OCTOBER 13, 2021
THIS PAST MAY, I reunited with my 97-year-old maternal grandmother after nearly a year and a half of separation due to the COVID-19 pandemic. My grandmother, Ida Frances Shaw, is one of the 1.4 million citizens living in a nursing home — one of the most dangerous places for the spread of the COVID-19 virus. According to an interactive map maintained by The New York Times (which has not been updated since June 1), 184,000 — or 31 percent — of all US COVID-related deaths were among residents and employees of nursing homes and other long-term care facilities. Across 32,000 facilities, 1.3 million had been infected. My family worried for weeks and months that we might never see my grandmother again — that she too might be swallowed up within those grim statistics.
Having been diagnosed with Alzheimer’s disease since the early 2000s, my grandmother doesn’t quite remember who I am anymore. But the fact that she doesn’t recall my name or her beloved nickname for me — Norry — didn’t dampen the beauty of our reunion. Her eyes lit up to see my mother and me; I could tell that she was smiling even if her oversized mask hid her toothless grin. Like many children of single parents, I matured under the not-so-watchful eye of my grandmother. I remember her apartment as an archive of the arts: cassettes, records, 8-track tapes, and CDs; photo albums filled with images of family and friends who came and went — many unrecognizable to me — alongside my grandmother’s nature photography; an abundance of hand-drawn abstract sketches tucked inside of books and magazines; a plethora of puzzles and word games; and of course a collection of old books and family Bibles. Although her memory has faded, her passion for the creative arts has not.
As is our tradition, I played her special playlist and we danced. A few years ago, I read that music helps stimulate the memory. According to the Mayo Clinic, musical memories are often unaffected by Alzheimer’s, and “[r]esearch suggests that listening to or singing songs can provide emotional or behavioral benefits for people with Alzheimer’s disease and other types of dementia.” Whenever I visit my grandmother, in person or virtually (we had a few FaceTime calls during the pandemic), I play some of her favorite songs: Bill Withers’s “Lean on Me,” Nat King Cole’s “Unforgettable,” Aretha Franklin’s “Respect,” and Booker T. & the M.G.’s “Green Onions.” She bobs along to the music, her arms sometimes swaying. At her best, she will even remember the lyrics and sing along to “Lean on Me,” a song she used to play on repeat in a different life. The music teleports her to a place locked somewhere deep inside her mind, where memories of her life in New Rochelle and our family reside. Marita Golden’s 2017 novel The Wide Circumference of Love features a similar scene in which the Alzheimer’s-afflicted Gregory Tate listens to Bob Marley’s “Don’t Worry ’bout a Thing” and is transported “to a room of red and blue lights, bathed in the smell of liquor and warm bodies.” Art imitates life, but art can also reinvigorate life.
I have taught The Wide Circumference of Love several times now, have even spoken with the author herself, but now, in the shadow of COVID-19, the novel sits differently with me. Golden’s story deposits readers straight into the emotional tensions of an African American family struggling with the human toll of Alzheimer’s disease. Despite the fact that African Americans are twice as likely as whites to develop Alzheimer’s, they are, as Golden observes in a 2017 article for The New York Times, “nearly invisible in clinical Alzheimer’s trials: Despite representing more than 20 percent of the 5.5 million Americans who have the disease, African Americans account for only 3 to 5 percent of trial participants.” How might these numbers worsen as our current public health nightmare drags on? This pandemic has put health disparities and the structural racism of American medicine at the forefront of public discourse.
In Golden’s novel, Gregory Tate is a prominent Washington, DC, architect, co-owner of Caldwell & Tate, and the husband of a family court judge named Diane. The Tates and their two children, Sean and Lauren, represent the epitome of #Blackexcellence. Yet Gregory’s early-onset Alzheimer’s threatens to destroy everything their family has built. The novel deals with important themes such as family dynamics, race, personal discovery, healing, trauma, and loss. Of course, it highlights the racial inequities in public health. Although the story primarily follows Diane’s point of view, occasionally shifting to show the perspectives and backgrounds of other main characters, the crux is Gregory’s transition from his home to an assisted-living facility for elderly persons with memory issues. As I know from firsthand experience, this adjustment can be heartbreaking for both new residents and their loved ones. In the post-2020 world, the devastation of the experience is manifold. Who knows when you will see your loved one again, if ever? I wonder whether Diane would make the same choices. How would the Tates have managed the extra separation caused by the pandemic? Would Gregory have survived?
As I reread Golden’s story, I saw how Gregory’s trajectory eerily echoed my grandmother’s. The early stages of Alzheimer’s are filled with denial and fights. Your loved one keeps misplacing things, forgetting simple tasks, and trying to hide their ailment. There’s still a tremendous amount of shame surrounding it. For individuals accustomed to being strong and persevering, admitting weakness and vulnerability can feel impossible. In the early stages, they are still high functioning and can go out on their own … until they can’t. Maybe they get lost or can’t remember the route home. Slowly, their ability to govern their bodily functions erodes. The next stage is home confinement with supervision. For years, my grandmother lived in the apartment below ours, but my mother managed all her finances, shopping, and major needs. My grandmother babysat me, but maybe, in retrospect, I babysat her too.
When we moved to a house, my grandmother came also, and soon needed more care than my mother or I — a young teen — could manage. Like Gregory, my grandmother had a Jamaican aide to help supervise and bathe her while my mother worked and I attended school. That sort of arrangement works for a while … until it doesn’t. Eventually, the aide and adult day care would not be enough either. In The Wide Circumference of Love, Gregory strikes Diane, catalyzing the need to remove him from their longtime home. Diane can no longer bear to sleep behind a locked door, fearing the man she once trusted most. Placing someone you love in a home can feel like abandonment and betrayal. During a time of polarizing politico-economic turmoil and an unending public health crisis, such an abandonment could be a death sentence.
In March of this year, the AARP reported that Alzheimer’s deaths had increased 16 percent during the pandemic, “killing at least 42,000 additional vulnerable older Americans in 2020.” I am blessed to say that my grandmother was not one of them, despite contracting COVID-19 early in the pandemic, close to her 96th birthday in April 2020. For the entire week she was hospitalized, we frantically called doctors, worried about her risk of blood clots as a wheelchair-bound diabetic, and anxiously waited for her return to the nursing home. Our hometown — my grandmother’s hometown — New Rochelle, New York, was an early site of viral outbreak. We count our blessings that our matriarch, our Ida, survived and continues to thrive, just as resilient as ever. Cranky, stubborn, childlike, humorous, and beautifully alive. So many were not as lucky. For many with Alzheimer’s and other forms of dementia, COVID-19 wasn’t the only killer; isolation itself could be deadly.
According to Alzheimer’s expert Jason Karlawish, family members can act almost like a “cognitive wheelchair for patients who have lost part of their mind,” and losing that critical support can have dire consequences on quality of life. For years, my mom has managed my grandmother’s laundry, insisting on keeping Ida’s clothes from being mixed up, lost, or destroyed. When my grandmother still allowed it, my mother would paint her nails, giving her a nice, fresh manicure and making her the envy of all her friends. Those small acts of love and care nourish individuals otherwise languishing in nursing homes, sparking joy and memory that are absolutely crucial in fighting back against the process of mental deterioration. As the pandemic continues to rage and many nursing homes return to no-visitor lockdowns, those moments of joy and care become few and far between. I wonder, again, what would Diane do? What are families across the country, especially Black families, doing?
Within the African American community, taking care of extended family was just something you did, and placing loved ones in the care of strangers was something you didn’t do. Historically, white American families with means have always outsourced the care of their children and elderly to workers, who are often African American. For marginalized communities that typically lack the financial capital to outsource familial care, there has always been an additional layer of tension and complexity. When Diane first leaves Gregory in his new home at an assisted-living facility, she looks at the dining room area and thinks, “Here he would stay, among absolute strangers. People stranger than even she and Lauren and Sean were to him now.” Although it is often a necessary decision, leaving your loved ones in the care of strangers always feels like abandonment.
In The Wide Circumference of Love, Golden poignantly captures the distress of that first goodbye between caretakers and their loved ones. After napping with Gregory for a few hours, Diane decides that it’s finally time to go, but Gregory won’t let her. Diane pleads with him to let go of her so that she can leave, promising “I’ll be back.” Like a child, he simply commands, No. A nurse must help Diane pry herself free from her husband’s grasp — and, metaphorically, her old life — in order to move into the new future that awaits her. Diane listens as “[a] howl erupted from room 4B. The rank odor of guilt rose from her skin. […] A last look backward revealed that Gregory’s door was now closed, but his moans rumbled down the hallway.” For three weeks, Diane is forbidden to visit Gregory, so that he can acclimate to his new life and surroundings. Thankfully, neither my grandmother’s assisted-living facility nor her nursing home made such a request of us, but even still, the separation felt unbearable.
For years, my grandmother would plead: “Why can’t I go with you? I want to go with you! Let’s go home.” These familiar sentences painfully punctuated the close of many visits to her nursing home. I’d watch my mother fidget and awkwardly explain to my grandmother that “this” was her new home. No, she could not go with us. No, we could not sleep in the spare bed in her room — that bed belongs to her roommate. Somehow, after months and maybe years of this ritualistic conversation, we moved past the phase where my mother had to struggle to explain to my grandmother why we must leave and she must stay. Sometimes truth is not always the answer; when dealing with dementia, lying can be merciful. This has been a difficult lesson for my mother to learn — just to say, “We’ll be back soon,” and leave it at that. For communities that have long endured familial separation from institutions of oppression, such as slavery, war, displacement, mass incarceration, the choice to part from loved ones is particularly difficult. The COVID-19 pandemic is yet one more wedge separating families around the globe, but it has especially impacted African Americans.
The Wide Circumference of Love highlights the contrast between traditional Black caretaking practices and the modern reality of nursing homes. It does this by introducing flashbacks to Gregory’s father, who also had dementia. Although this is never confirmed, the novel suggests that Gregory’s Alzheimer’s is inherited, making him part of the small percentage of cases in which the disease is genetic. While heir to the same mental decline, Gregory will also, unlike his father, lose his physical home. When Gregory and Diane began dating, Gregory’s father was confined to a wheelchair. The disintegration of his mind was so severe that he could no longer walk or care for himself. Yet still he lived at home. After one Sunday dinner with Gregory’s family, Diane reflects, “This was what families did. […]They cared for one another, loved even more fiercely the weakest among them.” What happens when modern families cannot fiercely protect the weakest among them?
I wonder what the future holds for our caretaking practices for those with Alzheimer’s. The advocacy group UsAgainstAlzheimer’s projects that, by 2030, Latino and African American families will make up 40 percent of those affected by Alzheimer’s. That assessment came before the debilitating impact of COVID-19. In August 2020, The Washington Post ran a story about a woman in New Mexico, Dena, who had pulled her mother, Rhoda, out of her care facility because the isolation seemed to be killing her. By contrast, Rhoda’s closest friend in the memory care unit, Nancy, passed away alone. “Sometimes together and sometimes on their own, Dena and Katherine [Nancy’s daughter] had wrestled with what was best for their mothers, and what made sense — financially, practically, emotionally — for themselves.” The decision whether to keep a loved one in a nursing home, and the consequences of that decision, weigh more heavily than ever. Thinking about the racial calculus adds yet another layer of complexity.
Racial disparities in nursing homes, as in many other US institutions, expose the realities of structural racism. A recent study by the Center for Medicare Advocacy highlighted the fact that Black residents of nursing homes faced “an increased probability of a COVID-19 outbreak anywhere from 45% to 300%.” Those outcomes are connected to resource distribution. Well-resourced facilities avoid accepting Medicaid patients, which shrinks their population of poor Black residents. As a result, African Americans, who are often from segregated neighborhoods, end up in poor-resourced nursing homes where Medicaid is more likely to be accepted. Resource-poor nursing homes have poor staffing that equates to “lower RN and aide hours per resident,” inferior infection control processes, higher dependence on Medicaid, and surrounding communities that often lack robust transportation, health services, and education. From living in food deserts where fresh fruits and vegetables are scarce to surviving in communities so devalued that crime and stress are equally high, people of color suffer a cascading series of health problems exacerbated by social inequity. In communities where marginalized people must often work low-paying jobs that come with their own health risks, Alzheimer’s and COVID-19 just get added onto a growing list of dangers.
I think again about Gregory and Diane. How would they have survived the COVID-19 crisis? Perhaps, with their wealth, Diane could have afforded to pay for a full-time aide and kept Gregory at home. Or perhaps his facility, tucked away in a well-off suburb in Maryland, would have fared relatively well. My own family was lucky, so maybe the Tates would have been lucky too. But so many have not been.
Norrell Edwards is a scholar, avid reader, and sometime extrovert from New Rochelle, New York. She received her PhD from the University of Maryland, College Park in Black Diaspora Literature. Norrell is currently the Chancellor’s Postdoctoral Fellow at Texas Christian University, as well as the Communications and Content Director at TandemEd, where she co-hosts the podcast Black Terms.