8 ms·

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 eve

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.

busterarm 5y ago
> 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.
- User23 5y ago
  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.
  - busterarm 5y ago
    Indeed, but our society seems to be fighting this notion hard.

busterarm 5y ago

> 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.

User23 5y ago
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.
- busterarm 5y ago
  Indeed, but our society seems to be fighting this notion hard.