This is more catharsis and any general advice appreciated...
Mom has dementia, is 90 and has now been in NH for a year after going to rehab after a fall. I am the close by caregiver daughter, my brother lives a few hours away. He's very supportive but not here. She remained ambulatory and had language and could chat, and would sing songs she recognized through the end of 2018. She stopped recognizing me consistently sometime in the fall. After Thanksgiving she stopped eating consistently. The NH tried some interventions to stimulate her appetite but because she did not have a medical need, they could not provide someone to sit with her to try to get her to eat. They recommended we hire a private aide to try to get her to eat, but that is not covered and we could not afford that. My brother and I agreed, based on my mother's inclinations, that we would not do a feeding tube or use other artificial means and unless she was obviously in distress we are not sending her for tests and scans. Her hemaglobin levels are very low so after a few weeks of talking about a transfusion we said give it a try and they sent her to the transfusion center. I did not go with her; It did not go well, she refused care, was shuffled around and did not receive the transfusion. I think it was too confusing and upsetting to her; they may have tried to use her bad arm; who knows. I think it caused a bit of PTSD because after that she started refusing food altogether. As of today she has not had a real meal in two weeks. I have spoken to the NH consistently and they recommended putting her on hospice. We cannot get her to eat more than two bites or two sips at a time, then she refuses more and then she gets agitated and seems to experience gas pain.
I met with the hospice nurse today, they took mom off the saline IV as part of the comfort care protocol, she did order some meds for the gas pain (and I am really ticked off at the NH doctor who I kept asking about this!) Mom can sit up but too weak to get out of bed. Hospice will try to get her out of bed for a little bit, they will try to get her to eat. They will give her meds if she is in pain. In one respect I know this is probably the best course, but in another, it is still hard. I read everything but wonder if I am asking the right questions, am I missing something, is there more to be done for her?
So if anyone has any thoughts - it is appreciated, and like so many of you, I do feel guilt and responsibility. I did not do enough, I mostly only visit once a week. I rarely am there on a weekday. No matter how much someone tells you "you should not feel guilty", "you did what was best", it is hard when you read how someone else got all kinds of help to keep the parent at home, or are caring for them in their own home, or are at the nursing home every day.