Mondays With Mother: An Alzheimer's Story

In 2002 my mother was diagnosed with Alzheimer's. It is a hard road, and we live it one day at a time. This is a chronicle of her disease and my Monday visits with her.

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Name: Anne Robertson
Location: Plymouth, Massachusetts, United States
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Friday, October 15, 2004

Day Care

Everything has seemed to move very fast for my mother. There are people in the church who were diagnosed with Alzheimer's long before she was who are doing much better. When she was first diagnosed, they called it "mild" and prescirbed Aricept. Of course with a drug that is supposed to simply slow something down, it is hard to say whether it is working or not. I will say, however, that if that was "slow," I would hate to see "fast."

It was less than a year before the neurologist changed the category to "moderate" and put her on the new drug Namenda. In the meantime, things at home became harder to manage. I am so thankful for David and his daughter. David is retired and his daughter works only part time, so they have been able to care for my mother long past what I would have been able to provide. But even so, it was hard.

At first her problems were limited to left-brain activities. She couldn't follow directions or keep track of what day it was. She complained about the terrible calendar makers who couldn't make one that was easy to understand. She once argued with David for an hour about what day it was. They had to call me to settle the argument. It would literally take her all day to prepare to go someplace. But in that stage, she could still hold an abstract conversation quite well. She still went to Bible studies and contributed. She contributed the same story frequently, but it always had a connection to what was being talked about. And she remembered the Bible. She could also talk politics and would describe in great detail the shows she would watch on Animal Planet or other documentaries on the natural world.

At her initial neurological assessment, when the doctor went through the series of questions they ask of you, she came out and gave the following report. "She did well in some areas, not so well in others. She couldn't name the President, but that is only because she refused to say his name aloud!" So at Christmas dinner, 2003, I knew things were changing when she didn't engage the political discussion around the table. All she could talk about was the mundane stuff of the meal..."The ham was good." "I like the gravy."

More and more she looked vacant, and the things she did say began to trail off at the end. Once an English teacher, she could now only reach for the connecting phrases of a sentence..."It seems clear that," "we're trying to plan for," "it's happening soon"...but there were no more nouns. They were out of reach, somehow, and her sentences just started ending in the middle of space.

At home she had more and more trouble sitting still...always up looking for something she couldn't find, feeling that she should be doing something but couldn't figure out what. She never did have what most would call a leisure activity. She went full tilt all her life, volunteering with the church and in school extra curricular activities, helping counselees of hers that were down and out, doing prison ministry. When she retired from school she got a real estate license. When she retired from that, she got a job as the Mission support person for the American Baptist Churches of Rhode Island. She retired from that to marry David and become fully immersed in church work again, now as the pastor's wife. She was not a homemaker, nor did she ever take to any activities where you just sat quietly. So she can't do it now either. She knows she should be doing something, but she can't figure it out.

The wandering created added burdens at home. Where was she? What was she doing? Where was she putting those papers? Was she going near the stove? Actually, that was one thing we didn't have to worry about. She always hated cooking. Neither of us has a domestic bone in our bodies. When the doctor told her she was not to do any more housework, she laughed and said, "That's okay. I never did any in the first place!"

But the strain of having to watch her every minute was taking its toll, and we began to have conversations about a way to give David and Laurie a break. The first week of October, 2004, she began going to daycare two days a week. A bus came and picked her up in the morning; they fed her breakfast and lunch, and then brought her back home mid-afternoon. That brought some welcome relief, but we all knew it wouldn't be the last step we would have to take.


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