A Year to Remember >
My Mother's Story
How long had our mother had Alzheimer's? My sister and I have asked ourselves that a thousand times since the diagnosis of dementia in 1993. We know it must have been at least fifteen, maybe even twenty years. Her memory had been going for a long time, but she's just getting older, we had thought. Her math skills went first, and she had been letting my sister take care of her checkbook and bills for several years. She had been repeating things she said for a long time, and getting things someone else had told her all mixed up when she tried to repeat them. Living in another state, I looked forward to her letters, but it got harder to read them (She said she didn't have my dad to spell for her anymore. He died in 1985), and eventually they stopped. She continued to call me. But after I moved to Tallahassee to go to Florida State, she no longer called me. When I called her, she would say that she had tried and tried, but she couldn't get my number.
That was four months before her stroke. My sister, who lived next door to my mother, went to visit as usual, but in the middle of the day, she couldn't get my mother awake to come to the door. Finally, she did get there, but my sister thought my mother was never going to get the door open to let her in. Finally she did, but my mother had come to the door without a top on.
My mother was hospitalized for a week. Then she went home, and my sister went through hiring several sitters before she found one that could handle taking care of my mother. Though even at that time she had not been diagnosed and it was thought that there might be a chance for her to recover from the stroke, she was very aggressive and combative. My sister ended up staying with her every night. She hired a sitter to take care of her in the daytime, but the first summer, she took care of her day and night.
I had been at grad school for only a few months when my mother had her stroke. I said then that I would come home, but my sister insisted that I stay at school, saying that she could handle it. I didn't know till later that she was getting physically sick from the stress of taking care of my mother, especially that summer that she did it alone. She lost 20 lbs and began showing signs of age.
Meanwhile, I was trying to finish grad school and work full-time, but I could not concentrate because I felt I needed to be home taking care of my mother. I was the logical one--the only one who was divorced, with no husband or children to look after. My family didn't say this, but I felt it myself. Overloaded with course work, I ended up taking an incomplete in one class, having to stay around a year to make it up, and barely struggling through my classes. Finally I left, needing only twelve hrs. to finish my degree, but knowing I could not wait that long. My mother needed me, and I had to go home.
In ways, my sister had gone through the worst of taking care of my mother, when she was in a more alert stage, constantly having catastrophic reactions and being aggressively combative. After I came home, she was getting into a calmer stage, except at night. The night wandering didn't begin until I came home. And that was good, because my sister would never have been able to work the next day after being up all night with my mother.
I took care of my mother from the end of August 1994 until the end of December 1995. I had turned down openings for her at the local nursing home twice; my sister had our mother on a waiting list there and she had turned down openings a couple of times herself. Then in the fall of 1995, my sister-in-law, a nurse, started working at a nursing home about 20 miles away. She was so impressed with it, and the family, knowing that I was getting tired and my mother was getting worse, decided that we should take the opening there for my mother. That was decided around Thanksgiving, and we put my mother in the nursing home on the day after Christmas.
My mother seemed so unaware of what was going on that day. The Home Health aide came to give her a bath as usual, and then my sister came. She told her it was time to go, and my mother got up from her chair and went with us, not even asking where we were going. She was all smiles as we entered the nursing home. My sister-in law stayed with her all afternoon and most of that night. My mother was her own special patient for the next four months; She even fed her most days.
The first few days went smoothly. But by the end of her first week in the nursing home, my mother was very sick. She was hospitialized with pneumonia. She almost died; the doctor even asked us if she had a living will.
She recovered after a week in the hospital, and she went back to the nursing home, but she was never quite as responsive as before. She probably had a stroke as well as pneumonia, and in the following weeks, she had several small strokes. (We think she had been having some at home, too.) Most of the time it was like she hardly knew we were there. But there were a few times we visited when she was more alert, talking (thought we couldn't understand much she said), smiling, and even laughing, and a couple of times, she even walked down the hall. My sister-in-law said she seemed to like it there and that she really enjoyed the entertainment programs they had. There were only three or four times when she asked to go home, and she had been asking that every day, sometimes many times a day when she was home. There was no more night time wandering, that we know of, though she did hit my sister-in-law a couple of times when she was trying to feed her.
The last couple of times I visted, it was like my mother was falling into a deep sleep, not responding much at all when I held her hand and talked to her. Then on April 23, a little after midnight, she died in her sleep. She had just turned 80 on April 6.
Taking care of my mother certainly wasn't easy, and there were some really bad times, but there were some really good times, too. At times she could be so sweet and loving, and more fun than she had been before her Alzheimer's. I miss her, and I cherish the memories of my year with my mother.
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