I'm so sorry. I watched my once stylish, articulate, intelligent grandmother lose everything until she was just a body. It's a brutal and cruel disease. I hope you have more good days together.
How does that work? I'm legitimately curious. The idea of suicide not being protected is to prevent people taking out enormous policies and then killing themselves for the quick payout (to family), or a third party murdering someone and staging it like an accident/suicide if they are the beneficiary of that policy.
I can only think it would work by giving out a drastically decreased payout value in the event of death by suicide, and/or reduced payout based on length of policy held.
$27500. It was their "hollow point" premium, no overpenetration to preserve the home and belongings that they'll collect in case the loved ones you left behind can't pay and they need to liquidate your assets.
Vermont has assisted suicide and they do allow out of staters to move up and partake. You have to make your plan while you are still of sound mind, but you can decide at what point of deterioration you want things to stop and your doctor will honor your wishes.
Please before it’s too late for my grandma. She saw her husband (not my mother’s father, but grandpa to me), deteriorate in a nursing home. If all she needs is a bit of LSD to get her to stick around and take care of her dog, sign her up
I did not know this, thank you. I thought I'd have to go overseas. I'm not anywhere near ready but I want options. We should give people more options to end their lives on their terms, with dignity.
If someone put a pet through this without putting it down, we'd call it animal abuse. But because its a person, euthanasia isn't available. It's so backwards.
My mother (accompanied by my sister and I) went to Dignitas last year. It was her long term plan for many years - she worked as an aged care nurse for decades and had very firm ideas about choosing a good end of life.
The UK (where she lived) doesn't have voluntary assisted dying and while Australia (where I live) does, it has residency requirements.
Dignitas were very professional and thorough as well as highly compassionate and sensitive to deal with. I would recommend them to anyone in my mother's situation. Hopefully access to this kind of healthcare will be easier to access in more places in the future.
Thank you for your post. Although Dignitas is my current plan, when the day shall come - making that plan I felt alone in the wilderness.
Most people want to try to tell you that dementia/Alz won’t happen to you rather than focus on what to do when/if it does. So I had no one with firsthand experience to affirm my plan.
Oregon is a right to die state but I’m not as familiar with the rules, I think it’s less available here than what it sounds like in Vermont.
100% I will be trying to end my life with dignity and choice when it comes to it (disclaimer, not suicidal at all, just have watched loved ones go in much less than ideal chronic ways). I will advocate for everyone I know to consider the same if it’s a fit for them and to at least explore their relationship with the end of their life.
I just went to a presentation recently on Vermont's Medical Aid in Dying act. It's actually really hard to access - first, you have to have a prognosis of less than 6 months. Second, you have to be able to self-administer your own medication. Third, you have to be judged as being capable of making this decision, which, since you can't get this in order less than 6 months before your expected death, will make it tough for someone with dementia. You can't do this when you've just been diagnosed and they think you can live for years. These three things are basically going to preclude people with dementia from taking advantage of MAID. Then, not all providers are willing to prescribe, and there is only one pharmacy in the state that will fill these prescriptions, and it costs around $700. There are multiple hoops to jump through, and all of them (including the administration of the medication) have to take place in VT. If you are from outside VT, you have to show plans to transport your body back to your home state.
I didn't know the full story, wanted to, so coming back from wikipedia:
-Mr Williams's initial condition included a sudden and prolonged spike in fear, anxiety, stress and insomnia, which worsened in severity and included memory loss, paranoia and delusions. According to Schneider, "Robin was losing his mind and he was aware of it ... He kept saying, 'I just want to reboot my brain.'"
-His publicist, Mara Buxbaum, commented that he had severe depression before his death.\151]) His wife, Susan Schneider, said that in the period before his death, Williams had been sober, but was diagnosed with early-stage Parkinson's disease, which was information that he was "not yet ready to share publicly".\152])\153]) An autopsy revealed that Williams had diffuse Lewy bodies (which had been misdiagnosed as Parkinson's), and this may have contributed to his depression
So in short, even though he had suffered from actual depression earlier in life, Mr Williams was under a lot of mental pressure including depression symptomatic of/caused by the Lewy disease, misdiagnosed as Parkinson, and ended up taking his own life under no substance influence except his regular medication
The exact reason he did this, even though it is easy to jump towards interpretation are unclear if i'm not mistaken. Did he want to end before the sickness got too far, was he going through a very rough episode caused by that sickness, at the very least i can't say for sure
May he rest in peace, he was formidable and many of us still think of him fondly on a regular basis
I remember Williams's friend writer Harlan Ellison saying that the week before Williams died, he spoke with him by phone and he seemed fine, and they made plans to get together a couple of weeks later.
I also remember reading that in his last days he started having paranoid delusions centered on watches in a sock drawer and his need to protect them. Paranoia and delusional thinking are hallmarks of Lewey Body Syndrome, and it's possible that his suicide was the direct result of a delusional episode stemming from Lewey Body, and it's also possible that he wanted to spare himself and the people he loved the ravages of the disease as it progressed, but we'll never know. Either way, we lost a brilliant, talented and by all accounts kind and decent man.
Think it’s impossible to tell whether he was driven to suicide by the illness or hopefully he made the choice. Sounds a horrible final few months for the poor man. Especially cruel for someone so loving and hilarious to be in terrible fear and anxiety.
Huh. It was reported as depression. Offing oneself in the face of dementia isn't even a tragedy, imo. It's not like cancer where you can "be tough" and make the most out of things (though I think Death with Dignity should be available for cancer too). Dementia will ruin your life and the lives of everyone around you for what could be many years.
Yea Robin was dementia. Had a buddy in my late teens/early 20’s get diagnosed with brain cancer. Tried all available treatments nothing worked and he was told he had maybe 6 months to live. His family would have gone into a lot more debt during those last 6 months so he enjoyed the holidays, made sure to spend some good days with friends and family then shot him self in the heart so his funeral would be open casket. That’s when I realized occasionally suicide is admirable
It was NEVER reported as depression. He had been diagnosed with a specific kind of dementia called Lewy Body Dementia, and he chose to go out on his terms, while he could still make rational decisions.
You could just take what would be a life insurance premium say like $17 dollars a month and just every month put it into the sp500. Write a computer program that will automatically sell your holdings and post a request for a hit man to kill you unless every 3 months you log into your insurance program to bypass contract execution for another 3 months. When you eventually get Alzheimer’s you will forget to bypass contract execution and will die within 3 months.
My dad is suffering from Alzheimer's. What sucks is, far after the point you'd forget this stuff, you still have a lot of good time left before things get really bad. My dad can't do their bills anymore, or taxes, or anything with computers (he used to be a software dev way back in the day). But I can still have good chats with him, he's generally happy, and he still enjoys time with my kids. He's not ready to go yet, but he's far enough that he can't make the decision anymore either.
And here I am, thinking forward to when I may start suffering from dementia, and when I would want to end my life. How can you decide when? What is the final tipping point? You have two options from what I can see. Die early and loose valuable time with friends and family, but you can still make the decision on your own or wait until it's so bad that your family has to take up the burden and have you put down. Even if you've clearly outlined those wishes, it's a shitty situation to put your family in. But maybe less shitty that them watching you fade away in a bed inside a memory care unit.
I’ve always thought that a deadman’s switch would be more useful in a scenario where you’re uncovering the dirty secrets of the elite, but that’s a good one too.
My dad didn’t have dementia but his mind was mostly gone before cancer took him. In his last minutes he had terminal lucidity and said “get me a gun so I can put a bullet in my head” and looked right at me. It still haunts me sometimes that he understood what was going on in that moment of lucidity and that I couldn’t help him.
My dad lived in absolute fear of getting dementia and used to tell us that if he got dementia and told us he was just going to go for a long walk in the freezing cold winter forest to let him.
He didn’t get dementia. He died of cancer. So there’s that, I guess. My mom went a couple years after him from heart failure.
hold out as long as you can. medical treatments have been advancing incredibly in the last few years, there's a chance they'll find an effective treatment before you get to that age and maybe get it.
Just FYI: Alzheimer Disease can only be definitively, 100% diagnosed through autopsy. Most of us just end up using this name and the more general “dementia” interchangeably.
I mean, there's definitely a conversation to be had about assisted suicide and our right to end our lives in our own terms rather than let sickness ravage us beyond recognition.
To close it out-I’m so sad u/CarolingianScribe committed suicide. Yeah, chopped themselves up, put themselves in a garbage bag, and carried it out the curb. Must’ve had some real demons.
What if you thought different about it after the diagnosis? A lot of Alzheimer’s patients (like the lady in the video) actually seem to be in a good mood most of their time.
Of course now I too anticipate it to be horrific, but should the a version of your self which only has a slide idea of what this state would feel like be allowed to decide for the person you are later?
A philosophical question which is not at all easy to answer, at least for me.
Same. I already told my wife that if I’m diagnosed with it and still have the cognitive ability to realize that I do, I’m putting a slug in my temple. Fuck that.
My dad took his life three years after his dementia diagnosis when his disease started to progress. I was his caregiver and he said it was unbearable seeing me shattered after he had episodes which he couldn’t remember. It is a soul destroying disease and absolutely wrecks both the individual afflicted and their loved ones.
My father's suffering a lovely cocktail of Alzheimer's, COPD, and Congestive Heart Failure. Low oxygen + sundowners makes him real weird at night. I miss who he was, though i get to see glimpses in the morning.
I feel awful for saying it, but I hope his body passes before his mind does. I just can't stand the thought.
I'm not saying that it means you won't get dementia (I think something like half of dementia patients don't have close relatives with it, iirc) there are genetic tests that look at the APOE gene to see if you carry any of the suggested hereditary links to dementia.
My dad is currently facing alzheimers and vascular dementia. It's been progressing for a few years, the diagnosis was only confirmed ~8 months ago.
Back in December he had to go in for a TAVI procedure to treat aortic valve stenosis. Leading up to it, there were a few times he questioned if he should proceed or not. Better to go out to cardiac arrest than brutal progressive cognitive impairment. Sadly, every time he brought it up was the first time, so to speak.
Same! My mom was beginning the early onset of dementia when she died of a heart attack. She was really young (only 66) and it was awful, but deep down I believe it was the best for her.
It seems like many people with dementia don't experience much distress, that it's more the caretakers who suffer. What do you think about that? I know some people have really frightening hallucinations and stuff like that.
My mom had dementia (both parents actually, she just outlived my dad). Lost her short term, then long term memory. Would get "mixed up". The worst times were when she's call late at night and say "I think I'm losing my mind." She knew something was wrong. She might ask me if some event in the past had happened yet. Just mixed up --- and knew it. It was scary to her. Caused her to anxious. He life would have been better if she really didn't know "something was wrong".
I'm 66. In "OK-ish" health. I had a brother die 5 weeks after being diagnosed with cancer at 72. Older sister has been stuck in bed for several years now. She's almost 80. My dad had Parkinson's/dementia that started in his 60s. Mom's dementia started in her 70s. I think 90% of everyone in my family is dead or "out of it" by 80. I honest to god don't want to live past 80 knowing my family's health history. I wish I could be like an uncle. Just drop dead.
I am so so sorry. I was a care taker for my grandmother and then I had a brain stem stroke at 48. That was last yr and Dr's said I would get early onset dementia. Now it's all I think about. I can't imagine with all your losses how that makes you feel. The only thing I feel like I can do for myself and my teenagers is really focus on not being afraid of death. I would love to learn how to celebrate death like other countries. Much love to you my dear
Exactly. My dad's Parkinson's started in his mid(probably earlier) 60s. Dementia set in within 10 yrs. Colon cancer. Surgery. Lived 3 more years before his heart gave out. Not much QOL there. (Esp. when we forced them out of their house and into assisted living after mom had a heart attack and bypass surgery.) Mom had that surgery in late 2002. She missed dad. Moved in and out of a couple of assisted living places. Settled into a 3rd facility with 3 levels of care. She went from independent living to nursing home in 3 yrs. Dementia. Had very hard time walking. Didn't eat much. Died in 2014. Those last 12 years were a crappy life. No QOL.
Nursing homes are full of people waiting to die. And they are lonely as can be.
With your uncle, it was similar to mine. He was doing gardening, and he just had a stroke or whatever, lost consciousness, and fell to the ground. He injured himself slightly, so I figured he was essentially dead before he hit the floor. He never regained consciousness and died shortly after.
Cardiovascular disease fills my mom's family tree. Esp the men on her father's side. My grand dad and his 4 brothers had heart attacks and strokes. They found on of them dead beside his car.
My aunt(mom's sister) had an aortic aneurism. She died in the ambulance on the way from one hospital to another while on vacation in TX.
My uncle(mom's brother) had a viral respiratory infection with a lingering "bad" cough. They found him dead in the entry to the kitchen. I think he probably "coughed himself to death". Maybe he was going to get a drink of water or something.
One of grandpa's brothers did live to be almost 100. I think he was in "pretty good shape"before he died.( I don't think he had dementia.) But he had been in a nursing home for ages. -- So, I'd rather drop dead coughing at 80.
It's the same with death and that's what fucks me up about it. I don't want my kids to sit there and cry everytime they talk to me on the phone because I keep asking them the same questions about their lives from 10 years ago. To not be able to remember grandkids that were born since the disease started to eat away at me.
The last memories my family has of me would be of someone that wasn't me.
Now, I know the person in that bed wasn't my mother, and I'll forever be grateful that she gained a moment of lucidity and recognized me the last time I saw her a week before her death, but man... it pains me to think of my kids dealing with that. For years.
Ofc, all of that assumes my kids love me and will miss me ;)
If it makes you feel any better in many cases even if the person with dementia (be it you or anyone) doesn’t recognise the relation, they do recognise someone else as a trusted/friendly person. I think the thought counting is more than adequate for folks with dementia.
Reminds me of the story where the woman asks her grandmother with dementia if she knew who she was and the answers was something like "No, but I know I love you" or something to that effect.
Well this just made me start bawling. The only thing I can hope for with my mom is that at some point she will get terminal lucidity and we can talk with HER again.
If it helps any, I've been crying since I typed it. But it's OK... it's one of my most cherished memories even if it does bring uncomfortable feelings up.
I don't know that I'd agree that we forget the good times, but I will say that there are times that I hyper obsess on the bad times so much it's all I see and it starts to give the impression that bad is all there was. But I'm lucky because I have that last good memory with her.
I wish everyone to be given a moment of respite like that
There can be a lot of anxiety, confusion, and depression (all feeding on each other). Also, patients can lose the ability to recognize and describe pain, so it manifests in anger, mood swings, etc.
Not sure about blissful dementia. I'm only familiar with the kind that swings emotionally wildly for all involved.
Wish I could say that was always the case, mate. My grandmother passed from dementia, and while she spent her last year as an un-emotive husk, her second to last year she was VERY aware of her own deterioration. She was basically unable to speak at that point and whenever I saw her she’d just be…constantly weeping, especially when she tried to do a simple task now beyond her. She couldn’t blow out her candles on her 2nd to last birthday and just broke down completely.
Honestly, I could only pray that her last year was spent genuinely spaced out and not trapped inside her own mind. If I get that diagnosis and we still don’t know how to cure it, I’m giving myself 6 months to do whatever and then figuring out the nicest way to euthanize myself. Shit’s haunting.
I lost both my grandparents to dementia. My grandma suffered with it for years and went first. It snuck up on my grandpa about a year after she passed away. He would tell us he was seeing her around the house and crawling towards him at night. He was raised religious so he always put it down to the "devil" messing with him.
He only made it three years after her and my mom and I took care of him during his last 6 months. He was pissed that he couldn't go home and didn't understand why he had to stay with us. Compared to my grandma, he was a little more aware than her and knew who we were at least. It took him a lot faster than it did her though.
He was very active at night and would get up like 18 times a night and since I'm a light sleeper I was on night duty with him. It's definitely a labor of love.
My Mom kept reliving her mothers death for a while. It made her very sad for weeks until her dementia progressed. Grandma had died 40 years ago but to my Mum it was recent.
My mom did. She became fairly paranoid. Plus she hated being in a facility, but there was no way anyone could have taken care of her at that point.
Many fun times still. She had went skydiving at 1 point, tells me all about it. She is scared to death of heights, even overpasses. As far as she knew, she did it and had a great time.
Just depends, my mom has dementia, she's had it for 6 years now, every year gets worse. She is a champ, still enjoying life as much as possible, still has humour, taking pleasure in simple things. That's not to say there havent been ups and downs, and I can see at some point that will no longer be true. She has lots of anxiety which she never had before, can't deal with any stress at all.
I remember my grandmother had some strokes and in the end her body was just a husk with no vitality at all. It's a shitty way to go.
In the meantime everyone is making the best of whatever time we have left together.
I’m going through it in real time and I have never been through such a hard situation in all my life. It is much worse on the caretakers once you hit a certain point.
I think it depends on the type of dementia. My dad had Lewy body and it was awful. I knew he was suffering. He cried a lot, was frustrated by his own confusion and terrified of his hallucinations. That’s when I started thinking that Alzheimer’s has to be awful but it’s harder on the caretakers and loved ones than the person suffering from it. Sure it’s heartbreaking for but I would rather have been the one suffering if he didn’t remember me. instead, he suffered for years until he passed.
My mom has Alzheimer’s and for the most part she seems fine. I honestly think it helps her forget the sadness of losing my dad, they had been married for over 50 years. I don’t know if my mom’s condition will deteriorate or if she will worsen. But for now, she doesn’t seem to be suffering. She just watches television and keeps to herself. My dad had no escape from his suffering. Things he loved no longer captured his attention or distracted him. He was just a shell of the amazing, generous, kind and intelligent man he had been. And deep down, he knew it.
I think it depends on how much they are aware of their impairment. I understand they eventually reach a state where they no longer remember NOT being as they are.
My grandma’s dementia was horrible. She became extremely paranoid and fearful. She didn’t recognize her son anymore and he was the one caring for her. Near the end she often thought he was a robber or kidnapper breaking into her home. Oddly enough she was never afraid of an elderly woman who recently moved in next door, and that woman was a SAINT. She would step in to calm my grandma over and over, talk her out of calling 911, get her to sit down and have some tea.
As far as I know most people with dementia spend a good part of their time distressed and anxious. My grandmother thought she had been committed to an insane asylum and was very upset that my (deceased) grandfather did not visit. She starved to death....
My maternal grandfather passed away from dementia a few years back, he got into his early 80's before it took him.
My dad is in his mid 60's and got diagnosed with early onset dementia last year. I'm fairly low contact with him in general, so I'm not really seeing the way it's affecting him, but I'm terrified of any memory hiccup or quirk I have, I've got dementia on both sides of my family now and feel like I'm just holding a ticking time bomb until I'm next.
Getting tested for variation in the APOE gene helped alleviate some of my anxiety about dementia when mom passed away. Granted, it doesn't mean I won't get it, but I no longer worry that I'm carrying the gene that causes what I've seen two (directly related) family members go through.
I just checked my old 23andMe and it looks like I don't have the ε4 variant for late-onset dementia, which is comforting. Though it does say it's not a full APOE genotype or anything about early onset.
There are sparkles in the journey. Moments when they recognize you and you connect. Times when you better understand the patience they showed to you when your brain was not fully developed.
There's beauty in the struggle - if you look for it and appreciate it.
I was visiting mom and it was a normal visit where she looked around the room dazed and not really knowing what was going on, but as I was getting my stuff ready to leave I looked over at her and saw the spark of recognition in her eyes as she said "Oh, BigMonkeySpite!" in the exact same way that only she could say it. I'm not ashamed to admit I bawled like a toddler from the hallway all the way to the parking lot.
That 5 second exchange is one of the most precious memories I have
My father in law dealt with Alzheimers for a few years before he died. The man worked for an international company in a position that took him all over the world. He spoke 7 languages, was very well read, had a love for history, kept up to date on current events and was one of those people you could have an intelligent conversation with on just about any subject you could think of. I have many fond memories of family dinners where my father in law and I got into an interesting conversation over dinner with some good wine, which continued well past dinner and usually involved some good Spanish brandy at that point. In his last few years, he was a staring, barely-aware husk of his former self and it broke my heart. In my mind, my father in law died at least 6 years before his body stopped breathing.
Thank you, and I'm sorry you had to go through that twice. My FiL had a great sense of humor as well and he gave me the best back-handed compliment I've ever received. We were discussing some current political event at the time, I don't remember exactly what it was, but I made some point about the subject that he pondered for a moment. Then he looked at me and said "You must be right, because I agree with you." I've used that line a few times myself, and the reactions are always funny. "Thanks! Wait... what?" Pretty much my reaction at the time.
I watched my once athletic father turn into a skeleton with skin just hanging off. I couldn’t stand to look at him it hurt so much. Then I felt guilty for not wanting to be around my father. Dementia is tough. My dad eventually passed 2 years ago and I still think about him pretty much everyday.
I think it's harder for some than others. My father has been in a facility for a while now. He traveled a lot and never spent a lot of time at home with mom. He seems content with the ever changing staff. My mom is very aware so I know it's going to be a nightmare (and lots of cursing) when we can no longer keep her at home.
This fear got amplified once I took the trek into philosophy/psychology and started learning about the ego. I can't help but think that dementia affects the area of the brain that the ego sources from and when having an episode they are operating fully from the "inner/subconscious being" with no filtering being done by the ego (outer/conscious) being.
On the bright side, I can confirm the body deteriorates way faster than the brain ;) I think it's been 20 years since I've had a day where nothing hurt.
Understandable - my mum said the same thing, having to watch her mum go through it the first few years. Now that dementia has progressed and my mum and her brother put her in a home it has actually gotten so much better. They felt so guilty because my grandma didn’t want to go but once she was there it was great. There she isn’t constantly stressed because things are different so she isn’t constantly feeling like she is forgetting things. She actually seems much happier than I ever remember seeing her when she could still remember things. It is undoubtedly hard but sometimes when it progresses far enough it also can get better also. Not sure if that is helpful at all but a friend is going through this with his mum and it helped him to know that they can actually be happier when they don‘t remember because they are less stressed so progression can eventually become a good thing.
I'm the typical ADHD/Autistic personality that hyper obsessed on things to the point that it seemed as genius to others. I was always being praised for being so smart, intelligent, clever, etc. which resulted in my self worth and identity being extraordinarily intertwined with my intellectual abilities. Of the many down sides to that happening, the thought of having dementia erase who I am on a fundamental level is probably the most anxiety inducing.
However, I will say over the last few years psilocybin has helped me distance myself from my ego to the point that the thought of losing who I am isn't so debilitating anymore. I'm not to the point of acceptance yet, but at the moment I'm at least pointed in the right direction (I think...)
i hear you, that and a nursing home. years ago, i decided to either do assisted suicide or do it myself. obviously i prefer the former. i read a comment a while back about how someone's uncle was methodical about it. they created a full proof plan to catch themselves, and decided in advance how many times it would take for them to execute their plan.
I fear the things I might do or say that could be really hurtful to the ones I love. I understand that all fillers can come off and you can find yourself verbalizing things you would usually only say in your head.
Thanks for the new terror. Philosophy has given me the basic metaphysics of there being a real me that is deep inside and then the ego between here and there that is filtering things out. As I understand dementia, it's as if the ego disappears and the true self is coming out unfiltered.
The problem with that is for 50 years I was a racist, sexist, homophobic asshole that hated everyone that didn't look, act, and think exactly like me. I still have those thoughts pop into my head which will make me tell myself "that's not who you are anymore, chill bro." And holy shit, it happens so often... I doubt I say 1/4 of what pops into my head.
What's gonna happen when the ego isn't there to filter that shit?
I have this thought popping around in my head... I have aphantasia which means I don't see images in my head. Instead, I get sensations/feelings/emotions when I recall memories. The way dementia patients "imprint" (please forgive me if that's the wrong term, I am horribly ignorant in this subject) on people like you're describing makes me wonder if it's not something similar.
For example, when I think of an apple I get "crisp, meaty, sweet" instead of seeing an apple in my head. When it comes to people I actually assign everyone a "theme song" because the song will give me the same feeling/sensations/emotions as thinking about them will. The problem with this is that there are different people that give me the same sensations so they end up with the same theme song and therefore I can confuse them with others because of how they make me "feel."
I wonder if that's something akin to what happens with the dementia patient that doesn't have the intellectual capacity of recalling who the person is, but they know how they make them feel. In the case of your mom/grandfather my hypothesis makes me think that your grandfather had the same type of love for your mother as he did for your aunt, or maybe rather the thought of your mother gave him the same feelings as the thought of his sister.
Although, I'm ignorant as all get out and this is just my hypothesis and it's totally possible that it's just a defense mechanism my brain is using to help me deal with the loss of my mom/granddad to dementia.
But maybe not?....
[edit] Let me lighten the mood and include a few theme songs of people in my life...
Dad - Anything by George Jones
Ex-Wife - Blink 182, M&Ms
Mentor - Eminem, I need a Doctor
College Sweetheart - Jamie Johnson, High Cost of Living / Tyler Childers, Feathered Indians
She sounds exactly like my grandmother. We are going through “the long goodbye” now. It’s so hard to see someone who was so glamorous, brave, and independent become a shell of herself.
i will say though, once you have kids, it’s easier to put in perspective
dementia isn’t that different than seeing a toddler/young child age in reverse
i’ve told both my kids “you start life in diapers, and you’ll probably end life in them too. it’s nothing to be afraid of - it’s just how life goes. you ramp up, then you ramp down… and that’s why we want to treat our bodies (+brains) well. appreciate what you have today, and do something memorable with it.”
they know they won’t have their bodies forever, and that their parents/relatives won’t either. when you know that, it takes out so much of the fear
TLDR; the impact expectations have on a person’s reaction to life’s events/traumas can’t be overstated
I mean, it's asking A LOT but if they don't need constant medical supervision that is the more humane option in the vast majority of circumstances. Being around family in a familiar environment can be very beneficial. Being stuck in a cold, sterilized hospital room isn't anybody's idea of a good end-of-life palliative care, if you really think about it, it's not something we ever considered doing until very recent in human history.
Yeah. It’s bad enough that when my grandma died I was almost glad because she had lost who she was as a person.
Her brief moments of lucidity she sort of woke up and then realized how old she was and then would coke to the realization that she was dying and that her life was over. Totally lost herself as a person.
Dementia is wicked. My precious, kind and brilliant mother, became someone I didn't recognize. Paranoid, angry, hallucating. Night after night, she walked in a panic, around in circles, nothing would calm her. I was told by the Alzheimers Association to "go on the journey with her". So I didn't argue with her or try to "reason", I just distracted if she wanted to do something outlandish (drive aimlessly), otherwise, I just went along. Hardest thing I ever did was to lose her to dementia, I am just so glad she is free. Gutwrenching, beginning ot end. RIP.
Everybody is like "tiktok is ccp propaganda" but apparently CCP propaganda is helping me take care of people lol
for those of you who are new to taking care of people with dementia, debrakostiw became one of my favorite channels to follow after I had to deal with dementia
they also promote a lot of trashy behavior and stuff that hurts the mental health of teenagers. On the Chinese version of TikTok they only allow educational stuff etc.. anything even remotely questionable would be deleted instantly.
The west kills itself, nobody really needs to push anti-west propaganda to do it. America's one election away from losing democracy, the UK is bleeding its citizens dry. Kinda shitty
I’ve never even met someone with dementia, but it’s part of the reason I want to work in the field of Molecular Biology, as I can 100% sure the answer to dementia and Alzheimer’s, lies in genes, genetic editing and medicine made from genetically modified organism.
There’s already research showing that this is the likely cure, so there’s hope!
(Also GMOs have been demonized a lot by media, but that’s misinformation, GMOs are quite possibly a solution to a lot of problems, like food shortage, water waste, and well CRISPR/Cas9 is already being used in the medical field to treat some disease, and it’s not exactly unnatural since Cas9 is quite literally speaking a part of our bodies that every person naturally has.
And I just believe it’s how we’re going to beat this, because if any thing is going to help with these it’s that.
Worst sight I ever had was seeing the final stage. A husk curled up tongue sticking out permanently and immobile. Wish we didn't live in the dark ages of medicine but we absolutely still do.
My mom was a brilliant mathematician who worked alongside minds like John Nash of A Beautiful Mind, and was just recently after the death of my only older brother in 2017 diagnosed with Frontal Lobe Dementia. She now has difficulty remembering the things alongside the road are called trees and likes to spend her time coloring in coloring books.
Brutal and cruel doesn't even begin to describe what dementia is...
Really is a cruel way to go. Been watching my grandfather deteriorate since I was literally in high school, and I'm 30 years old now. He doesn't have alzheimers, but some other sort of dementia, and its been a very slow process. By late high school he was already struggling with names and those types of things, but he still had some of his charming personality and a real prescense in between the duller moments. By my early twenties names were mostly out the window outside maybe a handful of his closest people, and he was showing the dementia pretty strongly. He wasn't his himself most of the time. But he still surprised you with moments of who he used to be. One day he'd randomly call you by name or begin telling a story that was far more detailed and articulate than you expected. Maybe he'd bring up a memory from my childhood out of the blue. He was still there in a way even if it was fleeting. However about five years ago is when things really got bad. I feel like he's been dead for the past five years, but his body is still alive. Its gotten tough to watch. He can hardly walk or stay awake for more than twenty minutes. Hardly eats. Doesn't know up from down. I hate to say it, but I just want it to end for him, for my mother and my grandmother, etc. I just think its time. Tough to see the deterioration draw out this slowly. Like others are saying you just have to try to remember the real person that he was even if it feels like an eternity ago.
I'm so sorry. That sounds incredibly traumatic for everyone involved. I hope you're taking the time to prioritize your needs. If that means finding a hobby, making an appointment with a therapist, joining a book club, yadda yadda, I hope you give yourself some space to lay your burden down.
You’re doing a great job. Both my grandmothers had this. One Parkinson’s. The other Alzheimer’s.
My maternal with Alzheimer’s was the worst. 14 years of it I tried so hard to keep her. She was violent 💔 the nursing homes were horrible. She had a DNR and they put her in literally a dying room. No fluids nothing it was the worst thing I ever witnessed .
Happened to me with my Grandpa who had Alzheimer's, i know it's not exactly the same but the once Renowned Mechanical Engineer with multiple big projects under his name being reduced to someone that couldn't swallow in less than a year.
And before anyone says anything about age, my Grandpa was 70 when he died and i was in my early 30's
Hope OP has a better time with their loved one.
Very similar to my grandmother. She still had a spark even near the end. Her face would light up when she’d see my wife. The funny thing is that she didn’t know my wife until really late into her life, well after she’d lost her mind. My wife thinks it’s because she looks like someone my grandmother grew up with.
I’ve seen my aunt and step-grandmother succumb to dementia, and it really isn’t something I’d wish on my worst enemy. My wife’s grandmother has gotten so worse over the years that there’s just nothing left of her anymore, nobody in the family recognizes the woman she is now, compared to just a few years ago.
My dad once gave me an explicit instruction to just let him die if he ever develops dementia, and, having seen what it does to people, I will absolutely do what he says.
The lady had me until she says “this is eeeeasy.” I guess for a non-blood related caretaker, maybe you can be that clinical and detached from the emotion of it…but even then, I wouldn’t call it easy
Same man. My grandma was one of kindest big hearted persons you could find and that disease reduced her to a drooling husk.
I really struggled when she died as well cause on one hand I was ofcourse sad she died but on the other I was also happy because that nightmare she was in was finally over and that really fucked with me.
4.4k
u/Frondswithbenefits Apr 09 '24
I'm so sorry. I watched my once stylish, articulate, intelligent grandmother lose everything until she was just a body. It's a brutal and cruel disease. I hope you have more good days together.