In memoriam: Wendy Mitchell, my fellow dementer and zoom-panel buddy, died on Feb 22nd after voluntarily stopping eating and drinking (VSED)

Wendy was her own indomitable self both in her daily- and public lives. I’ll tell more about her below, but first I want to tell you how I know Wendy. I have never met her in person. But I know her as my fellow dementer who usually came out with the most honest, wise, and original remarks during the handful of zoom discussions in which we’d both participated. I’ll also miss her blog posts. She wrote mostly about her “trundles” among the fells and lakes that surrounded Walkington. She walked as often as she could. Sometimes she could not summon the wherewithal to venture outside at all. When she did have the energy, she would set out with her wide-legged, rolling gait, her Nikon around her neck. The awe that she captured in photos of her natural surroundings, together with her whimsical descriptions on Which me am I today, show her as an example of someone who followed André Gide’s precept of “embrac[ing] joy as a moral obligation.”

Wendy loved gardening and was sad when the could no longer take care of her plants. However, in typical Wendy fashion, she accepted the help she needed and focused on the other things she could still do.

It’s important that I tell you that while I am sad about Wendy’s death and think about her frequently, my “grief” for her is (merely) melancholy and does not even register on the scale of the sorrow her daughters and others who were part of her daily life her must be experiencing. She remains in my mind for a reason that my friend Shen summarized for me in a line from a poem when I told her about Wendy’s death and how I felt about it: “It is Margaret you mourn for.” Though I had not at the time know the Gerard Manley Hopkins 1880 poem “Spring and Fall” (thanks, Shen!), I got it that the line perfectly described my feeling: Hopkins—an “old man” of 36 when he wrote it—mentally poet-splains to “the young child” Margaret that her “grief”over trees losing their leaves at summer’s end stands for a greater loss, a future deprivation that she senses more than understands: she, too, is destined to die, even though she does not yet have the vocabulary to differentiate her mourning for the trees’ “unleaving” from her grief for the dread she feels. In time she would acquired the vocabulary to put words to her apprehension. When Shen quoted the line, I felt heard—she heard that Wendy’s death translated to me as a preview my own death, a voyeuristic look at my own future: Wendy was booby-trapped by dementia in a way similar to my own entanglement with it. Her self-death echoed what I would eventually want for myself. “It is Gerda that I mourn for.”

Wendy reveled in the fact that villagers she came across during her “trundles,” who were unaware at first of her dementia diagnosis, described her as “the lady with the camera.” Learning that she posted her images and descriptions on her blog and other social media, they used her observations as a guide to where the bunnies and ducks and daffodils were seen at the break of each trundling day. Here is a link to one of her posts (randomly chosen) to give you a flavor of the joy she found in the world around her: “A trundle on a cold grey day“

Wendy’s public sharing of the daily impact of dementia, as well as her fortitude of taking on the very tough mission of finding  joie de vivre in sometimes n0-win circumstances, broke new ground in dementia education: in addition to her blog, her advocacy consisted of three straightforwardly honest books (Someone I Used to Know, What I Wish People Knew About Dementia, One Last Thing: How to live with the end in mind), book tours and readings, invited speaker engagements, and her once-a-year fundraising for Dementia UK by accepting “’wacky challenges,’ i.e., daredevil stunts that included walking across hot coals, skydiving, wing-walking and, last autumn, a swim in Derwentwater after she was forced to abandon her abseil down the Leadenhall building in London (the “Cheesegrater”) due to technical issues (theirs, not hers).” She ascribed her fearlessness to already having faced the worst: her dementia diagnosis.

Wendy Mitchell (third from the left with red jacket) walking the 1,000ft highwire across the Infinity Bridge in Cumbria. “The hardest thing I’ve ever done.”

While I take Wendy’s word that walking the high wire was physically and emotionally her hardest public endeavor, I believe that her decisions about when and how to die after a fall down the stairs at her home 3 days before her 68th birthday in January this year must have been even harder mentally, particularly when we learn that she’d had planned a legal assisted death in Switzerland for “the beginning of the year,” that is, more or less in the period during which she ended up falling, Waking up in the hospital with two broken wrists and damage to her neck and spine, she knew that she could no longer undertake her planned travel. While she might still have been able to execute her plan with the help of her daughters, she’d been adamant from the start to undertake her last trip on her own: “I would never ask my daughters or anyone else to fly with me, because of the complexities of the law when they flew back….In the end, after my accident, the only choice open to me was to stop eating and drinking.”  About her decision to call it quits, she wrote, “I wasn’t depressed, I wasn’t forced or cajoled in any way whatsoever, it was solely down to my choice. I was ready.” Since she’d always been “a kind of glass-full person,” one can imagine that Wendy might have zoomed in on one advantage of dying at home: unlike Switzerland, her daughters would be “there with me, holding my hands in my final moments.”

Like Wendy, I have a preferred and a back-up plan for my own self-death: I would love to take the quick path of taking a lethal dose of hoarded prescription medications together with breathing a lethal gas. For that, however, I must still be able to do all the steps by myself so as not to legally jeopardize my family. If I should lose the ability to swallow or if my hands would no longer be functional enough to set up the gas, the only option for me, too, would be VSED. In her final blogpost, Wendy noted that she had lost her taste and hunger a long time before her decision to die. “I don’t feel hunger or thirst, meaning that part of [VSED]would be less stressful for me than for others.” In an article in the Guardian, she described her daily eating habits: for breakfast, she makes herself a glass of tea. Lunch is more tea. “Supper…is always a carton of microwaved soup into which [I] empt[y] a pre-cooked packet of rice, and a slice of bread.”

The invincible Wendy after her return home from a week in the hospital. The photo is on Instagram with the comment, “My first wheelie trundle to feed the ducks…” Given that her fall took place on Jan 28th and she arrived home on about Feb 4th, the wheelie outing must have taken place during the first week of February. She would be dead at the end of the 3rd week of February. Given that VSED takes about 2 weeks from start to death and that she died on Feb 22nd, she must have been  on the verge of stopping eating and drinking at the time of this trundle. May I be as joyous and sociable as Wendy when I will have decided the time of my death! (Just so you don’t send me the number of Suicide & Crisis Lifeline, I assure you that I have had a good quality of life for the past month or two….No death-dates on my calendar!)

Compared to Wendy, I eat like the proverbial teenage boy, pig, horse—a whole barnyard of voracious animals. It is true that when I undergo periods of serious digestive  issues, I sometimes can’t eat and don’t want food for a day or more. But within a week or so I’m back on my feed. I think that VSED will be very hard for me. I also think it is a very difficult form of support to ask of one’s family. I hope that I will have the discipline to do it should that be my best option. Given that VSED is the only legal way of ending one’s life in the US when your terminal illness is dementia—and provided that you don’t end up in a care center that doesn’t “believe” in it—society and the law are so far still open to it. Does it help VSED’s acceptability that the person choosing to starve and dehydrate themselves undergo a certain amount of suffering? Does mental and physical distress, in the eyes of our society, better  justify a self-death than a quicker and much easier method? To Wendy, none of this mattered. As she had embraced joie de vivre all her life, at the end she also celebrated joie de mourir.