Is it
worse to be the care partner of someone with Alzheimer’s than it is to have the
disease itself? This is not a trick question. Just as some people with dementia
express themselves through blogs, so do some care partners. When I disclosed my
diagnosis on Facebook in 2015, the response was overwhelming. High school
classmates, the vast majority of whom I hadn’t seen since our ten-year reunion
in 1990, showered me with condolences. At my going-away lunch from the nonprofit
where I worked for more than a decade, people complimented me for speaking
frankly about my diagnosis. One colleague referred to my “courage.”
Paula’s experience, since I left my job, has been quite
different from mine. For one thing, I am no longer equipped to deal with
challenging paperwork. Paula and I are advocates for affordable health care,
but we also know that “The Health Connector,” as it is known in Massachusetts,
has a number of administrative flaws. On a number of occasions, Paula has been
on the phone with Health Connector staffers for an hour or more.* I wish that I
could be of more help in this realm, but my “executive functioning”—the
ability, for example, to follow a lengthy cooking recipe—has clearly eroded.
My greatest fear isn’t that I will die from Alzheimer’s;
it’s to live on so long that my personality will have been largely effaced. I’m
still in the first of the three stages of the disease, but this journey does
not provide the option of a round trip. Already I have given up driving. I do
continue to take part in the grocery shopping, thanks to having a couple of
supermarkets less than a fifteen- or twenty-minute walk from our home. Since
Paula works from home, she can pick me up once I’ve done most of the shopping.
No one wants to be helpless, and this week I have been contemplating
the unfortunate statement by Mitt Romney, the former Massachusetts governor,
when he was the Republican nominee for president. Unaware that his remarks were
being recorded, Romney distinguished between “makers”—those who create jobs and
generate tax revenue—and “takers,” who are a drag on the economy.
What do I dread most? It’s not dying. Most of all, I don’t
want to be a burden on my family—or, for that matter, a burden on my soul. I
don’t have much interest in living past my expiration date, if that means that
I will be a drag, emotionally and financially, for many years to come.
*Paula has asked me to add that despite the bureaucratic
headaches, we’re extremely grateful to have access to health insurance through
the Affordable Care Act, or Obamacare, as it’s often called. The affordable
insurance plan our family was able to purchase after my former employer’s plan
ended has covered all of our medical needs, has allowed us to keep our
wonderful doctors, and has enabled us to live somewhat comfortably on a smaller
income. We hope our friends will join us in asking their representatives and senators
not to accept Donald Trump and Paul Ryan’s health insurance plan, which would
make insurance unaffordable for many families like ours, not to mention for
families much worse off than we are.
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