We have had a few similar experiences in my own very large family, some turned-out okay, others, tragically, NOT. One young man had a damaged back and pain from that, but unemployed and just enough insurance to get him started on the pain-killers, but not enough to actually help him.
We have also seen a few elders off into the heareafter. Some of that was done the way most people think they want to do it. We built mom and dad a house and put them in it and family all around helped out, including a couple of nurses in our family and a couple of office administrator types who took responsibility for wrangling health care, banks, and government systems to make things work for mom and dad. I live in a different city, but heard some real tales of horror about "care" even when it's coming from designated "care" givers. Mom did okay, even through several crises, in this situation. Daddy didn't. People don't know what they don't know about caring for people in their homes, some people may blow that all off, come what may, and others engage the long, confusing, stressful, tired, sad struggle. I have decided that if my health goes bad, I will not stay here. Even if I don't have to do that, everything about elder care needs to be honestly addressed anyway. Maybe the Baby Boomers are the ones to do this, because there are so many of us.
We should have much more preventative care, which would, of course, include BEHAVIORAL therapies of various kinds and we also need complete parity for mental health coverage from our insurance companies. I taught high school for 8 years; there's a great deal that could be done with EARLIER appropriate interventions for at risk persons, if anyone cared enough to make that happen. Prevention reduces costs.
We're just so used to being told and believing, without actually looking into it closely with actual research, that "there isn't enough to go around". Some social science researchers say there is enough, we're just not living in a way that uses our own resources more effectively. I think part of the reason that we accept that assumption is that we think of EVERYTHING and EVERYONE in terms of an artificial commodity known as money, instead of thinking about other solutions that might include things such as enterprise networks of at least partially employee owned and delivered services.
I am very close to my own sister, we're just beginning to get on in years now and whether we're actually getting kind of kooky or if it's just the wild women in us who are finally feeling like it's okay to assert themselves, I'm not sure. My sister has helped me through the deaths of two FINE husbands, so, in a way, I know what you are doing for your own sister. I honor your commitment to your loved one and your hard work.
I have decided to keep an eye on what is happening in my beloved Kansas, I hope to see you around, notadmblnd.
Solidarity!
p