The poem titled, “To the Woman at My Mother’s Funeral Who Thought It Was So Lovely that My Mother Died at Home” by Kathryn Paul (Spring 2022 Intima, Poetry), circles around my mind days after reading it. Paul’s poem eloquently speaks back to the assumption that it is always good to die at home, that home deaths are always peaceful. The literal hands-on work of caregiving—the cleaning of blood, mucus, urine and feces — is unspoken and generally done by women, whether paid or unpaid, and the writer, who in her bio calls herself “a survivor of many things” captures this in her poem.
The poem opens with the lines:
In my nightmares it is always four a.m.
and something threatens: bleeding or
choking or—foam.
While the content of the poem is softened by “In my nightmares” (we wonder how much of the content is real and how much is a “dream”), the overall effect of the poem is the sense of being overwhelmed that comes with caregiving. Will it be bleeding, choking or something else? What else can you prepare for? What do you do when the hospice nurse won’t believe you? The unbelievable quality — and quantity— of what can confront a caregiver is heightened because, while you might think of vomit or blood or piss or feces as the fluids excreted from the body and prepare for these with basins, bandages and Depends, foam is new. Foam is the horror you can’t anticipate or prepare for. Foam seems innocuous—the barista asking how you want your cappuccino—until it is spewing from a loved one’s mouth.
In my essay, “How To Visit The Personal Care Home,” I also explored the unexpected work of caregiving. We might tell someone what a good job they are doing “taking care,” but we want to distance ourselves from the specifics of death and decline. In an attempt to break that silence, I wrote a “How To” list in the essay. It too is about the difference between the reality of caregiving and the hope/promise of caregiving. We hope that a death on hospice, preferably at home, is peaceful, but the reality can be very different.
It can be very unlovely to die at home, to have the hospice nurse at the other end of the phone line not understand your concerns, to wait for a suction machine. I related to Paul’s piece. Mom was on and off hospice (mostly on) for the last five years of her life, and I believe it extended both her quality and length of life. But here, too, there were struggles: the time Mom had a bout of aphasia and hospice wanted to know if I thought it was serious before they drove out; the time, on a holiday weekend, when Mom had partially choked on some food and hospice didn’t return a call, and she ended up in the ER.
Both “Care Home” and “To the Woman” address a larger public concern about the realities of taking care—on both the people receiving—and giving—that care. Both pieces are about the hope caregivers bring as they walk with a loved one in their final days.
Making caregiving a central part of our conversations in medicine will change the kinds of prescriptions we offer. In addition to Haldol, we need medical professionals who believe caregivers, who show up for them and who work for systemic changes. Rather than having a primary care physician tell an individual caregiver to reduce her stress, we need to consider caregiving not as an individual act but a communal one. Both pieces call for creating communities of care.
Ann Etta Green is a teacher and writer who lives outside of Philadelphia, Pennsylvania. Green has published op-eds on issues of caregiving in the Philadelphia Inquirer and Chronicle of Higher Education and her writing about teaching in prison has appeared in Blarb, the Blog of the Los Angeles Review of Books. Her academic writing includes reflections on community-engaged teaching, and she has written with some of her former students who are or who have experienced incarceration. In her free time, she haphazardly gardens and reluctantly birds. Green is working on a memoir about caregiving for her mother in a rural, politically red area with limited healthcare resources. Her Non-Fiction essay, “How to Visit the Personal Care Home” appeared in the Spring 2024 Intima: A Journal of Narrative Medicine.