No Relief--Just Frustration

Somehow I thought finally getting Mom to an Alzheimer’s specialist and having a professional diagnosis would be a huge relief. We had fretted and sidestepped issues for years, with Denial as our method of handling of choice. As distant as ten years ago, Pop remembered Mom scheduling an appointment and then recording the date incorrectly. They drove fifty-five miles to see a doctor on the wrong day.

Through the years we gently jested about Mom’s memory. She actually laughed, too, making reference to some things she just could not seem to remember any more. She attributed it to age—like everybody else’s memory when they get old.

There were quite a few years that no one could tell anything was wrong, outside our immediate family. She was always very outgoing and always enjoyed being the life of the party. She was able to continue socializing without letting anyone know of her memory loss, mostly, I think, by keeping the conversation on a rather superficial level.

When things started to be more noticeable, the two quit going out with friends so much. One excuse was that it was so hard to hear in restaurants. They still went to church, but they would leave as soon as it was over, not stopping to visit with anyone. I suppose they felt no one would notice anything different. Though they never discussed it, we were aware that no one was supposed to know.

There is a stigma attached to Alzheimer’s disease that is more prevalent in their generation than in mine. Only in recent years has the disease begun to be understood and knowledge of it disseminated, via the internet mostly. So people in their eighties, who do not usually become as familiar with computers as the rest of the world, do not have an updated picture of the disease. They still think people will think they are crazy or unable to function normally.

One article I read, dated March 21, 2006*, reported on 539 caregivers of either a parent or a spouse. Among the findings was that the caregivers’ concern about Alzheimer’s stigma delayed diagnosis by up to six years! This in itself is an unnerving fact. Six years’ delay in treatment is especially significant, since most of the medications right now are designed to maintain the status quo.

In our society, with its increasing emphasis on youth, self-control, and productivity, it is sad to think how our older citizens must feel as they become less productive and less in control of their own lives. Down deep there is a fear that people will treat them differently, “if they know.” And this fear is based on their perception of the disease, which means it is the truth for them.

* “Stigma May Slow Alzheimer’s Diagnosis,” http://www.medscape.com/ .