Husband was diagnosed with Progressive Supra Nuclear Palsy in 2002. It is a progressive neurological disease similar to Parkinson's (probably from agent orange when he served in Viet Nam). He did fine for a while and then the decline started eleven years ago. He is now in stage 4+, has dementia (thankfully, not Lewy Body) and is considered clinically blind, as he can rarely open or keep his eyes open (part of the disease) - so he cannot see. I've kept him at home - eventually with the help of a part time caregiver. We have no children or close relatives. Most of our friends are our age or older. His PCP and neurologist have told me for over a year it is time for him to make a move (which he adamantly does not want to do). With covid I've prolonged the decision, but I can't much longer. I know every circumstance is different, but I'm looking for a way to make the transition happen. In the past, we've visited a few group homes (and no, I have not found the perfect one, but then as my friends tell me - I never will). On good days, he can still understand some things. Is it best to tell him - he will be relocating or move some of his items in to his new room and we just drive there one day and he doesn't come back home? It all sounds so hard and cruel. I can't seem to find the words to have this conversation. He was always in perfect health the first 40 years I knew him. He never thought this would happen to him, but has never said 'why me'. He just always assumed I would be there and take care of him. As long as I am alive and in my right mind, I will be there for him, but cannot continue to do the day to day physical work (along with everything else) anymore. I will oversee his care. Thankfully, I am still healthy for a 70 year old, but something could happen in an instant and I/we need to be prepared as well as we can for it.
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My care giving is much less than yours but I imagine that all levels of caregiving a person in decline is much harder than we think it will be. When mom moved in with me, I had no idea what I could/would really be dealing with. I always was a "NO NURSING HOME. EVER." type of gal, but this forum and my experience and seeing the writing on the wall has changed my opinion to a much more realistic one. No one wants a facility for themselves or their loved ones but is a necessity in so many cases.
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There may be mourning, tears, rage. Is this grief not worth that? You have tried all you can, witnessed the deterioration and losses over and over. Have you done that without grief? I doubt it.
This will be hard. You cannot expect it to be anything else. You have done your best. It is time. It is time for you to accept that you have a right to preserve some life for yourself while you are able. I am so sorry for this grief. And remember, when you use a G word be sure it is grief. You are not a felon and this isn't guilt. You have done nothing wrong. I am so sorry.