My father has been admitted to a nursing facility. It may be temporary, or it may become a permanent state of living. He may be in some stage of dementia and is becoming very nasty. He has always expressed the fear of ending up living in a nursing home, and has made it clear he would rather die, from anything, than end up living that way. So, as his mental abilities deteriorate and I wonder what his future is, I find myself thinking it would be best for him (and us) if he died naturally at this stage of the game, before he falls apart and drags us all down with him. Anybody else ever feel this way? I'm feeling guilty about this.
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There's a wonderful book called "On Being Mortal" by Atul Gawunde, who is a doctor. He talks about a father and daughter who had this hard talk at one poiont when her dad was well. Her dad's idea of qualtiy of life was being able to watch football and eat ice cream. (!). Several years later, he needed some very serious surgury; the the middle of which, things took a turn for the worse. the surgeon needed to ask the daughter which was to proceed. She remembered what her dad said and asked "if things go badly, if you try this risky thing and it fails, will he be able to eat ice cream and watch football?" the surgeon thought about it and said, yes, he certainly would. the daughter was then able to say, with a clear conscience, "go for it!". She remarked later that she would not have gone in that direction had she not known her dad's specific wishes.
Hope that dad continues on the upswing and that you and he enjoy each other for many more years.
With regard to NHs, we tried the 5 star one, and after not having a stellar experience, we went with a lower rated one suggested by the discharge planner after mom's next hospitalization. It's not perfect, but it's smaller, not much staff turnover and has a wound care doctor and geriatric psychiatrist on staff.
One thing to know about nursing homes; you can ask the staff till you're blue in the face, but it's the doctor who writes the orders. Make sure there is an order for a complete assessment of her skin once a week. If it's written, it gets done. If it's not, it seems to be catch as catch can, and sometimes aides and nurses seem reluctant to report skin ulcers on their own because it affects the facility's rating.
Since then, she has had a horrific episode of lung failure, sepsis, but came back with the aid of a bpap in the hospital.
Do I wish we had let her go when she needed the pacemaker? Not sure, because I can't know what the endgame will be. I want to spare her pain and indignity. I don't want to get to where she doesn't know us, or where she thinks we're the enemy. I think that your feelings are completely understandable.