A few weeks ago I sent my siblings, son, nephews and nieces an email requesting more help with caring for my parents. The overall response was positive and most of the above-mentioned family members have increased their assistance and presence with my parents. The brother who responded to my email by listing all of my faults as a person hasn't changed his level of assistance, nor has his daughter. I think I've let that go. I think.
I've had a few concerns about the care my father (and mother, to a certain extent) is receiving through his hospice provider. I initially decided to let it go, then an issue regarding his coumadin came up. Prior to becoming a hospice patient, my father went to his PCP's office for coumadin checks and adjustments. He received the results immediately, and if changes needed to be made to his dosage they were made immediately as well. Hospice has taken over the coumadin checks. They come to his house to draw blood, but have to take it back to their lab, run the test, report the results to his nurse who then apparently has to have the hospice doctor authorize any changes to his dosage. The last time this occurred it took about six days for my parents to be advised what his dose should be. In my opinion, that completely eliminates the purpose of instant results and dose adjustment. It also reduces the efficacy of the coumadin.
So I decided to sent my parents' hospice worker an email listing my concerns. This was over a week ago and she hasn't responded to me. My father's nurse and the social worker do their routine visits with my father on Monday, so they saw her yesterday. She advised them of the email she received from me, and because of that email she had to fill out a report describing how she resolved the issues I mentioned. My mother told me that the social worker made it abundantly clear she (the social worker) is "there for them", not me. When I asked my mother what hospice intended to do to resolve the coumadin issue, my mother proceeded to make excuses on behalf of the hospice and told me they're (hospice) doing the best they can and they (my parents) are ok with waiting for the results and dose adjustment if needed.
I guess it was at that moment I decided I can't do this anymore. I can no longer advocate for my parents because it does no good and only alienates everyone from me. Even my parents inadvertently marginalize my efforts, not only to hospice staff but my family as well. Both hospice and my brother have accused me of micromanaging and patronizing my parents. I realize now that's how my efforts are perceived and I'm just too overwhelmed to be the punching bag anymore.
My concern is this: when my dad dies, I will know I could have somehow made the process better for him and my family. I feel guilty about backing off. I know in my head and heart what my skills are and what my knowledge base is. I'm under no illusion that I can make things better, but at least I was trying to do something. Now I can no longer do that "something". Will no longer do that something. I'm also afraid I will catch the blame if something adverse happens that could have been prevented by the efforts I have decided to cancel.
It's sad for me to see this be harder on my parents than it has to be. Now I have to figure out how to not feel guilty about it.