Comment by Noaidi

tsimionescu 3 days ago

Have you ever cared for someone with late stage Alzheimer or other forms of severe dementia? The reality of it is that a person who suffers from this is simply not the person you knew, by any measurable definition. They don't remember you, they may well fear and hate you. They change moods at a moment's notice, they live in a state of either lethargy or accute anxiety, suddenly waking up in a place that they don't recognize or remember ever living in, nor remembering how they got there. Their life essentially becomes a series of TikTok reels in which they are the main actor, or a vivid dream. Not only are they not the same "self" that you loved, they are usually not even a coherent "self" beyond a few tens of minutes.

And, just to make everything as heartwrenching as possible, in this series of short reels their mind is swiping through, they occasionally become the person you had loved, for some minutes. And you know that these moments will never get more common, only rarer, but you can't help but think that they're "still in there".

It is my firm belief that any sense of "me" would be long dead by this time. Keeping my body and scraps of my consciousness alive only to torment my loved ones, caregivers, and neighbors would be a cruelty that would serve no purpose. I hope that I don't ever have to make this choice, but I also hope that, if I am ever diagnosed, I will have the chance to make this choice and avoid such suffering.

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Noaidi 3 days ago

> Have you ever cared for someone with late stage Alzheimer or other forms of severe dementia?
Yes.
Did I say that it was easy? Did I say that the spiritual way through all this was just pretending like everything is OK? No, it’s a very difficult process.
Avoiding suffering is impossible. Choosing to die to avoid suffering does not guarantee non-suffering. Only understanding suffering and where it originates can get rid of suffering, and you don’t do that by avoiding it.

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- tsimionescu 2 days ago
  
  You are not replying to my core point. Do you believe that a person with severe late stage Alzheimer is the same person they were before the disease reached that point? Do you believe that their old mind and personality still exists at that point? If so, why?
  For many other neuro-psychiatric diseases, we know that moments of psychosis are reversible, at least to some extent, with drugs and therapy and the kindness of others. The same is manifestly not true, tragically, for dementia: everything lost is gone forever.
  
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  Noaidi 2 days ago
  
  You are not the same person you were when you were nine years old are you? Literally all your cells that you had then are gone and replaced. You’ve also had new experiences and that’s changed self-concept as well. We are not one continuous person that something like Alzheimer suddenly changes.
  It’s because we associate so much with our experience as memories that makes us think that that is what we are. Are people with Alzheimer’s the same person? No, they’re different people. This is why we’re not allowed to just go around killing people with Alzheimer’s and dementia.
  The thing that makes us alive is the constant change and activity in the body. If you say, someone does not change, that someone is the same throughout their whole life. That amounts to calling something dead, still, unchanging, lifeless.
  These people with dementia, they still have a personality don’t they? I know my friend’s mother does. And my friends, father who died a few months back with Alzheimer’s. Yes, he was angry and had outbursts that were 100% uncharacteristically not like his old behavior. But behavior does not dictate who you are is signals that we still have a consciousness. And that is who we are. We are not our memories. We are not our current form of expression. We are our consciousness. Because our consciousness loses the function of accessing memories does not make us any more us.
  You are not your memory. You are consciousness. You are the thing that reads memories.
  But again, this drifted so far from the point of the article. This man killed himself not for his current suffering, but for his perceived future suffering. He was afraid of change he was afraid of what that change meant. He wanted people to see the same dead person That people saw him in life. A constant unchanging perception.
  
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  tsimionescu 2 days ago
  
  You very much are your experiences. You are the sum result of your formative experiences and memories - no more and no less. Sure, I've grown since I was 9 years old, but there is an uninterrupted stream of experiences from when I was 9 years old up to now, and some of the things I learned back then are a part of who I am today. The raw concept of consciousness as the observer of your mental states, the "thing that reads your experiences", is not recognizable as a real mind - if it has no experiences of its own, it is a blank slate, with no desires, fears, intentions etc: those all come from formative experiences and lessons learned.
  Alzheimers destroys this stream. All of a sudden, key formative experiences that made me me disappear irreparably, and so what survives is not me, it is a new consciousness formed of other experiences (mostly a subset of the ones I had, though Alzheimers can also sometimes create fake memories from pieces of real memoeies, conjectures, maybe even dreams or old desires etc). And while this is a consciousness, it is not a regular human consciousness, since it doesn't have anything similar to the regular human uninterrupted stream of experience, it is a consciousness made up of fragments of the consciousness of another person. And it is uniquely well positioned to hurt the people that the original person loved the most in the world, without realizing they are doing so. Plus, the life of the new person inhabiting your mind will be, inevitably, horrible. Because, again, they will be in constant shock and confusion because of their missing, incomplete, disordered memories.
  So yes, the person we're talking about took a choice to avoid this horrid change. He was afraid of change, yes, because he knew well how horrible said change is, entirely inevitably so. It's normal to be afraid of horrible change. If someone is about to cut your leg without anesthesia, it's normal and good to be afraid of said change, and try to avoid it if you can.
  
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  whatever1 2 days ago
  
  By the way dementia etc throw a wrench in the concepts of consciousness, afterlife etc.
  A person with late state Alzheimer's, are they conscious? Do they still have "spirit" ψυχή? Is it the same person, or the person moved on? Are they human anymore?
  Sorry I have no answers.
  
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- Der_Einzige 2 days ago
  
  “Choosing to die to avoid suffering does not guarantee non-suffering.”
  Either it does or you’re claiming to be religious and implying you know for sure what happens after we die.
  
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  Noaidi 2 days ago
  
  I am not stating either the above. I am only stating I don’t know what happens after we die. So to me dying is not a guarantee of some relief of my suffering. It’s just a logical statement. There’s no religion behind it.
  Do you know what happens after we die? If you do, can you tell me how you know it?
  
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jncfhnb 3 days ago

> If you think you’ll be a burden on your loved ones can we really say they’re your loved ones? This is a serious question. If you’re thinking that you’ll be a burden do you think that these people really love you?

I think it’s a pretty fuckin dumb question.

Gatekeeping “love” behind service of ceaseless emotional toil with a smile is ridiculous.

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robotresearcher 3 days ago

Good lord, we have very different interpretations of ‘burden’. I had healthy, happy, typical children that I loved to bits and they were absolutely a burden! Some days I could barely deal.

Acknowledging that the things you love are a huge pain in the ass sometimes and keeping on loving them is perfectly healthy.

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Noaidi 3 days ago

A burden is a heavy load. The stronger you are the less things are a burden to you. In this case, if you are more spiritually strong you are, the fewer burdens you will have.

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- lazyasciiart 3 days ago
  
  Spiritual strength is the ability to be a smug jerk to others because you think you’re better than them. It certainly is a coping mechanism for some people, but it’s hardly one that should be encouraged.
  
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  Noaidi 2 days ago
  
  I’ve been nothing but nice on this comment thread. If you disagree with me but can’t gather the words to explain yourself It’s no reason to call me a name for your lack of vocabulary or understanding.
  
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- [removed] 3 days ago
  
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prmoustache 2 days ago

> If you’re thinking that you’ll be a burden do you think that these people really love you?

These are not mutually exclusive.

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saltcured 3 days ago

As a caregiver and survivor to family members with mental illness and dementia, yes I would say that someone can be a loved one and a burden. These aren't places on a single dimension, but totally different dimensions that can mix in amazing and terrible ways.

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