Tending to Endings (three)
Hospice workers often say, “Every death is different.” I would add, every decline, too. One reason I didn’t find much literature directly applicable during the time I was caregiver for my mom is that Alzheimer’s affects people in such individualized ways and it keeps changing. My mom was either in a much earlier or a much later stage than whatever I was reading about at the time.
Also, I was grappling with the hugeness of what I was going through at the same time I was trying to figure out how to help my mom remember how to sit down in a chair. Books either left the existential crises out or approached it in a way that felt clinical. OK, I may have had unreasonable expectations on what the average book could offer.
But two helped me a great deal, and I have been recommending them ever since.
I first read Atul Gawande’s Being Mortal: Medicine and What Matters in the End in 2016. Gawande, a surgeon, gives historical and cultural context regarding end-of-life treatment, and he draws on research and case studies and personal memoir–all compelling–to arrive at a series of conclusions:
…our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.
Two years later later when it felt like mom’s options were closing in, Gawande’s words helped me envision a broader landscape from which to make choices. For instance, when I explain to friends why my mom’s dying was beautiful and good as well as devastating, I include that we were able to get her Maui, my parents’ second home and her favorite place in the world.
It may seem an obvious decision. Mom, age 79, had two terminal diseases: inoperable cancer and advanced Alzheimer’s. My parents hadn’t spent a winter in Chicago in fifteen years. Why would we hesitate?
And yet, one constant of being a caregiver was that I was hardly ever sure I was doing the right thing.
Was it more important for my parents to be close to a deeper family support system or to get to their island home? Should we stay near Chicago where there were more medical specialists? Was the nine-hour flight too much for my mom to bear? Also, Alzheimer’s made it difficult to know what my mom truly wanted.
What Gawande’s book gave me was not a prescribed course, but rather, a broader framework. It offered language beyond treatment options: What is important? What is meaningful? What are we afraid of? What would make this a good day?
Those simple questions helped me make peace with a thousand imperfect decisions. A few —like getting mom to Hawaii and onto home hospice care—significantly transformed her experience. Mom spent her last four months at home on the lanai watching whales rather than in doctors’ waiting rooms.
I read the second book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying in the weeks after my mom’s death. Sallie Tisdale, a palliative care nurse, covers the particulars of dying from the point of view of someone who has been beside many deathbeds. Her tone is warm and open and direct. Somehow found it very comforting to have versions of what I had just been through recounted. It made me feel less alone.
Tisdale does not suggest that having extensive experience with death means that we understand it. One things that helps me trust both of these writers is each approaches the topic of death with a sense of humility. “I have never died,” Tisdale writes, “so this entire book is a fool’s advice.”
Tisdale’s writing is elegant and honest and often funny. I found her section on grief especially relatable.
No one tells you that grief is like a long march in bad weather. You’re forgetful and find it hard to make decisions and have no interest in the decisions you are being asked to make. You lose track of time, because time changes too, shifting and slowing, speeding and stopping altogether. An hour becomes an elastic, outrageously delicate thing disappearing or stretching beyond comprehension. One is deranged, in the truest sense of the word: everything arranged has come apart.
Ultimately this book helped me consider my own future and that I really do not want my death to usher in complications and decisions and paperwork for those who love me. Tisdale includes an enlightening chapter about the body after death and also useful templates for death plans advanced directives.
Early her book Tisdale writes, “We share a grand social agreement about mortality. We choose not to notice, if we can.” I read both of these books during a time when mortality and all of its messiness was already in my face. I have not always been so ready to read about the end-of-life, and I am well aware that these topics can be anxiety producing.
But I will say that while the books are very straightforward and direct about death— no euphemisms, no glossing over the hard stuff—one reason I am so quick to recommend them is that ultimately, I also found them empowering and hopeful. As honest as these authors are, each also treats the topic of death with gentleness and love. They write about mortality with a great deal of professional knowledge, but also from the perspective of, well, being mortal.
Next week I plan to explore the idea of memory books.
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Thank you again for this blog. Your eloquent recommendations assure me that both these books are well worth the read.