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.
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.
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.
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.
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.
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.
I came across this song recently about losing someone to Alzheimer's.
Citation needed
AFAIK it's not remotely true that "we all lose our mental faculties". Plenty of people do not
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.
One thing's for sure though: we're still in the stone age of neurology.
Now of course we are aware that the brain has plasticity. It can rewire itself, grow, learn.
Re: citation needed : failed literature search link needed as pre-requisite
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.
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.
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 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.
<< KILLBOT ACTIVATING >>
oh no
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.
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.
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.
You appear to me to be the type who never writes any bugs in their code.
[1] Because "you can't type-check being hit by lightning"...
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.
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’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.
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)
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.
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.
There's a reason we sedate people undergoing most medical operations.
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.
> There's a reason we sedate people undergoing most medical operations.
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.
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).