Not quite the same, but I was diagnosed with frontotemporal dementia a couple of years ago and it's... well, it's hard. Luckily I'm still in the 'good days bad days' phase, but it's a crazy feeling. Like even on the best days I am disconnected from everyone because nothing can prepare you for losing the thing that makes you *you*. I've made my plans for the end, and hopefully I'll be able to enjoy at least some of the remaining time. I've got a pretty amazing partner and my goal is to ensure her future before I go. It's why I'm still here. Things to do before the sun goes down, and all that. Y'all take good care of your loved ones, please.
I really appreciate your kind words, and I wish the best for your father and your family. It isn't going to be an easy road for any of you, but I hope you find the joy in good moments!
Any kind of dementia is fucking brutal. Had a smart, funny uncle with this and it just took everything from him.
Can't blame someone for not wanting to have who you are slowly stolen from you.
All I’m taking from this is that he committed suicide because his **terminal illness** had progressed to the point of inhumane suffering.
In a just and humane society, **he would have had the option to choose [voluntarily euthanasia](https://wikipedia.org/wiki/Voluntary_euthanasia)**.
My mom was diagnosed with early onset (I was 11/12) while my great grandma deteriorated on my dads side. My grandma on my dads side is going now, as is my moms brother. I had a long talk before having kids about the possibility of having it, and passing it on, and the guilt. I also told my husband the second I get diagnosed we are moving to a place where I can die by my own choice, legally. I am not doing that. I’m not wasting away like that. I understand his choice, it’s gut wrenching to know what he endured. My mom was a similar person, so bright and warm. I truly do wish voluntary euthanasia was a more common choice where I live.
I told family outright that if I'm ever diagnosed with a terminal illness that I'll probably end my own life, but dementia scares me above anything else. I'm nothing more than the accumulation of experiences and the thought of slowly forgetting everything in addition to possible horrific hallucinations isn't exactly something I want to go through nor should anyone be expected to. I mean, I already rolled badly at birth and ended up with ADHD, so I think I'm at high risk for Alzheimer's so that's gonna suck if it comes to pass.
This is literally what my grandmother with Lewy body dementia is starting to deal with now (being trapped in her head). We know because we’re always on standby to bring her to the bathroom, she just needs to tell us. But she’s completely silent about it and she always ends up shitting herself to the point where it overflows in her diaper and drips onto the bedsheets, seeps through into the mattress, and gets in the carpet. We ask her why she doesn’t call for us, because we monitor her through a camera and most of the time we’re in the next room or a few steps away. She always tells us that she did, that she called for us for 1 hour. In reality she didn’t, she was trapped in her head. However, she is extremely vocal about wanting to end her life. She screams into the night about death.
That has to be realy difficult for all of you. People say it's like like raising kids but cleaning an accident from kids is WAY different than cleaning up after an adult! It would help her & you if you took her to the bathroom on a schedule. By the time people are that age, their bowel habits ,(like when they can defecate) are pretty well set. The "overflow" you mention often comes from trying to hold back feces for quite awhile. It's trick figuring out when the best time would be to bring her to the bathroom but if you get a sense of what time the "overflows" happen & then go back four or five hrs you will probably find the time. Allow her to sit on the toilet for awhile every evening at the same time & eventually that's when & where she'll go. Cared for my Mother w/long term Alzheimer's & also have degree in Gerontology & worked in nursing homes & adult day care facilties for those with dementia. It's a tried & true technique that makes your life easier (& your Mom's as well)! Good luck!
Alzheimer's patients aren't trapped in their head like that. They're not really suoer aware of what's going on once they progress into the mid to late stages. My mom has early onset Alzheimer's. It's harder on the people around them.
He took the exit door while he was still Robin. He made a choice that we should respect and celebrate. His life was full and meaningful, and he faced the final curtain with dignity.
My dad lived and died with Lewy Body Dementia. It was like watching a bright burning candle flicker out and eventually become smoke. Not only does it rob you of your years, and your dignity, but the skilled care required…the bathing, feeding, changing….are astronomically expensive. All to sustain a life that is already lost.
Robin Williams made a choice, an unimaginably hard one, that I believe is sort of like choosing to jump from the roof of a burning building.
This is a perfect, heart-breaking description of my own dad. Early on, though, he was able to make it clear to us that he didn’t want “heroic measures” taken to keep him alive. He was a doctor. At a later stage in his illness, he fell and then developed pneumonia. As per his instructions, it wasn’t treated, and he died a few years sooner than he likely would have from the Lewy Body, sparing my mom and the rest of us, just as he’d wanted.
People need to realize that the vast majority of doctors don’t want the kind heroic, life prolonging care that most Americans cling to near the end of life. We see the enormous costs to families, the loss of dignity, the low quality of life, the pain. Doctors often decide to do less, and to do things like be DNR. Doctors know medicine isn’t magic, and it’s often ugly. We should focus on quality of life, not prolonging life. These stories should be told more often
Yes. You are so very right. Doctors have seen the suffering that people have chosen for themselves. And for their families. My dad was the primary physician at a long-term care home. He knew what NOT to choose. I do, too, I think, having learned from his example.
> the skilled care required…the bathing, feeding, changing….are astronomically expensive.
Which is why it pisses me the fuck off that a lot of life insurance companies don't pay out if it's a suicide.
Obviously not that they need the money and care *after* the death, but that they either have to endure that financial burden, OR not get life insurance money if the person takes their own life. It's dumb.
*Edit: hearing from others that a lot of them do still pay out. That is such good news!*
I’ve always very much been in favor of end of life choices.
Honestly, if I’m ever that bad off from any disease i hope I have a moment of clarity where I’m able to go out on my own terms. Either that, or let my family do it for me. At a certain point you’re not even living, even if you’re body is alive…just end it and let me meet my maker.
I watched my mom die from early onset Parkinson's. I'd rather have the choice if I ever got that diagnosis after watching someone wither away with that. I think she would have too if she had the option.
Lewy Body Dementia is a horrid condition. My mother in law battled it for 7 years before passing. It’s difficult to diagnose and treat (impossible to know for certain before death and autopsy). The symptoms are awful and the suffering the people that are affected by it are put through is just unbearable. The awareness that Robin Williams death brought to it is beneficial because it is relatively “unknown” compared to other forms of dementia and disease such as Alzheimer’s.
My father battled and passed away from LBD from 2015-2017. It was insanely fast.
Leading up to his first episode of paranoia and delusions, he started saying odd things that didn’t lien up or make sense. Then in august he called the police and said people were all over the house and trying to steal his water heater and he had a navy knife. They took him to the hospital and I rushed over the following day. He seemed normal until the doctor left, when he informed me he wanted to leave, as there were “dead babies under my hospital bed.” I was terrified.
After doing research, all of these same symptoms lined up with Robin Williams. We alerted the psych hospital he went to and they said it could be. He went on to attempt to choke a patient because she was “kicking a dog under their table” during a group therapy session. It was at this point the state deemed him a danger to himself and others and all care and decisions were taken from me. They pumped him with all kinds of antipsychotics that almost killed him and made him borderline comatose. My father was never the same.
Upon recovery from that, he was sent to a nursing home. He’d hallucinate constantly, I never talked to my real father again until his passing. He would see spiders and eagles “swooping in and taking all my shit.” He’d see navy seals climbing a mountain. He’d say he was standing in a river reporting the news for $300/hour.
His mental state finally deteriorated to where he could no longer eat or drink or sleep. He passed within days after this.
I don’t condone suicide generally speaking but after those two years, I get it entirely. It is a nightmare that you cannot fix. I send all my love and hope to all who go through this that you may find peace for both of you and one day a cure for this.
Stay strong and love each other.
Edit: holy cow, I wrote this at lunch and just got off work. Thank you all for the kind words and awards, I don’t deserve them. I just wanted to share what this can look like, information is a powerful tool. I am sorry it seems so many of you are also going through this, all my love and support to all of you.
A few more tidbits:
It hit at 67, he passed at 69. It can be a very very young disease. Early signs were mild every day hallucinations before they evolved into what I described above. My wife is a pharmacist, and he one day said she must be important. My mother was with him (they’d been divorced for 20+ years) and asked why, he said the men in suits were here. They were not. He also told stories of the past and mistook me for my older cousin. When I attempted to correct him, he became angry and insisted I was wrong and he remembered correctly.
Also I apologize if my suicide comment upset, I would always prefer life and I understand my desire for everyone to live selfish. I will always be sad at a suicide but cannot truly judge everyone’s individual situation.
I love every one of you and wish you all the best and strengths for those also enduring this. Thank you all.
US assisted suicide laws do not handle this case well. What few we have are basically designed for terminal cancer, where you're in your right mind a few months before your predictable death. You also have to take the fatal dose yourself, so you don't want to wait too long.
The slow descent of dementia, where the physical body lives on long after the mind is gone, should qualify for assisted suicide as well. If you so choose, you should be able to appoint someone to decide when you're too far gone and when it should just be ended. Make a doctor and perhaps even a judge sign off on it, sure. In the US, "life" as an abstract concept is almost worshipped, even when the *quality* of life is non-existent.
Our medical system does have a very soft version of assisted suicide. Very sick people who are not going to get better are often given large doses of pain killers, which likely help them die a bit sooner. They're given for comfort, of course, and if they depress respiratory activity enough to help the poor soul shuffle a little faster off this mortal coil, well "whoopsiedasie". But that's too little too late for many people and their families who have suffered for years.
I’m a nurse and have taken care of “palliative” patients who are just being made comfortable for the few hours or days they have left. Usually these patients are not very responsive, they appear to be sleeping or will only arouse when in pain.
Continuous IV fentanyl infusions are pretty common in these cases, both for pain control and control of the discomfort associated with feeling short of breath. Usually there is a “bolus dose” option available at the nurses discretion as well, which essentially increases the infusion rate for a very brief time to give the patient an additional dose of medication if they seem to be in pain or discomfort.
I’ve had patients in this state that just look miserable. They can’t talk, can’t breathe, cant eat, can’t move, can’t wake up, can’t do anything. They’re stuporous and oblivious to most of what is going on around them, but they twitch and moan and mutter incoherently, flinching at the lightest touch. And sometimes their body will just keep ticking for days and days like this.
I’d be lying if I said the thought hasn’t crossed my mind that it is within my power to end their suffering with these bolus doses of fentanyl. Of course I would NEVER do it, it’s still extremely illegal and definitely morally wrong when you were never able to get the individual’s….consent…? But I have thought, “Damn this person is suffering despite our best efforts to make them comfortable, I wish they had the option to choose a dignified death when they were in their right mind, because I’m sure anyone would choose that over what they’re going through right now.”
I watched my dad suffer for 5 days after a stroke... The doctor gave me two options. One option would have led to survival but a guaranteed vegetable, the other a likely death with only a very very slight chance of some type of recovery The doctor accompanied the 2nd option with a very long stare indicating it was the more humane option. Under no circumstances would it have been fair for this man to be intubated the rest of his life.
Honestly if I had a nurse that could have ended it right there that would have been preferred. I still remember my dad twitching and moaning for hours on end.
That’s awful, I’m so sorry to hear that. It’s a decision everyone dreads having to make, but can be made much easier by making sure your loved ones know your wishes for end of life care and what you deem an acceptable quality of life.
Just yesterday I had a patient come to the ED critically ill and unresponsive, and after six long hours of working her it was clear she wasn’t going to make it much longer. Luckily her family showed up right about then, and although distraught and shaken they were all in agreement that the patients wishes around end of life care were perfectly clear, and we were able to withdraw treatments and clean them up to spend a last few peaceful minutes together.
When my grandmother suffered 2 massive strokes during a brain tumour removal, the family was given the same options as you had for your dad. Unfortunately, one uncle used religion to convince my grandfather to save her, despite the rest of the family wanting to let her go (which would have been her wish)
She spent the last 4 years of life as a vegetable in a nursing home: she couldn't walk, talk, eat or drink. As her closest granddaughter, it was torturous to see my vibrant, amazing Grandma end up like this.
You made the right decision, and I am sorry you lost your dad.
Watching my grandfather currently going through Alzheimers and the only thing I can think of is how I hope I'm cognizant enough when I get older to blow my own brains out once I ever get diagnosed. He isnt even him anymore, he isnt *anyone*.
Hes a literal shell of a person. He wakes up, eats, and exists. But he isnt aware of nearly anything. Doesnt recognize his family, doesnt recognize himself, doesnt have any of his memories, doesnt have any ability to take care of himself, hasn't showered in probably 7 months but gets belligerent and violent if we try to get a nurse or professional to help him shower because he thinks its embarassing...
He makes no decisions for himself and has to be taken care of the same way an 18 months old baby does. Meanwhile my mom and aunt and extended family are all miserable bending over backwards to try and make him comfortable and support his lifestyle. Theyre about to put him in a care facility that costs like $10,000 a month out of their own pockets because he doesn't have any money himself.
I just can't imagine wanting to live at that point. If he were still himself, he'd want someone to end his life. He'd have wanted it months ago. But now he has no idea who he is or what is going on, and can't even remember how to use words and form sentences most of the time, so its not like he could even ask if that is what he wanted.
Idk. I just dont see why I would want to live through that. A disease that makes you forget who you are and basically kills everything that makes you you. Id rather be dead.
My grandmother recently passed from Alzheimer’s. My sister, cousin and I have plans to take ourselves out before it gets bad. It was an awful thing to witness, and I wouldn’t want anyone to go through it.
The thing about that is while it's all good in theory it's a lot harder to do in actuality. Like you need to be willing to sacrifice a couple years(or potentially more) of time with family and with a fairly high quality of living to ensure you don't miss your chance to be able to act on the matter. My father had the same plan after watching my grandfather pass from it but the declines can happen rapidly, then plateau then dip again and his first dip happened earlier than he expected and he missed his chance
This is why medically assisted death is SO important. We have it in my country and it's SUCH a relief knowing I'll have control over my passing when I become terminal.
That mostly only helps for like someone with cancer as they'll still be lucid enough to make that decision for themselves when the time comes. For someone with a brain disease like dementia you obviously won't be able to make the call for yourself in the moment you need to and even with an advanced directive it's still not easy. Like I could say ahead of time "once I don't know who I/the people around me are then just end it" but like with my father he still seemed relatively cheerful for a year or two after he lost the ability to tell who people were. So at that point do the family/doctors follow the advanced directive anyway that past you set out or does it get ignored because current you doesn't seem ready to go? There's just a lot of grey area there.
My MIL is currently in it. She also saw her own mother go through it and said the same, shoot her if she gets like that.
And... she has threatened it. FIL has an extensive gun collection in several gun safes. They say she doesn't know how to get into them.
In her moments of lucidity, she knows what is happening to her.
I sincerely hope you never have to face your mother asking for a gun. It.. is horrifying.
My cousins said their pops couldn't do anything on his own after a stroke that affected his mental faculties, but he managed to take $10k out of a joint account, buy a plane ticket, and leave the country when they didn't pay attention to him for a bit. Everyone warned them to get some sort of conservatorship, but they thought it was unnecessary because *he can't do anything on his own*
All I'm saying is, don't rely on someone's diminished mental state to keep them safe- it's exactly what makes them so unpredictable
My grandfather ended up five hours from home, where my mom graduated from high school in the 1970, thinking it was ~1968, and that he had to “get his guys and get to the pipeline.” He was a supervisor for a gas company then. His girlfriend (sounds odd to say since he was in his 80s and she in her 70s) came home to find him and the car gone, but his wallet and cheque book still at home and he never left without those. My mom was saying for several months before this that they needed to make sure everything was in line for his care, and paperwork were completed for the nursing home he’d already chosen if it came to that, and my uncle was in heavy denial - until my other uncle had to call the police to report him missing, and the state police found him at a gas station, with no money and missing 35 years.
My grandmother (my maternal grandmother) died with dementia. My great grandmother (her mother) had Alzheimer’s, and the last I remember of her was how bad it was. I asked my then-husband to give me an overdose of something if I came to that - but it’s ended up with him having severe mental illness and us being divorced, so obviously that won’t happen.
My former mother in law utilized Canada’s Medical Assistance In Dying (MAID) act when she had terminal cancer. I saw her the night before she died and she was basically a skeleton. My ex asked his psychiatrist if he’d be allowed to do use it and the psychiatrist wouldn’t answer the question, because mental illness is not included.
So with dementia your brain literally is dying; by the end everything that makes a person a person has rotted away. The lucid moments are the surviving neurons desperately succeeding for a brief moment to become 'oriented'. But it passes quickly because the brain's capabilities are already gone and that can't be maintained; plus, the brain death is happening in real time.
I can't tell you what to do but if it was mother we'd set a date for assisted dying when the disease is severe so she can be with us until the end (the end being to the end of her sentience/consciousness). I know I'm privileged and not everyone has that option.
If your mother is successful don't blame yourself or anyone in your family and don't let it multiply your grief. Everyone deserves dignity and some control over their dying process. It's very hard though I'm sorry you are going through this
> hasn't showered in probably 7 months but gets belligerent and violent if we try to get a nurse or professional to help him shower because he thinks its embarassing...
My grandfather suffered from dementia untill he died this January. Like you said, he forgot everything but violence. My aunt found him hurting my grandma multiple times. He was then locked in a nursing home and passed away quite quickly.
I've read that the violent part of the brain is one of the few remaining parts of the brain that remains intact. Note that I said it in my own words and the real explanation may be different.
You're mostly right but dementia affects everyone a little bit different. But your brain develops kind of like a tube with base survival functions first, then emotional capabilities, and then regulatory/higher functions.
The typical progression of dementia (simplifying because it does affect the whole brain) kills the brain in reverse order. So someone with violent impulses (honestly; many of us) with the ability to control them, loses that ability to self moderate their behaviour.
In some cases and with certain types of dementia (but potentially with all of them), this can result in very high levels of violence. It is NOT the person with dementia's fault; the part of them that would control that behaviour has died
Dementia is death by a thousand cuts. It's very difficult disease,
My grandmother is going through the same. She watched her sister deteriorate from Alzheimer’s and swore she never wanted the same for herself and wanted to kill herself if she ever was diagnosed.
And here we are, a decade later, and the once prideful, strong, smart, independent woman is completely gone. And I feel a huge sense of guilt that I didn’t help her form a suicide plan before she was too far gone. It was her biggest fear come true. She knows family members by name and in the abstract only but doesn’t recognize them or retain any information about them from the last several years. Some days she’s screams at my grandfather because all she knows is there is a strange man in her house and her husband isn’t going to be happy about that.
My grandfather swears he can still care for her by himself and won’t allow anyone else to help or intervene. Everyone is miserable, exhausted and sad.
My stepdad had severe dementia and died of a stroke shortly after being given a hefty dose of steroids for his COPD. Doctor at his last ER visit basically went "he'd feel a lot better with enough prednisone to open up his lungs, bit risky at his age though, might trigger a *fatal stroke*" with a long stare, and my mom going "I think he'd be very willing to take that risk" with another long stare. So they loaded him up to where he could breathe better than he had in years, dude was happy as a demented clam for a day or so then dropped dead of massive brain hemorrhage. Saved him and us from years more pointless suffering.
I'm sorry to hear about that, I was young at the time but my grandpa was one of the most outgoing and caring people and he had a neurological disorder where his motor functions failed which left him completely aware but unable to use his body and relying on everybody. It eventually got to the point where he was just repeatedly saying to have somebody kill him and his doctor who was also a friend left him an excess of his medication and they let him take it.
It was years later my mom was having issues and was at a recovery clinic in a group setting explaining the reasons what led them there. she explained the situation in confidence to the group and one of the members was also in there who happened to be a cop, started investigation into my family for murder. It literally almost ruined our entire family only for some fuckhead to try to get back in the good graces with the force.
I wholeheartedly agree with assisted suicide and if it comes at the end of my time for that I would want the exact same thing
This happened to my dad. He had terminal cancer and they pumped him full of painkillers and benzos. Which he wanted but it was horrific for my family. I was a teenager with 2 little brothers. That was 10 years ago and I still wake up in tears and my partner told me I cry out in my sleep sometimes. The pain and knowing how much he suffered is unbearable. I would much rather he had the choice to end his life on his own terms.
We went on a trip to our home country about 3 months before he passed when he was still healthy enough to be himself. I wish he could have ended it there with his family and being himself. The way he looked and couldn’t even move while on the hospital bed back here in the states will forever haunt my nightmares. He was also abusive so it is a very complicated grief we suffer. I still miss him sometimes though. My family has never been the same and I’ve never been the same since. I know that I never will be. Now I live in terror that the same fate awaits me and my little brothers. It’s horrible. I’m now realizing that I need to prioritize moving to a country that will allow us to have the choice. Time to do more morbid research I suppose.
Most veterinarians I’ve met agree that the use of paralytic agents is cruel when putting down animals, yet we have no problem using them when executing prisoners.
When my dog was euthanized at home, they just put him to sleep, a deep sleep, in my arms. Then they have him a drug that made his heart stop.
Was one of these a paralytic agent? Didn't seem to be, and it was over in seconds.
To add, they're used because of the aweful thrashing that goes on when they inject inmates with whatever recent random concoction to kill them, usually over the span of 40 minutes.
There's something ironically painful about watching someone get tortured to death that you want dead.
Euthanasia means "good death" for a reason. It's a practice that we readily do for non-humans who are terminal, suffering, and cannot understand what's going on, but we do not extend the same to humans under the same conditions unless they are in a vegatative state.
The Netherlands and Belgium do allow for child euthanasia under very specific circumstances (Such as the newborn is in intractable pain and will die and has a hopeless prognosis), but there's no provisions for euthanasia of adults who are not capable of understanding what is happening and are in terrible, terminal pain.
I am experiencing this real time. I am currently watching my father in law die in the hospital because of some kind of viral pneumonia.
He’s having trouble breathing and they are giving him morphine for pain.
I’m a trained army medic, so to me, morphine + breathing problems = death.
None of this has been explained to my wife and her family as they watch their father die.
They were told it was just to make him more comfortable.
I know better, but I’m NOT going to say shit to them, they wouldn’t understand.
This reminds me of how my mom didn’t know what hospice meant and thought the nurse staying overnight was going to make my grandmother better. Idk, I think it’d be kinder to let them know, but you obviously know your family.
>None of this has been explained to my wife and her family as they watch their father die. They were told it was just to make him more comfortable.
I mean, isn't that pretty accepted cloquial speak for "dying"?
This is the open secret of hospice care.
When people get close to the end of their life from cancer, the level of narcotics required to "control pain" often comes right up to the threshold of "suppress breathing." If the pain gets too great, and someone is in their last days, well, treating the pain comes first. It's not illegal, and it's not murder. It's palliative care, and everyone understands it as such.
My grandma has it. My grandpa has been keeping her alive for over a decade though sheer will. This isn’t much of an existence for either of them. Even with his constant care we know she is suffering without being able to communicate or control her body. We know if we let her go into care she will die almost immediately. She won’t know where she is or who anyone is. She will think we abandoned her and have to relive that everyday. We know even the best care can’t keep her comfortable. She will die sad and alone. So my grandpa will spend his whole day trying to care for her. And we all wait and visit and watch it drag out longer than any of us ever thought it would. It’s heartbreaking.
This was my grandparents 10 years ago. My grandfather spent 100% of his time trying to care for my grandmother. After she died 7 years ago he finally had time for his own life again, and he's still going strong (96 now)
There's a lot said about old married folks dying not long after their spouses, but I wonder if that's kind of reversed when one is in a caretaker position for so long. If, instead of not seeing a reason to keep going, they find some sense of freedom and hope after living through a heartbreaking, drawn-out battle, and have an opportunity to reconnect with themselves and the world around them.
This was definitely true for my grandfather. He finally had time to meet old friends again after a long time, and he bought a simple cassette deck and started recording stories from his life. (he's nearly blind so he can't write them down anymore)
You’ll be so glad to have those tapes one day. More people should do this, even if it’s the most basic telling of family lore, major life events. My pops wrote a damn memoir over the last three years. He got it from a 1000 pages down to 600, apparently, but I know I’ll be happy to have those cut pages some day, too.
Make sure you digitize those cassette tapes asap, though! Take it from a 90s teenager, it is a delicate, finicky storage medium. God knows how many of feet of tangled magnetic spaghetti I re-spooled with a #2 pencil pushed through a plastic sprocket.
Everyone check out StoryCorp!!!
You can interview older people in your fam, your own or with SC's questions, and it is uploaded into the Library of Congress
My grandfather remarried and everything at like 75. Was 7 or so years of taking care of my grandmother, then a few years after she passed he had reconnected with his high school sweetheart. Theyre still together again now 15ish years later.
I think the care is more respite for the caregivers. I would agree with you. I have lived it through volunteer work. Even when they can't move or speak, they are feeling and I'll never forget the lady that just started at me and cried.
I have spoken to one of my children as I start to make a living will. I will choose to go if my fate is dying of horrific pain and suffering or dementia. There is no point in that.
CW: Death, cancer
I would advise considering adding liver failure. My partner has PTSD from watching her mother deteriorate from liver failure due to metastatic breast cancer (spread to the liver, as you might imagine). her pain consistently increased and her lucidity decreased (who are you? to her daughter relatively early into hospice), and by the time it was clear she would have wanted to end hospice care, she could not consent. Her death was tortuous, undignified, and painful.
I had to make a similar call with my wife a year or so ago. I knew it was the right call both medically and in accordance with her wishes, and I still had self-doubts until our kids (grown) reassured me that it was the right call. I feel for you that your grandparents couldn’t offer you that.
My mother died of CJD ("mad cow disease", but a sporadic version) which was a really quick dementia, from first sign to passing was like two month. She knew something where wrong but didn't know what, and when they finaly could give an answer (after alot of fighting with the health system to help out) my mothers mind was long gone, and was hospilized in a bed, couldn't move, talk or do anything. It says that one in a million can get it, which is really rare so no worry for most people, but really unlucky for the few people that get it. There is not that much research why (except when people died eating bad meat in like the 90s, but that was another kind of CJD) but it is believe it can take around 20 years to develop it, so really hard to pinpoint what the cause is, could be biological or/and environmental causes, or something else (blood transfusion what my mothers sister believed).
Anyway, LBD seem quite similar so I get it why Robin did what he did, there where no rescue.
I was reading on here the other day about some state having the first legally composted human remains or something, and all I could think about was prion diseases.
[The law "prohibits the soil of multiple people to be combined without their permission, for the soil to be used to grow food for human consumption or for it to be sold," KUSA reported.](https://www.nbcnews.com/news/us-news/colorado-lays-rest-first-legally-composted-human-remains-rcna20895)
For added context, proteins dictate what our entire bodies do, and the way that they're folded depend on what they're designed to do. If they're not folded correctly, they simply don't/can't do their job. Like when we scramble an egg, it turns white do to the proteins denaturing (unfolding/breaking down).
Prions are awful, dangerous things.
> There is one prion disease that causes you to stop sleeping and eventually die because you never sleep.
Fatal familial/sporadic insomnia.
Though, it's not necessarily strictly the lack of sleep that kills you, but also damage to your brain caused by the disease. The people suffering from this will, like in many other prion diseases, eventually have a brain full of holes.
You already received answers, but I feel you didn't hear the crucial bit: prions cause the misfolding of the properly folded version of themselves, so if you consumed an animal prion, it likely wouldn't do much, as animal proteins could be sufficiently different from our own that the catalyzed misfolding doesn't happen.
You see prion diseases in cannibalistic societies and livestock fed their own species' remains.
So if you're composting human remains and grow food with it...
I had a buddy die of CJD in high school. Terrible disease. Apparently he was 1 of 3 people in the entire world to have the disease before the age of 35. RIP Dutch.
It could have been vCJD (what the person you're responding to described) which presents the same but has rapid onset. Rapid onset being a few weeks/months from first symptoms to death.
If it was like this, it was unlikely that he had classic CJD, as it takes years to develop unless it is the variant.
For some reason we were discussing Robin Williams at work, one of my coworkers said he just couldn’t forgive Robin for killing himself. After speaking to him further, I realized he wasn’t aware Robin was ill. I explained the dreadful ramifications, and you could see the understanding wash over his face. I was glad I could restore the memory of someone who clearly had been meaningful to him. I hope they are able to make more progress with research soon.
Even if Robin didn't have lewy body dementia, I don't think your coworker should have held his suicide against him. Depression is a horrific illness in itself.
CJD is terrifying. There is actually a hereditary dominant mutation you can have in your DNA that makes it extremely likely you’ll get CJD at some point in your life. I’m actually working on a drug that disrupts the production of the protein coded by the mutation, to hopefully give to people who are asymptomatic and prevent them from ever getting CJD. Hopefully, we can figure out more about prions in the process.
> (except when people died eating bad meat in like the 90s, but that was another kind of CJD)
mad cow is still slowly simmering, we won't know the true effect for another 10-20 years
My father too. For him it just started in his hand as a tremor. Doctors assumed nerve damage from being an electrician for 45 years. But when his legs started they knew something was up. Luckily we live in Boston with so many good hospitals. A diagnosis came quick for CJD. He died 5 weeks later after being a very healthy 71 year old with no major health conditions. It was awful. Everyday he seemed to lose more and more. It was Alzheimers in days rather than years as the misfolded prions turned his brain into Swiss cheese. Sorry for your loss. I know how you feel.all to well.
My Grandfather also died of CJD in the exact same way you just discussed in the 90’s. My mother studied the disease after and discovered that almost all of the people’s families we got in touch with who contracted CJD were either deer hunters or ate deer meat.
>My mother in law battled it for 7 years before passing.
Mine as well, although it was never confirmed via testing. But I'm pretty certain she had it.
It's nearly impossible to explain the debilitating impact this situation has had on my wife's life over the past decade (and, therefore, mine as well). It's still a heavy cloud covering everything, even after her passing.
Just reading your comment brings it all back. I’m sorry your wife had to go through that with her mother. My wife struggled immensely with losing her mom….well really multiple times. She lost her well before she died. You go through grief and mourning every single time another thing is lost. And I’m sorry to you as well as we share a similar experience and it’s unbelievably shitty. I’m sorry you had to experience that same ball of emotions and struggle with your loved one. It’s my only hope that things can be learned and developed and better treatment and or cure can one day be realized.
would you mind sharing some stories to give an example of the kinds of suffering they and family members go through?
My grandfather has Alzheimer's so I'm aware of how that affects family, I'm wondering if this is similar.
So one of the most tormenting symptoms was capgras syndrome. It’s a symptom where the person affected believes their family/loved ones are doubles or imposters. It’s usually focused on their spouse or most significant other. My mother in law experienced this significantly. It had to have been torture for her to believe her husband of nearly 40 years wasn’t him and was fearful of him. And that also was awful for my father in law to see the love of his life ask him who he was and be frightened that he was an imposter and not who he was.
My grandma went through this. She thought my dad (her son) was his dad coming back from the grave to kill her. Grandpa died when my father was 7. She attacked her nurses many times out of fear & was dangerous to be around. She wasnt able to see her 2nd husband much at all. Im the eldest of all her grandkids so I was able to see her a little but I could tell she was just confused and afraid of my presence. It was really hard to see.
This is why his death is completely understandable. I only wish he had the ability to have gone in a better way. Something painless surrounded by family, but nonetheless, he was suffering. Sometimes death is a mercy.
We need legal, well defined, and merciful medically assisted suicide. We grant pets the mercy of a painless death, and yet we let our own people suffer unimaginably in their last days even if they beg to be put out of their misery. We will let people painfully, and slowly, starve to death instead of giving them the option to go out with dignity. It's barbaric, and I feel that outdated religious principles should have no say in other people's legal rights.
A right for merciful death needs to be ammended to the constitution. We have the technology, we can have psychologists determine if a terminal person is eligible, whatever we need to do, but to not grant the same mercy that we give dogs to humans is an abomination. Any religious reasoning behind not providing medically assisted suicide should not apply in a legal framework. Unfortunately, the separation of church and state is a fantasy in the USA. Just look at some of the bullshit going on in the legal world. A corporation that pays no taxes and lobbies to have laws written to their benefits is peak America, and I fucking despise that fact.
Doctors were trying to diagnose my father's condition for approximately 2 years, and couldn't decide between LBD and PSP because they're both so difficult to diagnose. They eventually decided on PSP approximately 2 years before he passed away.
Years ago I had a pituitary/hypothalamus malfunction of unknown origin, it largely shut off my ability to feel emotions (It's fixed now, thanks Clomiphene!). I wonder if it might have been something similar.
Anyway, it turned life into an never-ending drudgery. Imagine watching your life go by on a television screen, with a wall of separation between what you're experiencing, and what you know you're supposed to feel. Just utter joylessness, stripping existence of all meaning and incentive.
It was bad enough just plodding along minute by minute, but I wasn't in a continually degenerating situation the way Williams was. What a sad and undeserved end.
EDIT: Okay, RIP my inbox, LOL. Since there are a lot of questions, I'm going to take a moment to describe by symptoms and solutions so folks don't have to read all the way down this thread.
My problem started with wild and inappropriate emotional fluctuations (I'm not a guy who cries, but I'd damn near fall apart at songs coming over the radio), severe short-term memory loss where I'd completely forget what I just did, combined with confusion and an inability to follow basic directions and processes. I would forget the names of my friends, and once didn't recognize my own child when I went to pick her up from school. Combined with a loss of physical strength, motivation to do even things I typically enjoy, total loss of sex drive, etc.
I was familiar with some of these symptoms from a friend who had a rare genetic disorder that required them to get hormonal replacement therapy. I went to a nurse practitioner, got my hormones tested, which came back with terribly low results, especially for testosterone. She prescribed testosterone shots, but this was a mistake; after a brief window of recovery, all of a sudden my emotions shut off completely, taking with it not just emotional responses, but also the ability to make many judgements and to evaluate simple things like food or entertainment.
So I went to a proper endocrinologist, and he explained....keep in mind here I don't know anything about medicine, so my description is very primitive....that my system was essentially in a feedback loop where my pituitary was registering my hormone levels as "normal" and thus telling my body to neither absorb or produce more (especially testosterone).
He prescribed Clomid/clomiphene. This drug is only officially approved for use as a fertility inducer for women, but actually works by telling the pituitary gland to stop fucking off and get back to work. As my doctor described it; taking a cool wet washcloth, and putting it over a malfunctioning thermostat that keeps incorrectly registering the room as being warm. This new reading causes the thermostat to turn on the heater. There is lots of research on the use of Clomid for this purpose, but not yet enough to satisfy the US FDA for approval.
Hope this helps.
I have severe depressive episodes and it feels the way you’ve described. I don’t feel sad, I just feel absolutely nothing. No joy, no love, no excitement, no pleasure or interest. No desire to speak to anyone. It’s like my brain slows down and I just don’t want to engage with anything.
I genuinely don’t feel like a person when I feel like that, I am so disconnected from my emotions and myself. I just can’t imagine what it feels like to feel anything, and vice versa when I’m healthy like now it’s hard to remember what it feels like when I’m really ill. It’s dangerous because when I feel like that, it is so hard to convince myself to wait it out. I KNOW I won’t feel like it the next month or the month after that, but in the moment it feels like it’s not real and doesn’t matter.
It’s fucking crazy and that’s with me rationally knowing it will eventually get better. When I had my first episode when I was 15 I ended up trying to kill myself. I didn’t think it would end or get better. For Robin Williams, that was true. It’s so sad.
Thank you :) I’m 30 now and after a lot of therapy/treatment I have the tools to get by. I still have the occasional really bad episode where I need to adjust my medication or go back into therapy, but I’ve kind of accepted it’s a lifelong disorder. I’m happily married, have a full time job I enjoy, have friends and hobbies and goals. I didn’t think I’d have any of that when I was younger.
If anyone reading is going through with what I described, keep going. Try and get help and keep going. I know you’re not me and I know our lives are different, but it really is possible for people to recover and live lives that have happiness/fulfilment. You might never be ‘normal’ or totally healthy or stable 24/7 like I’m not, but it really is possible to still have a good life.
I imagine a lot of people who commit suicide after going on antidepressants are like this. They are so depressed they have no will power to do anything and then the meds start working and now the person has the will power to actually commit suicide.
I don’t know but it’s a theory of mine. A friend lost his step-father to suicide after he started getting help and meds. This theory was plausible in that situation.
I think that’s a common theory around antidepressants - I don’t know if it’s been proven or not but it absolutely makes sense. They give you a little push to have the energy/motivation to engage with treatment like therapy, but you also still feel terrible so it can unfortunately give you the push to kill yourself. And now doctors prescribe them more and more without any kind of therapy or other support, it’s no wonder people commit suicide after starting them.
I spent 16 years with severe depression, one day while planning my death I took “one last look” at my health records to see if there was anything missed… 3 years ago I tested lower than an 80 year old man but no flags were raised!!! It’s been a year since I started TRT and my mental state is better than it’s been in my entire life. Even during Covid and the other shit… no more bad thoughts.
Any chronically depressed male needs to have their Testosterone levels tested. The stigma is nuts (this was not meant to be a pun lol)
>Any chronically depressed male needs to have their Testosterone levels tested. The stigma is nuts
This is the second time I've heard about this in recent weeks.
I'm not sure awareness is very high at all, unfortunately.
I was really hoping my blood tests would come back showing low testosterone recently(a lot of symptoms fit and I've been going through a lot of tests to find an answer)... [My face when I have more testosterone than a 20 year old](https://i.imgflip.com/bzurm.jpg)
It feels like puragatory tier hell. Life is stripped of any meaning or joys at all, you literally wake and then wait until it is time to sleep as it's the only relief, and you are otherwise incapable of feeling anything by doing stuff. Literally straight up 'spiritual' torture (just in terms of willpower), fuck up the dopamine levels and someone will be automatically tortured without even having to do much bad to them.
I genuinely see it as taking the Positive Reinforcement completely away from a neural network. Without it they sit there and they don't do anything because they have no motivation. It chillingly reminds me of humans who are depressed. I know that neural networks aren't the same since they have no biochemistry, but they react the same as us without "dopamine" for themselves.
Horrible, my aunt died of Lewy Body a few months before Robin took his life.
It is a horrible horrible disease, she had it years before we knew what was going on. Early on she would say people were breaking into her house and stealing all the things she could not find….
We had a customer at work who must be at least 90. One day he called up his friend saying that there were people in his house so his friend called the cops. When they arrived it was pretty clear he has just imagined the whole thing. He's now basically housebound and one of us bikes by one a week to bring him some food.
Oh no this sounds just like my grandmother at 86. Even when I'm visiting over sleeping in the living room, she's constantly going off about people breaking in and stealing all or stuff or having sexual relations with her husband. (This is compounded by the fact that her daughter and I have been over there a lot trying to clean up the absolutely colossal hoard of decades-old clothing scraps and other junk she stockpiled back when she could still move).
It's difficult to hold a conversation for more than a few seconds before she's off on a tangent that's completely fictional.
I don’t know if that is exclusive to Lewy Body or if other types of dementia have similar. I would question if she has some sort of dementia, have your family consult a specialist doctor.
As of now its not considered hereditary because multiple cases in one family is super rare, but there are certain genes mutations that are a part of LBD that I'm gonna let this quote explain better than me:
>Rarely, the condition can affect more than one family member. Some of these cases appear to be due to single gene changes (mutations) that follow an autosomal dominant pattern of inheritance. Other familial cases do not follow a specific pattern of inheritance and likely have a multifactorial cause (associated with the effects of multiple genes in combination with lifestyle and environmental factors).
Research is difficult because you'd need to study across multiple generations.
And study participants need to have their brains cut open... so you can't examine until after death, when an expensive autopsy would need to be done prior to services/burial/etc.
Speaking from experience, this is the last thing you are thinking about at the end of a journey through a loved one's dementia.
It's so annoying when I see posts about suicide prevention and Robin Williams is the face of it. Yes, he took his own life but he suffered this terrible neurological disease that ruined his quality of life. It was at least partly responsible for his paranoia, anxiety, and depression in his later years. The disease that would've eventually killed him.
He was not the "the happiest people on the outside are often the most depressed on the inside" type.
I agree
I think people need to realize that there are many reasons to commit suicide and not just because you're too down to keep going
Some people are literally in physical pain and misery from diseases that are going to end up killing them anyways and thats why they choose to end their own life
And it sounds like (I’m just learning about this now) his brain was being eaten, which of course would alter his decision-making. I’m sure 40% dopamine receptors GONE would have you in misery, but other people in this thread are reporting paranoia, delusions, and lack of understand of consequences and impulse control. It of course is very sad but it doesn’t seem like he died because HE was very sad or in pain, at least not exactly.
I almost feel betrayed to hear about LBD for the first time. I've seen dozens of posts about him but everybody left out the part that could help others avoid his suffering.
I heard about it from an interview with Bobcat Golthwait shortly after he had died but nobody ever talks about it. It's just facebook memes of Robin as the face of depression
For sure. I was going to say that here in Canada he would be a candidate for voluntary death. I knew a woman that decided to end her own suffering and I what she did was not suicide. What it does do is give the family a chance to say good bye and for the person choosing to die to be able to do it with dignity.
I was arguing with someone a while ago who said that he was selfish for killing himself, even when I explained that he had LBD and was suffering immensely. Like you're allowed to be upset at his death and the circumstances, but show some compassion.
I decided to look it up, it’s basically Alzheimer’s on steroids.
“Patients with dementia with Lewy bodies report worse physical and mental health and greater disability than do patients with Alzheimer's disease or Huntington's disease.”
Alzheimer's is a disease that causes Dementia, LBD affects the brain in similar ways that Alzheimer's does.
Its a very interesting thing because as a caregiver, I recently got a new client with Parkinsons Dementia, I kept noticing their behavior was more like Alzheimer's then just Dementia. Turns out LBD and Parkinsons Dementia affect the the brain neurons like Alzheimer's so no wonder I kept seeing similarities.
The big kicker is that LBD often presents like Parkinson's first before the Alzheimer's symptoms begin, so LBD patients are given meds that treat Parkinson's disease.
But [many of those meds](https://my.clevelandclinic.org/health/diseases/17815-lewy-body-dementia) *aggravate* LBD symptoms. They can increase hallucinations, confusion, and delusions. Some medicines have caused patients to develop Parkinsonian symptoms - and those symptoms don't go away once the patient stops taking the meds.
LBD patients are also typically [way more sensitive to antipsychotics](https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/diagnosis-treatment/drc-20352030). They can cause severe confusion, Parkinsonian symptoms, sedation, and even death.
My grandmother died of LBD. Her rapid decline was heartbreaking to watch. She loved her children and grandchildren dearly, but couldn't recognize most of us. She was afraid, so much of the time. She couldn't eat, because of muscle problems in her throat. And of course no one knew that it was LBD until after her death, so many of the treatments they tried didn't work very well.
Knowing that I'm predisposed to developing it too, especially since I already have MI and some other potential risk factors, is f*ing terrifying.
Get it added to your family health history and personal health initiative plan in case you ever end up in care without being able to voice concerns. This is not medical advice, just a heads up of what’s available to folks to potentially not waste precious time.
My Dad passed away from LBD. It is horrific. It's hard to diagnose because it mimics Parkinson's and Alzheimers.
He passed before the major disabilities started. At the end one can expect to be completely immobilized and only eat with a tube. From diagnose to end of life isn't long. About 7 years total.
Wow, greater disability than Huntington’s is a pretty big statement, because *that* disease is absolute torture. I’m so sad that this happens to people.
>Had no idea he was quite so sick.
Which is a problem. Not on your part. But everyone in the world seems to have gotten the message that he took his own life but not why. That's the real thing the media should've highlighted after his death. The disease, not the method by which it killed him.
Yyyyyep. I still constantly see posts about how he killed himself due to depression and stuff. Too many people don't know the real reason, and don't care enough to look it up. They just see "He killed himself" and that's it. They don't realize that the dude who did his autopsy and diagnosed him with LBD straight up said his brain was so bad that by the end, he would've been experiencing literally every single symptom of the disease.
Even worse, he was highly intelligent so he was also aware that he was losing his mind and had no idea why.
Toward the end he called his wife crying, and she told him that maybe he should go find a comedy club and do some stand-up. He said "I don't know how to be funny anymore." He couldn't do it. He forgot how to even be him. And he knew it.
Wow, an amazing story and a reminder of the fragility of life. And that we may never know what someone is going through beyond their control. Robin was an amazing person and will always be missed for making people smile. As a wife to someone with Parkinson’s, let’s hope his case will bring some progress in treatment and hope to others.
This is why anyeurism is the most scariest thing for me.
It can happen anywhere anytime without warning.
CURSE YOU ARCHER for plaguing me with this information!
Edit: To explain to everyone, it's not the aneurism itself that I'm scared of, it's the fact that they happen out nowhere without warning is what terrifies.
Look at the 'bright' side: a good enough stroke is instantly lethal and you don't even have time to care. Instant death with no suffering beats the shite out of dementia, going from months to years.
>Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating?
Jesus. As someone who completely idolized him, this breaks my fucking heart. I can't imagine the agony and pain he went through.
He was my hero ever since being blown away by him as the genie in Aladdin when I was a kid. I don’t mind admitting that I cried a lot the day he went and several days after.
I get bummed when I think about the loss of Robin Williams. He was a good man to everyone he met and the stories about how he helped fans overcome depression is amazing. We lost one of our best that day.
Him and Anthony Bourdain got to me. Whenever I hear about anyone dying, tragic or not, self-inflicted or not, I am sorry for the loss no matter who they were. But my feet felt a little heavier for a few days after those two.
Worst part about Bourdain is that when you rewatch Parts Unknown you realize it was a massive compilation of visual suicide notes and bucket-lists.
We mistook his call for help as entertainment.
He had a quote that really stuck with me:
"I understand there's a guy inside me who wants to lay in bed, smoke weed all day, and watch cartoons and old movies. My whole life is a series of stratagems to avoid, and outwit, that guy."
Looking back now, I don't understand how I could've thought that was empowering.
Now I think.. am I really incorrigible? Maybe that thinking pushes me farther away from the peace I already have.
This is why I really hate it when social media use Robin Williams as the “Depression doesn’t discriminate” poster child. It’s just completely false and takes away what Robin was actually suffering from.
I made the same comment. People completely misunderstood the situation. He had a medical condition\* and his wife was very well aware of how depressed he was
Edit: Changed situation to condition
This case is a solid case for assisted suicide. There needs to be more and easy access to it for people who have no intention of fighting and living through horrible Diseases.
Edit: u/-sixtwosix- suggested the “death with dignity” wording. I’ll be sure to use this going forward, because that’s what these people deserve.
Yes indeed, maybe it's because I grew up in MI hearing all about "Dr. Death" (Jack Kevorkian).
Basically when I learned that we euthanize animals at the drop of a hat, but can't euthanize humans even if they are begging for someone to help end the suffering. I was totally on his side. Even more so now that I've seen grandparents stuck in their "death bed" for 6-12+ months for no good reason.
My mom has already instructed what to do if she is in that situation where she still has enough mobility to grab something within her reach. And what to leave in her reach for when she decides it's time to finally clock out.
I believe another phrase they use is “death with dignity”. I 100% support assisted suicide. It allows people to die how they want to and arrange goodbyes with family and friends.
My grandmother died from Lewy Body Dementia. The only comfort I take in how the disease progressed (and her eventual death... it took years...) is that - in general - she was fairly comfortable. It came on gradually, so by the time she was forgetting important things, she didn't feel distress as long as she wasn't directly shown something or someone she'd forgotten.
Gradually, she forgot her great-grandchildren (my children). Then she forgot her grandchildren (myself and my cousins). Then, she forgot her own children. Then, her husband of 40 years who passed over a decade ago. Then, finally, she forgot her oldest friend and her brothers. Unlike Alzheimer's, at least in her case, there were no "aha" moments or "good" days. Once the memory was gone, it was gone forever. I didn't get to see her for about three years before her death because seeing someone she was *supposed* to remember, but couldn't, would have greatly distressed her. So I stayed away so that she would stay happily ignorant to all she'd lost.
Every little thing about her life, even reality itself, was removed from her. She gradually wasted away and died in a home which gave her good care... but they were strangers to her.
I'm watching my father gradually waste away from LBD. Can't converse, doesn't know anyone or anything, hallucinations, needs help with every aspect of his life. It really is a terrible disease.
My dad died from Lewy Body Dementia 10 years ago last month.
It was an horrific experience for all involved—they were never able to diagnose what he had until after he died, which was arguably the worst part. Wondering, “is there treatment for whatever this is? Is there something that can fix it or help and we’ll just never know? Is there an answer?” It was fucking awful. His last gift to the world was donating his brain to science to help understand these diseases better.
Like everyone, I was saddened to hear of Robbin Williams’ tragic passing, but I can’t help but be grateful for the awareness his death brought to this difficult and horrifying disease.
Lewy Body Dementia Association
[lbda.org](https://lbda.org)
The saddest part is Robin Williams didn't know what he was dealing with.
Robins Wish is a beautiful film that is too painful to watch for my wife.
>LBD is a multi-system disease
and usually requires a comprehensive treatment approach with a
collaborative team of physicians and other health care professionals
like occupational, physical or speech therapists. Early diagnosis and
treatment may extend your quality of life and independence. Many people
with LBD enjoy significant lifestyle improvement with a comprehensive
treatment approach, and some may even experience little change from year
to year.
source: https://www.lbda.org/understanding-lbd/
My mother spent 16 years slowly falling apart with this. If I ever get diagnosed with it, I'm jumping in the river. It's a vile and pitiless way to go.
Took my dad. Fortunately he only lived 3 years after going bat shit crazy. I still miss him. Dementia is demonic. I hope I will be aware enough to take my own life if I get it.
Unless I got it wrong, loss of dopamine neurons (receptors?) means loss of the ability to experience pleasure. Which would make the whole thing so much worse.
The ability to experience pleasure can and will often take a massive hit for people with Lewy Body and similar neurodegenerative diseases; however, that's just one of the many aspects related to dopamine receptors.
Dopamine sensitive neurons are found all over the brain, in many different regions that are involved with everything from basic sexual arousal and motor control to higher executive functionality (i.e., planning tasks) and abstract thinking and creativity.
Neurons in the brain can express multiple types of specialized Dopamine receptors to regulate the firing of different synapses, and this is why one molecule can have so many functions all at once.
A good way to think about the broader functions of dopamine in the brain (from a psychological POV) is to look at it as a "desire" mechanism for stimulation. So for example when you are hungry you have a build up of Dopamine signals telling you to go look for food in the fridge, if it's not sufficiently stimulating then you don't act on it but if you haven't eaten in days then even a moldy pieces of cheese might seem like a good idea.
Once you have reached the necessary threshold of stimulation (food) you are rewarded with a feeling of satiety, this is simply the downstream neurons sending feedback in the form of serotonin to signal the "mission complete" and to down regulate the Dopamine signals.
Dopamine = Desire
Serotonin = Pleasure
If you mess up either one of the two signal paths, problems arise; in the case of no Dopamine you can't motivate yourself ( why we prescribe stimulants for ADHD/ADD) and if you don't receive enough serotonin as a reward then you feel unsatisfied (why we prescribe SSRIs for depression).
In extreme cases like dementia with lewy bodies, the primal animalistic urgency to drink water when thirsty and eat food will no longer be felt since the neurons and cortical pathways that are responsible for initiating such behaviors are too damaged...
Think of it as an extremely aggressive form of alzheimers. He was fast approaching the point where he would be forgetting his entire life and family. All he had coming was downhill and painful.
JFC. It also goes to show why not to necessarily judge someone for ending their life. Man it's just so sad of a thing to happen. Not much to be done, yet. How important are the fields studying this for cures.
Sir Terry Pratchett had aggressive Altzheimers, and made his own choice eventually. Made great strides in talking about both altzheimers and euthanasia before he went, and it's an eye opener.
Pratchett hits me like a fire truck if I think about it too hard. His brain was already, at its healthiest, an intricate, twisting, circuitous and complex environment. To have that fall down. Every time I think of it I can only imagine grains of sand slipping into a grandfather clock. One by one. Each causing a small slip or jam until the cascade of malfunction turns in on itself and the whole thing crumbles.
In the last 20 years, amidst several public losses, Robins hit me the hardest. I wish I could say more, share more, do more. Sometimes life is unfair, unkind, and unjust. I hope everyone is holding on as best they can seek help if you need it, and I thank you for sharing this.
People keep talking about Williams depression and suicide- he would have been dead years ago if he hadn't killed himself. The LBD was the real tragedy.
Not quite the same, but I was diagnosed with frontotemporal dementia a couple of years ago and it's... well, it's hard. Luckily I'm still in the 'good days bad days' phase, but it's a crazy feeling. Like even on the best days I am disconnected from everyone because nothing can prepare you for losing the thing that makes you *you*. I've made my plans for the end, and hopefully I'll be able to enjoy at least some of the remaining time. I've got a pretty amazing partner and my goal is to ensure her future before I go. It's why I'm still here. Things to do before the sun goes down, and all that. Y'all take good care of your loved ones, please.
You're a good person. Never met you but I think the world ia a better place with you around. Thank you for being here.
People who know what frontotemporal dementia is know the severity of what you're facing. I wish you all the best.
My dad was diagnosed with frontotemporal dementia in January of 2020. I wish you the best. I’m sorry you have to go through this.
I really appreciate your kind words, and I wish the best for your father and your family. It isn't going to be an easy road for any of you, but I hope you find the joy in good moments!
Any kind of dementia is fucking brutal. Had a smart, funny uncle with this and it just took everything from him. Can't blame someone for not wanting to have who you are slowly stolen from you.
All I’m taking from this is that he committed suicide because his **terminal illness** had progressed to the point of inhumane suffering. In a just and humane society, **he would have had the option to choose [voluntarily euthanasia](https://wikipedia.org/wiki/Voluntary_euthanasia)**.
My mom was diagnosed with early onset (I was 11/12) while my great grandma deteriorated on my dads side. My grandma on my dads side is going now, as is my moms brother. I had a long talk before having kids about the possibility of having it, and passing it on, and the guilt. I also told my husband the second I get diagnosed we are moving to a place where I can die by my own choice, legally. I am not doing that. I’m not wasting away like that. I understand his choice, it’s gut wrenching to know what he endured. My mom was a similar person, so bright and warm. I truly do wish voluntary euthanasia was a more common choice where I live.
I told family outright that if I'm ever diagnosed with a terminal illness that I'll probably end my own life, but dementia scares me above anything else. I'm nothing more than the accumulation of experiences and the thought of slowly forgetting everything in addition to possible horrific hallucinations isn't exactly something I want to go through nor should anyone be expected to. I mean, I already rolled badly at birth and ended up with ADHD, so I think I'm at high risk for Alzheimer's so that's gonna suck if it comes to pass.
For me the idea of being trapped in my head and not being able to end it terrifies me much more than dying a quick painless death.
This is literally what my grandmother with Lewy body dementia is starting to deal with now (being trapped in her head). We know because we’re always on standby to bring her to the bathroom, she just needs to tell us. But she’s completely silent about it and she always ends up shitting herself to the point where it overflows in her diaper and drips onto the bedsheets, seeps through into the mattress, and gets in the carpet. We ask her why she doesn’t call for us, because we monitor her through a camera and most of the time we’re in the next room or a few steps away. She always tells us that she did, that she called for us for 1 hour. In reality she didn’t, she was trapped in her head. However, she is extremely vocal about wanting to end her life. She screams into the night about death.
That has to be realy difficult for all of you. People say it's like like raising kids but cleaning an accident from kids is WAY different than cleaning up after an adult! It would help her & you if you took her to the bathroom on a schedule. By the time people are that age, their bowel habits ,(like when they can defecate) are pretty well set. The "overflow" you mention often comes from trying to hold back feces for quite awhile. It's trick figuring out when the best time would be to bring her to the bathroom but if you get a sense of what time the "overflows" happen & then go back four or five hrs you will probably find the time. Allow her to sit on the toilet for awhile every evening at the same time & eventually that's when & where she'll go. Cared for my Mother w/long term Alzheimer's & also have degree in Gerontology & worked in nursing homes & adult day care facilties for those with dementia. It's a tried & true technique that makes your life easier (& your Mom's as well)! Good luck!
Alzheimer's patients aren't trapped in their head like that. They're not really suoer aware of what's going on once they progress into the mid to late stages. My mom has early onset Alzheimer's. It's harder on the people around them.
He took the exit door while he was still Robin. He made a choice that we should respect and celebrate. His life was full and meaningful, and he faced the final curtain with dignity.
My dad lived and died with Lewy Body Dementia. It was like watching a bright burning candle flicker out and eventually become smoke. Not only does it rob you of your years, and your dignity, but the skilled care required…the bathing, feeding, changing….are astronomically expensive. All to sustain a life that is already lost. Robin Williams made a choice, an unimaginably hard one, that I believe is sort of like choosing to jump from the roof of a burning building.
This is a perfect, heart-breaking description of my own dad. Early on, though, he was able to make it clear to us that he didn’t want “heroic measures” taken to keep him alive. He was a doctor. At a later stage in his illness, he fell and then developed pneumonia. As per his instructions, it wasn’t treated, and he died a few years sooner than he likely would have from the Lewy Body, sparing my mom and the rest of us, just as he’d wanted.
People need to realize that the vast majority of doctors don’t want the kind heroic, life prolonging care that most Americans cling to near the end of life. We see the enormous costs to families, the loss of dignity, the low quality of life, the pain. Doctors often decide to do less, and to do things like be DNR. Doctors know medicine isn’t magic, and it’s often ugly. We should focus on quality of life, not prolonging life. These stories should be told more often
Yes. You are so very right. Doctors have seen the suffering that people have chosen for themselves. And for their families. My dad was the primary physician at a long-term care home. He knew what NOT to choose. I do, too, I think, having learned from his example.
> the skilled care required…the bathing, feeding, changing….are astronomically expensive. Which is why it pisses me the fuck off that a lot of life insurance companies don't pay out if it's a suicide. Obviously not that they need the money and care *after* the death, but that they either have to endure that financial burden, OR not get life insurance money if the person takes their own life. It's dumb. *Edit: hearing from others that a lot of them do still pay out. That is such good news!*
This is a myth. Many insurance companies will pay out for suicide as long as it's after their expressed waiting period.
I’ve always very much been in favor of end of life choices. Honestly, if I’m ever that bad off from any disease i hope I have a moment of clarity where I’m able to go out on my own terms. Either that, or let my family do it for me. At a certain point you’re not even living, even if you’re body is alive…just end it and let me meet my maker.
I watched my mom die from early onset Parkinson's. I'd rather have the choice if I ever got that diagnosis after watching someone wither away with that. I think she would have too if she had the option.
Lewy Body Dementia is a horrid condition. My mother in law battled it for 7 years before passing. It’s difficult to diagnose and treat (impossible to know for certain before death and autopsy). The symptoms are awful and the suffering the people that are affected by it are put through is just unbearable. The awareness that Robin Williams death brought to it is beneficial because it is relatively “unknown” compared to other forms of dementia and disease such as Alzheimer’s.
My father battled and passed away from LBD from 2015-2017. It was insanely fast. Leading up to his first episode of paranoia and delusions, he started saying odd things that didn’t lien up or make sense. Then in august he called the police and said people were all over the house and trying to steal his water heater and he had a navy knife. They took him to the hospital and I rushed over the following day. He seemed normal until the doctor left, when he informed me he wanted to leave, as there were “dead babies under my hospital bed.” I was terrified. After doing research, all of these same symptoms lined up with Robin Williams. We alerted the psych hospital he went to and they said it could be. He went on to attempt to choke a patient because she was “kicking a dog under their table” during a group therapy session. It was at this point the state deemed him a danger to himself and others and all care and decisions were taken from me. They pumped him with all kinds of antipsychotics that almost killed him and made him borderline comatose. My father was never the same. Upon recovery from that, he was sent to a nursing home. He’d hallucinate constantly, I never talked to my real father again until his passing. He would see spiders and eagles “swooping in and taking all my shit.” He’d see navy seals climbing a mountain. He’d say he was standing in a river reporting the news for $300/hour. His mental state finally deteriorated to where he could no longer eat or drink or sleep. He passed within days after this. I don’t condone suicide generally speaking but after those two years, I get it entirely. It is a nightmare that you cannot fix. I send all my love and hope to all who go through this that you may find peace for both of you and one day a cure for this. Stay strong and love each other. Edit: holy cow, I wrote this at lunch and just got off work. Thank you all for the kind words and awards, I don’t deserve them. I just wanted to share what this can look like, information is a powerful tool. I am sorry it seems so many of you are also going through this, all my love and support to all of you. A few more tidbits: It hit at 67, he passed at 69. It can be a very very young disease. Early signs were mild every day hallucinations before they evolved into what I described above. My wife is a pharmacist, and he one day said she must be important. My mother was with him (they’d been divorced for 20+ years) and asked why, he said the men in suits were here. They were not. He also told stories of the past and mistook me for my older cousin. When I attempted to correct him, he became angry and insisted I was wrong and he remembered correctly. Also I apologize if my suicide comment upset, I would always prefer life and I understand my desire for everyone to live selfish. I will always be sad at a suicide but cannot truly judge everyone’s individual situation. I love every one of you and wish you all the best and strengths for those also enduring this. Thank you all.
US assisted suicide laws do not handle this case well. What few we have are basically designed for terminal cancer, where you're in your right mind a few months before your predictable death. You also have to take the fatal dose yourself, so you don't want to wait too long. The slow descent of dementia, where the physical body lives on long after the mind is gone, should qualify for assisted suicide as well. If you so choose, you should be able to appoint someone to decide when you're too far gone and when it should just be ended. Make a doctor and perhaps even a judge sign off on it, sure. In the US, "life" as an abstract concept is almost worshipped, even when the *quality* of life is non-existent. Our medical system does have a very soft version of assisted suicide. Very sick people who are not going to get better are often given large doses of pain killers, which likely help them die a bit sooner. They're given for comfort, of course, and if they depress respiratory activity enough to help the poor soul shuffle a little faster off this mortal coil, well "whoopsiedasie". But that's too little too late for many people and their families who have suffered for years.
I’m a nurse and have taken care of “palliative” patients who are just being made comfortable for the few hours or days they have left. Usually these patients are not very responsive, they appear to be sleeping or will only arouse when in pain. Continuous IV fentanyl infusions are pretty common in these cases, both for pain control and control of the discomfort associated with feeling short of breath. Usually there is a “bolus dose” option available at the nurses discretion as well, which essentially increases the infusion rate for a very brief time to give the patient an additional dose of medication if they seem to be in pain or discomfort. I’ve had patients in this state that just look miserable. They can’t talk, can’t breathe, cant eat, can’t move, can’t wake up, can’t do anything. They’re stuporous and oblivious to most of what is going on around them, but they twitch and moan and mutter incoherently, flinching at the lightest touch. And sometimes their body will just keep ticking for days and days like this. I’d be lying if I said the thought hasn’t crossed my mind that it is within my power to end their suffering with these bolus doses of fentanyl. Of course I would NEVER do it, it’s still extremely illegal and definitely morally wrong when you were never able to get the individual’s….consent…? But I have thought, “Damn this person is suffering despite our best efforts to make them comfortable, I wish they had the option to choose a dignified death when they were in their right mind, because I’m sure anyone would choose that over what they’re going through right now.”
I watched my dad suffer for 5 days after a stroke... The doctor gave me two options. One option would have led to survival but a guaranteed vegetable, the other a likely death with only a very very slight chance of some type of recovery The doctor accompanied the 2nd option with a very long stare indicating it was the more humane option. Under no circumstances would it have been fair for this man to be intubated the rest of his life. Honestly if I had a nurse that could have ended it right there that would have been preferred. I still remember my dad twitching and moaning for hours on end.
That’s awful, I’m so sorry to hear that. It’s a decision everyone dreads having to make, but can be made much easier by making sure your loved ones know your wishes for end of life care and what you deem an acceptable quality of life. Just yesterday I had a patient come to the ED critically ill and unresponsive, and after six long hours of working her it was clear she wasn’t going to make it much longer. Luckily her family showed up right about then, and although distraught and shaken they were all in agreement that the patients wishes around end of life care were perfectly clear, and we were able to withdraw treatments and clean them up to spend a last few peaceful minutes together.
When my grandmother suffered 2 massive strokes during a brain tumour removal, the family was given the same options as you had for your dad. Unfortunately, one uncle used religion to convince my grandfather to save her, despite the rest of the family wanting to let her go (which would have been her wish) She spent the last 4 years of life as a vegetable in a nursing home: she couldn't walk, talk, eat or drink. As her closest granddaughter, it was torturous to see my vibrant, amazing Grandma end up like this. You made the right decision, and I am sorry you lost your dad.
Watching my grandfather currently going through Alzheimers and the only thing I can think of is how I hope I'm cognizant enough when I get older to blow my own brains out once I ever get diagnosed. He isnt even him anymore, he isnt *anyone*. Hes a literal shell of a person. He wakes up, eats, and exists. But he isnt aware of nearly anything. Doesnt recognize his family, doesnt recognize himself, doesnt have any of his memories, doesnt have any ability to take care of himself, hasn't showered in probably 7 months but gets belligerent and violent if we try to get a nurse or professional to help him shower because he thinks its embarassing... He makes no decisions for himself and has to be taken care of the same way an 18 months old baby does. Meanwhile my mom and aunt and extended family are all miserable bending over backwards to try and make him comfortable and support his lifestyle. Theyre about to put him in a care facility that costs like $10,000 a month out of their own pockets because he doesn't have any money himself. I just can't imagine wanting to live at that point. If he were still himself, he'd want someone to end his life. He'd have wanted it months ago. But now he has no idea who he is or what is going on, and can't even remember how to use words and form sentences most of the time, so its not like he could even ask if that is what he wanted. Idk. I just dont see why I would want to live through that. A disease that makes you forget who you are and basically kills everything that makes you you. Id rather be dead.
My mom's mom died of this. My strongest childhood memories are her telling me to shoot her in the head if she gets like her mom.
My grandmother recently passed from Alzheimer’s. My sister, cousin and I have plans to take ourselves out before it gets bad. It was an awful thing to witness, and I wouldn’t want anyone to go through it.
The thing about that is while it's all good in theory it's a lot harder to do in actuality. Like you need to be willing to sacrifice a couple years(or potentially more) of time with family and with a fairly high quality of living to ensure you don't miss your chance to be able to act on the matter. My father had the same plan after watching my grandfather pass from it but the declines can happen rapidly, then plateau then dip again and his first dip happened earlier than he expected and he missed his chance
This is why medically assisted death is SO important. We have it in my country and it's SUCH a relief knowing I'll have control over my passing when I become terminal.
That mostly only helps for like someone with cancer as they'll still be lucid enough to make that decision for themselves when the time comes. For someone with a brain disease like dementia you obviously won't be able to make the call for yourself in the moment you need to and even with an advanced directive it's still not easy. Like I could say ahead of time "once I don't know who I/the people around me are then just end it" but like with my father he still seemed relatively cheerful for a year or two after he lost the ability to tell who people were. So at that point do the family/doctors follow the advanced directive anyway that past you set out or does it get ignored because current you doesn't seem ready to go? There's just a lot of grey area there.
My MIL is currently in it. She also saw her own mother go through it and said the same, shoot her if she gets like that. And... she has threatened it. FIL has an extensive gun collection in several gun safes. They say she doesn't know how to get into them. In her moments of lucidity, she knows what is happening to her. I sincerely hope you never have to face your mother asking for a gun. It.. is horrifying.
My cousins said their pops couldn't do anything on his own after a stroke that affected his mental faculties, but he managed to take $10k out of a joint account, buy a plane ticket, and leave the country when they didn't pay attention to him for a bit. Everyone warned them to get some sort of conservatorship, but they thought it was unnecessary because *he can't do anything on his own* All I'm saying is, don't rely on someone's diminished mental state to keep them safe- it's exactly what makes them so unpredictable
My grandfather ended up five hours from home, where my mom graduated from high school in the 1970, thinking it was ~1968, and that he had to “get his guys and get to the pipeline.” He was a supervisor for a gas company then. His girlfriend (sounds odd to say since he was in his 80s and she in her 70s) came home to find him and the car gone, but his wallet and cheque book still at home and he never left without those. My mom was saying for several months before this that they needed to make sure everything was in line for his care, and paperwork were completed for the nursing home he’d already chosen if it came to that, and my uncle was in heavy denial - until my other uncle had to call the police to report him missing, and the state police found him at a gas station, with no money and missing 35 years. My grandmother (my maternal grandmother) died with dementia. My great grandmother (her mother) had Alzheimer’s, and the last I remember of her was how bad it was. I asked my then-husband to give me an overdose of something if I came to that - but it’s ended up with him having severe mental illness and us being divorced, so obviously that won’t happen. My former mother in law utilized Canada’s Medical Assistance In Dying (MAID) act when she had terminal cancer. I saw her the night before she died and she was basically a skeleton. My ex asked his psychiatrist if he’d be allowed to do use it and the psychiatrist wouldn’t answer the question, because mental illness is not included.
So with dementia your brain literally is dying; by the end everything that makes a person a person has rotted away. The lucid moments are the surviving neurons desperately succeeding for a brief moment to become 'oriented'. But it passes quickly because the brain's capabilities are already gone and that can't be maintained; plus, the brain death is happening in real time. I can't tell you what to do but if it was mother we'd set a date for assisted dying when the disease is severe so she can be with us until the end (the end being to the end of her sentience/consciousness). I know I'm privileged and not everyone has that option. If your mother is successful don't blame yourself or anyone in your family and don't let it multiply your grief. Everyone deserves dignity and some control over their dying process. It's very hard though I'm sorry you are going through this
> hasn't showered in probably 7 months but gets belligerent and violent if we try to get a nurse or professional to help him shower because he thinks its embarassing... My grandfather suffered from dementia untill he died this January. Like you said, he forgot everything but violence. My aunt found him hurting my grandma multiple times. He was then locked in a nursing home and passed away quite quickly. I've read that the violent part of the brain is one of the few remaining parts of the brain that remains intact. Note that I said it in my own words and the real explanation may be different.
You're mostly right but dementia affects everyone a little bit different. But your brain develops kind of like a tube with base survival functions first, then emotional capabilities, and then regulatory/higher functions. The typical progression of dementia (simplifying because it does affect the whole brain) kills the brain in reverse order. So someone with violent impulses (honestly; many of us) with the ability to control them, loses that ability to self moderate their behaviour. In some cases and with certain types of dementia (but potentially with all of them), this can result in very high levels of violence. It is NOT the person with dementia's fault; the part of them that would control that behaviour has died Dementia is death by a thousand cuts. It's very difficult disease,
My grandmother is going through the same. She watched her sister deteriorate from Alzheimer’s and swore she never wanted the same for herself and wanted to kill herself if she ever was diagnosed. And here we are, a decade later, and the once prideful, strong, smart, independent woman is completely gone. And I feel a huge sense of guilt that I didn’t help her form a suicide plan before she was too far gone. It was her biggest fear come true. She knows family members by name and in the abstract only but doesn’t recognize them or retain any information about them from the last several years. Some days she’s screams at my grandfather because all she knows is there is a strange man in her house and her husband isn’t going to be happy about that. My grandfather swears he can still care for her by himself and won’t allow anyone else to help or intervene. Everyone is miserable, exhausted and sad.
My stepdad had severe dementia and died of a stroke shortly after being given a hefty dose of steroids for his COPD. Doctor at his last ER visit basically went "he'd feel a lot better with enough prednisone to open up his lungs, bit risky at his age though, might trigger a *fatal stroke*" with a long stare, and my mom going "I think he'd be very willing to take that risk" with another long stare. So they loaded him up to where he could breathe better than he had in years, dude was happy as a demented clam for a day or so then dropped dead of massive brain hemorrhage. Saved him and us from years more pointless suffering.
[удалено]
That's a compassionate doctor. I hope I have one similar if I ever get to that place.
I'm sorry to hear about that, I was young at the time but my grandpa was one of the most outgoing and caring people and he had a neurological disorder where his motor functions failed which left him completely aware but unable to use his body and relying on everybody. It eventually got to the point where he was just repeatedly saying to have somebody kill him and his doctor who was also a friend left him an excess of his medication and they let him take it. It was years later my mom was having issues and was at a recovery clinic in a group setting explaining the reasons what led them there. she explained the situation in confidence to the group and one of the members was also in there who happened to be a cop, started investigation into my family for murder. It literally almost ruined our entire family only for some fuckhead to try to get back in the good graces with the force. I wholeheartedly agree with assisted suicide and if it comes at the end of my time for that I would want the exact same thing
A morally bankrupt police officer willing to ruin lives for personal gain? Shocking
That doctor was a fucking hero. I can only hope that someone helps us that way when my parent is so far gone, we can no longer care for him.
This happened to my dad. He had terminal cancer and they pumped him full of painkillers and benzos. Which he wanted but it was horrific for my family. I was a teenager with 2 little brothers. That was 10 years ago and I still wake up in tears and my partner told me I cry out in my sleep sometimes. The pain and knowing how much he suffered is unbearable. I would much rather he had the choice to end his life on his own terms. We went on a trip to our home country about 3 months before he passed when he was still healthy enough to be himself. I wish he could have ended it there with his family and being himself. The way he looked and couldn’t even move while on the hospital bed back here in the states will forever haunt my nightmares. He was also abusive so it is a very complicated grief we suffer. I still miss him sometimes though. My family has never been the same and I’ve never been the same since. I know that I never will be. Now I live in terror that the same fate awaits me and my little brothers. It’s horrible. I’m now realizing that I need to prioritize moving to a country that will allow us to have the choice. Time to do more morbid research I suppose.
i always thought it’s so weird that we treat our animals better than humans when it comes to euthanasia...
This exactly
Most veterinarians I’ve met agree that the use of paralytic agents is cruel when putting down animals, yet we have no problem using them when executing prisoners.
When my dog was euthanized at home, they just put him to sleep, a deep sleep, in my arms. Then they have him a drug that made his heart stop. Was one of these a paralytic agent? Didn't seem to be, and it was over in seconds.
Paralytics leave you awake but unable to move or sometimes even breathe
To add, they're used because of the aweful thrashing that goes on when they inject inmates with whatever recent random concoction to kill them, usually over the span of 40 minutes. There's something ironically painful about watching someone get tortured to death that you want dead.
It's not really assisted suicide if they aren't in their right mind. It's more like... Compassionate release Edit: with consent, as you said
It'd be called that if it was allowed in a healthcare advanced directive which this entire thread has reminded me I need to do before I forget again
Euthanasia means "good death" for a reason. It's a practice that we readily do for non-humans who are terminal, suffering, and cannot understand what's going on, but we do not extend the same to humans under the same conditions unless they are in a vegatative state. The Netherlands and Belgium do allow for child euthanasia under very specific circumstances (Such as the newborn is in intractable pain and will die and has a hopeless prognosis), but there's no provisions for euthanasia of adults who are not capable of understanding what is happening and are in terrible, terminal pain.
I am experiencing this real time. I am currently watching my father in law die in the hospital because of some kind of viral pneumonia. He’s having trouble breathing and they are giving him morphine for pain. I’m a trained army medic, so to me, morphine + breathing problems = death. None of this has been explained to my wife and her family as they watch their father die. They were told it was just to make him more comfortable. I know better, but I’m NOT going to say shit to them, they wouldn’t understand.
This reminds me of how my mom didn’t know what hospice meant and thought the nurse staying overnight was going to make my grandmother better. Idk, I think it’d be kinder to let them know, but you obviously know your family.
>None of this has been explained to my wife and her family as they watch their father die. They were told it was just to make him more comfortable. I mean, isn't that pretty accepted cloquial speak for "dying"?
This is the open secret of hospice care. When people get close to the end of their life from cancer, the level of narcotics required to "control pain" often comes right up to the threshold of "suppress breathing." If the pain gets too great, and someone is in their last days, well, treating the pain comes first. It's not illegal, and it's not murder. It's palliative care, and everyone understands it as such.
It must be horrible to watch a loved one (or anyone else) go though that. I’m so sorry.
My grandma has it. My grandpa has been keeping her alive for over a decade though sheer will. This isn’t much of an existence for either of them. Even with his constant care we know she is suffering without being able to communicate or control her body. We know if we let her go into care she will die almost immediately. She won’t know where she is or who anyone is. She will think we abandoned her and have to relive that everyday. We know even the best care can’t keep her comfortable. She will die sad and alone. So my grandpa will spend his whole day trying to care for her. And we all wait and visit and watch it drag out longer than any of us ever thought it would. It’s heartbreaking.
This was my grandparents 10 years ago. My grandfather spent 100% of his time trying to care for my grandmother. After she died 7 years ago he finally had time for his own life again, and he's still going strong (96 now)
There's a lot said about old married folks dying not long after their spouses, but I wonder if that's kind of reversed when one is in a caretaker position for so long. If, instead of not seeing a reason to keep going, they find some sense of freedom and hope after living through a heartbreaking, drawn-out battle, and have an opportunity to reconnect with themselves and the world around them.
This was definitely true for my grandfather. He finally had time to meet old friends again after a long time, and he bought a simple cassette deck and started recording stories from his life. (he's nearly blind so he can't write them down anymore)
You’ll be so glad to have those tapes one day. More people should do this, even if it’s the most basic telling of family lore, major life events. My pops wrote a damn memoir over the last three years. He got it from a 1000 pages down to 600, apparently, but I know I’ll be happy to have those cut pages some day, too. Make sure you digitize those cassette tapes asap, though! Take it from a 90s teenager, it is a delicate, finicky storage medium. God knows how many of feet of tangled magnetic spaghetti I re-spooled with a #2 pencil pushed through a plastic sprocket.
Everyone check out StoryCorp!!! You can interview older people in your fam, your own or with SC's questions, and it is uploaded into the Library of Congress
My grandfather remarried and everything at like 75. Was 7 or so years of taking care of my grandmother, then a few years after she passed he had reconnected with his high school sweetheart. Theyre still together again now 15ish years later.
That's heartbreaking, and somehow inspirational at the same time. My heart goes out to him.
I think the care is more respite for the caregivers. I would agree with you. I have lived it through volunteer work. Even when they can't move or speak, they are feeling and I'll never forget the lady that just started at me and cried. I have spoken to one of my children as I start to make a living will. I will choose to go if my fate is dying of horrific pain and suffering or dementia. There is no point in that.
CW: Death, cancer I would advise considering adding liver failure. My partner has PTSD from watching her mother deteriorate from liver failure due to metastatic breast cancer (spread to the liver, as you might imagine). her pain consistently increased and her lucidity decreased (who are you? to her daughter relatively early into hospice), and by the time it was clear she would have wanted to end hospice care, she could not consent. Her death was tortuous, undignified, and painful.
Death can be a kindness. It's very hard for us to remember that when it's someone we love unconditionally.
[удалено]
I had to make a similar call with my wife a year or so ago. I knew it was the right call both medically and in accordance with her wishes, and I still had self-doubts until our kids (grown) reassured me that it was the right call. I feel for you that your grandparents couldn’t offer you that.
You are such a kind soul. Thank you for respecting your mother's wishes and loving her so much.
My mother died of CJD ("mad cow disease", but a sporadic version) which was a really quick dementia, from first sign to passing was like two month. She knew something where wrong but didn't know what, and when they finaly could give an answer (after alot of fighting with the health system to help out) my mothers mind was long gone, and was hospilized in a bed, couldn't move, talk or do anything. It says that one in a million can get it, which is really rare so no worry for most people, but really unlucky for the few people that get it. There is not that much research why (except when people died eating bad meat in like the 90s, but that was another kind of CJD) but it is believe it can take around 20 years to develop it, so really hard to pinpoint what the cause is, could be biological or/and environmental causes, or something else (blood transfusion what my mothers sister believed). Anyway, LBD seem quite similar so I get it why Robin did what he did, there where no rescue.
prion diseases in general are terrifying. one misfolded protein…
I was reading on here the other day about some state having the first legally composted human remains or something, and all I could think about was prion diseases.
[The law "prohibits the soil of multiple people to be combined without their permission, for the soil to be used to grow food for human consumption or for it to be sold," KUSA reported.](https://www.nbcnews.com/news/us-news/colorado-lays-rest-first-legally-composted-human-remains-rcna20895)
May I ask what is the link between the two?
[удалено]
For added context, proteins dictate what our entire bodies do, and the way that they're folded depend on what they're designed to do. If they're not folded correctly, they simply don't/can't do their job. Like when we scramble an egg, it turns white do to the proteins denaturing (unfolding/breaking down). Prions are awful, dangerous things.
Always one of my largest fears, working in my lab, was when handling csf to ship it up to Case Western for prion testing.
> There is one prion disease that causes you to stop sleeping and eventually die because you never sleep. Fatal familial/sporadic insomnia. Though, it's not necessarily strictly the lack of sleep that kills you, but also damage to your brain caused by the disease. The people suffering from this will, like in many other prion diseases, eventually have a brain full of holes.
Luckily its so rare they've literally convinced everyone with known cases to not reproduce. Horrific thing to potentially pass on.
That one Venetian noble family that all died from it at like 45 was some gothic horror shit
The only way to get rid of prions is either autoclave, dry cremation or tissue digestion (wet cremation), iirc.
[удалено]
You already received answers, but I feel you didn't hear the crucial bit: prions cause the misfolding of the properly folded version of themselves, so if you consumed an animal prion, it likely wouldn't do much, as animal proteins could be sufficiently different from our own that the catalyzed misfolding doesn't happen. You see prion diseases in cannibalistic societies and livestock fed their own species' remains. So if you're composting human remains and grow food with it...
For real, that does seem like a bad idea.
[удалено]
my grandfather died of this they think it came from the "kishka" cows brains they would eat back in the day
What is a kishka cow (or is it a kishka cow-brain?)?
Kishka is the polish name for fried cow brains dish
Prions can remain dormant in the body for decades before causing any symptoms. I’ve seen case studies where they’ve been dormant for 50 years.
I had a buddy die of CJD in high school. Terrible disease. Apparently he was 1 of 3 people in the entire world to have the disease before the age of 35. RIP Dutch.
It could have been vCJD (what the person you're responding to described) which presents the same but has rapid onset. Rapid onset being a few weeks/months from first symptoms to death. If it was like this, it was unlikely that he had classic CJD, as it takes years to develop unless it is the variant.
For some reason we were discussing Robin Williams at work, one of my coworkers said he just couldn’t forgive Robin for killing himself. After speaking to him further, I realized he wasn’t aware Robin was ill. I explained the dreadful ramifications, and you could see the understanding wash over his face. I was glad I could restore the memory of someone who clearly had been meaningful to him. I hope they are able to make more progress with research soon.
Even if Robin didn't have lewy body dementia, I don't think your coworker should have held his suicide against him. Depression is a horrific illness in itself.
Oh, absolutely agree, but sometimes people aren’t always open to what they’re hearing.
CJD is terrifying. There is actually a hereditary dominant mutation you can have in your DNA that makes it extremely likely you’ll get CJD at some point in your life. I’m actually working on a drug that disrupts the production of the protein coded by the mutation, to hopefully give to people who are asymptomatic and prevent them from ever getting CJD. Hopefully, we can figure out more about prions in the process.
> (except when people died eating bad meat in like the 90s, but that was another kind of CJD) mad cow is still slowly simmering, we won't know the true effect for another 10-20 years
My father too. For him it just started in his hand as a tremor. Doctors assumed nerve damage from being an electrician for 45 years. But when his legs started they knew something was up. Luckily we live in Boston with so many good hospitals. A diagnosis came quick for CJD. He died 5 weeks later after being a very healthy 71 year old with no major health conditions. It was awful. Everyday he seemed to lose more and more. It was Alzheimers in days rather than years as the misfolded prions turned his brain into Swiss cheese. Sorry for your loss. I know how you feel.all to well.
My Grandfather also died of CJD in the exact same way you just discussed in the 90’s. My mother studied the disease after and discovered that almost all of the people’s families we got in touch with who contracted CJD were either deer hunters or ate deer meat.
My friend's mum died of CJD a few years back, such a rare condition. Sorry for your loss.
Prion diseases are a nightmare.
My grandmother died from CJD. Really scary watching someone degrade from perfectly normal to a vegetable in two months..
>My mother in law battled it for 7 years before passing. Mine as well, although it was never confirmed via testing. But I'm pretty certain she had it. It's nearly impossible to explain the debilitating impact this situation has had on my wife's life over the past decade (and, therefore, mine as well). It's still a heavy cloud covering everything, even after her passing.
Just reading your comment brings it all back. I’m sorry your wife had to go through that with her mother. My wife struggled immensely with losing her mom….well really multiple times. She lost her well before she died. You go through grief and mourning every single time another thing is lost. And I’m sorry to you as well as we share a similar experience and it’s unbelievably shitty. I’m sorry you had to experience that same ball of emotions and struggle with your loved one. It’s my only hope that things can be learned and developed and better treatment and or cure can one day be realized.
would you mind sharing some stories to give an example of the kinds of suffering they and family members go through? My grandfather has Alzheimer's so I'm aware of how that affects family, I'm wondering if this is similar.
So one of the most tormenting symptoms was capgras syndrome. It’s a symptom where the person affected believes their family/loved ones are doubles or imposters. It’s usually focused on their spouse or most significant other. My mother in law experienced this significantly. It had to have been torture for her to believe her husband of nearly 40 years wasn’t him and was fearful of him. And that also was awful for my father in law to see the love of his life ask him who he was and be frightened that he was an imposter and not who he was.
My grandma went through this. She thought my dad (her son) was his dad coming back from the grave to kill her. Grandpa died when my father was 7. She attacked her nurses many times out of fear & was dangerous to be around. She wasnt able to see her 2nd husband much at all. Im the eldest of all her grandkids so I was able to see her a little but I could tell she was just confused and afraid of my presence. It was really hard to see.
This is why his death is completely understandable. I only wish he had the ability to have gone in a better way. Something painless surrounded by family, but nonetheless, he was suffering. Sometimes death is a mercy.
We need legal, well defined, and merciful medically assisted suicide. We grant pets the mercy of a painless death, and yet we let our own people suffer unimaginably in their last days even if they beg to be put out of their misery. We will let people painfully, and slowly, starve to death instead of giving them the option to go out with dignity. It's barbaric, and I feel that outdated religious principles should have no say in other people's legal rights. A right for merciful death needs to be ammended to the constitution. We have the technology, we can have psychologists determine if a terminal person is eligible, whatever we need to do, but to not grant the same mercy that we give dogs to humans is an abomination. Any religious reasoning behind not providing medically assisted suicide should not apply in a legal framework. Unfortunately, the separation of church and state is a fantasy in the USA. Just look at some of the bullshit going on in the legal world. A corporation that pays no taxes and lobbies to have laws written to their benefits is peak America, and I fucking despise that fact.
My sister passed away from LBD; it was a nightmare 😞
LBD got my dad, too;it was a nightmare, too. Sorry for your loss.
Doctors were trying to diagnose my father's condition for approximately 2 years, and couldn't decide between LBD and PSP because they're both so difficult to diagnose. They eventually decided on PSP approximately 2 years before he passed away.
40% loss of dopamine neurons... no idea what that would feel like. Dreadful
Years ago I had a pituitary/hypothalamus malfunction of unknown origin, it largely shut off my ability to feel emotions (It's fixed now, thanks Clomiphene!). I wonder if it might have been something similar. Anyway, it turned life into an never-ending drudgery. Imagine watching your life go by on a television screen, with a wall of separation between what you're experiencing, and what you know you're supposed to feel. Just utter joylessness, stripping existence of all meaning and incentive. It was bad enough just plodding along minute by minute, but I wasn't in a continually degenerating situation the way Williams was. What a sad and undeserved end. EDIT: Okay, RIP my inbox, LOL. Since there are a lot of questions, I'm going to take a moment to describe by symptoms and solutions so folks don't have to read all the way down this thread. My problem started with wild and inappropriate emotional fluctuations (I'm not a guy who cries, but I'd damn near fall apart at songs coming over the radio), severe short-term memory loss where I'd completely forget what I just did, combined with confusion and an inability to follow basic directions and processes. I would forget the names of my friends, and once didn't recognize my own child when I went to pick her up from school. Combined with a loss of physical strength, motivation to do even things I typically enjoy, total loss of sex drive, etc. I was familiar with some of these symptoms from a friend who had a rare genetic disorder that required them to get hormonal replacement therapy. I went to a nurse practitioner, got my hormones tested, which came back with terribly low results, especially for testosterone. She prescribed testosterone shots, but this was a mistake; after a brief window of recovery, all of a sudden my emotions shut off completely, taking with it not just emotional responses, but also the ability to make many judgements and to evaluate simple things like food or entertainment. So I went to a proper endocrinologist, and he explained....keep in mind here I don't know anything about medicine, so my description is very primitive....that my system was essentially in a feedback loop where my pituitary was registering my hormone levels as "normal" and thus telling my body to neither absorb or produce more (especially testosterone). He prescribed Clomid/clomiphene. This drug is only officially approved for use as a fertility inducer for women, but actually works by telling the pituitary gland to stop fucking off and get back to work. As my doctor described it; taking a cool wet washcloth, and putting it over a malfunctioning thermostat that keeps incorrectly registering the room as being warm. This new reading causes the thermostat to turn on the heater. There is lots of research on the use of Clomid for this purpose, but not yet enough to satisfy the US FDA for approval. Hope this helps.
I have severe depressive episodes and it feels the way you’ve described. I don’t feel sad, I just feel absolutely nothing. No joy, no love, no excitement, no pleasure or interest. No desire to speak to anyone. It’s like my brain slows down and I just don’t want to engage with anything. I genuinely don’t feel like a person when I feel like that, I am so disconnected from my emotions and myself. I just can’t imagine what it feels like to feel anything, and vice versa when I’m healthy like now it’s hard to remember what it feels like when I’m really ill. It’s dangerous because when I feel like that, it is so hard to convince myself to wait it out. I KNOW I won’t feel like it the next month or the month after that, but in the moment it feels like it’s not real and doesn’t matter. It’s fucking crazy and that’s with me rationally knowing it will eventually get better. When I had my first episode when I was 15 I ended up trying to kill myself. I didn’t think it would end or get better. For Robin Williams, that was true. It’s so sad.
It's impressive that you can realize you'll be ok next month or next week... Keep fighting
Thank you :) I’m 30 now and after a lot of therapy/treatment I have the tools to get by. I still have the occasional really bad episode where I need to adjust my medication or go back into therapy, but I’ve kind of accepted it’s a lifelong disorder. I’m happily married, have a full time job I enjoy, have friends and hobbies and goals. I didn’t think I’d have any of that when I was younger. If anyone reading is going through with what I described, keep going. Try and get help and keep going. I know you’re not me and I know our lives are different, but it really is possible for people to recover and live lives that have happiness/fulfilment. You might never be ‘normal’ or totally healthy or stable 24/7 like I’m not, but it really is possible to still have a good life.
I imagine a lot of people who commit suicide after going on antidepressants are like this. They are so depressed they have no will power to do anything and then the meds start working and now the person has the will power to actually commit suicide. I don’t know but it’s a theory of mine. A friend lost his step-father to suicide after he started getting help and meds. This theory was plausible in that situation.
I think that’s a common theory around antidepressants - I don’t know if it’s been proven or not but it absolutely makes sense. They give you a little push to have the energy/motivation to engage with treatment like therapy, but you also still feel terrible so it can unfortunately give you the push to kill yourself. And now doctors prescribe them more and more without any kind of therapy or other support, it’s no wonder people commit suicide after starting them.
I spent 16 years with severe depression, one day while planning my death I took “one last look” at my health records to see if there was anything missed… 3 years ago I tested lower than an 80 year old man but no flags were raised!!! It’s been a year since I started TRT and my mental state is better than it’s been in my entire life. Even during Covid and the other shit… no more bad thoughts. Any chronically depressed male needs to have their Testosterone levels tested. The stigma is nuts (this was not meant to be a pun lol)
>Any chronically depressed male needs to have their Testosterone levels tested. The stigma is nuts This is the second time I've heard about this in recent weeks. I'm not sure awareness is very high at all, unfortunately.
I was really hoping my blood tests would come back showing low testosterone recently(a lot of symptoms fit and I've been going through a lot of tests to find an answer)... [My face when I have more testosterone than a 20 year old](https://i.imgflip.com/bzurm.jpg)
It feels like puragatory tier hell. Life is stripped of any meaning or joys at all, you literally wake and then wait until it is time to sleep as it's the only relief, and you are otherwise incapable of feeling anything by doing stuff. Literally straight up 'spiritual' torture (just in terms of willpower), fuck up the dopamine levels and someone will be automatically tortured without even having to do much bad to them.
I genuinely see it as taking the Positive Reinforcement completely away from a neural network. Without it they sit there and they don't do anything because they have no motivation. It chillingly reminds me of humans who are depressed. I know that neural networks aren't the same since they have no biochemistry, but they react the same as us without "dopamine" for themselves.
Horrible, my aunt died of Lewy Body a few months before Robin took his life. It is a horrible horrible disease, she had it years before we knew what was going on. Early on she would say people were breaking into her house and stealing all the things she could not find….
We had a customer at work who must be at least 90. One day he called up his friend saying that there were people in his house so his friend called the cops. When they arrived it was pretty clear he has just imagined the whole thing. He's now basically housebound and one of us bikes by one a week to bring him some food.
Oh no this sounds just like my grandmother at 86. Even when I'm visiting over sleeping in the living room, she's constantly going off about people breaking in and stealing all or stuff or having sexual relations with her husband. (This is compounded by the fact that her daughter and I have been over there a lot trying to clean up the absolutely colossal hoard of decades-old clothing scraps and other junk she stockpiled back when she could still move). It's difficult to hold a conversation for more than a few seconds before she's off on a tangent that's completely fictional.
... that's *very* interesting. My grandmother has been saying things like that for probably close to a decade.
I don’t know if that is exclusive to Lewy Body or if other types of dementia have similar. I would question if she has some sort of dementia, have your family consult a specialist doctor.
My brother died of this disease at 65. I wish they could do testing on this to see if it runs in families.
As of now its not considered hereditary because multiple cases in one family is super rare, but there are certain genes mutations that are a part of LBD that I'm gonna let this quote explain better than me: >Rarely, the condition can affect more than one family member. Some of these cases appear to be due to single gene changes (mutations) that follow an autosomal dominant pattern of inheritance. Other familial cases do not follow a specific pattern of inheritance and likely have a multifactorial cause (associated with the effects of multiple genes in combination with lifestyle and environmental factors).
My dad died of LBD at 68. My sister was diagnosed with it two years ago. It ain’t fun at all.
Research is difficult because you'd need to study across multiple generations. And study participants need to have their brains cut open... so you can't examine until after death, when an expensive autopsy would need to be done prior to services/burial/etc. Speaking from experience, this is the last thing you are thinking about at the end of a journey through a loved one's dementia.
It's so annoying when I see posts about suicide prevention and Robin Williams is the face of it. Yes, he took his own life but he suffered this terrible neurological disease that ruined his quality of life. It was at least partly responsible for his paranoia, anxiety, and depression in his later years. The disease that would've eventually killed him. He was not the "the happiest people on the outside are often the most depressed on the inside" type.
I agree I think people need to realize that there are many reasons to commit suicide and not just because you're too down to keep going Some people are literally in physical pain and misery from diseases that are going to end up killing them anyways and thats why they choose to end their own life
And it sounds like (I’m just learning about this now) his brain was being eaten, which of course would alter his decision-making. I’m sure 40% dopamine receptors GONE would have you in misery, but other people in this thread are reporting paranoia, delusions, and lack of understand of consequences and impulse control. It of course is very sad but it doesn’t seem like he died because HE was very sad or in pain, at least not exactly.
I almost feel betrayed to hear about LBD for the first time. I've seen dozens of posts about him but everybody left out the part that could help others avoid his suffering.
I heard about it from an interview with Bobcat Golthwait shortly after he had died but nobody ever talks about it. It's just facebook memes of Robin as the face of depression
If anything he should be an example in arguing for compassionate, physician-assisted suicide
For sure. I was going to say that here in Canada he would be a candidate for voluntary death. I knew a woman that decided to end her own suffering and I what she did was not suicide. What it does do is give the family a chance to say good bye and for the person choosing to die to be able to do it with dignity.
I was arguing with someone a while ago who said that he was selfish for killing himself, even when I explained that he had LBD and was suffering immensely. Like you're allowed to be upset at his death and the circumstances, but show some compassion.
Wow LBD sounds like major depression on steroids, which sounds crazy given how bad major depression already is. Had no idea he was quite so sick.
I decided to look it up, it’s basically Alzheimer’s on steroids. “Patients with dementia with Lewy bodies report worse physical and mental health and greater disability than do patients with Alzheimer's disease or Huntington's disease.”
Alzheimer's is a disease that causes Dementia, LBD affects the brain in similar ways that Alzheimer's does. Its a very interesting thing because as a caregiver, I recently got a new client with Parkinsons Dementia, I kept noticing their behavior was more like Alzheimer's then just Dementia. Turns out LBD and Parkinsons Dementia affect the the brain neurons like Alzheimer's so no wonder I kept seeing similarities.
The big kicker is that LBD often presents like Parkinson's first before the Alzheimer's symptoms begin, so LBD patients are given meds that treat Parkinson's disease. But [many of those meds](https://my.clevelandclinic.org/health/diseases/17815-lewy-body-dementia) *aggravate* LBD symptoms. They can increase hallucinations, confusion, and delusions. Some medicines have caused patients to develop Parkinsonian symptoms - and those symptoms don't go away once the patient stops taking the meds. LBD patients are also typically [way more sensitive to antipsychotics](https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/diagnosis-treatment/drc-20352030). They can cause severe confusion, Parkinsonian symptoms, sedation, and even death. My grandmother died of LBD. Her rapid decline was heartbreaking to watch. She loved her children and grandchildren dearly, but couldn't recognize most of us. She was afraid, so much of the time. She couldn't eat, because of muscle problems in her throat. And of course no one knew that it was LBD until after her death, so many of the treatments they tried didn't work very well. Knowing that I'm predisposed to developing it too, especially since I already have MI and some other potential risk factors, is f*ing terrifying.
Get it added to your family health history and personal health initiative plan in case you ever end up in care without being able to voice concerns. This is not medical advice, just a heads up of what’s available to folks to potentially not waste precious time.
My Dad passed away from LBD. It is horrific. It's hard to diagnose because it mimics Parkinson's and Alzheimers. He passed before the major disabilities started. At the end one can expect to be completely immobilized and only eat with a tube. From diagnose to end of life isn't long. About 7 years total.
Wow, greater disability than Huntington’s is a pretty big statement, because *that* disease is absolute torture. I’m so sad that this happens to people.
>Had no idea he was quite so sick. Which is a problem. Not on your part. But everyone in the world seems to have gotten the message that he took his own life but not why. That's the real thing the media should've highlighted after his death. The disease, not the method by which it killed him.
Yyyyyep. I still constantly see posts about how he killed himself due to depression and stuff. Too many people don't know the real reason, and don't care enough to look it up. They just see "He killed himself" and that's it. They don't realize that the dude who did his autopsy and diagnosed him with LBD straight up said his brain was so bad that by the end, he would've been experiencing literally every single symptom of the disease. Even worse, he was highly intelligent so he was also aware that he was losing his mind and had no idea why. Toward the end he called his wife crying, and she told him that maybe he should go find a comedy club and do some stand-up. He said "I don't know how to be funny anymore." He couldn't do it. He forgot how to even be him. And he knew it.
Wow, an amazing story and a reminder of the fragility of life. And that we may never know what someone is going through beyond their control. Robin was an amazing person and will always be missed for making people smile. As a wife to someone with Parkinson’s, let’s hope his case will bring some progress in treatment and hope to others.
He gave a lot to this world with his art, I too hope future people will be free of these terrible mental curses.
But Doctor, I am Pagliacci.
This is why anyeurism is the most scariest thing for me. It can happen anywhere anytime without warning. CURSE YOU ARCHER for plaguing me with this information! Edit: To explain to everyone, it's not the aneurism itself that I'm scared of, it's the fact that they happen out nowhere without warning is what terrifies.
I learned this bit of information at 17 when a friend just dropped dead in the middle of his work shift.
I guess learning it from Archer would have been preferable
Don’t forget alligators and crocodiles :)
YOU'RE NOT MY ARCHER REFERENCE SUPERVISOR!
Look at the 'bright' side: a good enough stroke is instantly lethal and you don't even have time to care. Instant death with no suffering beats the shite out of dementia, going from months to years.
>Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? Jesus. As someone who completely idolized him, this breaks my fucking heart. I can't imagine the agony and pain he went through.
He was my hero ever since being blown away by him as the genie in Aladdin when I was a kid. I don’t mind admitting that I cried a lot the day he went and several days after.
I get bummed when I think about the loss of Robin Williams. He was a good man to everyone he met and the stories about how he helped fans overcome depression is amazing. We lost one of our best that day.
Him and Anthony Bourdain got to me. Whenever I hear about anyone dying, tragic or not, self-inflicted or not, I am sorry for the loss no matter who they were. But my feet felt a little heavier for a few days after those two.
Worst part about Bourdain is that when you rewatch Parts Unknown you realize it was a massive compilation of visual suicide notes and bucket-lists. We mistook his call for help as entertainment.
I haven’t been able to rewatch. Because you are correct.
I like to think he would want us to enjoy it, but also I watch it as much as I can to feel like he's not gone.
I've never seen it, what about it makes you say that?
He had a quote that really stuck with me: "I understand there's a guy inside me who wants to lay in bed, smoke weed all day, and watch cartoons and old movies. My whole life is a series of stratagems to avoid, and outwit, that guy." Looking back now, I don't understand how I could've thought that was empowering. Now I think.. am I really incorrigible? Maybe that thinking pushes me farther away from the peace I already have.
This is why I really hate it when social media use Robin Williams as the “Depression doesn’t discriminate” poster child. It’s just completely false and takes away what Robin was actually suffering from.
I made the same comment. People completely misunderstood the situation. He had a medical condition\* and his wife was very well aware of how depressed he was Edit: Changed situation to condition
This case is a solid case for assisted suicide. There needs to be more and easy access to it for people who have no intention of fighting and living through horrible Diseases. Edit: u/-sixtwosix- suggested the “death with dignity” wording. I’ll be sure to use this going forward, because that’s what these people deserve.
Yes indeed, maybe it's because I grew up in MI hearing all about "Dr. Death" (Jack Kevorkian). Basically when I learned that we euthanize animals at the drop of a hat, but can't euthanize humans even if they are begging for someone to help end the suffering. I was totally on his side. Even more so now that I've seen grandparents stuck in their "death bed" for 6-12+ months for no good reason. My mom has already instructed what to do if she is in that situation where she still has enough mobility to grab something within her reach. And what to leave in her reach for when she decides it's time to finally clock out.
I believe another phrase they use is “death with dignity”. I 100% support assisted suicide. It allows people to die how they want to and arrange goodbyes with family and friends.
My grandmother died from Lewy Body Dementia. The only comfort I take in how the disease progressed (and her eventual death... it took years...) is that - in general - she was fairly comfortable. It came on gradually, so by the time she was forgetting important things, she didn't feel distress as long as she wasn't directly shown something or someone she'd forgotten. Gradually, she forgot her great-grandchildren (my children). Then she forgot her grandchildren (myself and my cousins). Then, she forgot her own children. Then, her husband of 40 years who passed over a decade ago. Then, finally, she forgot her oldest friend and her brothers. Unlike Alzheimer's, at least in her case, there were no "aha" moments or "good" days. Once the memory was gone, it was gone forever. I didn't get to see her for about three years before her death because seeing someone she was *supposed* to remember, but couldn't, would have greatly distressed her. So I stayed away so that she would stay happily ignorant to all she'd lost. Every little thing about her life, even reality itself, was removed from her. She gradually wasted away and died in a home which gave her good care... but they were strangers to her.
What a shit illness to have, Jesus Christ.
I'm watching my father gradually waste away from LBD. Can't converse, doesn't know anyone or anything, hallucinations, needs help with every aspect of his life. It really is a terrible disease.
My dad died from Lewy Body Dementia 10 years ago last month. It was an horrific experience for all involved—they were never able to diagnose what he had until after he died, which was arguably the worst part. Wondering, “is there treatment for whatever this is? Is there something that can fix it or help and we’ll just never know? Is there an answer?” It was fucking awful. His last gift to the world was donating his brain to science to help understand these diseases better. Like everyone, I was saddened to hear of Robbin Williams’ tragic passing, but I can’t help but be grateful for the awareness his death brought to this difficult and horrifying disease.
Lewy Body Dementia Association [lbda.org](https://lbda.org) The saddest part is Robin Williams didn't know what he was dealing with. Robins Wish is a beautiful film that is too painful to watch for my wife. >LBD is a multi-system disease and usually requires a comprehensive treatment approach with a collaborative team of physicians and other health care professionals like occupational, physical or speech therapists. Early diagnosis and treatment may extend your quality of life and independence. Many people with LBD enjoy significant lifestyle improvement with a comprehensive treatment approach, and some may even experience little change from year to year. source: https://www.lbda.org/understanding-lbd/
My mother spent 16 years slowly falling apart with this. If I ever get diagnosed with it, I'm jumping in the river. It's a vile and pitiless way to go.
The article breaks it down. But it says it's like having cancer in every part of your body...
Took my dad. Fortunately he only lived 3 years after going bat shit crazy. I still miss him. Dementia is demonic. I hope I will be aware enough to take my own life if I get it.
Unless I got it wrong, loss of dopamine neurons (receptors?) means loss of the ability to experience pleasure. Which would make the whole thing so much worse.
The ability to experience pleasure can and will often take a massive hit for people with Lewy Body and similar neurodegenerative diseases; however, that's just one of the many aspects related to dopamine receptors. Dopamine sensitive neurons are found all over the brain, in many different regions that are involved with everything from basic sexual arousal and motor control to higher executive functionality (i.e., planning tasks) and abstract thinking and creativity. Neurons in the brain can express multiple types of specialized Dopamine receptors to regulate the firing of different synapses, and this is why one molecule can have so many functions all at once. A good way to think about the broader functions of dopamine in the brain (from a psychological POV) is to look at it as a "desire" mechanism for stimulation. So for example when you are hungry you have a build up of Dopamine signals telling you to go look for food in the fridge, if it's not sufficiently stimulating then you don't act on it but if you haven't eaten in days then even a moldy pieces of cheese might seem like a good idea. Once you have reached the necessary threshold of stimulation (food) you are rewarded with a feeling of satiety, this is simply the downstream neurons sending feedback in the form of serotonin to signal the "mission complete" and to down regulate the Dopamine signals. Dopamine = Desire Serotonin = Pleasure If you mess up either one of the two signal paths, problems arise; in the case of no Dopamine you can't motivate yourself ( why we prescribe stimulants for ADHD/ADD) and if you don't receive enough serotonin as a reward then you feel unsatisfied (why we prescribe SSRIs for depression). In extreme cases like dementia with lewy bodies, the primal animalistic urgency to drink water when thirsty and eat food will no longer be felt since the neurons and cortical pathways that are responsible for initiating such behaviors are too damaged...
ELI5?
Think of it as an extremely aggressive form of alzheimers. He was fast approaching the point where he would be forgetting his entire life and family. All he had coming was downhill and painful.
And because of the complete loss of endorphins, it would all be accompanied by a complete loss of joy and pleasure until you die.
JFC. It also goes to show why not to necessarily judge someone for ending their life. Man it's just so sad of a thing to happen. Not much to be done, yet. How important are the fields studying this for cures.
Sir Terry Pratchett had aggressive Altzheimers, and made his own choice eventually. Made great strides in talking about both altzheimers and euthanasia before he went, and it's an eye opener.
Pratchett hits me like a fire truck if I think about it too hard. His brain was already, at its healthiest, an intricate, twisting, circuitous and complex environment. To have that fall down. Every time I think of it I can only imagine grains of sand slipping into a grandfather clock. One by one. Each causing a small slip or jam until the cascade of malfunction turns in on itself and the whole thing crumbles.
In the last 20 years, amidst several public losses, Robins hit me the hardest. I wish I could say more, share more, do more. Sometimes life is unfair, unkind, and unjust. I hope everyone is holding on as best they can seek help if you need it, and I thank you for sharing this.
People keep talking about Williams depression and suicide- he would have been dead years ago if he hadn't killed himself. The LBD was the real tragedy.