complications again

John took his aunt to the local urgent care last night because she had so much pain. Urgent Care had taken an xray Sunday and said there was no fracture, but in the meantime they got her previous xray and a radiologist read them and found two partial fractures of her pelvis in a different area from the one in January. She seems to be managing ok at her apartment. John asked me to go this evening help him talk to her about getting more help. It turned out that John didn't know that she is already using some help from aides. But then again she had washed out her own underwear today. I stressed that I think the best option for her is to stay in her apartment with help from aides. She hated the nursing home unit of the retirement community so much.

I'm trying to remember that it may be true that if I don't do it myself it won't get done right, but that is ok.

book: Three Dog Life

I'm reading A Three Dog Life, by Abigail Thomas. Her husband suffered a traumatic brain injury, which left him unable to care for himself and psychotic. She writes about how her life changed and about her dogs. To me, her story seems a bit muted, with the dogs for light relief. I would have liked to hear more of the raw pain. But that is me; I suspect what she provides is all that most readers want to hear.

I do like her honesty about the process of learning what she can do and what she cannot manage, coming to terms with her husband staying in a facility. She says she couldn't bring her husband home: "I wouldn't be Rich's wife; I would be his jailor and my own. This was a sacrifice that made no sense; I couldn't do it." She says it took her years to be able "to say the words I want to live my life without feeling unnatural, selfish, cowardly."

What seems to have brought her peace was feeling that her husband would have more appropriate (specialized) care at the facility than at home. I wish I thought that was usually available when needed.

focusing on the future

In a group I was in yesterday, someone said: "Don't be anxious, God has a plan." Or from Exodus 14:14: "The Lord will fight for you, and you have only to keep still." (New Revised Standard Version)

I am anxious about the future. One of my reactions to the diagnosis was that I want to spend six months getting things in order, before focusing just on living in the present and taking advantage of the time we have. I've actually made some progress. I met with our lawyer and found the only thing I needed to do was to change my power of attorney from John to my sister. I haven't started working on the question of whether we should stay in this house or move, but I've got some idea of what the next steps are. We are making progress in getting our financial affairs in better order. The financial planner is looking into an impaired risk annuity for John's retirement savings. I just heard that I was approved for long-term care insurance at the preferred rate--too late to get it for John but I now have it for me.

But I can't imagine what I will do when John needs full time care. I thought I could do some research and at least understand the options, but I'm not finding decent options. I don't want to retire. There is adult day care in the area, but I wouldn't be able to get him up and there and still get to work at a decent hour--I'm an early riser and he isn't. If he needs more than a sitter, full time care at home is likely to be too expensive. The local nursing homes don't have separate dementia units. I hear the closest nursing home with a good dementia unit is in a city 40 miles away. I guess it is time to call the Alzheimer's Association, as the most relevant organization that is actually on the ground here.