Q Quality of Life
Since my mother’s dementia diagnosis, my top priority has been to try to maintain her quality of life as much as possible. “Maintain” is probably the wrong word--it can never be what it was. Maybe I should say to try to give her some kind of quality for the remainder of her life.
The first concern was safety. She had a history of falling, and after the serious fall that hospitalized her, it was clear that she couldn’t be left alone for long. So when she was released, my husband and I moved into her house with her while we tried to figure out what to do.
I thought that moving her into a regular assisted living apartment would take care of both needs. Yet it didn’t guarantee her safety--she suffered a bad fall her first night there. And at the time it was the worst thing for her psychologically. So I brought her back home and returned to the question of how to balance safety and quality.
Having us all move in together is the answer that my husband and I came up with, and I honestly believe it was the best one at the time, although I went through some disillusionment there, too. I learned that it wasn’t possible to keep her safe without being at her side for twenty-four hours. I learned that I couldn’t always even keep her safe from herself, from her independent streak and her lack of awareness of her own state of mind. I had also imagined, falsely, that when we lived together we would again be able to share some of the good times we had had, going shopping or out to dinner, or just sharing meals together. I hadn’t realized just how impaired she had really become. Shopping trips became a chore for her, one that she soon preferred to avoid. She slept most of the day. And she would usually refuse or just pick at the meals we made for her.
I believe and hope that the quality of her life is better now that she is in a memory care unit. It was hard for me to watch her struggle to get dressed or to make a cup of coffee after her brain no longer held the schema for those things. Now she is taken care of and her needs are met. She seems content.
We all have our own thoughts about what gives our lives quality and what would have to happen for that quality to be destroyed. I think that not being able to read anymore would be one of the most miserable things that could happen to me. But maybe I would find something else to compensate for that loss. We can never judge the quality of another person’s life. Only he or she can do that. Those of us who are charged with caring for someone with a handicap or impairment are always looking into a distorted mirror, afraid that we’re seeing what we might be “but for the grace of God.” I can’t know what my mother’s subjective experience is now. I can only judge what I see of her. I can only feel that I’ve done my best for her. And that has to be enough.