Hi everybody:
My mother has made it to a rehabilitation hospital. After her rather horrible treatment by the medical establishment at two hospitals, I can't say enough good things about this place. Both the care and the communication are wonderful. When we come to visit, the staff makes a point of seeking us out to tell us how she's doing and what is planned for her.
It is very difficult to say how far my mother will come back. At this point, she can barely put any weight on her legs. She was in bed for 32 days, had several seizures and possibly a minor stroke, as well as the initial brain damage from the precipitating event. While she has made remarkable progress, she is not the same person, and I think it's a pretty safe bet that she will never be that person again.
She will never live in her home again, and this brings up a very difficult issue. I can't really bear the thought of seeing her live in a nursing home. She is far too "present" for that. She will know exactly where she is and why, and I think that may destroy what mental capacity she has left. There is a strong history of severe dementia in her family, and I don't think it would take too much to push her in that direction.
So that leaves two options, as far as I can see: high-end assisted living or living with one of her children. That would be me. My oldest sister and my brother won't do it, my middle sister can't do it (a variety of reasons, the main one being that her husband is already the invalid-in-residence in that household). My husband is being absolutely wonderful about this. He said recently, "You always told me that you wanted to take care of her when she needed you. Well, she needs you." We're doing research on ways to make the house more accessible (stair lift, first floor shower, etc.).
High-end assisted living is unbelievably expensive--almost as much as a nursing home, and with no state assistance to pay for it. I think that financially it would be out of the question. So that leaves living with me. I want to do this, and I feel it is the right thing to do if it is possible. I can't turn my house into a nursing home; I can't afford 24-hour care. (My mother has almost no assets and a limited income, and my siblings have made it quite clear that they can't contribute very much.) If my mother recovers to the extent that I can hire an aide for, say, six hours per day, and she will be OK for the rest of the time I'm at work, we might be able to make it work. Logistically, anyway.
But oh, I'm scared. I'm afraid that I won't be up to the challenge, that all the issues I've had with my mother will surface again, and I won't be as patient as I need to be. I'm afraid that my husband's good intentions will crack under the stress of the day-to-day. I'm afraid that my siblings won't cooperate at all, and so I won't have any time to myself ever again.
But I see this woman who is suffering, and I want her to live with dignity, surrounded by people who love her. It rained, hard, the other night, and I sat on my bed listening to the rain wash over my roof and through the gutters. It's a lonely sound, and it made me grateful to be in my own house, in my own bed, with my husband downstairs. And then I thought of my mother, alone, in a strange place, in a strange bed, with no one to come and tell her that she's safe, that it's just the rain.
I want to bring her home, but I'm so afraid that if I do, I will be signing away my life to her care.
I'd be very grateful for anybody's thoughts or experiences.
daylily
