AFTER EDIT: I see a lot of other HN participants here are sharing personal stories of caring for dying parents, so I will briefly mention mine. Just more than eleven years ago, an April with a late arrival of spring like this year meant that we had a winter storm in early April. My dad was out on a shopping errand in the morning, and slipped and fell on an icy store parking lot while walking back to his car. He was just days before his seventy-second birthday then, and the slip and fall left him paralyzed from the neck down, as he injured a cervical vertebra in the fall.
He originally thought he would fully recover from that injury. He had fully recovered from a similar injury (from a car crash while his mother was driving him to college) when he was still a teenager, back well before I was born. He had surgery after his later injury, but the surgery only made his condition worse--not only could he not move any of his limbs, but he also couldn't clear his throat or swallow, and he could speak only with difficulty. He spent the last six years of his life that disabled, sometimes making a bit of progress in recovering motion through physical therapy, but never making enough progress to regain the ability to walk or to eat without a gastric tube.
So, yeah, end of life care issues are tough. My dad thought beforehand that he had written down careful instructions in a personal care directive prepared years before his injury. But even though that document listed many different possible conditions, with directives for his care in each case, what actually happened to him was an edge case compared to everything on the list. It absorbed a lot of my time and attention while my children were young and I had just moved back to the United States from overseas to check how my dad was doing and keep him company when his other family caregivers were exhausted. For six years, our weekends were visits to grandpa--never much of anything else.
In the end, his transition from eventual intensive care as health issues piled up from his long-term immobility turned into a very brief stay in hospice before my dad died. (My dad died at a considerably younger age than his father before him.) I'm sure he didn't want to die that way. He wanted to walk again before he died, but that was never possible. Slow decline in health is hard to face and hard to make satisfying decisions about.
Thank you for sharing. Someone I know has the same condition (hit by a car, parallelized from the neck down, not able to breath on his own). I just realized I haven't seen him is quite some time as I'm always busy in my own way. I'll correct that tonight.
> For six years, our weekends were visits to grandpa--never much of anything else.
Playing football or going to Disney World or whatever sounds like it would be more fun than sitting at home giving comfort, for sure, but being together is the main thing. You did good, which is the best anyone can do, and earned the respect and admiration of your peers.
https://news.ycombinator.com/item?id=1448364
The article "How Doctors Die" from a different publication has also prompted a lot of discussion about related issues in previous submissions to HN:
https://news.ycombinator.com/item?id=3313570
https://news.ycombinator.com/item?id=5104430
AFTER EDIT: I see a lot of other HN participants here are sharing personal stories of caring for dying parents, so I will briefly mention mine. Just more than eleven years ago, an April with a late arrival of spring like this year meant that we had a winter storm in early April. My dad was out on a shopping errand in the morning, and slipped and fell on an icy store parking lot while walking back to his car. He was just days before his seventy-second birthday then, and the slip and fall left him paralyzed from the neck down, as he injured a cervical vertebra in the fall.
He originally thought he would fully recover from that injury. He had fully recovered from a similar injury (from a car crash while his mother was driving him to college) when he was still a teenager, back well before I was born. He had surgery after his later injury, but the surgery only made his condition worse--not only could he not move any of his limbs, but he also couldn't clear his throat or swallow, and he could speak only with difficulty. He spent the last six years of his life that disabled, sometimes making a bit of progress in recovering motion through physical therapy, but never making enough progress to regain the ability to walk or to eat without a gastric tube.
So, yeah, end of life care issues are tough. My dad thought beforehand that he had written down careful instructions in a personal care directive prepared years before his injury. But even though that document listed many different possible conditions, with directives for his care in each case, what actually happened to him was an edge case compared to everything on the list. It absorbed a lot of my time and attention while my children were young and I had just moved back to the United States from overseas to check how my dad was doing and keep him company when his other family caregivers were exhausted. For six years, our weekends were visits to grandpa--never much of anything else.
In the end, his transition from eventual intensive care as health issues piled up from his long-term immobility turned into a very brief stay in hospice before my dad died. (My dad died at a considerably younger age than his father before him.) I'm sure he didn't want to die that way. He wanted to walk again before he died, but that was never possible. Slow decline in health is hard to face and hard to make satisfying decisions about.