Hacker News Reader

Comment by kgin | Hacker News Reader

There is an almost entirely invisible world of people who are alive but suffering to the degree that a normal life just isn't possible. It's completely hidden unless you or a loved one crosses over the line into that world. If you do find yourself on the other side of that line, it's an extremely dark place to be, but even more so because of the loneliness. Almost no one back in the "normal world" is willing or able talk about the reality of a situation where the scales have tipped and life honestly might no longer worth living.

View on HN

Watching my previously sharp as a tack and vigorous grandfather’s slow and inexorable decline due to Alzheimer’s convinced me that there are fates worse than death. We lost him 2 or 3 years before the date on his death certificate.

My grandfather passed away a few months ago in January, and he also suffered from Alzheimer’s. I remember one day someone mentioned they needed a tool for some house repairs. He overheard this and tried to bring them the tool from his shed. He kept bringing the wrong thing, and he could tell it was wrong and was growing increasingly frustrated because he couldn’t quite figure out how to bring the right thing. It sticks out in my mind because he seemed aware something was wrong, but was completely helpless.

I totally feel it when you say you lost him years before his death date. It’s terrible. My loss still feels so fresh. Thanks for mentioning your grandfather; it is a comfort to know someone else knows what it’s like.

I had a similar experience with my grandfather who suffered from early dementia. He was fully conscious of his condition degrading and that's the part I am most scared of for myself.

It was basically the end of flowers for Algernon on a longer time scale.

Yes, my father passed from Alzheimers, too. He also "died" about three years before his body did. I've been gradually adopting more and more of the regimen outlined in the book "The End of Alzheimers".

I believe the lack of rights for people doomed to these illnesses will not be viewed upon kindly by our descendants.

What rights are you talking about? I was appointed by the court to handle his financial affairs after he forgot all about them.

My grandmother had a fairly catastrophic stroke (she actually died shortly after due to malpractice, this was awful in the sense that it should never happen but was honestly a blessing in the sense that the result of this stroke was either a nihilist alcoholic trapped in a body that doesn't work or something even worse), witnessing that solidified my conviction that people suffering diseases that cause loss of mental function (like Alzheimer's) should have the right to legally commit suicide in a dignified manner (and the facilities to do within a legally and ethically responsible framework).

I don't know what the US law is, but in the UK at least even flying to Dignitas (for example) with someone is legally not kosher. I didn't pry but I think this situation lead to a suicide in my family also (attributing a single cause to a suicide is usually not a good idea so I won't ponder, other than that it wasn't clean or dignified.)

The trouble with legal suicide for things like Alzheimers is the person is, by definition, not legally capable of making such a decision.

I think it's possible for a medical+legal panel to resolve issues like that, but the thing that would probably cause me to chicken (should it happen to me down the line) out would be actually doing it sufficiently long after the initial screening (I don't have a statistic but it isn't uncommon for the result to come long before the really nasty symptoms) but before said symptoms set in. In future we can hopefully spot things like this much earlier (I don't know what came of it but I heard a brain scanning hat similar in mapping capability to an MRI - passive only apparently - being discussed in a physics department, apparently past prototype stage)

I think the same argument can be made for terminal illnesses also but I think the issue there is extreme pain rather than loss of mental faculties which is potentially not the same thing in the eyes of a court.

It was almost 15 years for my grandma, thankfully her body gave out late last year. Awkward for us, she was devoutly religious and she'd have never agreed to an earlier end on account of her faith, even if she knew what she was in for.

Same. The worst was grieving his loss while he was still alive because there were other family members that wouldn’t come to grips with the fact that the man we knew was gone. Some of the family grieved over the loss a year before the actual death. It caused strife when his body gave up and it was viewed as a relief for those who already grieved his loss...

My grandfather is suffering from what I guess is intermediate onset of Alzheimer's. A couple of months ago he used to ask for my wife by name during every video call. During our last call he forgot that I'd gotten married at all.

It's terrifying watch him lose his memories week by week.

I can't upvote this comment enough.

It is a completely different world. You've heard the words - "cancer", "Alzheimer's", "stroke", and others - but you literally can't imagine the scale of suffering involved until you find out first hand.

I'm not sure people aren't willing to talk about to them. It may be that most people simply don't have the experience, and so are happy living their lives until this other world comes knocking.

I suspect it would make a huge difference to many things - not least health care funding - if there was more awareness of what these words mean.

This reminds me of the little book „Mortality“ by Christopher Hitchens where he describes his experience with this own terminal cancer.

I remember how he describes this different world and also how mistaken the popular notion of „fighting cancer“ seemed to him when in reality it is a passive suffering.

Yup, completely true. Sometimes you can make it back to the good side, but not always. Most people have no idea of this parallel world because they're busy enjoying their lives in a way countless others are unable to. Which is, ofcourse, in a certain way, what many of those less fortunate people would want for them. Just remember to have empathy.

Reply on news.ycombinator.com