60 replies
1d3h
My biggest fear. The nightmares I had for years after reading. They returned, years later, when observing Alzheimer's from up close, in family members. No way out, no cure. Memory, reasoning capabilities, character, everything that makes you yourself decline, disappear; you're still breathing, but you're more dead day after day. And then, when you stop being aware of all that... does it make it better? or worse? I don't want to imagine this.
Two follow-ups: "Rainbows End" by V. Vinge. Maybe there'll be a cure. Or "Choosing to Die" by Terry Pratchett. Maybe there's no cure and there won't be. At least, you can decide to go on your own terms, as a person still, not a vegetable yet.
I'm of the belief that in such a situation, a pre-cognitive decline "living will" or dead man switch is appropriate.
If I were diagnosed with dementia, I'd build automation to ensure that I'd appear to die a natural death when I enter the steep slope of cognitive decline. It's as easy as tying the results of frequent cognitive tests into a moving average that triggers my medication dispenser to start mixing in a toxin and or substituting key medication that keeps me alive with a sugar pill. These days, without the right medication, I'd be dead from "natural causes" in a week.
I have an assisted-suicide packt with my wife, that is probably the easiest solution.
For sure, if you can trust your partner to assist you with this, and if you can guarantee that your partner will not face legal consequences, this would be a great option.
Dementia poses a legal wrinkle, in that in many jurisdictions, assisted suicide requires consent at the time of the procedure. In many states in the US, especially in the south, assisted suicide is a boogeyman that runs against prevalent religious beliefs. In this case, someone with diminished capacity may be seen as unable to give consent, which could land the assistant in legal trouble.
This is why I like the idea of automation that acts on objective measures, with fail safes in place. Likewise, if after "doing the deed", the system erases itself and the firmware on the pill dispenser is glitched out, then the whole thing can look like an accident. A letter can be sent ahead of time to the family attorney, only to be opened under suspicion of foul play, which can clear up any potential investigatory wrinkles if law enforcement gets involved.
I'm fairly certain in the US you cannot legally consent to being killed.
Wikipedia has a map - https://en.wikipedia.org/wiki/Assisted_suicide_in_the_United...
It depends on the jurisdiction. A half dozen states now permit assisted suicide in the case of terminal illness.
There's also an interesting bit of case law and state statutes that deals with "drug cocktails", which when combined, will lead to death. A physician can prescribe these in certain places without getting in trouble if certain criteria have been met.
Either way, where this is legal, it requires that the person be of the capacity to consent, which someone with dementia cannot do.
Not true. I helped my mother fulfill her wishes, and faced no prosecution. My lawyer helped.
You appear to me to be the type who never writes any bugs in their code.
Or, someone who would thoroughly test such a system and formally verify it long before use, as it would literally be a life or death thing...
Oh right we'll just "formally verify it," all good then!
It works on my brain
What's closer to "bug-free" (here, inside the cave) than formally verified software running on verified hardware in a distributed[1] system?
[1] Because "you can't type-check being hit by lightning"...
That's fine in theory, but the problem is that many, possibly most, Alzheimer's patients report that they are happy and don't want to die, even well into severe cases. Whose preference should get priority, past you or present you? Maybe the internal experience of severe Alzheimer's isn't as bad as you are imagining, but if your living will is ironclad, by the time you realize that you'd have no way to signal it, and so you just get murdered.
The consciousness living in my body at that point may very well be happy, but that consciousness would not be me. I'd be gone, except perhaps in rare instances of lucidity.
Sure, there is a Ship of Theseus argument to be had here, but I am very much opposed to being a burden on my loved ones, and if nothing were to change with my mind, that opposition would remain. I've seen first-hand the suffering that Alzheimer's inflicts on loved ones, and that's not something I would EVER consent to while in my right mind. The very idea horrifies me.
That the alien consciousness that would be inhabiting my body at that point doesn't want to die, and holds a few of my memories, is of little consequence to me. Even if this experience is pleasant, at that point, it's not my experience -- what little of "me" is left to experience it -- that I care about.
If the old you is already dead - why should it get to decide whether or not to kill the new one, which wants to go on living.
It's not about me, it's about the trauma that my husk causes to loved ones.
I'm a firm believer in euthanasia. I should get the choice while I am able to make that choice. If future me had the capacity to choose, future me would choose the same.
I’ve observed Alzheimer’s take away memories, dignity, and personality from multiple loved ones.
I’m unsure whether it’s worse for the affected individual or the loved ones around them. That uncertainty leads me to the same conclusion as you.
COVID brain fog gave me some perspective around the recognition that one’s brain is inexplicably not working as expected. Existing in that state of frustration for years is nightmarish.
Having ADHD I've often wondered how I could even do a deadman switch. I'd eventually forget to renew it when I was otherwise perfectly fine.
There was something I was supposed to do today.. huh. Must not have been important.
<< KILLBOT ACTIVATING >>
oh no
Gosh, this made me laugh out loud. Thanks XD
It really has to be part of the routine, and there needs to be automated nagging in place to ensure that it goes off due to programmed conditions, and not due to neglect.
I think this is especially important in cases of dementia. Daily routines will become one of the last things to go, as long as there is good nagware in place to keep you in line.
I use nagware to remind me to take my medication, do my Duolingo practice, do my nightly checkins to GitHub, feed the various critters that don't or won't remind me themselves, and do my various work rituals. Weekly, monthly, and annual reminders (doctor appointments and birthdays) are also important.
How would you do it if you didn't take any medication? The most medication I've ever needed to take is an aspirin once or twice a year. I'm trying to think what other method I could use in place of substituting mediation.
Well, I would strongly advocate that such a system be used only after a diagnosis, at which point, you would be placed on medications to slow the progression. At that point, this would be seen as a rather innocuous thing by family members, since it's a machine meant to help you to remember to take medication that you need to help with your dementia.
I have considered other machines -- again, as a theoretical exercise -- but ultimately, my decision process was that it had to maintain the plausible deniability to family members that I just died of natural causes. Allowing family to believe that I opted out because I felt that I was a burden would certainly lead to trauma beyond death from natural causes or an accident.
I'm a strong believer in having the power of euthanasia. Part of the reason why dementia frightens me is because it would strip me of this agency. I currently suffer from heart failure, and dementia is a comorbidity in the later stages. Being able to choose a dignified end, hopefully in 30-40 years, is important to me.
I've been thinking about the question: "where will all the people go?" and instead of you having to do all that. Why don't we just pair the serial killers with the people who want to die? The right-to-die folks get what they want, and the "serial killer"-types get to pull the proverbial trigger, and we get to interview them after.
Would you prefer to suffer through something like cancer, fully aware of your decline and unable to do anything but with the will to do so? Or just be completely unaware of what is going on but not necessarily in poor health? Dementia is certainly terrible in a unique and disturbing way for the afflicted and people that care about them, but Im not so sure some of the more understandable alternatives would be preferable.
If you're asking what's worse, body dying with a a good mind, or mind dying eg in dementia but good body, the answer is almost 100% the latter being worse.
I know someone who had Alzheimer's. Was in excellent physical shape, had biomarkers of someone 20 years younger. Would go for daily walks for decades, consistently did yoga etc.
The issue, with late stage Alzheimer's (and possibly dementia in general), is that the brain starts to forget so many things it's not even funny (it never was). You forget to swallow water. You forget to chew food. You forget what the bathroom is for. It's far from "living with dignity", even if the body is still physically capable. I think lock-in syndrome is the only other medical situation I'd consider similarly traumatizing.
It would be abhorrent if you understood what was going on, but if you did you wouldn't be in that state. I'm not sure whether in general terms Dementia is as traumatic for the sufferer as the observer who attaches value to a historical person (who for all intents and purposes is gone)
Out of curiosity, have you seen dementia first-hand, or are you just making academic assumptions?
Having first-hand experience from a care perspective doesn't give anyone any more insight into what's going on from a biological or mental standpoint.
I don't think that could possibly be true unless you are yourself very limited in your cognitive capacity. Spending many hours with someone as their cognition is eroded by disease process, how can you help learning about the disease and the consequences? It would be like raising children and ending up not understanding more about developmental psychology. Not saying it will purge your thoughts of all mistakes, but you will learn a lot. Even simple things like the end of the day is a low point of cognition for dementia patients. The cycle between forgetfulness and poor nutrition. How the rhythms of conversation can last longer than the content of the conversations. How music can be a comfort when no words matter. How one can forgot one's children yet still have the ability to see if they are hiding upset feelings. The strange mosaic of skills and abilities that make up our full humanity.
There's often a long overlap, though. Both my grandmothers died with Alzheimers. We'lll never know how long they knew, but in retrospect it's clear they knew of the decline for quite some time.
My mothers mother avoided hospital until it became too apparent to everyone around here that my grandfather tricker her. She'd make jokes about her failing memory for years, and while some of it might have been genuine, in retrospect odds are she noticed it was getting bad and was obscuring it with humour.
For years afterwards, she would forget conversations partway through them, but clearly be aware that something was wrong. E.g. for some time she recognised me, but would wonder when I got there and how long I'd been there, and occasionally my name and who I was would slip, but she was otherwise lucid enough to understand that this was not normal.
My dads mother managed to hide the decline until one day my grandfather was going in to hospital for a minor operation, and she refused to get out of bed. The last time I saw her before that, she seemed lucid and held a conversation. I never had another conversation with her, though she lived another decade - she went non-verbal almost overnight, but it was clear this wasn't some sudden physical change; she'd held it together until then, and gave up. It might be her cognitive decline was faster, and less cruel, but we really don't know if it was, or if she just managed to conceal it until the very brink.
How much after that she managed to hold on to enough to recognise any of us - including her husband we don't know, because shortly after she went non-verbal she mostly stopped moving.
But one of the cruelest parts of Alzheimers is what it does for those left behind - my grandfather spent a whole decade in his 70's and 80's walking to the nursing home, sitting with her all day, every day, then walking home, after she was for all intents and purposes gone.
People with severe alzheimers have a major problem with short-term memory. So if they are in an environment where everything is the same as it has been for a long time, then can manage a long time, because their long-term memory is fine. But when something changes (like your grandfather going into hospital), it can often completely destabilize them and they often don't seem to get back to their prior level of functioning. I'm sorry your family had to go through that.
My dad died with Lewy Body Dementia and it was absolutely terrible. He was hallucinating terrible things and would be up all night terrified.
I called him once when he was in the hospital and had to be restrained. He begged me to come get him because he thought he had been kidnapped and was being held in a barn somewhere. There was no convincing him that the people around him were doctors and nurses who were trying to help him.
After I told him I couldn't come (I was in another country at the time) he begged me to call the police. By the end of the call he told me the barn was on fire and he was going to burn alive. It was enough to convince me that I needed to be in control of when and how I die.
My dad had no idea what was going on and he was 100x worse for it.
Worse for whom? The latter seems a lot less distressing for the subject (assuming you have the "blissful ignorance" dementia and not "constant fear" dementia"), the former sounds like a novel form of torture.
There's a reason we sedate people undergoing most medical operations.
Worse for both, the patient & the loved ones. Even with "blissful ignorance" dementia (in my limited experience) people can very quickly get agitated. Yes, they may calm down quickly too, but it's not always calm.
The problem with dementia isn't just at the "old person chilling in room" state, as I mentioned if it progresses far enough (which is nearly guaranteed if they live long enough) basic bodily functions become difficult. A parallel case of eg paralyzed people (both of whom are unable to swallow properly for different reasons) shows how frequently they can die from something as simple as choking on their own saliva.
I'm not sure what you mean by this, if you're referring to people waking up but being unable to move being potentially torturous I agree.
It's not either-or, it's both. It takes time to reach the point where you're "unaware". Before that, you're fully aware of what's happening and that there's no escape. After that point, it will probably get "better" for you, the patient.
But it also gets way, way worse for everyone around you. With cancer, you're still yourself - you die as the person you were. With dementia (or Alzheimer's at least), you die twice, and people around you are left to tend to your corpse, which happens to move and eat (even if you forget to chew and swallow) for years after you're gone.
Exactly, as I've mentioned elsewhere, both my grandmothers got Alzheimers, and I have basically nothing but a couple of vague memories of them for the last few years of each of their lives, but their partners spent years tending to people who were already gone, both seeing them whither away, but also in effect losing so much of what was left of their own lives.
To me, they pretty much died once they stopped recognizing us. For one of them that was very soon after we realised something was wrong, and yet her body survived a decade after her mind was gone and it was awful seeing how it reduced her husband who spent all of those years in the same nursing home doing nothing but tending to her.
My other grandfather died of cancer a few years into his wife's alzheimers hospitalisation and frankly it feels to me like he got the better way out of him and his wife (but largely because it was a very aggressive cancer and he went during an attempted operation; maybe I'd have thought differently about it if he'd struggled with it for years).
Both scenarios scare me terribly. I wish I'll never have to find out which is worse, not for me or for any of my loved ones, but of course this is very unlikely...
One thing I wonder about: My dad had dementia and ended up pretty batty toward the end, though it came in waves and he was pretty lucid when he decided to "go". As I get older, I notice myself forgetting things more, but it mostly bothers me in the context of forgetting to do things at work. If I were retired, I'm not sure how much having a terrible short-term memory would affect my level of happiness. I can see myself living like my mother-in-law is now, in a kind of unagitated rolling 3 minute window of perception. Terrible for the people who have to clean up after me, but not necessarily so much from the other side of the glass.
Too many of us are attached to our intelligence. I love this story bc it's a reminder that we should value personal excellence over intelligence. By personal excellence I mean making the most of the intelligence you’re given.
The arc of intelligence in Flowers of Algernon is the same arc we’ll all experience over our lifetime. With old age, we all lose our mental faculties. If we value intelligence, in and of itself, that loss will be very painful. But, if we value making the most of our intelligence, we are resilient.
Applying this framework to Charlie, there’s much less to be sad about. He made the most of the intelligence he was gifted, and that’s what really matters.
Citation needed
AFAIK it's not remotely true that "we all lose our mental faculties". Plenty of people do not
I thought it was well understood that your mental/physical potential peak when you are young and degrade thereafter? E.G. comparing 26 year old self to 86 year old self.
But a saving grace is the degradation can be combated with exercise both mental/physical.
I am not sure how much of aging is understood, so I hesitate to mention stuff like DNA damage.
I think that's a total misconception. I think the myth that "the brain stops developing at 25" was an apocryphal conclusion from a study where they simply stopped measuring past 25 and that either the same study or other studies found many brain faculties don't plateau, ever, even in advanced age. I also heard that it's highly variable from person to person how the brain develops, like some 8-year-olds had faster development in some regions than some 30-year-olds.
One thing's for sure though: we're still in the stone age of neurology.
Years ago we were taught that the brain could not grow. You had what you were born with and after your twenties it degraded.
Now of course we are aware that the brain has plasticity. It can rewire itself, grow, learn.
so primitive. but we're finding things out, from ultrasound surgery to cut out the addiction center of the brain, to influencing motivation/treating depression with magnetic/electrical fields with TMS and tdcs, we're ever so slightly making sharpened stones and crude axes of the stone age we're in
There's a difference between slowing down and losing cognitive abilities. It's one thing to not be able to solve very complex problems anymore and another to not remember how to use a toothbrush. I don't think anyone's really disputing that we're on average more capable in 20s-40s.
In medical school we were taught that basically everyone gets alzheimers, or would get it if aged up to a certain age (200, 300, etc). You could make the same argument for cancer - actually in that vein prostate cancer is a big one people die with but not of. When you study the body enough you realize that every system at every micro/macro level is failing slowly with age, but we can only pick on one of them as the cause of death.
Re: citation needed : failed literature search link needed as pre-requisite
I think Alzheimer's is scary because it's not just about intelligence. If it was just that you become dumb(er), I wouldn't mind it that much. I must be an exception, but beyond a certain threshold (I wouldn't want to be drooling idiot) I'm not that attached to my intelligence. I'm painfully aware that I'm average and that I had the luck of having an education and a stable home that other, more intelligent but less fortunate people than me, didn't.
I think Alzheimer's is scary because your whole personality goes. Cognitive functions. Memory. You stop being independent. You cannot do the simplest things by yourself. Things become scary and you're not sure why. You are alone, surrounded by strangers.
If there was a progressive illness where you got less intelligent, but still able to function and tell who your loved ones are, remember things, and at least understand where you are and your new place in the world, to me it wouldn't be half as scary as Alzheimer's.
I can corroborate your insight from personal experience. I had a stroke a few years back and, while I was recovering, my intelligence was drastically reduced. I always derived a great deal of my identity and self-worth from being "smart", and would have predicted that operating at maybe 25% capacity would be devastating. In fact, it wasn't. I was aware (certainly!) that I was operating at a deficit, but I still felt like myself. I was able to love and feel loved, experience joy, and humour, and enjoy good food, and watch movies and sports on TV. About all I couldn't do was read (well, I could read, but I couldn't follow complex prose), which sucked, but nearly all of what made me me, and made life worth living, was unaffected. Intelligence is overrated.
Your description of dementia, however, is only true from the outside. Prior to that stage, I passed through a period of about a week where I was completely absent. I was able to behave coherently for short periods of time, but I wasn't creating any memories. It's a blank. (I have text threads saved with friends where I tell them what's happened and where I was, carry on for a bit, and then loop back to the beginning.) If identity is a pattern both stable and self-modifying over time - which, based on this experience, I believe it to be - then I had ceased exist.
I've made an agreement with my wife that, should I become demented in old age, she should feel no moral compulsion towards any course of action. She's welcome to keep whatever is left of me around so long as it gives her joy, but "I" will no longer be present, and whatever happens to whatever is left no longer matters. As far as I'm concerned she should warehouse, or (better, though unfortunately not legal where we live) euthanase my body, and get on with doing something useful with her time.
As another reply has stated, losing some intelligence is not so terrifying.
Alzheimer's is. I've seen it up close over its course twice. It's as bad as people imagine. You never forget the sound of someone drowning in their own saliva.
So sad and terrifying.
I came across this song recently about losing someone to Alzheimer's.
https://www.youtube.com/watch?v=ci5hfiIM5KY
Well said. The more I read and attempt to understand LLM and AI the more interesting the parallels to the human mind. Our conscience mind is similar to a model and weights are applied in the training of our model in a variety of ways. Parents, school, environment, illness, books, video games , relationships, religion, etc all work to help fine tune our model and in essence develop our presented conscience self (well maybe … ). Breaking down of the neurons leads to the model itself breaking down and the conscience person we know is lost.
Perhaps there is more than us than just our conscience personality and the essence that vibes with the larger pattern of life and reality itself is more than our little personalized highly tuned version of “me”.
Interesting times to be alive for sure.
What? No. That is not at all true. Nearly all of my relatives - other than the one who had alzheimers - were as sharp as ever up until they died.
I always thought it would be neat if there were some dangerous or lethal jobs that people like this could sign up for and go out in a blaze of glory. I know I'd sign up! Like Spock fixing that warp core :-)
cf. the many elderly who volunteered to clean up at Fukushima
I don't think they expected to die from it, though. More so that they knew they would die of old age before they could develop cancer from it.
Fascinating. Here's one article about them: https://www.npr.org/2011/09/12/140402430/japanese-seniors-se...
Maybe Spock was just playing the long game. Knew he would be resurrected by space magic and get to pon farr with the rescue party.
There are preventative measures. The easiest and cheapest one is cardio exercise. I can’t run anymore, but I find the Quest VR headset to be a great way to do cardio workouts since you’re just playing video games. Much easier to do and less excuses than having to go to the gym.
Throw in the late Edward Wellen's "Mind Slash Matter" for another variation.