|Published June 8, 2004|
Of course, people should talk to a neurologist for an expert opinion. Nevertheless, I am trying to learn what I can so that I can point people to resources.
More and more I am seeing the value in dementia memoirs, written by caregivers. Although published in 2004, I recently got my hands on a copy of The Story of My Father by Sue Miller.
The author describes her relationship with her father in general and her need to respond to his Alzheimer's Disease in particular.
Her father had shown memory problems for years. However, no one suspected a problem greater than normal aging until he was found lost in a rural area of Massachusetts, miles away from his home.
After several weeks of working with his doctors and trying to sort out what might be a problem with medication or other health problems, Miller finally saw dementia caused by Alzheimer's Disease as the most logical explanation for his cognition changes.
Miller and her sister have to convince their father than he can no longer live at home. He keeps persisting that he doesn't want to be a bother. This self-effacement was consistent with his personality, and he maintained that trait even as his illness progressed.
As a scholar (a church historian who worked in a university setting), Miller's father kept an interest in books, even when he lost the ability to read. He would ask for new glasses since he couldn't "see," and he would wander around the assisted living facility, trying to find the library. I have read other accounts of people with dementia trying to maintain life-long habits and interests as well.
That's a theme that reappears in Miller's memoir: What personality traits does her father, James Nichols, maintain and what does he lose? Miller catches herself describing all negative language and behavior so the dementia and all positive language and behaviors to her father's core being.
As with each dementia memoir I've read, Miller discusses Alzheimer's Disease's threats not just to personality and identity but to relationships and to personal dignity. She also wrestles with the judgement calls necessary to weigh safety against self-determination. It is never pleasant to reduce another person's freedom, but sometimes it's necessary.
So we watch Miller as she helps her father move to another state to be with his other daughter and then into assisted living where Miller arranged for a personal aide and then finally to skilled nursing where he received a much higher level of care.
Her father never lost his ability to recognize Miller, but he did fail to communicate symptoms to Miller and to staff members, which led to his final illness.
Meeting Dementia's Challenge with a Memoir
Films Depicting Alzheimer's Disease and Other Dementias