Being Seen and Being Heard: Capturing Alzheimer’s in the Black Community

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“Why can’t I go with you? I want to go with you! Let’s go home.” These are the familiar sentences that have painfully punctuated many visits to the nursing home. I watch my mother fidget and awkwardly explain to my grandmother that “this” is her new home. No, she cannot go with us. No, we cannot we stay in the spare bed in her room. That bed belongs to her roommate.

Somehow, after months and maybe years of this ritualistic conversation, we have moved past the phase where my mother struggles to explain to my grandmother why we must leave and she must stay. Sometimes truth is not always the answer; in the realm of dementia, lying is merciful. This has been a difficult lesson for my mother to learn—to just to say “we’ll be back soon” and leave it at that. She is surely not alone in this struggle.

Alzheimer’s disease is the most common form of dementia, “a general term for memory loss and other cognitive disabilities severe enough to interfere with daily life.” African Americans like my grandmother are disproportionately diagnosed with Alzheimer’s disease. In fact, they are twice as likely to develop the condition. Despite this, African Americans are nearly invisible in clinical trials; they account for only 3 to 5 percent of trial participants. It seems that the medical world easily forgets the way diseases and health concerns differently impact people of color. But award-winning author Marita Golden has brought attention to this disparity in her recent work of fiction.

The Wide Circumference of Love (2017) deposits readers straight into the emotional tension of an African American family at the behest of Alzheimer’s disease. Gregory Tate is one the most prominent D.C. architects—co-owner of the firm Caldwell & Tate. He’s married to a family court judge named Diane. Gregory and Diane with their two children, Sean and Lauren, represent the epitome of #BlackExcellence. Yet, Gregory’s early onset Alzheimer’s threatens to crumble everything their family has built. The novel primarily follows Diane’s point of view, but occasionally shifts to show the perspective and background of Sean, Lauren, and Gregory.

In the novel, Gregory seems to be among the rare percent of Alzheimer’s cases in which the disease was genetically passed down. Although this is not confirmed, Diane’s flashbacks to meeting Gregory’s dementia afflicted father, Ramsay, suggest so. When Gregory and Diane had begun seriously dating, Gregory’s father was using a wheelchair. His mind had disintegrated so severely that he could no longer walk or care for himself. After one Sunday dinner with Gregory’s family, Diane reflects, “This is what families did . . .They cared for one another, loved even more fiercely the weakest among them.”[1]

This is often exactly how caregivers feel when caring for their loved one becomes a demand that they can no longer meet. Within the African American community, taking care of family members was something you just did—and placing them in the care of strangers was something you didn’t do. By contrast, white American families with means have long outsourced the care of their children and elderly to workers, frequently African American. Look at the history of Black nursemaids and the mammy figure. For marginalized communities that historically have not had the resources to outsource the labor of love and care, there is an additional layer of tension and complexity—one that Golden’s novel explores.

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.”[2] Although it is often a necessary decision, leaving your loved ones in the care of strangers always feels like abandonment. And for communities whose ancestors endured familial separation from slavery, war, displacement, mass incarceration—the choice to part from loved ones is particularly arduous.

Golden poignantly captures the distress of that first goodbye between caretaker and loved one. After napping with Gregory for a few hours, Diane decides it’s finally time to go, but Gregory restrains her by holding on. Diane pleads with Gregory to let go so that she can leave, but like a child, he simply commands, “No.” A nurse must help Diane pry free from her husband’s grasp and metaphorically her old life in order to move into the new future that awaits her. For three weeks Diane is forbidden from visiting Gregory so that he can acclimate to his new life and surroundings.

I feel certain that my mother never would have agreed to such conditions. For 20 years, I have watched her try to face the devastation that is Alzheimer’s. Alzheimer’s is the worst kind of thief—it steals memories, it steals people’s sense of identity. For loved ones, it is incredibly difficult understanding that someone you once admired, maybe even feared, is no longer themselves. They are not who you remember them to be, and they are beyond logical reasoning. Often they appear as a petulant child, and the worst kind—one who can never atone or make amends for their trespasses, because they simply forget, only to do it again another day.

The cause of Alzheimer’s disease along with its cure remain shrouded in mystery. Although the disease was discovered over 100 years ago in 1906, there has been relatively little development towards a cure. However, recent research suggests strong connections to physical activity, hypertension, diabetes, sleep patterns, and depression. When one thinks of the health crises that have swept over African American communities, it seems like no wonder that Alzheimer’s is an increased risk.

 “In communities where marginalized people often must work unfavorable jobs that come with even more unfavorable health risks and side effects, Alzheimer’s is just another worry to add to the growing list. A worry that will deepen chasms between families; another foe in many Black Americans quest to retrace and understand their family’s history.”

My grandmother worked over 30 years as a nurse attendant, predominantly scheduled for the graveyard shift—from 11pm to 7am. As a divorced Black mother in the 1950s and 1960s who also cared for her own mother, she often could not get her full 8 hours of sleep during the day. By the time I was born in the 1990s, my grandmother had been retired for years but her “night owl” habits remained. At some point in her adult life, she had been diagnosed with Type 2 diabetes, which “doctors now know significantly increases a person’s risk for Alzheimer’s.”[3] In communities where marginalized people often must work unfavorable jobs that come with even more unfavorable health risks and side effects, Alzheimer’s is just another worry to add to the growing list. A worry that will deepen chasms between families; another foe in many Black Americans quest to retrace and understand their family’s history.

Ultimately Golden’s novel, as well The Washington Post article she wrote to bring awareness to Alzheimer’s in the African American community, beautifully recount that life and love can continue despite the havoc Alzheimer’s wreaks on minds and hearts. These works also emphasize that it’s especially important to recognize how communities of color, who experience Alzheimer’s more frequently and more severely, are erased from public health discussions about the condition. In TIME magazine’s 2018 special issue on Alzheimer’s, there was barely a mention of people of color. This makes the work of organizations like Us Against Alzheimer’s that much more important. Support those who see us and distance ourselves from those who don’t and won’t.

[1] Golden, Marita. The Wide Circumference of Love. 79.
[2] Golden, Marita. The Wide Circumference of Love. 23.
[3] Sifferlin, Alexandra. “The Varied Paths to Progress.” TIME 47.

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About Author

Norrell Edwards is a freelance writer and editor who is currently working on her PhD in English from the University of Maryland, College Park where she studies 20th and 21st century Black Diaspora Literature. She has written extensively on Haitian literature and memory for various peer-reviewed journals and edited collections. Moving to the DC metropolitan area from the New York metropolitan area has provided Norrell with a love for the vibrancy of big cities. Find out more about her freelance work on Norrelledwards.com and follow her musings on Twitter @Norrellexplains.

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