MY 94-year old father was released from hospice care today because he’s just doing too well to qualify for that designation. His life in the nursing home will continue as usual, only now there’s no extra nurse, aide or social worker checking in. I get it and I’m actually rather hopeful that the doctor is adhering to the rules of Medicare and the spirit behind those rules. Although nobody can predict how long my dad will actually live, they also can’t limit it to the 6 months required by the Feds. I’m hopeful because the news is filled with too many stories of Medicare and Medicaid fraud it worries me that the health care marketplace is fraught with tricks and loopholes to bleed money from the government and us taxpayers. It’s nice when I see the law adhered to.
So my father is off hospice but still stuck in the nursing home he hates. Now I’m talking about a gold star nursing home with amenities to match. Book clubs, sports groups, activities, musical concerts, religious services and beautiful grounds that he can see from his private, spacious room. He’s stuck because that’s how he sees it. He’s no longer able to walk to the parking lot, get in a car and drive home. And none of his kids will do it for him. He doesn’t participate in any of the activities other than services and the periodic entertainment.
He’s been there for more than a year and I really don’t think he hates it anymore. He’s adjusted, knows the people, enjoys some of the food and complies with the regimens. He’s clean, is well groomed, has gained weight and is the epitome of robustness for a 94-year old man who’s been disabled by a stroke 25 years ago. Left to his own devices, which he desperately yearns for, none of that would be true. It’s the rules and the regs that bother him the most. He feels like he’s in prison, and he’s right. He’s being held somewhere against his will and that’s the ultimate in lack of control, especially for a very controlling person who’s quite macho and has always been in charge.
He’s sad a lot and lonely and that makes us, his children, equally hurt for him. We can’t fix it. We’ve sent in a social worker and rabbi to see if they can help him adopt a different attitude. Sometimes it helps but only temporarily. We’ve explained how he requires the care of skilled people more regularly than he can receive at home. And how he’s actually less lonely than he was in his bedroom where he interacted with many fewer visitors and just his TV for entertainment.
My father thinks his daughters have betrayed him, that we’ve turned our backs on him now that he needs our help. That he financially and emotionally supported us as children and provided a comfortable livelihood so we could enjoy what we were provided. He is unable to consider different points of views outside himself. His heart won’t allow it and his pride won’t release. As he sees it, he is the rooster and we are the eggs and we need to do what he wants as he did when we were children.
That makes us sad too for we haven’t betrayed him. Quite the contrary. Each of us plays a role in my father’s life at the nursing home. One sister closely monitors his care there and takes care of his domestic needs. One overlooks his finances. The third sister researches the law, his business history and gives him feedback and the last cheers him up, makes him laugh and brings him her delectable dishes. He knows it, and doesn’t notice it. That’s just a given; we’re his daughters.
It’s a learning experience for us all. He has to accept life as it is and we have to live with the knowledge that we’re keeping him where he doesn’t want to be and doing our best for him in the background.
Sigh …
actthreedotnet 
It’s not only a learning experience for all you sisters, it’s a learning experience for those of us who have been hearing your articulate and passionate stories for the duration. I rarely hear of anyone being removed from Hospice–what will we all someday realize we have learned about the dichotomy of hating the life one leads but refusing to check out? For one thing, my intention is to do my best to not “hate” anything or anyone. My daughter and grandson just visited for a few days, and I heard a lot of “hate” and “don’t like”, and I realize that I am at least partially responsible for teaching my only child that those labels are helpful. If I have a big regret in life, it is that I lived too long before I learned how harmful hating (even bugs!) is to myself and by extension all other sentient beings.
Thanks Chaz. I’m learning too much about hate in this election cycle. I’m now consciously working at healing that.
Very frustrating for everyone! Still it sounds like his mind is in good shape – part of why he’s so frustrated! My dad died with dementia. He stayed in good spirits, but it was hard on the rest of the family. I’m afraid there aren’t any good answers! I wonder if he could be coaxed into taking an interest in someone else there. If he likes helping, maybe there’s someone he can help. Then he’d have a way to contribute and might feel better about himself there. No idea if this would work. It’s just a thought.
He pretty much keeps to himself there. “No” is his usual answer to suggestions. He does like the ladies & had his eye on a woman there -who then suddenly died. The guy can’t get a break. Yes, his mind is surprisingly intact though he does forget things.
So I never met your dad, but I love his unrelenting spirit as you described. I know Rosie from high school and see your dad in her. This time is indeed a learning experience and I wish the best for you all. He has had a wonderfully fulfilling life and family it seems to me.