This is dreadful to read. I wish I'd had a chance to get to know Paul @onceuponatime. I was just commenting about this with another steemian who lives in Romania. Here is what I shared.
I am 'off and on' caregiver for my niece's husband who is a quadriplegic; paralyzed from the neck down.
He DOES have some use of his arms, his hands are basically claws, but he drives his electric wheelchair and operates his computer using a pencil/stylus wrapped around his hand.
Personally, I do not want to live that life (colostomy, supra-pubic catheter, feeding tube into his stomach) but my niece (his wife) is his full time caregiver, he gets $10,000 USD PER MONTH as long as he is alive, so given their circumstances, they live pretty well.
He can speak, but he cannot eat real food, hence the feeding tube. He has a device that she loads with liquid nourishment and water a couple of times a day.He had had intestinal difficulties prior to the accident that damaged his spine.
So as a "Certified Nursing Assistant" I can see both sides of that equation.