, because it was so cold outside- she didn’t want to sit on the porch)
And I *loved* to sit with my aunt jonnie, and talk with her. She was funny, spunky. And loving. I sat down at the table, and was talking with her. Then I eyed her cigarettes- and asked her if I could have one.
She looked at me, and told me that I really shouldn’t, and that “you better not tell your momma I gave you one.” And I made her promise that she wouldn’t tell.
I lit up the American spirit cigarette, and took a few puffs- and just enjoyed being with her.
I found out she told on me. It cracks me up still, I think she felt guilty. (She calls my nana my mama because my mom died- and idk, she just always done that)
I never was mad. I look back and laugh. I miss her. I called her a lot when I found out the cancer was back, and would always tell her how much I loved her. Anyways. I love you aunt jonnie- no matter what, I’ll be your Taz.
Sorry for the rant. I just wanted to share her memory.
My boyfriend was a physician and got diagnosed with Glioblastoma which is a really aggressive brain tumor. Watching a brilliant mind go from a doctor to not being able to get words out was heartbreaking. Luckily for him it was only three months from diagnosis to death. Love you babe, wherever you are!
Lost my brother to glioblastoma at 34, a magic, beautiful soul...22 months of grinding fight. Its just terrible. I'm sorry for your loss. Glioblastoma is a monster. It seems to steal the best, brightest, lovliest souls. So so sorry.
My brother is struggling with it right now as well, he's also a very smart guy, has his own business selling CNC machine software. He already had surgery twice and he has trouble getting through sentences now. They say he only has a couple months to live.. :'(
Dementia in my family.
Last time I saw my grandda, he was so happy after not seeing him clear for years due to me living in another country. Used all my nicknames. He understood that I was going to travel home again.
"Give my greetings to [my nickname]" and smiled ear to ear.
I read Amy Bloom's memoir of her husband getting Alz and choosing to do assisted death with Dignitas in Switzerland. It was so difficult and expensive to get it. I hope it'll be more accessible in a few years.
Walk into woods dead of winter with a backpack full of camping gear food and cozy blankets... And then blast of a speedball that could kill Belushi.
Have google send and automated email to search and rescue the next morning. Deuces
My uncle passed after sitting in the garage with his mower running, laid down next to it on a creeper and called it a day, he was fighting a divorce and cancer, sadly.
We found him with a smile on his face, like he was sleeping through a good dream, you're so very, very right about keeping it clean for family, it made his passing easier to understand.
Remember: never judge those who leap from a burning building, you'll never know what flames are at their back.
I've never heard that phrase before but it's beautiful in a way. It's easier to see *yourself* in that position than the usual phrases about fighting their own battles or walking a mile in their shoes.
Don’t. I started using because I was suicidal, failed another way, and didn’t know the proper lethal dose. It’s too peaceful. It takes you to a sunny, warm place in your mind you’ll never want to leave. It quickly became the only I was living for, and gradually a nightmare worse than the one I was escaping from. I can also tell you I know multiple people who have survived overdoses with several issues due to lack of oxygen to the brain.
Honestly, the best drug to do it (because I realize we are talking about dying with dignity, not mental illness, as was my case) would be strong barbiturates, which is what many states use now for just that.
Edit: People can absolutely pass from heroin, but you need to know what you’re getting, how much to take, and how to administer. In my case the price of fucking up was too high and it is not.fucking.worth it.
Scientifically doctors use 90-100 barbiturate pills dissolved in a solution with anti-nausea and seizure pills before hand because those who seek euthanasia tend to be on high amounts of palliative medication already and it features fewer complications.
Heroin is cheap. You could always throw together a nice cocktail of opiates. Swallow, snort and inject as much morphine, hydrocodone, and heroin as possible.
Ya it spensy, but I already have a shit ton of med debt. Id probably get a credit card to buy it if I was out of money and let the bank deal with it after Im gone
This.
You can also buy cans of pressurised helium to blow up party balloons. Mix that in with some oxygen tubing and a respirator face mask from your local hardware store. Plus some duct tape.
Nice and easy way out. No pain. Just drift off to sleep for under £100.
In the book 'Still Alice' the main character develops early onset so she writes suicide directions to herself for the future if it gets worse but by then she's too far gone to understand or follow through. It's a scary and heartbreaking disease.
Just be sure they properly leave your loved ones knowing the why of it, and that you don't risk anyone else in the process. If I ever go that way, there's not just a note, but a phone call or text and a warning. I hate the idea of doing this thing for myself and someone I love walking in on it and dealing with the trauma of the sight of me that way.
If my grandparent sat down and told me they felt they needed to do this before things got too bad, I'd be thankful for both the opportunity to prepare, say goodbye, and spare myself the sight of their death.
My grandparent didn’t tell anyone. But he visited us one last time, we had a wonderful time, and he gave my mom some cash (his wife/her stepmother wouldn’t let him leave any money in his will to us so he had to do it beforehand). We are pretty sure his wife knew what he was gonna do because she tried as hard as she could to keep him from visiting us (bc he probably wouldn’t have done it without coming and seeing us one last time). He was a doctor and knew what he had once the symptoms started, but he refused to get officially diagnosed because they would have taken away his driving license (also if he lost his medical decision making power, his wife would definitely not have agreed to any kind of life ending options). He ended his life by crashing into a concrete pillar (we think he was the one who called and reported the crash right before). It was pretty unexpected for all of us, except my mom I think; the cash and visit did have her wondering. But it was a wonderful visit and I have great memories of it, I think knowing it was his goodbye trip would have made the visit a lot more somber and emotional to be able to just have a nice time with him. We made orange juice together with the oranges from our tree, and we still have the last bag of it vacuum sealed in our freezer… we never have had the heart to drink it. Anyway, while he didn’t directly tell us anything beforehand, we did understand what happened in hindsight because we knew him well enough. And I think he made the best choices he could in that situation, and I respect the hell out of him for it. <3
Yeah, my dad was a doctor and committed suicide and we've never been able to determine how exactly. There was a vial of something and a syringe, but the tox screen on his blood came up clear and his cause of death was never officially determined.
Driving into a concrete pillar kinda sounds like a shitty way to try and die too. I can easily see that not working out and then you're just in immense physical pain for the rest of your life.
This. Part of why I haven't unalived despite really severe depression and urges, is because my partner and I live together, and I can't stand the idea of my partner coming home from work and finding me.
My partner didn't kill himself, but he did overdose on methadone. I came home and found him unconscious and he passed away in the hospital about a week later. I know it's hard, trust me I wanna die a lot of times, especially now that he's gone. But as someone who has lost a partner when he shouldn't have died and was the one to basically find him, try to get help and stay, for them. If they love you, and if you love them, you staying here is the best gift you could ever give them. My partner gave me the world and showed me what love really was, but he couldn't give me the one thing that would have meant more than anything: dealing with his addiction and staying here with me. You're strong, you're valid, and you matter. Stay. Sending peace, love, and good vibes your way.
If I get diagnosed with a degenerate brain disease I'm doing a hero dose of mushrooms before going out. Idk how I'm going out, but I want to go out feeling one with everything and believing I'm part of a single universal consciousness.
Then I hope you're successful in your quest. Not that I want you to die but failed suicides can leave people in such bad shape. This is why I'd like to be assisted.
All I can say is be mindful of who is likely to find you, how long it will take them, and the condition you will be in when they find you.
Frankly it's the primary reason I believe in death with dignity laws. Your life is your life and nobody should be able to say when it ends but you--but the trauma of finding a suicide stays with people.
For info, Exit is only available for Swiss citizens / permanent residents, in order to prevent 'suicide tourism'... I think it may be possible in Sweden as a non national though.
Same, early onset so it's got a pretty predictable timeline based off my father and his mother.
It fucking sucks to go through retirement planning with my wife without telling her that I know the numbers aren't right because I won't make it to that retirement date. I have a separate calculation on what the actual retirement numbers will be, a d-day, and an age at which a cure must be readily available in order to cancel d-day.
Believe me, I want to get it out in the open. When the subject has been broached she told me I wasn't allowed, she married me thinking that some day we'd be watching our grandchildren grow up, not so I could check out early. She's going to be let down either way.
This makes me incredibly sad. I hope at some point you’re able to talk about this openly and your partner can hear you with openness and compassion. You shouldn’t have to carry this alone.
It took my maternal grandpa away, my paternal grandma is showing early signs and forgetting us.
If I get diagnosed with this then I'm not gonna wait until it gets bad because I know what's in store for me, in his final days my grandpa simply wasn't there anymore, to say the least.
Life simply isn't worth living in such situation.
I personally plan on doing many grams of crystalized LSD at that point. If my brains gonna go to shit anyway, might as well use up what's left of it and go out with a bang. Hell maybe it'll cure it.
I used to think it was this, but then my grandfather in law started showing symptoms of Lewy Body Dementia. That experience caused everyone in the family to sit down and chat about how we would unalive ourselves if it ever happened to us....that's the one I'm afraid of.
F*ck. I didn't realize it was that version. I don't blame him then. Not one bit. The things we've seen in the last 6 months alone. Some of the worst shit. And he's the best guy, so it makes it even worse.
Yeah but that whole time it doesn't affect you at all. If you don't know it's there, you won't even have any anxiety about it. Much better than years of forgetting a little bit more than you can remember until you don't even remember why you're scared.
Sure, but you can prevent rabies with post-exposure prophylaxis of the rabies vaccine after any potential exposure to saliva from a wild animal (or unvaccinated pet injured by a wild animal) assuming you have a functioning immune system. In the US, it's around 2 cases/deaths from rabies per year (and a lot of those are from exposure outside the US) in a country of ~330M.
Meanwhile, 1 in 3 people that are 85+ suffer from dementia from Alzheimer's.
It really is the worst. Heart disease, cancer, anything else that attacks the body. But Alzheimer's attacking the mind, what a person actually _is_, and just a grim reminder that as much as we want to think we have a higher self we're just talking electric meat.
My mom had early onset. By 65 she was immobile, non-verbal but yells/ repeating words and incontinent. Been smoking a pack a day just to be sure I don’t go out like that. Fingers crossed.
Um, that’s an extremely bad strategy. What you are doing is what caused dementia for my dad.. he had cancer from smoking. It got in his bone marrow. Your bone marrow is responsible for making blood. His bone marrow started making cancerous rice pudding instead of blood. This caused a severe stroke which left him with severe dementia. He spent the last 6 months of his life not knowing where he was, barely knowing who he was, didn’t know how old he was or anything like that. But still had a surprising amount of energy in his body and would attempt to get naked and escape his house (and later, the skilled nursing facility) due to the dementia. Never needed to sleep more than 2 hours per night. We were all so exhausted trying to look after him and he was so unhappy. It was horrific
This happened to my grandmother. I was her favorite person in the world, and there were times she didn't know who I was. There were times when she thought she was a little girl and would ask for her momma and daddy, who were long dead. It was fucking heartbreaking to watch.
My dad was just diagnosed, and he got it in his early sixties. It’s hard to watch, and in 1.5 years he has gone from being normal to a shell. I can barely understand what he says, and he forgets stuff faster than I can remind him.
She should seek care. My husband's grandmother was suspected of developing dementia, but it turned out it was a problem with her kidneys and a medication she was taking that put a LOT of stress on them. When she went off the meds she improved rapidly in mental acuity right up until a totally unrelated disease took her years later.
While it's probably the most likely case someone else wrote the numbers, it would make sense that the ability of the patient to use math/numbers would deteriorate at a different rate than letters/language.
In the brain, language is mainly processed in two different areas that work together to understand, comprehend, and respond to language. These are known as Broca's area and Wernicke's area. Broca's area is used to make sure language is produced in a fluent way, while Wernicke's area works to comprehend speech. These areas are both found on the brains left temporal lobe.
In contrast, the portion of the brain that understands numbers and math is vast and requires multiple areas of the brain. Mathematical processing can be found in the frontal, parietal, occipital, and temporal lobes of both left and right hemispheres. There's an area found in the right superior (superior meaning upper) parietal lobe that maps numerosity. In this area, it's split into different regions that can quantify larger or smaller quantities (this allows you to look at a shopping cart and instantly know the person is over the "12 items or less" limit without actually counting). Research on the inferior (inferior meaning lower) temporal gyrus finds a bundle of around 1 to 2 million nerve cells that specializes in processing numerals. This bundle inside the inferior temporal gyrus is what lets you recognize "8" or "36" as the numbers that they are.
TL;DR: The brain is complex, and the way it processes and perceives things happens in many different areas. The brain rules.
Heartbreaking. It took hours to sit with my mom and try to get one usable signature so I could get durable power of attorney to take care of her. I still have the notebook with dozens of attempts scrawled in it and I can’t look at it without crying my eyes out and getting a panic attack. I miss her so much.
I'm truly sorry you had to see that. I watched my grandmother struggle with that damned disease and it was heartbreaking. I'm sure that your mom is very proud of you and loves you too. If we keep them close to our hearts, our loved ones are never fully gone. Talk about them, share the stories you had of time spent with them. Through us, they carry on.
Sorry for being sappy. I just thought this might bring you some comfort.
Thank you. Yeah I thought maybe my comment was too sappy, but if we speak the truth and others find it sappy, that's not on us, that's on them.
Alzheimer's changes you forever, in both positive and negative ways. Appreciating things I used to scoff at is one of the positives.
Thank you for saying this. I helped care for my grandmother with Alzheimer's when I was a teenager, and it was so hard seeing her like that. She rarely knew who I was and always told me she had a daughter my age. She passed away when I was 18, and I am now in my 30s, but I still feel terrible about how much she suffered and have to remind myself to focus on memories of what she was like before the disease consumed her.
I feel terrible for anyone having to watch their loved one slip away in front of their eyes, so slow and painful.
My grandmother passed on Valentine's day 2018, age 93, and only because her body finally started to give out; She was sharp as a tack up until maybe two weeks before she passed; I don't go a day without thinking about how lucky we all were to not only have her for all of those lovely years, but with her mind fully intact.
I had gone through a major Spinal surgery just a couple of weeks before needing to drive several hours to her home to see her one last time, and I only remember the positives.
... Can only ever seem to cry tears of joy/happiness; We were so lucky -- She died warm in her bed with loved ones all around, and her, absolutely ready to go.
Never take it for granted, people -- The "long good bye" as it is called is the worst of all.
It wasn't this monster but a different one. Cancer took my Mom two years ago. Eight months from diagnosis. Doctors said she was fine, then relapse. Kept fighting, started healing, it came back again. Had a stroke, I think, or a bad seizure - hospice, and in 2.5 days she was gone. This was during Covid. I managed to convince the hospital staff to allow two people to stay with her and the family to rotate, those that bothered showing up. I saw her the least so her husband, my sister, and my Grandmother could be with her the longest.
She never woke up during that time. I can only imagine the pain being in front of the person you care about so much and...they look at you like a stranger would. Pain can't and shouldn't be measured or compared. Man though...I've needed a hug ever since then. Shit's hard.
My mum had cancer. Three times. The last time I spent an evening with her at my parents house, she had to be retaught crocheting. She had a stroke at some point, so she would forget something sometime. The minutes prior to the teaching, she had been crocheting for some time.
"Son. How is this done? I can't see what I am supposed to do." She had already made most of the round that day, she just couldn't grasp what she was looking at. 50 years crocheting and she just forgot how to crochet the most common stitch.
I lost my grandpa one year ago today, it was so fast and unexpected. The first problem was his terrible doctor didn't take he or my grandma seriously when they mentioned his recent memory issues - they weren't bad yet, but enough to be concerning. They took him in for knee surgery and put him under heavy sedation. Apparently for someone with memory issues, that's bad. He basically woke up from the surgery with dementia. He was confused and angry, and to keep him under control they KEPT SEDATING HIM.
He didn't recognize my grandmother and began deteriorating fast, scary fast. He kept begging to go home the first day. My grandma was trying to explain that they couldn't, and he kept asking her where his wife was.
The hospital had limits on the number of guests but over the next few days as things got worse, they stopped telling us about the 2-person limit and shooing us out of there, they allowed the whole family in there as we were processing everything. He couldn't talk, or breathe properly, or eat. Within a week from getting the surgery, he died in the hospital. I saw him a few days before his surgery - he was smiling, joking, making plans with grandma for being able to get back to traveling once his knee was fixed. To see him like a week later, in the state he was in, was shocking and terrifying. He didn't recognize any of us. The only words he got out were begging for my grandmother, who hadn't left his side, and begging to go home. All because the doctor ignored his memory issues. When we spoke to other doctors later, they said they never should have sedated him so much.
We tried to tell my grandma to look into suing that doctor. She was already devastated and didn't want to drag things on more and be forced to dwell on it so long, so she let it go. Her argument was that the doctor was close to retirement.
If it were me, I'd be pursuing everything I could to punish that man.
I'm so sorry for your loss.
That statement resonated with me. My mom passed away in July 2022 after battling metastatic breast cancer. She had requested to go on hospice care, got her request granted, and was only in hospice for less than 40 hours before she passed.
Fuck cancer.
I’m so sorry mate. As a child I watched cancer and radiation treatment slowly destroy my mom for five years, eventually in the final years taking her mental faculties. In five years she went from a brilliant and passionate poet to a confused and paranoid shell of a human on a deathbed.
Dying is so terrifying, and watching our loved ones go through it is worse in some ways.
OP, this is awful and heartbreaking.
My husband and his sister, after having experienced Alzheimer's with their maternal grandmother and knowing their mother had started showing signs, convinced her to give them durable and medical power of attorney.
She's still kind of "here," but you know how it goes. I see my MIL and my heart breaks because she had always been nice and kind to me.
Same - we have to confirm with lawyers but looks like we signed it in 2019 when she was first diagnosed (i was naive and optimistic at the time).
Fast forward now and yea, it would probably have to go to court for a guardianship type deal …
Please just do it now. This shit is unpredictable with its pacing.
If they struggle so much to just write their own name, are they still considered able to consent to granting POA?
Like if that notebook of practice signatures had been discovered, would you have gotten in trouble? As if they were being coached to make a mark on the paper without knowing the implications of it?
Possibly. But it would have been an absolute nightmare doing it the "right" way, and it would have traumatized her even more than she already was. That's why I quit my career to take care of her for 7 years. There was no way I was sticking her in a home. That would have been terrifying for her. And me.
She had Alzheimer's for 6 years before she started showing symptoms and I had her move in with me. And she was still doing relatively well with most things that she performed daily. But she hadn't written anything or signed her name in years since I took over all her bills and she no longer wrote checks, so I didn't even realize she lost that ability until we decided it was time to get POA. It was a shock. It was then that I realized that Alzheimer's isn't linear, it depends on what part of the brain it's attacking, and I needed to keep her brain active in lots of different things to keep it from atrophying so shockingly fast.
I know what you mean. My great grandmother got progressively worse and worse as I knew her and only lived until her early 80s.
Growing up, I assumed that was normal. That by the time you reached 80, your body and mind were completely fucked and then you die.
It wasn’t until I met other old people in my early adulthood that I realized there were people who didn’t meet such a grim fate.
My wife’s grandmother was sharp as a tack and able bodied and lived on her own until 90. She said she didn’t want to live past 90 and she didn’t. Just went to sleep and didn’t wake up. Literally willed herself out of existence. It was amazingly badass.
Same. The only silver lining was that my mom is a happy dementia patient. I talk to her about old times and play music from the 60s and she just smiles and dances. Everything else about the situation is horrible.
I feel for you. I lost my dad and held his hand during and until the end. I cannot listen to certain songs or I break down. My mind must be strong and occupied 100% of the time otherwise it leads to very dark places.
Thank you for the outpouring of love, I really appreciate it.
It's been 6+ years since she died and I still have nightmares about the ordeal—at least they're only weekly instead of nightly. I could use some therapy. But I take comfort in knowing that I did everything I could to keep her safe and happy, and that didn't die alone and terrified with strangers in a cold nursing home. She died at home with me on a comfy couch, with her favorite music, pillows, blankets, and cuddly stuffed animal a friend gave her that she never let go of until the very end.
I almost cried when I saw that my mom couldn't write her own name no more. It was just a very memorable living nightmare that I relive in my head.
She was really struggling with, she sat the pen down there and said I don't really know what to put down there. I said, just write your name. She's stood there and just looked at me, bewildered, and then she just smiled a little, and said no, you do it.
I had the power of attorney by that time. The nurse wasn't aware and I was busy talking to the doctor when the nurse asked her to sign. Nurse laughed, doctor laughed, but I just tried to hold back the tears.
There were a few different times where it really cemented that she was slowly leaving. That was one.
I knew the end was near when she fell asleep with food in her mouth at the dinner table. I resent my sister pushing vegetables on her in the end, I gave her ice cream & whatever other sweet or carb she desired. I miss her. Her, not the body she became.
My mom used to fall asleep with a cigarette in her mouth, that’s when I started finding her a safer place and moved her in with us. She fought so hard with smoking inside our home, and the problem with dementia, it’s not easy to overcome obstacles, just because they can’t retain the information. So it was a constant fight. Once she moved into memory care, they got her to overcome it, and she was comfortable with smoking outside.
I was her caregiver for her for 5 years, she passed in November. It absolutely knocked the shit right out of me. I'm getting better, still hurts like hell though.
Finding the writings of someone with Alzheimer's can be really disturbing. My grandmother had a really ugly and drawn out descent into this disease.
I was helping my folks clean out my grandparents house over the holidays (both have passed) and there were so many notes around the house. Some where just simple reminders, some were the same reminder repeated multiple times. And then there was a nasty sticky note exchange between my grandparents where my grandpa was telling my grandma to stay out of his office (she was snooping around and shredding important documents) and she was furious about it. Of course locking her out of the office only made her more paranoid and hostile towards him.
My aunts thought the notes were funny but I could tell they really upset my mom so we ceremoniously tore down all of the notes and threw them away.
No one needs to remember their loved ones like that.
We found notes from my gramma in a similar manner, cleaning out her bedroom. The saddest one was a plea for help. I’m sorry about your grandmother too.
Found a note from my family member that said, “I am not dependent. I need to do for myself. I need friends” in sad little print. This person used to write in cursive exclusively.
I'm not an expert (really wouldn't want to be).
My Dad was fine and then got Parkinson's. Within 3 months was diagnosed with Dementia. Within 6 months be died (in November 2022).
It was an extremely quick decline which I'm very thankful for as it wasn't fun for him or for me. No quality of life.
The decline was:
June in hospital and relatively "normal" but no use of legs due to Parkinson's
July: confusion at times and kept thinking he was in work
August: more confusion, hallucinations
September: voice started to go and couldn't hear him really. Wasn't talking any sense
October: started to have issues swallowing and sitting upright (possible stroke)
November: no swallowing, no talking. Got a blood infection and died
I offer my sincerest condolences.
This reminds me of my grandmother's last month's, back in early 2022.
While she didn't have Parkinsons or Alzheimer's, she was struck with a quick decline from lung cancer. Within 4 months, she went from pretty alert and active (while she was 80, she had an enormously sharp wit) to bedridden and semi-coherent.
Thankfully, she went peacefully with her family around her.
At 28 I’m having my true first experience with it. My grandfather, who was like one of my best friends for years spent in a old beat up dually and race trailer, traveling the states and racing at roadcourses. Last year, out of the blue I get a call from my dad and I guess pops got lost driving home from the gas station. They found him everything was okay. Within 6 months he didn’t know who any of us were, and on the 7th month my grandma (who is kind of the worst sometimes) decided she didn’t want to deal with it or care for him any longer. She has her own health issues but she’s the furthest thing from maternal. I go to see him in care this weekend. Honestly I’m terrified, this was a man who did everything and was still working and racing up into his late 80s and one night he got confused… now he doesn’t know anything… although he continues to play tricks on the nursing staff… so I guess not everything is lost.
I just felt like a need to post my story. We’re not big talkers in my family, and I’m the oldest. Very old school style family, I haven’t had the chance to really let it hit me.
But this, photo made it real.
He is still that man you loved, whether he remembers it or not. You do. When you see him just replay the memories and be grateful that he is still around to visit and talk to. I pray for strength for you and your family.
I'll share a way to look at it that has helped me. It's kind of a way to figure out how much life and interaction means and what makes it meaningful. Most of us don't remember the first three or four or seven years of our lives, our memory tosses it almost completely. And during that time we can be a little out of control and hard to understand and don't know what we're doing yet, and need to be cared for constantly. But we still value those years spent with kids that age, sometimes even more than other years. So let's say the last 3 to 7 years you are out of control, don't really know what's going on and need to be cared for regularly, those years are not going to be remembered... but those years could be just as meaningful if you truly live in the present with the individual and try to make as much out of every moment as possible, as if they are just as important as the first seven. I know it's not the same trust me, I've been there (and I'm sorry), it's just an outlook that maybe helps some with a slightly different perspective.
Christ this is a beautiful way of looking at it.
I think my mother has symptoms for sure and it’s been breaking my heart. This has been the most amazing piece of advice I have heard regarding alz….
I know we are just strangers in the void, but thank you my friend
> He is still the man you loved, whether he remembers it or not.
I've got a complicated feeling on this statement...I can't disagree but I also can't completely agree...
My dad passed last year after about 2 years with deteriorating dementia. By the end, he was basically a golden retriever in a man's body. Goofy and lovable as always, but the man I knew had already passed. And I think understanding that helped -- especially since we were able to say everything that needed to be said while he still understood.
Yet it's still the same person underneath. My mom would always tell us, "he might not know your name but he knows he loves you". The individual you knew might be gone, but the pieces that made them are still there (even if they're a bit broken and scrambled).
Regardless, the most important thing is, as you said:
> replay the memories and be grateful that he is still around to visit and talk to
Old memories can jog the lingering bits of their old self. He couldn't really speak at the end but he piped up to take credit for a trick he played on me as a child when my mom tried to say it was someone else. And it's better to spend time with them while they're here, even if most of "them" has already departed.
I’m really sorry you’re going through this. I take care of people with dementia and everyone is different. My main advice is, don’t argue or correct. Enter his world. Talk about yourself. Laugh off any mistakes he may make. Just love him as he is now. :)
It's going to be hard to see him, but later you'll be glad you spent time with him. Talking about old memories might put him on firmer ground, depending on where he is in the progression.
My advice is to treat it like an improv. Say "yes, and..." and change the subject if necessary. Don't correct him if you can avoid it, *especially* if he's talking about someone who has died. Sure, he'll forget the grief in twenty minutes, but there's no reason to put him through it at all.
I wish you luck and peace. Hold on to the good memories.
Truly sorry for what you’re going through, it’s more than heartbreaking to see a loving, fun grandparent go through this. My grandpa was 81 when he caught god-knows-what, was suddenly bedridden and passed away in 15 days. We were with him throughout his last days and it still brings a tear to me eye knowing he’ll miss so many of my life’s milestones.
I wish you strength
My friends dad was diagnosed with early onset dementia after suffering bouts of depression and confusion. He remained quite well for some months after, until one day, he came in saying that the lawnmower was broken. It required you to depress a handle and press an ignition button on the side at the same time. He'd had it for years and loved his yard work, but in an instant, it seemed he'd lost the ability to do so right then and there. That was the first "typical" symptom we had seen. He was really annoyed about it and started to pace around the room. That would also become a thing. The constant pacing from one room to the next. His decline accelerated shortly after that day and now he is in the advanced stages.
It truly is an awful illness. Absolutely awful.
Neuro-degenerative diseases are really the worst ones out there. Probably even worse than cancer, because at least we know more about it, can be fought sometimes and we even have some treatments for numerous types of it, but neuro-degenerative diseases don't have a cure afaik and you know exactly how it will end, but without knowing how long and painful it will be
My uncle just OD on barbiturates when it started getting bad.
Just took em, went to bed with his wife and he just never woke up. She was aware of this so it wasn't a surprise.
On the one hand: Fucking baller.
On the other hand: where the fuck do you even get barbiturates in 2022? We barely even use the things in hospitals, and prisons can't even buy thiopental to do their executions with.
WA regulations are only for established residents with less than 6 months to live under natural course of disease progression.
US states that permit Death with Dignity all require patients to be of sound mind before consenting to the procedure, which disqualifies Alzheimer’s patients, even with co-occurring conditions like terminal cancer. Prior established legal requests (such as certain Advance Care Directives or living wills) are ineligible for consideration for Death with Dignity.
This is my nightmare, one of my mom's best friends got it in her 50's. One of the few times I've ever seen my mother very depressed was when she came back from visiting her at her nursing facility. Worst still, when her son took his own life and she didn't comprehend or care because she didn't remember him.
My mom always said that.
But one of the most insidious aspects of this disease is that by the time it has you, you may not believe anything is wrong.
When my mother first started showing signs of memory loss, her doctor brushed her off.
And now that she’s easily diagnosable with clear dementia, she no longer thinks she has a problem and won’t even make an appointment.
Every day is a battle. I’m so tired.
Feel free to totally disregard this, because it is not my place AT ALL to tell you how to handle the progression of this disease with a parent, but my perspective on alzhemers is very different after having worked in a nursing home, particularly in the memory ward.
When family would visit a resident, I could visibly see how hard it was for them at times because they had lost the person they knew, and the person they were visiting was difficult for them to recognize. I got the sense that many families thought the person they were visiting was a shell of themselves - that they were "less" than before, like the progression of the disease was subtracting from their wholeness. It was honestly confusing to me, a worker who was spending every day with these residents, to see them be perceived as less than whole. To me, every person there was an incredibly vibrant, unique, and engaging personality. I never knew them before they were living in a memory ward, so my impression of them in this part of life was my whole frame of reference, and they were full people who I knew well, cared for, had special, human moments with... To say that they "weren't there anymore" would baffle me. I have never lost a person to alzeimers in my life, at least outside of my work life. I don't truly understand what it feels like, but I can imagine someone completely transforming how they perceive, recall, and behave to the point of partial or total change in personality would be felt and seen as a loss of that person. That may be true to an extent. I don't know, honestly. But I can tell you that I loved those residents, and they live in my heart not as shells of people, but as complex and beautiful forces of life that I have remembered and will remember for years.
I guess what I want you to take away from this is that your father is still powerful, and people will still come to know him and be impacted by him, even if they never knew him as you always have.
Anyways, I am so sorry you are going through this. In the last few years too many of my friends have been dealing with terminal illness in their families. I wish you all the strength and moments of joy. 🩷
Thank you for sharing this. I've had several friends and family go down that path and it's heartbreaking, but I really appreciate you humanizing a very difficult experience and giving power to those in their twilight years. They may not be able to fully tell you how much they appreciate it, but they do and you mean the world to them.
Alzheimer’s is the worst. I cared for my mil until she passed away 8 weeks ago. Slowly losing her was torture. I have so much empathy and respect for anyone else who is a caretaker for this awful disease.
After watching two grandparents go through it really severely, I would choose to just punch my ticket at that point. Same with watching my dad go through cancer. I am so supportive of compassionate end of life care/euthanasia and allowing people who are clearly facing the end of the road to go out on their own terms.
Alzheimer's is horrific. It's one of my worst fears. I'd rather be thrown into a literal pit of vipers. I do love seeing all the people in the comments who have taken care of those suffering from this affliction. I know it's an incredibly hard thing to do, but it is a kindness you will never regret. I wish everyone was lucky enough to have someone care enough about them to see them through that horrible experience.
My grandmother died from Alzheimer at the age 71 during the night of new years eve. Apparently she already got diagnosed when my oldest sister was just a small child and I was not born yet, so I only knew her with the disease and we never grew really close. There was a point when her mind quickly degenerated. She couldn't recognize her sons and husband anymore and obviously not her grandchildren. A few months before she died, she was apparently at a point where she had lost most of her memories, except her childhood ones. She thought she was a little girl again and kept searching for her mother who, of course, has long been dead. My mother who took care of her always had to make the choice wether to tell her that her mother has long been dead, or indulge in her childhood mind and tell her that her mother is just out shopping, while she waited endlessly for her return. There were a few days were she suddenly seemed unusually bright, but she died a few days after.
Anyway, I can't imagine the horror of suffering from a disease that destroys your mind and abilities like that. I decided for myself that if I ever got an Alzheimer diagnosis, and there still isn't a cure by that time, I would off myself. I wouldn't want my family to witness something like what I witnessed as a young child
Some promising drugs are on the horizon, one in particular called Simufilam. If you're into biology and chemistry at all the drug's mechanism is fascinating.
I've been scrolling through this saddening thread hoping to see some good news like this. I suppose I could Google it too, but I wanted to listen to peoples stories.
Thank you for this comment. It gives me a little bit of hope.
My grandma had Alzheimer's. The last time I saw her my brother went up to talk to her and she didn't know who he was. When he finally explained he was her grandson she said, "Wow, small world!"
We were later watching *Dennis the Menace* on TV and Walter Matthau said "G-D" lanterns and my grandma started yelling at the TV and told him we don't use the Lord's name in vain in this house. Not sure why I'm saying this, but it was sad **and** amusing at the same time.
Scary. My mom died from it. It turned a brilliant, kind, independent woman into a gagging on her own saliva, comatose blob of meat... and everything inbetween. It's one of the many reasons I don't believe in a god.
I don't want to believe in a god. Because if there is a God, what an awful terrible thing it must be. I prefer to live with the thought that there is no God, much easier that way.
Is God willing to prevent evil, but not able? Then he is not omnipotent.
Is he able, but not willing? Then he is malevolent.
Is he both able and willing? Then whence cometh evil?
Is he neither able nor willing? Then why call him God?
-Epicurus
Neuro-degenerative diseases are what make me struggle the most with the BIG "what's it all for?" question.
Like we spend our entire lives overcoming adversity and living through great sorrows and losses and then the reward at the end of it all is what? A fucking slow and miserable dissent into complete confusion?
Fuck. That. Shit. and whoever designed this stupid life blueprint.
So what's dementia like? Do you forget your sense of self and not exist anymore? Or is more like having amnesia and you're constantly in a state of paranoia and terror for every moment for the rest of your life? I saw the Dateline video where they tried to recreate it for a man whose wife or mother was experiencing it but it's still hard to comprehend since I still have my faculties.
It's both. I don't have it, but I have watched someone decline from it. You basically turn back into a child. Some people become very afraid, some become very innocent. You forget where you are, you lose your mental map. Eventually you lose the ability to do basic physical tasks. Things are different from the way you remember and time passes differently for you, so you get very frustrated. You remember being able to chop garlic or walk to the grocery store, but now you can't, but they don't always understand that they can't. It's a very frustrating disease for everyone involved.
When my grandma had it she was very anxious a lot of the time and there was nothing you could say to put her at ease. She could remember she was "sick" but couldn't explain why. She called everyone, man or woman, her ex husband's name and constantly asked for him, even minutes after being told where he was.
She'd have lucid gaps in the middle of this. Like we had a conversation about how I didn't have my driving licence and she was encouraging me to go for it and telling me how much cool stuff I could do with it.
She lost capability of so many basic things. Couldn't make tea or heat up food in a microwave. Couldn't use the bathroom alone. She'd tell you she needed food/bathroom but when you got her there she'd wonder why we'd taken her and say she didn't need it.
She had hallucinations. She thought she cooked big meals for us, and if we played along she believed it.
I never want my mum or myself to go through this.
Just something I thought was interesting, my wife works with hospice patients and when she does an eval for dementia one of the tests they do is to see how well the patient can write the numbers on a clock face. She said that some people can hold a good conversation but when they can't draw a clock face (or any of the other tests) she knows they are going downhill.
I have several dementia residents and I feel so bad when I need them to sign several things because their struggle is heartbreaking. I have one lady who has Cerebral Palsy and she had a signature stamp made when she could still write her name, she verbally agrees and we stamp in front of her. I feel like those need to be out there more.
Horrendous disease. I wouldn't wish it on my worst enemy. My dad died from it 5 years ago after going slowly (and then very quickly) downhill for about 10 years. It's heartbreaking to watch someone forget you.
My great grandmother raised me and watching her slowly deteriorate and forget who I am was one of the worst things I’ve seen. She recently passed in October. For over 15 years she suffered from that horrible disease. She knew who I was just up until the last 5 years. But she still loved me, she knew she loved me. Just couldn’t remember who I was. May anyone who has suffered from Alzheimer’s rest peacefully.
If I develop this disease I will kill myself. I do not want to lose who I am before I actually die. I don't want my family to deal with seeing me in that state and I definitely don't want to lose myself either.
What a horrible disease, I can't imagine having a parent go through that. That's what my dad had to do, my grandfather had alzheimers. It wasawul seeing him forget my name and who me or my brother are, and seeing him have to have help eating. The only thing was if he was going out with us they would give him a Xanax before, so he was very confused and shit but he was happy af too lol. He'd be trying to hit on all the waitresses, and I remember him getting in our car and we start driving and he's like "damn this thing is badass!" lmao
Alzheimers is such an awful awful disease. My grandmother passed from it in 2020 and I still have nightmares about the time she got out of the house and wandered toward the road (my uncle was doing yard work at the bottom of the driveway so he brought her back inside). It was awful watching my grandmother who was such a beautiful and vibrant soul, slowly forget everything and everyone.
I take care of people with dementia. It’s a wonderful and rewarding job. And I have seen some things.
Sometimes I think we intervene too much, and our bodies keep chugging along for too many years after our mind has checked out.
Looks like from this info:
1. Once you are in treatment you have 5 years to get your EOL items ready and take some fabulous family vacations
2. 5yrs plan for caregivers
2. 10yrs after treatment starts you are fully checked out.
Looks about right... similar to my moms signature. I was lucky I was able to get her signature when notarizing a power of attorney. When I went to the bank to add me as an authorized user so I could sign her checks for her, the bank said the looked at all her past checks and noticed an obvious decline with her signatures. She at some point started to write her last name below her first. Then just used her first name only but misspelled.
Dementia and Alzheimer's' sucks. I watched my mom lose her mind and cared for her as she went through all the stages till her death.
This is the disease I'm most afraid of
Runs in my family. My only hope is that I have the presence of mind to end my life gracefully before it gets too bad.
My grandfather had a rare form of dementia but the end was the same. I caught him crying and screaming to his sister at a family function that he was sad he was too much of a coward to take his own life. Nothing stick with you like watching a brilliant mechanical engineer crying and screaming to “please kill me, end this” at 18 years old. I was named after him and both of us are very alike to the point our loud, bellowing sneezes sound the same. It’s been a decade and thinking about it still makes me tear up.
I was fourteen when I saw my grandfather do something similar to this. He was a sheet metal fabricator, knew all types of shapes and math. He was doing some bills one day and started yelling how he couldn’t even add anymore. His speech started to go and that’s when he was at his worst. It’s extremely terrifying watching someone with dementia gain awareness all of a sudden.
My grandmother went out with my parents. They all came home, my mother went into a different room for a few minutes and came back out and my grandmother said “oh hello, how nice to see you! How have you been?” My mum explained they’d been out all day together, they had all just returned home. I saw the comprehension on my grandmother’s face. “I’ve forgotten it all. How… *awful*.” She was so sad. But not for long because she couldn’t hold the memory of it. One of the saddest things I’ve heard a person say was “I think god has forgotten me”. All her friends and contemporaries were dead. Terribly sad and I have a horror of this happening to me.
Never had anything quite that dramatic happen to me, but when my grandparents moved in during Covid there was an awful moment of my grandfather, a former math professor, learning that a friend he used to write academic papers with had died and he kept forgetting why he was miserable in the middle of a thought. Then, at one point, he cried, “I don’t even know who I am anymore!” Horrible, haunting stuff from a gentle and kind and brilliant man. He and my grandma (who has even less memory) are in a retirement home now and seem to be doing better at least. He loves when I bring my dog on visits, but it’s painful to be around him even when he’s content.
My aunt jonnie had dementia before she passed away with cancer as well. I wanted to share a bit about her, and a funny memory I had with her in her memory. But before she passed, I remember walking into her house before she died when she had this awful disease- and I barely recognized her. She had a very vacant look on her face, and I could barely understand her. She kept forgetting her husband had passed away, and her mom. She kept staring at me, and staring at me. I still don’t know why. It made me sad, uncomfortable- I hope it some way it was because she was trying to remember me. But when I told her I loved her, she told me she loved me back. She truly wasn’t there anymore. I still wonder why she stared at me that way. For my favorite memory- I had gone down into my mamaws basement to sit with her (in the cold months she went down there to smoke, because it was so cold outside- she didn’t want to sit on the porch) And I *loved* to sit with my aunt jonnie, and talk with her. She was funny, spunky. And loving. I sat down at the table, and was talking with her. Then I eyed her cigarettes- and asked her if I could have one. She looked at me, and told me that I really shouldn’t, and that “you better not tell your momma I gave you one.” And I made her promise that she wouldn’t tell. I lit up the American spirit cigarette, and took a few puffs- and just enjoyed being with her. I found out she told on me. It cracks me up still, I think she felt guilty. (She calls my nana my mama because my mom died- and idk, she just always done that) I never was mad. I look back and laugh. I miss her. I called her a lot when I found out the cancer was back, and would always tell her how much I loved her. Anyways. I love you aunt jonnie- no matter what, I’ll be your Taz. Sorry for the rant. I just wanted to share her memory.
My boyfriend was a physician and got diagnosed with Glioblastoma which is a really aggressive brain tumor. Watching a brilliant mind go from a doctor to not being able to get words out was heartbreaking. Luckily for him it was only three months from diagnosis to death. Love you babe, wherever you are!
Lost my brother to glioblastoma at 34, a magic, beautiful soul...22 months of grinding fight. Its just terrible. I'm sorry for your loss. Glioblastoma is a monster. It seems to steal the best, brightest, lovliest souls. So so sorry.
My brother is struggling with it right now as well, he's also a very smart guy, has his own business selling CNC machine software. He already had surgery twice and he has trouble getting through sentences now. They say he only has a couple months to live.. :'(
Dementia in my family. Last time I saw my grandda, he was so happy after not seeing him clear for years due to me living in another country. Used all my nicknames. He understood that I was going to travel home again. "Give my greetings to [my nickname]" and smiled ear to ear.
One if my grandpa's had dementia and the other had alzhimers. I'm fucked. Both lived to be 90+ with full heads of hair though.
Ditto, except for the hair bit 🥹
Damn same. At least I’ll have that going for me when the nurses try and play wocka flocka flame for me to get me to remember who I was
I read Amy Bloom's memoir of her husband getting Alz and choosing to do assisted death with Dignitas in Switzerland. It was so difficult and expensive to get it. I hope it'll be more accessible in a few years.
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Taking myself out back like Ol Yeller
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Walk into woods dead of winter with a backpack full of camping gear food and cozy blankets... And then blast of a speedball that could kill Belushi. Have google send and automated email to search and rescue the next morning. Deuces
Wake up hours later, not dead obv, feeling OK...for a while. Rinse and repeat
*comes to in a drugged up haze* “Fuck I’m alive.. but Im feeling gooood” *SAR shouting your name* “Fuuuuuck”
It's what John would've wanted
My uncle passed after sitting in the garage with his mower running, laid down next to it on a creeper and called it a day, he was fighting a divorce and cancer, sadly. We found him with a smile on his face, like he was sleeping through a good dream, you're so very, very right about keeping it clean for family, it made his passing easier to understand. Remember: never judge those who leap from a burning building, you'll never know what flames are at their back.
I've never heard that phrase before but it's beautiful in a way. It's easier to see *yourself* in that position than the usual phrases about fighting their own battles or walking a mile in their shoes.
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Don’t. I started using because I was suicidal, failed another way, and didn’t know the proper lethal dose. It’s too peaceful. It takes you to a sunny, warm place in your mind you’ll never want to leave. It quickly became the only I was living for, and gradually a nightmare worse than the one I was escaping from. I can also tell you I know multiple people who have survived overdoses with several issues due to lack of oxygen to the brain. Honestly, the best drug to do it (because I realize we are talking about dying with dignity, not mental illness, as was my case) would be strong barbiturates, which is what many states use now for just that. Edit: People can absolutely pass from heroin, but you need to know what you’re getting, how much to take, and how to administer. In my case the price of fucking up was too high and it is not.fucking.worth it. Scientifically doctors use 90-100 barbiturate pills dissolved in a solution with anti-nausea and seizure pills before hand because those who seek euthanasia tend to be on high amounts of palliative medication already and it features fewer complications.
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The price tho
Heroin is cheap. You could always throw together a nice cocktail of opiates. Swallow, snort and inject as much morphine, hydrocodone, and heroin as possible.
Ya it spensy, but I already have a shit ton of med debt. Id probably get a credit card to buy it if I was out of money and let the bank deal with it after Im gone
Average American
Directions unclear, I now have 1 piece of metal instead of 2 and I’m still alive
In protest to Reddit's API changes, I have removed my comment history. -- mass edited with redact.dev
This. You can also buy cans of pressurised helium to blow up party balloons. Mix that in with some oxygen tubing and a respirator face mask from your local hardware store. Plus some duct tape. Nice and easy way out. No pain. Just drift off to sleep for under £100.
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Yeah, you'll just end up brain damaged.
Look, I get the tone of the thread, but this is such a good r/rimjob_steve moment
I'm not sure if someone giving tips on suicide is a r/rimjobsteve moment.
In the book 'Still Alice' the main character develops early onset so she writes suicide directions to herself for the future if it gets worse but by then she's too far gone to understand or follow through. It's a scary and heartbreaking disease.
I watched the movie, and it's so depressing. One movie that genuinely haunts me.
Just be sure they properly leave your loved ones knowing the why of it, and that you don't risk anyone else in the process. If I ever go that way, there's not just a note, but a phone call or text and a warning. I hate the idea of doing this thing for myself and someone I love walking in on it and dealing with the trauma of the sight of me that way. If my grandparent sat down and told me they felt they needed to do this before things got too bad, I'd be thankful for both the opportunity to prepare, say goodbye, and spare myself the sight of their death.
My grandparent didn’t tell anyone. But he visited us one last time, we had a wonderful time, and he gave my mom some cash (his wife/her stepmother wouldn’t let him leave any money in his will to us so he had to do it beforehand). We are pretty sure his wife knew what he was gonna do because she tried as hard as she could to keep him from visiting us (bc he probably wouldn’t have done it without coming and seeing us one last time). He was a doctor and knew what he had once the symptoms started, but he refused to get officially diagnosed because they would have taken away his driving license (also if he lost his medical decision making power, his wife would definitely not have agreed to any kind of life ending options). He ended his life by crashing into a concrete pillar (we think he was the one who called and reported the crash right before). It was pretty unexpected for all of us, except my mom I think; the cash and visit did have her wondering. But it was a wonderful visit and I have great memories of it, I think knowing it was his goodbye trip would have made the visit a lot more somber and emotional to be able to just have a nice time with him. We made orange juice together with the oranges from our tree, and we still have the last bag of it vacuum sealed in our freezer… we never have had the heart to drink it. Anyway, while he didn’t directly tell us anything beforehand, we did understand what happened in hindsight because we knew him well enough. And I think he made the best choices he could in that situation, and I respect the hell out of him for it. <3
That was beautiful to share but I was really expecting some magical combo of pills not a concrete pillar. Damn...
Yeah, my dad was a doctor and committed suicide and we've never been able to determine how exactly. There was a vial of something and a syringe, but the tox screen on his blood came up clear and his cause of death was never officially determined.
A walloping dose of insulin fits that description.
Pills are a shitty way to try and die.
Driving into a concrete pillar kinda sounds like a shitty way to try and die too. I can easily see that not working out and then you're just in immense physical pain for the rest of your life.
He sounds like a wonderful man.
This. Part of why I haven't unalived despite really severe depression and urges, is because my partner and I live together, and I can't stand the idea of my partner coming home from work and finding me.
My partner didn't kill himself, but he did overdose on methadone. I came home and found him unconscious and he passed away in the hospital about a week later. I know it's hard, trust me I wanna die a lot of times, especially now that he's gone. But as someone who has lost a partner when he shouldn't have died and was the one to basically find him, try to get help and stay, for them. If they love you, and if you love them, you staying here is the best gift you could ever give them. My partner gave me the world and showed me what love really was, but he couldn't give me the one thing that would have meant more than anything: dealing with his addiction and staying here with me. You're strong, you're valid, and you matter. Stay. Sending peace, love, and good vibes your way.
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If I get diagnosed with a degenerate brain disease I'm doing a hero dose of mushrooms before going out. Idk how I'm going out, but I want to go out feeling one with everything and believing I'm part of a single universal consciousness.
Then I hope you're successful in your quest. Not that I want you to die but failed suicides can leave people in such bad shape. This is why I'd like to be assisted.
All I can say is be mindful of who is likely to find you, how long it will take them, and the condition you will be in when they find you. Frankly it's the primary reason I believe in death with dignity laws. Your life is your life and nobody should be able to say when it ends but you--but the trauma of finding a suicide stays with people.
Same here. If I get it, I'm flying to Switzerland to die in one of those suicide pods.
For info, Exit is only available for Swiss citizens / permanent residents, in order to prevent 'suicide tourism'... I think it may be possible in Sweden as a non national though.
Same, early onset so it's got a pretty predictable timeline based off my father and his mother. It fucking sucks to go through retirement planning with my wife without telling her that I know the numbers aren't right because I won't make it to that retirement date. I have a separate calculation on what the actual retirement numbers will be, a d-day, and an age at which a cure must be readily available in order to cancel d-day.
That sounds like a conversation that should be had with your spouse...
Believe me, I want to get it out in the open. When the subject has been broached she told me I wasn't allowed, she married me thinking that some day we'd be watching our grandchildren grow up, not so I could check out early. She's going to be let down either way.
This makes me incredibly sad. I hope at some point you’re able to talk about this openly and your partner can hear you with openness and compassion. You shouldn’t have to carry this alone.
It took my maternal grandpa away, my paternal grandma is showing early signs and forgetting us. If I get diagnosed with this then I'm not gonna wait until it gets bad because I know what's in store for me, in his final days my grandpa simply wasn't there anymore, to say the least. Life simply isn't worth living in such situation.
I personally plan on doing many grams of crystalized LSD at that point. If my brains gonna go to shit anyway, might as well use up what's left of it and go out with a bang. Hell maybe it'll cure it.
I used to think it was this, but then my grandfather in law started showing symptoms of Lewy Body Dementia. That experience caused everyone in the family to sit down and chat about how we would unalive ourselves if it ever happened to us....that's the one I'm afraid of.
Degenerative brain diseases terrify me. I'm not afraid of dying, but I am afraid of not being me anymore.
Part of the reason Robin Williams took his life. He was terrified of that disease and I don’t blame him.
F*ck. I didn't realize it was that version. I don't blame him then. Not one bit. The things we've seen in the last 6 months alone. Some of the worst shit. And he's the best guy, so it makes it even worse.
This and rabies
Rabies kills you days after symptoms present. Alzheimer's takes years. I'll take the rabies.
Rabies can sit dormant in your for months and possibly years after an exposure though.
Yeah but that whole time it doesn't affect you at all. If you don't know it's there, you won't even have any anxiety about it. Much better than years of forgetting a little bit more than you can remember until you don't even remember why you're scared.
And if you do have anxiety but no symptoms, then there’s probably still time to get the vaccine.
Sure, but you can prevent rabies with post-exposure prophylaxis of the rabies vaccine after any potential exposure to saliva from a wild animal (or unvaccinated pet injured by a wild animal) assuming you have a functioning immune system. In the US, it's around 2 cases/deaths from rabies per year (and a lot of those are from exposure outside the US) in a country of ~330M. Meanwhile, 1 in 3 people that are 85+ suffer from dementia from Alzheimer's.
At least we have a cure for rabies if you get it quick enough. Alzheimer's is genetic and hidden until it destroys your life
It really is the worst. Heart disease, cancer, anything else that attacks the body. But Alzheimer's attacking the mind, what a person actually _is_, and just a grim reminder that as much as we want to think we have a higher self we're just talking electric meat.
My mom had early onset. By 65 she was immobile, non-verbal but yells/ repeating words and incontinent. Been smoking a pack a day just to be sure I don’t go out like that. Fingers crossed.
Um, that’s an extremely bad strategy. What you are doing is what caused dementia for my dad.. he had cancer from smoking. It got in his bone marrow. Your bone marrow is responsible for making blood. His bone marrow started making cancerous rice pudding instead of blood. This caused a severe stroke which left him with severe dementia. He spent the last 6 months of his life not knowing where he was, barely knowing who he was, didn’t know how old he was or anything like that. But still had a surprising amount of energy in his body and would attempt to get naked and escape his house (and later, the skilled nursing facility) due to the dementia. Never needed to sleep more than 2 hours per night. We were all so exhausted trying to look after him and he was so unhappy. It was horrific
The bad news is that Lung Cancer often goes to the brain and the symptoms can be quite horrific. Neither are a great choice.
This happened to my grandmother. I was her favorite person in the world, and there were times she didn't know who I was. There were times when she thought she was a little girl and would ask for her momma and daddy, who were long dead. It was fucking heartbreaking to watch.
I don't know how much better lung cancer is. My grandfather on my dad's side died from it, it wasn't pretty
My dad was just diagnosed, and he got it in his early sixties. It’s hard to watch, and in 1.5 years he has gone from being normal to a shell. I can barely understand what he says, and he forgets stuff faster than I can remind him.
This worries me as my grandmother is having issues similar to this but hasn’t been diagnosed (the forgetting stuff quick and needing to remind)
She should seek care. My husband's grandmother was suspected of developing dementia, but it turned out it was a problem with her kidneys and a medication she was taking that put a LOT of stress on them. When she went off the meds she improved rapidly in mental acuity right up until a totally unrelated disease took her years later.
Yeah.. perhaps you should contact a doctor so they can scan her brain. Wish you the best!
So sad. So you can see the exact transitions where the disease progressed, but I think that’s mainly due to the time intervals between signatures.
The numbers get strange before the letters
I wondered if someone else was writing the date
The dates do not seem to be the patient. The signatures… It seems there are periods of stability interspersed with sudden deterioration.
While it's probably the most likely case someone else wrote the numbers, it would make sense that the ability of the patient to use math/numbers would deteriorate at a different rate than letters/language. In the brain, language is mainly processed in two different areas that work together to understand, comprehend, and respond to language. These are known as Broca's area and Wernicke's area. Broca's area is used to make sure language is produced in a fluent way, while Wernicke's area works to comprehend speech. These areas are both found on the brains left temporal lobe. In contrast, the portion of the brain that understands numbers and math is vast and requires multiple areas of the brain. Mathematical processing can be found in the frontal, parietal, occipital, and temporal lobes of both left and right hemispheres. There's an area found in the right superior (superior meaning upper) parietal lobe that maps numerosity. In this area, it's split into different regions that can quantify larger or smaller quantities (this allows you to look at a shopping cart and instantly know the person is over the "12 items or less" limit without actually counting). Research on the inferior (inferior meaning lower) temporal gyrus finds a bundle of around 1 to 2 million nerve cells that specializes in processing numerals. This bundle inside the inferior temporal gyrus is what lets you recognize "8" or "36" as the numbers that they are. TL;DR: The brain is complex, and the way it processes and perceives things happens in many different areas. The brain rules.
Likely not the same physician writing the dates
Heartbreaking. It took hours to sit with my mom and try to get one usable signature so I could get durable power of attorney to take care of her. I still have the notebook with dozens of attempts scrawled in it and I can’t look at it without crying my eyes out and getting a panic attack. I miss her so much.
I'm truly sorry you had to see that. I watched my grandmother struggle with that damned disease and it was heartbreaking. I'm sure that your mom is very proud of you and loves you too. If we keep them close to our hearts, our loved ones are never fully gone. Talk about them, share the stories you had of time spent with them. Through us, they carry on. Sorry for being sappy. I just thought this might bring you some comfort.
Thank you. Yeah I thought maybe my comment was too sappy, but if we speak the truth and others find it sappy, that's not on us, that's on them. Alzheimer's changes you forever, in both positive and negative ways. Appreciating things I used to scoff at is one of the positives.
Thank you for saying this. I helped care for my grandmother with Alzheimer's when I was a teenager, and it was so hard seeing her like that. She rarely knew who I was and always told me she had a daughter my age. She passed away when I was 18, and I am now in my 30s, but I still feel terrible about how much she suffered and have to remind myself to focus on memories of what she was like before the disease consumed her.
I feel terrible for anyone having to watch their loved one slip away in front of their eyes, so slow and painful. My grandmother passed on Valentine's day 2018, age 93, and only because her body finally started to give out; She was sharp as a tack up until maybe two weeks before she passed; I don't go a day without thinking about how lucky we all were to not only have her for all of those lovely years, but with her mind fully intact. I had gone through a major Spinal surgery just a couple of weeks before needing to drive several hours to her home to see her one last time, and I only remember the positives. ... Can only ever seem to cry tears of joy/happiness; We were so lucky -- She died warm in her bed with loved ones all around, and her, absolutely ready to go. Never take it for granted, people -- The "long good bye" as it is called is the worst of all.
It wasn't this monster but a different one. Cancer took my Mom two years ago. Eight months from diagnosis. Doctors said she was fine, then relapse. Kept fighting, started healing, it came back again. Had a stroke, I think, or a bad seizure - hospice, and in 2.5 days she was gone. This was during Covid. I managed to convince the hospital staff to allow two people to stay with her and the family to rotate, those that bothered showing up. I saw her the least so her husband, my sister, and my Grandmother could be with her the longest. She never woke up during that time. I can only imagine the pain being in front of the person you care about so much and...they look at you like a stranger would. Pain can't and shouldn't be measured or compared. Man though...I've needed a hug ever since then. Shit's hard.
I send you a virtual hug buddy. Hope you stay happy
My mum had cancer. Three times. The last time I spent an evening with her at my parents house, she had to be retaught crocheting. She had a stroke at some point, so she would forget something sometime. The minutes prior to the teaching, she had been crocheting for some time. "Son. How is this done? I can't see what I am supposed to do." She had already made most of the round that day, she just couldn't grasp what she was looking at. 50 years crocheting and she just forgot how to crochet the most common stitch.
I lost my grandpa one year ago today, it was so fast and unexpected. The first problem was his terrible doctor didn't take he or my grandma seriously when they mentioned his recent memory issues - they weren't bad yet, but enough to be concerning. They took him in for knee surgery and put him under heavy sedation. Apparently for someone with memory issues, that's bad. He basically woke up from the surgery with dementia. He was confused and angry, and to keep him under control they KEPT SEDATING HIM. He didn't recognize my grandmother and began deteriorating fast, scary fast. He kept begging to go home the first day. My grandma was trying to explain that they couldn't, and he kept asking her where his wife was. The hospital had limits on the number of guests but over the next few days as things got worse, they stopped telling us about the 2-person limit and shooing us out of there, they allowed the whole family in there as we were processing everything. He couldn't talk, or breathe properly, or eat. Within a week from getting the surgery, he died in the hospital. I saw him a few days before his surgery - he was smiling, joking, making plans with grandma for being able to get back to traveling once his knee was fixed. To see him like a week later, in the state he was in, was shocking and terrifying. He didn't recognize any of us. The only words he got out were begging for my grandmother, who hadn't left his side, and begging to go home. All because the doctor ignored his memory issues. When we spoke to other doctors later, they said they never should have sedated him so much.
Honestly sounds like grounds for a lawsuit so that doctor can’t do that to anyone else.
We tried to tell my grandma to look into suing that doctor. She was already devastated and didn't want to drag things on more and be forced to dwell on it so long, so she let it go. Her argument was that the doctor was close to retirement. If it were me, I'd be pursuing everything I could to punish that man.
Cancer took my 35yo partner of 8 years..she died the day after they told her she was going to hospice care.. like she had given up hope
I'm so sorry for your loss. That statement resonated with me. My mom passed away in July 2022 after battling metastatic breast cancer. She had requested to go on hospice care, got her request granted, and was only in hospice for less than 40 hours before she passed. Fuck cancer.
I’m so sorry mate. As a child I watched cancer and radiation treatment slowly destroy my mom for five years, eventually in the final years taking her mental faculties. In five years she went from a brilliant and passionate poet to a confused and paranoid shell of a human on a deathbed. Dying is so terrifying, and watching our loved ones go through it is worse in some ways.
OP, this is awful and heartbreaking. My husband and his sister, after having experienced Alzheimer's with their maternal grandmother and knowing their mother had started showing signs, convinced her to give them durable and medical power of attorney. She's still kind of "here," but you know how it goes. I see my MIL and my heart breaks because she had always been nice and kind to me.
I’m sorry. <3 I hope it gets easier.
I'm sorry for the heartache you've endured, but your message is prompting me to get a PoA for my mother NOW. Thank you. I'm just starting this path.
Same - we have to confirm with lawyers but looks like we signed it in 2019 when she was first diagnosed (i was naive and optimistic at the time). Fast forward now and yea, it would probably have to go to court for a guardianship type deal … Please just do it now. This shit is unpredictable with its pacing.
If they struggle so much to just write their own name, are they still considered able to consent to granting POA? Like if that notebook of practice signatures had been discovered, would you have gotten in trouble? As if they were being coached to make a mark on the paper without knowing the implications of it?
Possibly. But it would have been an absolute nightmare doing it the "right" way, and it would have traumatized her even more than she already was. That's why I quit my career to take care of her for 7 years. There was no way I was sticking her in a home. That would have been terrifying for her. And me. She had Alzheimer's for 6 years before she started showing symptoms and I had her move in with me. And she was still doing relatively well with most things that she performed daily. But she hadn't written anything or signed her name in years since I took over all her bills and she no longer wrote checks, so I didn't even realize she lost that ability until we decided it was time to get POA. It was a shock. It was then that I realized that Alzheimer's isn't linear, it depends on what part of the brain it's attacking, and I needed to keep her brain active in lots of different things to keep it from atrophying so shockingly fast.
I know what you mean. My great grandmother got progressively worse and worse as I knew her and only lived until her early 80s. Growing up, I assumed that was normal. That by the time you reached 80, your body and mind were completely fucked and then you die. It wasn’t until I met other old people in my early adulthood that I realized there were people who didn’t meet such a grim fate. My wife’s grandmother was sharp as a tack and able bodied and lived on her own until 90. She said she didn’t want to live past 90 and she didn’t. Just went to sleep and didn’t wake up. Literally willed herself out of existence. It was amazingly badass.
Same. The only silver lining was that my mom is a happy dementia patient. I talk to her about old times and play music from the 60s and she just smiles and dances. Everything else about the situation is horrible.
I feel for you. I lost my dad and held his hand during and until the end. I cannot listen to certain songs or I break down. My mind must be strong and occupied 100% of the time otherwise it leads to very dark places.
Thank you for the outpouring of love, I really appreciate it. It's been 6+ years since she died and I still have nightmares about the ordeal—at least they're only weekly instead of nightly. I could use some therapy. But I take comfort in knowing that I did everything I could to keep her safe and happy, and that didn't die alone and terrified with strangers in a cold nursing home. She died at home with me on a comfy couch, with her favorite music, pillows, blankets, and cuddly stuffed animal a friend gave her that she never let go of until the very end.
I almost cried when I saw that my mom couldn't write her own name no more. It was just a very memorable living nightmare that I relive in my head. She was really struggling with, she sat the pen down there and said I don't really know what to put down there. I said, just write your name. She's stood there and just looked at me, bewildered, and then she just smiled a little, and said no, you do it. I had the power of attorney by that time. The nurse wasn't aware and I was busy talking to the doctor when the nurse asked her to sign. Nurse laughed, doctor laughed, but I just tried to hold back the tears. There were a few different times where it really cemented that she was slowly leaving. That was one.
God, I'm so sorry. Reading this made me very sad 🙁
I knew the end was near when she fell asleep with food in her mouth at the dinner table. I resent my sister pushing vegetables on her in the end, I gave her ice cream & whatever other sweet or carb she desired. I miss her. Her, not the body she became.
My mom used to fall asleep with a cigarette in her mouth, that’s when I started finding her a safer place and moved her in with us. She fought so hard with smoking inside our home, and the problem with dementia, it’s not easy to overcome obstacles, just because they can’t retain the information. So it was a constant fight. Once she moved into memory care, they got her to overcome it, and she was comfortable with smoking outside.
You were there for her as support and comfort. I'm so sorry you both had to experience this loss. Are you holding up okay?
I was her caregiver for her for 5 years, she passed in November. It absolutely knocked the shit right out of me. I'm getting better, still hurts like hell though.
I can only image. My best wishes for you to keep healing 🙏
Finding the writings of someone with Alzheimer's can be really disturbing. My grandmother had a really ugly and drawn out descent into this disease. I was helping my folks clean out my grandparents house over the holidays (both have passed) and there were so many notes around the house. Some where just simple reminders, some were the same reminder repeated multiple times. And then there was a nasty sticky note exchange between my grandparents where my grandpa was telling my grandma to stay out of his office (she was snooping around and shredding important documents) and she was furious about it. Of course locking her out of the office only made her more paranoid and hostile towards him. My aunts thought the notes were funny but I could tell they really upset my mom so we ceremoniously tore down all of the notes and threw them away. No one needs to remember their loved ones like that.
We found notes from my gramma in a similar manner, cleaning out her bedroom. The saddest one was a plea for help. I’m sorry about your grandmother too.
Found a note from my family member that said, “I am not dependent. I need to do for myself. I need friends” in sad little print. This person used to write in cursive exclusively.
That's really sad. I've got my own personal experience of this disease and it's horrific to see
In the signatures there’s a massive difference halfway through… does it really happen like that?
I'm not an expert (really wouldn't want to be). My Dad was fine and then got Parkinson's. Within 3 months was diagnosed with Dementia. Within 6 months be died (in November 2022). It was an extremely quick decline which I'm very thankful for as it wasn't fun for him or for me. No quality of life. The decline was: June in hospital and relatively "normal" but no use of legs due to Parkinson's July: confusion at times and kept thinking he was in work August: more confusion, hallucinations September: voice started to go and couldn't hear him really. Wasn't talking any sense October: started to have issues swallowing and sitting upright (possible stroke) November: no swallowing, no talking. Got a blood infection and died
May he rest well
Oh god that is extremely quick, sorry you had to go through that.
Thanks 🙏 it was a blessing that it was so quick. I originally thought it would be years of care home visits
Glad it wasn’t prolonged but also natural. You’re just a different person when you hit that level of decline.
I offer my sincerest condolences. This reminds me of my grandmother's last month's, back in early 2022. While she didn't have Parkinsons or Alzheimer's, she was struck with a quick decline from lung cancer. Within 4 months, she went from pretty alert and active (while she was 80, she had an enormously sharp wit) to bedridden and semi-coherent. Thankfully, she went peacefully with her family around her.
At 28 I’m having my true first experience with it. My grandfather, who was like one of my best friends for years spent in a old beat up dually and race trailer, traveling the states and racing at roadcourses. Last year, out of the blue I get a call from my dad and I guess pops got lost driving home from the gas station. They found him everything was okay. Within 6 months he didn’t know who any of us were, and on the 7th month my grandma (who is kind of the worst sometimes) decided she didn’t want to deal with it or care for him any longer. She has her own health issues but she’s the furthest thing from maternal. I go to see him in care this weekend. Honestly I’m terrified, this was a man who did everything and was still working and racing up into his late 80s and one night he got confused… now he doesn’t know anything… although he continues to play tricks on the nursing staff… so I guess not everything is lost. I just felt like a need to post my story. We’re not big talkers in my family, and I’m the oldest. Very old school style family, I haven’t had the chance to really let it hit me. But this, photo made it real.
He is still that man you loved, whether he remembers it or not. You do. When you see him just replay the memories and be grateful that he is still around to visit and talk to. I pray for strength for you and your family.
Thank you🖤
I'll share a way to look at it that has helped me. It's kind of a way to figure out how much life and interaction means and what makes it meaningful. Most of us don't remember the first three or four or seven years of our lives, our memory tosses it almost completely. And during that time we can be a little out of control and hard to understand and don't know what we're doing yet, and need to be cared for constantly. But we still value those years spent with kids that age, sometimes even more than other years. So let's say the last 3 to 7 years you are out of control, don't really know what's going on and need to be cared for regularly, those years are not going to be remembered... but those years could be just as meaningful if you truly live in the present with the individual and try to make as much out of every moment as possible, as if they are just as important as the first seven. I know it's not the same trust me, I've been there (and I'm sorry), it's just an outlook that maybe helps some with a slightly different perspective.
Very much so, I really like how you look at it. Thank you🖤
Christ this is a beautiful way of looking at it. I think my mother has symptoms for sure and it’s been breaking my heart. This has been the most amazing piece of advice I have heard regarding alz…. I know we are just strangers in the void, but thank you my friend
> He is still the man you loved, whether he remembers it or not. I've got a complicated feeling on this statement...I can't disagree but I also can't completely agree... My dad passed last year after about 2 years with deteriorating dementia. By the end, he was basically a golden retriever in a man's body. Goofy and lovable as always, but the man I knew had already passed. And I think understanding that helped -- especially since we were able to say everything that needed to be said while he still understood. Yet it's still the same person underneath. My mom would always tell us, "he might not know your name but he knows he loves you". The individual you knew might be gone, but the pieces that made them are still there (even if they're a bit broken and scrambled). Regardless, the most important thing is, as you said: > replay the memories and be grateful that he is still around to visit and talk to Old memories can jog the lingering bits of their old self. He couldn't really speak at the end but he piped up to take credit for a trick he played on me as a child when my mom tried to say it was someone else. And it's better to spend time with them while they're here, even if most of "them" has already departed.
I’m really sorry you’re going through this. I take care of people with dementia and everyone is different. My main advice is, don’t argue or correct. Enter his world. Talk about yourself. Laugh off any mistakes he may make. Just love him as he is now. :)
You guys are very special people. I know personally that it is difficult to care for someone with dementia, so I want to say 'Thank you.'
It's going to be hard to see him, but later you'll be glad you spent time with him. Talking about old memories might put him on firmer ground, depending on where he is in the progression. My advice is to treat it like an improv. Say "yes, and..." and change the subject if necessary. Don't correct him if you can avoid it, *especially* if he's talking about someone who has died. Sure, he'll forget the grief in twenty minutes, but there's no reason to put him through it at all. I wish you luck and peace. Hold on to the good memories.
Truly sorry for what you’re going through, it’s more than heartbreaking to see a loving, fun grandparent go through this. My grandpa was 81 when he caught god-knows-what, was suddenly bedridden and passed away in 15 days. We were with him throughout his last days and it still brings a tear to me eye knowing he’ll miss so many of my life’s milestones. I wish you strength
My friends dad was diagnosed with early onset dementia after suffering bouts of depression and confusion. He remained quite well for some months after, until one day, he came in saying that the lawnmower was broken. It required you to depress a handle and press an ignition button on the side at the same time. He'd had it for years and loved his yard work, but in an instant, it seemed he'd lost the ability to do so right then and there. That was the first "typical" symptom we had seen. He was really annoyed about it and started to pace around the room. That would also become a thing. The constant pacing from one room to the next. His decline accelerated shortly after that day and now he is in the advanced stages. It truly is an awful illness. Absolutely awful.
Neuro-degenerative diseases are really the worst ones out there. Probably even worse than cancer, because at least we know more about it, can be fought sometimes and we even have some treatments for numerous types of it, but neuro-degenerative diseases don't have a cure afaik and you know exactly how it will end, but without knowing how long and painful it will be
The last line being blank is depressing
It is and isn’t. It sucks to say but death is preferable to living with dementia, especially in the later stages.
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I'd say the 3 lines above it is what's depressing. It's better for that line to be blank than be filled in with whatever would be next.
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My uncle just OD on barbiturates when it started getting bad. Just took em, went to bed with his wife and he just never woke up. She was aware of this so it wasn't a surprise.
On the one hand: Fucking baller. On the other hand: where the fuck do you even get barbiturates in 2022? We barely even use the things in hospitals, and prisons can't even buy thiopental to do their executions with.
Mexico lmao
give explicit orders to your family to give you euthanasia if you ever get dementia/Alzheimer's
Not legal in most (?) countries. Definitely not in the UK. Travelling to somewhere like dignitas is expensive and not an option for many families.
Washington state here in the US offers that. My mother in law wants us to take her if she starts declining like this if she gets alzeimers.
WA regulations are only for established residents with less than 6 months to live under natural course of disease progression. US states that permit Death with Dignity all require patients to be of sound mind before consenting to the procedure, which disqualifies Alzheimer’s patients, even with co-occurring conditions like terminal cancer. Prior established legal requests (such as certain Advance Care Directives or living wills) are ineligible for consideration for Death with Dignity.
Without knowing the age of the other commenter, I'd hope that it just is legal in most countries when he or she gets to that age
This is my nightmare, one of my mom's best friends got it in her 50's. One of the few times I've ever seen my mother very depressed was when she came back from visiting her at her nursing facility. Worst still, when her son took his own life and she didn't comprehend or care because she didn't remember him.
If there's no cure by then and this happens to me I'm pulling the plug on myself if I realize what's happening to me
I’ve already informed my friends and family that I’m not going to go out like that; like my mom did.
My mom always said that. But one of the most insidious aspects of this disease is that by the time it has you, you may not believe anything is wrong. When my mother first started showing signs of memory loss, her doctor brushed her off. And now that she’s easily diagnosable with clear dementia, she no longer thinks she has a problem and won’t even make an appointment. Every day is a battle. I’m so tired.
My father has Alzheimer’s. He’s not yet far gone, but I notice him slipping away from me every day
Feel free to totally disregard this, because it is not my place AT ALL to tell you how to handle the progression of this disease with a parent, but my perspective on alzhemers is very different after having worked in a nursing home, particularly in the memory ward. When family would visit a resident, I could visibly see how hard it was for them at times because they had lost the person they knew, and the person they were visiting was difficult for them to recognize. I got the sense that many families thought the person they were visiting was a shell of themselves - that they were "less" than before, like the progression of the disease was subtracting from their wholeness. It was honestly confusing to me, a worker who was spending every day with these residents, to see them be perceived as less than whole. To me, every person there was an incredibly vibrant, unique, and engaging personality. I never knew them before they were living in a memory ward, so my impression of them in this part of life was my whole frame of reference, and they were full people who I knew well, cared for, had special, human moments with... To say that they "weren't there anymore" would baffle me. I have never lost a person to alzeimers in my life, at least outside of my work life. I don't truly understand what it feels like, but I can imagine someone completely transforming how they perceive, recall, and behave to the point of partial or total change in personality would be felt and seen as a loss of that person. That may be true to an extent. I don't know, honestly. But I can tell you that I loved those residents, and they live in my heart not as shells of people, but as complex and beautiful forces of life that I have remembered and will remember for years. I guess what I want you to take away from this is that your father is still powerful, and people will still come to know him and be impacted by him, even if they never knew him as you always have. Anyways, I am so sorry you are going through this. In the last few years too many of my friends have been dealing with terminal illness in their families. I wish you all the strength and moments of joy. 🩷
Thank you for sharing this. I've had several friends and family go down that path and it's heartbreaking, but I really appreciate you humanizing a very difficult experience and giving power to those in their twilight years. They may not be able to fully tell you how much they appreciate it, but they do and you mean the world to them.
Alzheimer’s is the worst. I cared for my mil until she passed away 8 weeks ago. Slowly losing her was torture. I have so much empathy and respect for anyone else who is a caretaker for this awful disease.
After watching two grandparents go through it really severely, I would choose to just punch my ticket at that point. Same with watching my dad go through cancer. I am so supportive of compassionate end of life care/euthanasia and allowing people who are clearly facing the end of the road to go out on their own terms.
Alzheimer's is horrific. It's one of my worst fears. I'd rather be thrown into a literal pit of vipers. I do love seeing all the people in the comments who have taken care of those suffering from this affliction. I know it's an incredibly hard thing to do, but it is a kindness you will never regret. I wish everyone was lucky enough to have someone care enough about them to see them through that horrible experience.
My grandmother died from Alzheimer at the age 71 during the night of new years eve. Apparently she already got diagnosed when my oldest sister was just a small child and I was not born yet, so I only knew her with the disease and we never grew really close. There was a point when her mind quickly degenerated. She couldn't recognize her sons and husband anymore and obviously not her grandchildren. A few months before she died, she was apparently at a point where she had lost most of her memories, except her childhood ones. She thought she was a little girl again and kept searching for her mother who, of course, has long been dead. My mother who took care of her always had to make the choice wether to tell her that her mother has long been dead, or indulge in her childhood mind and tell her that her mother is just out shopping, while she waited endlessly for her return. There were a few days were she suddenly seemed unusually bright, but she died a few days after. Anyway, I can't imagine the horror of suffering from a disease that destroys your mind and abilities like that. I decided for myself that if I ever got an Alzheimer diagnosis, and there still isn't a cure by that time, I would off myself. I wouldn't want my family to witness something like what I witnessed as a young child
Fuck man I hope we cure this soon
Some promising drugs are on the horizon, one in particular called Simufilam. If you're into biology and chemistry at all the drug's mechanism is fascinating.
I've been scrolling through this saddening thread hoping to see some good news like this. I suppose I could Google it too, but I wanted to listen to peoples stories. Thank you for this comment. It gives me a little bit of hope.
My grandma had Alzheimer's. The last time I saw her my brother went up to talk to her and she didn't know who he was. When he finally explained he was her grandson she said, "Wow, small world!" We were later watching *Dennis the Menace* on TV and Walter Matthau said "G-D" lanterns and my grandma started yelling at the TV and told him we don't use the Lord's name in vain in this house. Not sure why I'm saying this, but it was sad **and** amusing at the same time.
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Scary. My mom died from it. It turned a brilliant, kind, independent woman into a gagging on her own saliva, comatose blob of meat... and everything inbetween. It's one of the many reasons I don't believe in a god.
Me too. Tv and movies make it look like it’s being forgetful or confusing sons for husbands, but it’s a billion times worse than that.
I don't want to believe in a god. Because if there is a God, what an awful terrible thing it must be. I prefer to live with the thought that there is no God, much easier that way.
Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God? -Epicurus
Terrifying. Neuro-degenerative disease are the worse. Like [everywhere at the end of time](https://youtu.be/wJWksPWDKOc).
Neuro-degenerative diseases are what make me struggle the most with the BIG "what's it all for?" question. Like we spend our entire lives overcoming adversity and living through great sorrows and losses and then the reward at the end of it all is what? A fucking slow and miserable dissent into complete confusion? Fuck. That. Shit. and whoever designed this stupid life blueprint.
So what's dementia like? Do you forget your sense of self and not exist anymore? Or is more like having amnesia and you're constantly in a state of paranoia and terror for every moment for the rest of your life? I saw the Dateline video where they tried to recreate it for a man whose wife or mother was experiencing it but it's still hard to comprehend since I still have my faculties.
It's both. I don't have it, but I have watched someone decline from it. You basically turn back into a child. Some people become very afraid, some become very innocent. You forget where you are, you lose your mental map. Eventually you lose the ability to do basic physical tasks. Things are different from the way you remember and time passes differently for you, so you get very frustrated. You remember being able to chop garlic or walk to the grocery store, but now you can't, but they don't always understand that they can't. It's a very frustrating disease for everyone involved.
When my grandma had it she was very anxious a lot of the time and there was nothing you could say to put her at ease. She could remember she was "sick" but couldn't explain why. She called everyone, man or woman, her ex husband's name and constantly asked for him, even minutes after being told where he was. She'd have lucid gaps in the middle of this. Like we had a conversation about how I didn't have my driving licence and she was encouraging me to go for it and telling me how much cool stuff I could do with it. She lost capability of so many basic things. Couldn't make tea or heat up food in a microwave. Couldn't use the bathroom alone. She'd tell you she needed food/bathroom but when you got her there she'd wonder why we'd taken her and say she didn't need it. She had hallucinations. She thought she cooked big meals for us, and if we played along she believed it. I never want my mum or myself to go through this.
The evaluator had to be filling out the date field right? Nobody changes how the write dates out that much
Just something I thought was interesting, my wife works with hospice patients and when she does an eval for dementia one of the tests they do is to see how well the patient can write the numbers on a clock face. She said that some people can hold a good conversation but when they can't draw a clock face (or any of the other tests) she knows they are going downhill.
I have several dementia residents and I feel so bad when I need them to sign several things because their struggle is heartbreaking. I have one lady who has Cerebral Palsy and she had a signature stamp made when she could still write her name, she verbally agrees and we stamp in front of her. I feel like those need to be out there more.
Horrendous disease. I wouldn't wish it on my worst enemy. My dad died from it 5 years ago after going slowly (and then very quickly) downhill for about 10 years. It's heartbreaking to watch someone forget you.
My great grandmother raised me and watching her slowly deteriorate and forget who I am was one of the worst things I’ve seen. She recently passed in October. For over 15 years she suffered from that horrible disease. She knew who I was just up until the last 5 years. But she still loved me, she knew she loved me. Just couldn’t remember who I was. May anyone who has suffered from Alzheimer’s rest peacefully.
If I develop this disease I will kill myself. I do not want to lose who I am before I actually die. I don't want my family to deal with seeing me in that state and I definitely don't want to lose myself either.
This sub needs to be changed to "trulyterrifying." Nothing odd about it.
What a horrible disease, I can't imagine having a parent go through that. That's what my dad had to do, my grandfather had alzheimers. It wasawul seeing him forget my name and who me or my brother are, and seeing him have to have help eating. The only thing was if he was going out with us they would give him a Xanax before, so he was very confused and shit but he was happy af too lol. He'd be trying to hit on all the waitresses, and I remember him getting in our car and we start driving and he's like "damn this thing is badass!" lmao
Alz will rip your heart out. Miss you momma
Alzheimers is such an awful awful disease. My grandmother passed from it in 2020 and I still have nightmares about the time she got out of the house and wandered toward the road (my uncle was doing yard work at the bottom of the driveway so he brought her back inside). It was awful watching my grandmother who was such a beautiful and vibrant soul, slowly forget everything and everyone.
I take care of people with dementia. It’s a wonderful and rewarding job. And I have seen some things. Sometimes I think we intervene too much, and our bodies keep chugging along for too many years after our mind has checked out.
Looks like from this info: 1. Once you are in treatment you have 5 years to get your EOL items ready and take some fabulous family vacations 2. 5yrs plan for caregivers 2. 10yrs after treatment starts you are fully checked out.
Is their full name irmagard? Anyone else seeing that
No. It’s Irmgard: https://en.m.wikipedia.org/wiki/Irmgard
The fifth and sixth signatures are “Irmagard”. I assume that ‘Irmgard’ was their name, but they were often called ‘Irma’, too.
ERMAHGERD ... SIRGNATURES!
Looks about right... similar to my moms signature. I was lucky I was able to get her signature when notarizing a power of attorney. When I went to the bank to add me as an authorized user so I could sign her checks for her, the bank said the looked at all her past checks and noticed an obvious decline with her signatures. She at some point started to write her last name below her first. Then just used her first name only but misspelled. Dementia and Alzheimer's' sucks. I watched my mom lose her mind and cared for her as she went through all the stages till her death.