My mother Joyce, who's 101, was, for much of her life, a right-to-die activist. A high-school teacher by trade, she taught a class on death and dying at Kennedy High School in Wheaton, Maryland in the 1970s; I take that to be unusual. She had me read Elisabeth Kübler Ross's classic, if problematic book On Death and Dying when I was a teenager, not because I seemed to be about to lose anyone but because she thought every human being needed to think about this.
She talked to me many times about her own wishes, and those of my step-father Richard, who suffered from post-polio syndrome. This was, for myself and my brothers (all three of whom have now passed away) a feature of our particular family. We faced death squarely, talked about it explicitly, knew it to be and accepted it as a fundamental feature of life. My brothers and my step-father are all buried naturally at the family farm where my mother and I live now; I helped dig all the graves, and I lay in them when they were done.
I know what my mother would’ve wanted, when she was 50, or when she was 60, or when she was 70, if she ended up in the condition she is in now. She’s less and less mobile: down to a few steps on a good day. She suffers from dementia (not diagnosed as Alzheimer's) that has progressed extremely slowly and steadily for more than 20 years. She recognizes me, but no longer remembers my brothers or much of anything else. She can no longer read, her great hobby and interest, and though I still try to read the news and book reviews to her most every day, she comprehends less and just looks blank. She’s confused and under myriad misapprehensions at any given moment. This is exactly the sort of thing she talked to me about, starting when I was a child.
She’s beset, as well, by waves of anger or sadness, and often starts crying and saying that she doesn't know how to get home. I tell her she’s in the home where she's lived for over 40 years, and which she designed herself. She responds that it's not her real home. Can't I help her get home? Or she becomes agitated and angry at everyone and says things like "I hate it here!" She has happy moments as well, and still enjoys food and music, though perhaps not as much as a couple of years ago.
In her filing cabinet there’s a folder she made called "Joyce's funeral." It contains, along with the fact that she wants John Williams's "Cavatina" played, articles about how to end one's life. There’s a formula for a fatal cocktail on a post-it note. I'd recognize the handwriting anywhere, of course. Disturbingly, it seems to be more or less the same formula used in the recent botched execution of Christa Pike. I don't think I can use it, despite the clarity of all this with regard to what she wanted for her own death.
Around age 80, she lost my step-father and had a cancer scare. She also stopped talking about her own death, which had been a very frequent subject of conversation. She started saying things, even to doctors, like "I intend to live as long as possible." She went from blissful accepter to defiant persister. Sometimes, when she’s crying and saying she wants to go "home," or saying other things that make one wonder, I ask whether she's asking me to help her die, and she gets angry: "Absolutely not! I just want to go home! Where are my parents?" This is surprising too, as she was estranged from her parents for most of their lives.
I don't think she's cognitively capable, now, of clearly choosing either to live or to die, but she’s fiercely breathing and eating and trying to refuse help. Back in 2000, I knew what she wanted. I would’ve been prepared to help her die. But now I don't know how to weigh the wishes she’s expressed at various times, and I don't think I can help administer a fatal dose of something if I don't feel that she can really make a consistent or enduring decision.
It's getting harder, and I feel sometimes as though I’m forcing her to suffer, almost like I’m torturing her just by helping her stay alive. But I also can't kill her or help her die. The "living will" she made 30 years ago doesn't seem to me to settle the matter, anymore. Not at all.
When she made that living will, she told me over and over that she didn't want to put her children in the position I’m in now. I've spent a lot of the last five years performing eldercare, as our relationship has become less and less relational and less and less rewarding. I'm pushing 70 myself, and need to think about how I’m living as well. There are things to try, and perhaps Joyce will be in hospice or "palliative care" at home after this week, like my 98-year-old aunt that lives a mile down the road.
But as well as how I'm living now, I need to think about what my likely impending decline will do to my own children, or the question of on whom the burden of caring for me might fall and how they might be relieved of that burden to whatever extent that is possible. I wish I had some way through the thicket. Mama tried her best to avoid this whole scenario, but it cornered us anyway. It seems like I should offer a bit of wisdom or insight to be going on with. But all I've got is "This is really hard."
—Follow Crispin Sartwell on X: @CrispinSartwell