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Comment by ca98am79 | Hacker News Reader

fyi, I posted this story a while ago on Hacker News: https://news.ycombinator.com/item?id=5893505 But the link no longer worked, the website is down.

I found his obituary: https://obits.pennlive.com/us/obituaries/pennlive/name/jeffr... It looks like he made it to 47.

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Ok but... why post it now?

Who knows? the answer only serves to let you judge u/Yuioup. Maybe they know someone with ALS, maybe they are a troll looking to use sympathy points for fake Internet points (now convertible to crypto currency and real world currency!) Maybe they knew the person who died and are trying to commemorate them. Hopefully your prompt will let them answer with grace. If not, why did you ask... and so rudely, too

I didn't find the question to be rude.

"OK, but why now" can be rude in certain contexts, especially sensitive ones like this, but the ellipses push it over the edge into "definitely has a rude tone" (which maybe they did not intend, but I'm only explaining what creates a rude tone in the written word).

Oh sorry. Didn't mean to be rude. Just wondering why a post from 2013 was put up on HN.

Apologies.

My uncle died of ALS. I find it less scary than Alzheimer's disease but still a truly awful way to go. He wasted away. He was unable to really sleep because every time he fell asleep he would have a subconscious reaction to the breathing machine that triggered panic and woke him up. So he was pumped full of benzos in order to keep his anxiety lower, which made him quite out of it. He was in a medicare-accepting full time care facility which was extremely dirty, smelly, and full of workers who honestly didn't give a fuck, and they expressed this in many overt and subtle ways. The only comfort he got was from his family who visited every day to speak and read to him. He was 78 years old, so at least my uncle had a much fuller life than Aaron, as dying of that at 46 is a pure tragedy.

> He was in a medicare-accepting full time care facility which was extremely dirty, smelly, and full of workers who honestly didn't give a fuck, and they expressed this in many overt and subtle ways. The only comfort he got was from his family who visited every day to speak and read to him.

This is a very uncomfortable reality about our care system and the way our society is structured in general. Nobody deserves this kind of treatment, but we also don't really have the lattitude in our lives to spend time caring for our family. Also this kind of care is commoditized by our insurance system where paying for these kinds of systems is more supported than assisted care in-home.

I'm hoping that as a result of COVID with people finding more lattitude to work flexibly from home and more people focussing on their families that more people can avoid this kind of end-of-life care.

This is one of the more obvious reasons to have as many children as possible and to raise them as well as possible. Fact is otherwise nobody is liable to care about you when you’re old and even if one of your peer friends does they’ll be in the same boat.

It doesn’t matter how much money you have, because without someone to actively advocate for you it won’t go well.

Indeed, but our society seems to be fighting this notion hard.

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