Archive for September, 2015|Monthly archive page

A long road

The signs of Mom’s decline are not just behavioral. Her skin seems to be breaking down. She still has one wound on her foot that won’t heal, and another wound has opened. She also has black spots on her feet – a sign of deterioration under the skin. And she has an abrasion on her knee. I thought I might have caused it – I wheeled her into a table by accident on my first attempt to “drive” her wheelchair. She yelled out in pain, but I would never have guessed that it broke skin – a bruise, maybe. But I think it doesn’t take much to cause her body harm at this point. A nurse thinks it might have resulted from Mom’s knee hitting the wall next to her bed, so the staff have put an air mattress between her bed and the wall.

Mom has been moved out of the Program Area at the Alz center – the bustling, open space that houses most activities and patients who are fairly mobile and functional. The social worker called to ask me if it would be OK if she moved to the skilled nursing side of the building, the place many patients go when they have declined substantially and require more care. I guess I could have said no, but I think deferring to the facility’s request makes sense in this case. She is too much for the Program Area staff now.

Leaving the Program Area is a loss for me, if not for Mom. She has been there for six years so I am familiar with patients there, and the staff, and the atmosphere is welcoming. But I like the idea of Mom having more care, especially with her skin problems and the potential pain they’re causing. A nurse called me today to tell me about the second wound, and I asked if these wounds hurt. She said she will ensure Mom is being treated for pain because we just can’t tell. But chances are something like this WOULD hurt – assuming pain signals are normal, which they might not be.

Mom is in a new dining room for meals now, and I have fed her there twice and missed one week while I was sick. In the two weeks between lunches, she deteriorated visibly. Yesterday, she seemed to be in distress – she was tense, which I attributed to her probably being cold, and she had more than the usual number of involuntary whole-body tremors. She kept her eyes closed and her head tilted back, and occasionally let out a slow moan. It was terrible. She did not do very well chewing meat – a first in my experience – so I fed her mashed potatoes and a few carrots and lima beans, but focused on giving her the whole bowl of high-calorie cereal – the consistency of cream of wheat – that she gets with every meal and the filling from a piece of apple pie. I do believe she will still appreciate a sweet taste in her mouth. It was almost as if she was just refusing to wake up, but it created a choke hazard, I thought, because she would not raise her head. In fact, for most of her meal, I stood and kept one hand behind her head to keep it as upright as possible. I couldn’t tell if she just refused to wake up or was unable to, or if even in an awake state, she can no longer control her body in the way she wants to.

The nurse who called today said the skin problems could be a sign that Mom might be ready for hospice. I have wondered what would trigger that. The nurse seemed to be treading lightly, and I told her: “Don’t be shy about talking about this. I think Mom’s existence at this point is awful and sad, and I wish she could fall asleep and not wake up.” I’ve said that before to friends, but I don’t think I’ve written it, and I’ve never said it to the staff. And she said, “OK, good to know. I wasn’t sure.” I’ve known her for awhile, but we are bonding a bit more now in talking about Bonnie and how to make her as comfortable as possible.

Another daughter was in the dining room with her mother yesterday, and we caught up briefly. We both used to go to support group, but we’ve both stopped. Her mom looked alert and is a good eater, but she has been in a wheelchair for years. She spent six months in hospice but was released because she kept surviving. I said about Mom, “She’s a wreck. I have never seen her this bad.” And she said, “It’s a long road.” You better believe it.

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