People fear Alzheimer’s disease more than almost any other disease—with the possible exception of cancer—and with good reason. The fears that Alzheimer’s arouses are fundamental and existential. The disease takes away, one after another, a person’s memory, cognitive function, self-efficacy, ability to care for him- or herself, and even his or her personality. There’s no cure for Alzheimer’s, and the treatments that exist so far only work--when they do--to slow down the symptoms.
Paradoxically, this disease we fear is something that can’t even be definitively diagnosed. The characteristic plaques and tangles can only be positively identified on examination of a patient’s brain after death. A dementia diagnosis is the best that can be given.
I began this journey into the unknown with my mother three years ago. It began with a bad fall she had, resulting in her being hospitalized for four days. When we brought her home she didn’t recognize her own house. And this wasn’t a momentary thing. It lasted for weeks. At my wit’s end, I made an appointment for her with a neurologist at our state’s best private psychiatric hospital.
The neurologist looked at the brain scan the hospital had taken. He said that parts of her brain had shrunk. He gave her cognitive tests. Then he told her, flat out, “You have Alzheimer’s.” I was shocked and angry at such a blunt statement, particularly since I knew it was so difficult to diagnose. But it seemed to slide right over my mother. I guess one of the few blessings of this disease is that eventually you forget that you have it.
So we don’t really know what kind of dementia my mother has. I suspect it isn’t Alzheimer’s because her personality hasn’t changed. It makes it much easier for my husband and me that she doesn’t curse at us and accuse us of keeping her a prisoner in the assisted living facility, as some of the people there do. In fact, it seems to have brought her some kind of peace. My anxiety-ridden, worrywart mother now seems content, having forgotten all the losses in her life, including that of her son. So does that mean that her personality has changed after all, but in a more positive way? It’s a small thing to be grateful for nonetheless.
This month I concentrate my blogging on my experiences with my mother’s illness over the past few years. I don’t intend this to be a day-by-day chronicle of loss, deterioration, and sadness but a dimensional look at what her life and mine are like now, as well as how they were before this illness struck her, and even how in some ways I feel I’ve become a better person through this experience. For one thing, I’ve now made helping Alzheimer’s research a personal cause. Last fall I participated in fundraising for the Alzheimer’s Association and was able to contribute more than $200. I now give a monthly donation and sent another in honor of my aunt who just passed away. I intend to find more things I can do for the organization or for individuals afflicted with this disease. Every little bit will help toward finding a way to eradicate this terrible scourge.
I hope you’ll follow me on this alphabetical journey through a new territory for me, and I hope that those of you who are also touched by this disease will add your own thoughts and stories on how you’ve coped with it.