Dying One Step Ahead of Dementia

Sandy Bem and her daughter Emily one day before she died; photo by Julius Viksne, used with permission

Sandra Lipsitz Bem needed to choose a day to die, and it had to be just right. Too soon, and it might be a day when she still felt basically fine, still essentially herself even as her Alzheimer’s disease implacably ate away at her intellect. Too late, and she might no longer have the resolve, or the understanding, or the physical dexterity to end her life on her own — and she didn’t want to implicate others in her death and risk their arrest.

Sandy, age 69 when facing this decision, was a retired psychology professor at Cornell University, as was her husband, Daryl, then 75. She was the founding chair of the women’s studies program at Cornell, and was a pioneer in gender studies: developer of the Bem Sex Role Inventory in 1974, author of the groundbreaking The Lenses of Gender in 1993. As a couple, the Bems were leaders in the feminist community in Ithaca, active in, among other things, the local Planned Parenthood. Early in their relationship, they were the poster children, quite literally, for egalitarian marriage, when they were featured in the inaugural issue of Ms magazine in 1972 in an article called “A Marriage of Equals.”

Just a few weeks before she turned 65, Sandy was diagnosed with “amnestic mild cognitive impairment,” which her neurologist told her was tantamount to a diagnosis of early Alzheimer’s (and, indeed, an official diagnosis came the following year, in 2010). She was terrified, and she was pissed off — terrified because she feared becoming a person with no mind, memory, or sense of self; pissed off because there was no easy way cut her life short when things got to that stage.

That’s the tragedy of people like Sandy Bem, suffering from Alzheimer’s disease and desperate to avoid a long, slow, inevitable decline. They’re not terminally ill, so even in states that allow physician-assisted dying they can’t get any help. Even activist “exit guides” — who circumvent legal restrictions to help the dying hasten their own deaths — won’t help people who are too demented to understand what they’re about to do. Which means that self-directed death, for someone with Alzheimer’s or another degenerative disease like Parkinson’s or ALS, always has to come just a tick before the last straw.

What led me to Sandy was a paid death notice in The New York Times, written by Daryl with the bluntness I’ve since come to associate with the Bems — and with the intention of thrusting into the public eye the particular constriction of choices for people with dementia. Sandra Lipsitz Bem, it began, “peacefully ended her own life at her home in Ithaca on May 20, 2014, one month before her 70th birthday. She had been diagnosed with Alzheimer’s disease in 2010, and made known at that time her intention to end her life while she could still do so without assistance if and when the disease became too debilitating for a meaningful quality of life.”

I wrote about Sandy Bem’s last decision — to end her life rather than suffer the worst of end-stage Alzheimer’s — in a cover story in this week’s New York Times Magazine. It’s a story that will play out again and again in the United States, as the population ages and cases of late-life dementia soar. Estimates are that the number of Americans with Alzheimer’s disease, the most common form of dementia, will nearly triple, from 5 million today to almost 14 million by 2050, when the bulk of the Baby Boomers are in our late 80s and beyond. And if there’s one generalization that’s safe to make about Baby Boomers, it’s that we don’t like being told what to do. We like to think of ourselves as the generation that rewrote the rules for shacking up, mating, birthing, raising kids, working, and being old. It would be odd to expect us to do anything but try to rewrite the rules for death.

Note: This post originally appeared as a post in Cusp, my blog at the Psychology Today web site.


[rmh2]http://www.cdc.gov/aging/aginginfo/alzheimers.htm

citing Hebert LE, Weuve J, Scherr PA, Evans DL. Alzheimer disease in the United States (2010–2050) estimated using the 2010 census. Neurology. 2013;80:1778–83.

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