OK, that's while I'm still here. But what will happen to him when I'm gone? I am having intense conflict about who should act as trustee for him. Getting a stranger, a fiduciary, is mostly for someone who is still able to live a fairly normal life and live on one's own, thereby incurring debt and needing someone to take care of finances. That is not the case with Mike. He is house-bound and most often bedridden, he will never be able to live alone or do normal activities. My children intend to keep this house, so he will live here until his condition is not manageable here, and then Medi-CAL will pay for a nursing home.
Professionals I have discussed this with do not think it's necessary to put him in the care of a fiduciary. They want me to pick someone from the family, or someone well-known to us. There are three daughters and the max recommended trustees (or even allowed) is two. While they have done a tiring, frustrating, emotionally exhausting, physically demanding job with him for the last 10 years, they are wanting to do less and less and he is needing more and more.
I am day shift, I work from early morning to late at night sometimes. I have had to take on more and more as they are burnt out. I still have not finalized the arrangements. I am paralyzed by the fear that Mike will suffer in every way when I am gone. I am beside myself.