As I was writing this post, I was drawing on a slender document titled, “What If I Had Dementia?” Since I do have a form of dementia, this is not just a thought experiment. The organization’s website shows a soothing scene, with tendrils of low-lying land forms wreathed with mist against a deep-green forest and what looks like a Scandinavian fjord.
The prose is intentionally bland. The document notes that years of life, post-diagnosis, varies widely, from up to an extreme of twenty years. The average time to reach the severe form of the disease is about eight years. But it’s worth mentioning that some individuals turn out to be outliers. Muhammad Ali, the most famous boxer of all time, surely is in this category. Ali was suffering from Parkinson’s disease, not Alzheimer’s, but he was clearly demented when he died at age 74.
Barring a major research breakthrough in the near future, those of us with Alzhiemer’s now are very likely to die from the disease, unless some other disease or fatal accident puts an end to our lives. As the document notes, some patients lash out aggressively at loved ones, adding to the stress for caregivers and loved ones alike. And, of course, spouses or adult children often serve as caregivers, typically without compensation.
The central question posed in the document is, “What kind of medical care would you want if you were to develop worsening dementia?” Under these circumstances, it’s important to be crystal clear about your intentions. As the document notes, those of us with Alzheimer’s or another form of dementia, should make clear, in writing, to make sure the person’s intent crystal clear. Paula and I are on the same page when it comes to the terminal stage of dementia. The last thing I would want to be is a burden on my family—neither physically, emotionally, and, especially, not financially.
A couple of other comments: First, early-onset Alzheimer’s is not mentioned. This is no surprise. I’ve heard from people working in health care who are not aware that symptoms of Alzheimer’s can present themselves as early as one’s late forties. And these days, news articles about Alzheimer’s seem to be omnipresent, especially in the Boston area, home to many hospitals and research institutes and universities.
But I found the survey is a little confusing, pertaining to having mild dementia. Who wouldn’t want to live through the early stage of the disease? That is the period when the disease is least worse. The reason people fear the middle stage is obvious: It is a downward promotion, and an implicit message: The next two stages will be worse. With this understanding, I named this blog, “The Diminishing Window.” Now is the time to make hay while the sun is still up.
To view the document in question, do a search for “Health Directive for Dementia.”