By Cat La Roche
On the day my maternal grandmother, Veronica, died in August of 2019, my Dad and I were driving into the city for a picnic in my sister’s backyard in Park Slope. We had just exited off the Brooklyn-Queens Expressway; at 3:25pm, my mom texted “Mom died. It was peaceful.” As far as deaths go, it was the best we could have hoped for. My grandma lived independently in her own home until she was 98; then, one night, she fell, went the hospital, then to a rehabilitation facility, and then to an assisted-living facility where she could have medical care at a moment’s notice—the one she went to was called “Parc at Traditions,” a name my mom and I made fun of. From there, her health oscillated but mostly declined. Her kidney function wasn’t good—she was transferred to the hospital. My mom flew down to Texas to be with her and was joined by my Aunt Karen. Veronica wasn’t in the hospital very long—10 days. On her last good day, the three of them played Scrabble—Grandma kept playing words in German. The next day, she died. Back in Brooklyn, we drank gin and tonics and my sister’s boyfriend Red ran out for a cigar—a tribute to Grandma. My other sister was upset and needed to take a walk—I chased after her and we walked through Prospect Park and cried. It was a beautiful day and the park was filled with families barbecuing, which made our experience of grief feel even more acute and strange.
Mom and Karen stayed in Texas for another week to get a few things organized. Grandma was cremated, her room at Parc was cleared out, and certain important possessions were distributed among friends and family; her car was sold for $1 to a neighbor. In October, dozens upon dozens of family members descended on her house in College Station, Texas for her celebration of life—probably 100 people were in and out, flying in from Fresno; Madison, Wisconsin; Johnson City, Tennessee; Iowa City; Toledo; New Jersey. Everybody cried and told stories; second and third cousins met each other for the first time and talked about loving my grandma. In December, my mom and her four siblings went back to Texas to clean out the house together and split up her possessions into “keep” or “donate. “
By the time the pandemic hit three months later, the last loose end—her house being sold—was about to be tied up. At once, grief mixed with an unexpected relief and gratitude. Elderly people died and continue to die at staggering rates—accounting for 80% of deaths due to Covid.[1] Forty percent of deaths have occurred at long-term care facilities;[2] Parc at Traditions saw an outbreak in April and May that led to at least 45 cases among staff and residents. The events of the last ten months have made it clear that our family had many privileges, in terms of both caring for and mourning my grandmother, that are now largely lost to the families of those dying now.
Still, in conversations both with my mother and Joanne Corbett, Executive Director of Elderly Services Inc. in Addison County[3]—it became clear that even the good deaths do not go untouched by the issues that broadly affect elder care in the U.S. today, and the bad deaths are infinitely worsened by the pandemic.
***
My mother remembers my grandmother’s assessment of the other people in the long-term care facility she lived in during the last months of her life—“they’re either deaf or crazy.” This criticism, albeit unfair and likely untrue, nonetheless reflects a popular conception of people in nursing homes, one which was deeply linked to her discomfort with living in an assisted-living facility. My grandma’s experience at Parc was strange and alienating; she didn’t fully trust the doctors and nurses. A nurse herself, Veronica wanted to know what pills were in her cup each day, and the attending nurse would sit and wait impatiently while my grandma went through them, counting them to make sure they were all there. The Marxist-feminist Silvia Federici describes issues with assisted-living facilities and nursing homes, including lack of intimacy and neglect:
At best, they let their residents lie in bed for hours without anyone at hand to change their positions, adjust their pillows, massage their legs, tend to their bed sores, or simply talk to them, basic elements in their maintaining a sense of their sense of identity and dignity and still feeling alive and valued. At worst, nursing homes are places where old people are drugged, tied to their beds, left to lie in their excrements and subjected to all kind of physical and psychological abuses.[4]
In Federici’s portrayal, nursing homes can be lonely or altogether dangerous and inhumane—the fact that my grandmother lived independently for much of her life and in an assisted-living facility for only a few months is thus widely considered lucky. Perhaps less importantly, though still significant in terms of everyday life, my mom noted the need for elder care activities that are not infantilizing; at the assisted-living facility, she said, activities included bingo, making flowers out of popsicle sticks, showings of “Gone With the Wind.” Veronica was exceptional in how long she lived and in how well she retained her physical and mental faculties, but her interests were not so exceptional—at home, when she had more control over her daily schedule, she had a group for learning Spanish, and she liked to bake bread and work in the garden. At Parc, there was little to stimulate my grandmother intellectually, and to meaningfully connect her with other residents and the rest of the world.
Of course, there is also the financial element of resistance to seeking professional care. Joanne mentioned that low-income seniors can get services subsidized relatively easily, but middle and upper-middle class seniors can be more reluctant to pay out-of-pocket. My grandma, a nurse who was married to a college professor, was perhaps among the last generations of middle-class people who could save enough money—she owned her home and had a nest egg of about $750,000— but she was always worried about running out. She rented rooms in her house to graduate students at Texas A&M— both for company and for closeness to younger generations, but also out of uncertainty. She had enough money now, but what if she lived to 99? 100? 110? “You had to twist Mom’s arm to get her to do spend money on something for herself,” my Mom remembered. My grandmother was born in Germany in 1921, the daughter of a Protestant minister, and surely was no stranger to generational, Depression-era worries about losing everything; still, there is no doubt that financial insecurity, in a country with a social security net so thin and loose that dozens of millions of people fall through it every year, is an unavoidable facet of many seniors’ life, especially when one retires in their sixties or seventies and then has who-knows-how-many years of life remaining.
The other side of this financial element, as Joanne Corbett noted, is that many seniors do “not recogn[ize] the burden that family members are carrying.” Many seniors, she said, do not seek professional help because they can get care for free from loved ones. In many ways, this care appears better, in that it can be more familiar, more loving, and more autonomous than in an elder-care facility. This elder care work within families, however, is almost exclusively unpaid. Silvia Federici, in her essay “On Elder Care Work and the Limits of Marxism,” writes that, “the task of caring for the old who are no longer self-sufficient has been left to the families and kin with little external support, on the assumption that women should naturally take on this task as part of this domestic work.”[5] In other words, this labor is naturalized to the point that it is hardly recognized as work. Joanne told me about employees at Elderly Services who are in their sixties and seventies and work 25-40 hours per week, leaving work and then going straight to take their elderly mother-in-law to the doctor, or to make a casserole for a relative. She also noted that female relatives are called on more to provide care—my mother noticed that she and her sisters managed most of the labor and decision making while her brother took a back seat. Their work transcended space; my aunt Chris in Pennsylvania paid my grandma’s bills and did her taxes from fifteen hundred miles away—my mom said, “we knew who her plumber was.” More, Joanne added that in heterosexual marriages, the husband normally dies first, benefitting from the deep and individualized care of their wives. Later, when wives need care, they must call upon relatives for help. Joanne noted that women tend to have stronger friendships throughout their lives and thus are in a better position to combat isolation in the last years of their lives, but the fact remains that there is an unevenness of care work that is endemic to intra-familial elder care.
In considering this phenomenon, the revelation must be had that wanting someone you love to be cared for is not quite the same as enjoying caring for that person— further, this desire for someone to be cared for, or even the desire to care for this person, does not mean that it should be difficult and overwhelming to do so. The need to call work “work” is pressing and absolutely necessary—in her seminal manifesto “Wages For Housework,” Federici demands a wage for the unpaid labor that is done to run a home and care for loved ones, writing “we want to call work what is work so that we might rediscover what is love.”[6] There is no doubt that care for elderly loved ones by their younger relatives is often borne out of love, but while this work is unrecognized as work, the love endemic to it can be spoiled by confusion, exhaustion, and stress.
Of course, all of these issues have changed and become exacerbated by the pandemic. As seniors become ill and die at horrifying rates, isolation in and out of care facilities grows more acute. Joanne notes how seniors are forced to avoid their children, grandchildren, and great-grandchildren—the work of relatives caring for elders becomes far more complicated. Further, seniors who have resisted technology—“a world they have never been interested in,” as Joanne phrases it—are suddenly left behind in a world where communication over the phone and computer is the only option. There is also the fear of facing a horrible, lonely, and rapid death from Covid-19, or another affliction, in which you are alone in a hospital room. Luckily, hospitals now allow for one or two visitors in the room if patients are dying, but this was not true at the beginning of the pandemic.
In Judith Butler’s “Mourning, Violence, Politics,” Butler calls into question the obituary as a public site of grieving, and also as a site of a hierarchy of grief.[7] There is no doubt that this period of mass death entails less time for the community to grieve the individual, though there have been valiant efforts at commemorating the tremendous loss of life. This May, the New York Times famously published the names and a few short details about 1,000 of the first 100,000 Americans to die from Covid-19. Similarly, every time Governor Phil Murphy has a press conference, he commemorates a few New Jerseyans who have died from the virus. Still, Butler characterizes the obituary as lives “tidied up and summarized, humanized, usually married or on the way to be, heterosexual, happy, monogamous,” highlighting how our public memories are twisted and molded to conventional ideals. More, in a question that echoes amidst a pandemic that disproportionately affects black, Hispanic, and working-class Americans, Butler asks: “if someone is lost, and that person is not someone, then what and where is the loss, and how does mourning take place?”[8] My grandmother, undoubtedly, got to be someone—with an obituary (drafted by me), and a well-attended memorial. For other seniors, the pandemic not only heralds a lonely, painful death, but also one that is less individually grievable.
***
About a year before my grandma died, my mom and her siblings hired for her a personal carer named Amadita who could spend longer periods of time with her, make sure that she took her medication, read to her—things like that. At first, my mom says, Veronica “didn’t want to be babysat by a stranger.” But the whole neighborhood knew Amadita. Before she worked for my grandma, Amadita worked for my grandma’s neighbor across the street for over a decade. My mom told me that Amadita’s mother, in Belize, cared for elderly people as a career, too, and that Amadita’s daughter is starting to work in elder care. My grandma loved Amadita, and a Google search shows that Amadita was mentioned in two other obituaries of women she cared for and was loved by. I told Joanne about my grandma’s friendship with Amadita, and I asked her if it is very painful work for the carers themselves. Joanne agreed that their work is in many ways painful, but that it can also be fulfilling. She cited employees who say that they “get as much out of it as [their] patients do, learning about living and dying;” for some, it is “a calling, a spiritual education, on how to be old, and facing your death with courage.”
I am inclined to believe that care work is some of the only work that is remotely important—not in a creepy, biological destiny way, but for reasons of human connection and fulfillment. There is no doubt that most domestic carers are tremendously underpaid, and that the public good that results from their labor far outweighs what they are compensated for. Thus, when considering the problems of care work, we face a tremendous opportunity for intergenerational strength and cooperation. Federici writes that
At stake in the politicization of elder care are not only the destinies of older people… but also the possibility of generational and class solidarity, which for years have been the targets of a relentless campaign by political economists and governments, portraying the provisions workers have won for their old age…as an economic time-bomb and a heavy mortgage on the future of the young.[9]
She argues that a re-framing of a progressive agenda that focuses heavily on elder care would be tremendously beneficial for a society as a whole, young and old. Aging and death is something every person unequivocally faces—although some people do not have the privilege of growing old, elder care is nonetheless something that belongs to all of us. The problems I have highlighted—flawed care facilities, financial uncertainty, nonexistent or low wages for care work, and isolation amidst a pandemic—all have easy solutions, many of which reside in more funding, better social security, and programs, and higher wages. A more comprehensive and altogether better solution, however, would entail a shift of society in the direction of elder care. As population grows and generations live longer and longer, this urgent possibility may not be so far off.
I am extremely indebted to both Joanne Corbett and my mother, Sarah Copp, for their invaluable insight and direction, which unquestionably formed the bulk of this paper. I also feel an incredible amount of gratitude towards my grandmother, Veronica Copp, who taught and continues to teach me so much about life and death.
[1] “Covid-19: Older Adults.” CDC, November 27, 2020. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/older-adults.html
[2] Avik Roy, “Nursing Home Deaths from Covid-19: U.S. Historical Data, The Foundation for Research on Equal Opportunity, July 15, 2020 https://freopp.org/nursing-home-deaths-from-covid-19-u-s-historical-data-b4ad44cfc48e
[3] Elderly Services, Inc. is an organization that provides numerous programs to support seniors, including an Adult Day Center, counseling, educational programming, and resources for families.
[4] Silvia Federici, Revolution at Point Zero: Housework, Reproduction, and Feminist Struggle (Oakland: PM Press, 2020), 137
[5] Ibid., 134
[6] Ibid., 16
[7] Judith Butler, “Violence, Mourning, Politics,” Gender and Sexuality 4, no. 1 (2003): 9-37, 21
[8] Ibid., 21
[9] Federici 134