The long, lonely road

It’s been almost 13 weeks now since my mother had her stroke.

She’s still in the hospital and will be for the foreseeable future. Eventually  she’ll be moved to a nursing home and, realistically, that’s probably where she’ll live until she dies. She thinks she’s going to die in the hospital. Some days she’s sure she’s going to die right now.

She’s slowly getting some movement back in her hand and leg. Each day brings a new positive sign that things are healing. Slowly, but every tiny movement forward is still a movement forward. Her brain is still sorting things out, though. Hopefully, with time, it will begin to re-establish or remap the connections it lost to the stroke. For now, though, most memories go immediately into long-term storage, bypassing short-term completely so she might not remember what you told her a few minutes ago, though she will in a few days. For now, her brain and her eyes are not always in accord. She sees things that aren’t there and misinterprets what she does see. And for now, her brain is frequently in a world of its own. She’s overwhelmed by paranoia and vivid dreams of conspiracies and drama that she can’t always separate from reality. It’s a lonely world when people don’t believe you.

My father took his first “day off” on in 3 months on Saturday, finally letting one of my brothers and my sister step in to keep my mother company for the day. He slept well and puttered and rejuvenated, but it’s clear that things are wearing him down. Learning yesterday that bringing her home is likely never going to be an option changes his world even more than it had been. Waiting lists for nursing homes are long and you don’t get on the list until the letter that the hospital has done all it can do is processed by whatever palliative care organization needs to process it. Once she’s finally on the list, half of her and my Dad’s income will be taken to pay for her room and board at the hospital and then at the nursing home, which will force my father to give up their apartment and move somewhere that his pension can afford (perhaps one of my siblings’ homes).

I’m not in a position to help, either financially or in person. So all I can do is be there for my Dad to talk to, and be there whenever my mother wants to talk to me. But it’s frustrating and sad and…and…well, and whatever else it is. (I’m tired and not particularly coherent right now.)