Life After Mother—

Managing Chronic Fatigue Syndrome and an Estate

Getting my mother’s estate in order would be challenging enough for a person in perfect health, but my health is compromised by Chronic Fatigue Syndrome, CFS. Although it affects more people than AIDS or breast cancer, CFS remains a puzzling and underdiagnosed threat to public health. Even its very name generates controversy, because, as Karen Lee Richards, co-founder of the National Fibromyalgia Association, has explained, “The name ‘Chronic Fatigue Syndrome’ trivializes a serious illness by naming it for one of its symptoms, namely fatigue … Since CFS is not a medical-sounding name, family members, friends, even doctors, tend not to take it seriously.”

Some more medical-sounding names have been suggested, including myalgic encephalomyelitis and myalgic encephalopathy, both abbreviated ME. They’re hard for the general public to spell and pronounce, though, which may explain why those names, although common in Canada and Europe, aren’t commonly used in America.

When I came down with CFS in 1992, I was struck so suddenly and harshly with extreme fatigue that I could barely get out of bed for more than a year. The disease is so debilitating that one prominent CFS patient, Lauren Hillenbrand, who wrote the best-selling book Seabiscuit while in bed with CFS, said she was affected to such a degree she couldn’t have gotten out of bed even if the building were on fire. I’ve heard of patients who have to literally crawl to the bathroom, and have to sit down in the shower. I was fortunate never to be affected to that degree, but some people have suggested I may be suffering a comparatively mild dose.

While the symptoms of CFS may abate over time, the extreme fatigue never goes away entirely. It affects mental effort, too. A CFS patient may be “up to” sitting in bed and writing a best-seller, but not “up to” doing math, making dinner, driving, or preparing a legal case. 

By the time my parents went through their end-of-life issues, I’d improved to where my days were manageable, as long as I set limits and got adequate rest. That means, for example, Sunday is even more of an off-day than for normally healthy people. I’ve just had to learn to live with staying in bed for all but a few hours and never getting out of my pajamas every Sunday. It’s not that I’m enjoying myself, or taking it easy, and it’s not like I’m slacking off, or lazy — it’s how I manage my health. 

When planning your estate, it’s wise to take into consideration the healthcare needs of whomever your beneficiary or beneficiaries may be, because a person’s health may affect the management of your estate. That neither of my parents ever bothered to name me as a beneficiary on their accounts, for example, caused more difficulty for me than for a person in good health.