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.”
,