Friday, March 24, 2017

A burden on the soul

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.

Next week Paula and I will be in Washington, D.C., advocating for Alzheimer’s funding and related issues. My next post will appear on Friday, April 7.

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