‘Distraction and diversion are your friends when a loved one has dementia. I wanted to dislodge this memory that defined his generation in the way that the killings of Trayvon Martin and George Floyd have and will define later ones.’ Photo credit: PeopleImages / Getty Images.
I had just entered my father’s nursing-home room when he swung his head around and pronounced, “They killed that boy in Mississippi.”
Not the greeting I expected. I was startled by how swiftly he turned and pinned his gaze on me. Confined to a wheelchair and the world of dementia, my father rarely moved that quickly anymore. He often would talk to me, full-out lucid conversations, without opening his eyes. But that day he looked at me intently, eyes wet and runny. Tears or discharge from an ongoing eye issue, I didn’t know.
Neither did I know what he was talking about, and I felt ambushed by the simple declarative sentence about another black death at the hands of a “they” that I assumed to be police. I wracked my brain to recall the day’s headlines. Had I missed a shooting, an unexplained hanging, a suspicious suicide? There have been so many – too many to remember.
Then, he said, insistently: “They killed that boy in Money, Mississippi,” and gestured to the television. Sound muted, it flashed new developments in the case of Tamir Rice, the 12-year-old Cleveland boy killed by police in late November 2014 as he played with snowballs and a pellet gun in a park. With the “Money” reference, I realized that my father was conflating Rice with Emmett Till. Another black boy, big for his 14 years, considered a threat and accused of “provoking” his own lynching in 1955 when a white woman, Carolyn Bryant, lied that he’d approached her sexually.
It would do no good to correct my father; the brain on dementia doesn’t always respond to reason. My father had vascular dementia. Different from the more common Alzheimer’s disease, it’s a form of cognitive and physical decline often caused by multiple strokes. Those strokes might be virtually undetectable until, cumulatively, they result in brain damage, confusion, and impaired mobility. When my father was diagnosed, a kind doctor told us that his brain was functioning like a camera shutter that’s constantly misfiring – sometimes fast, sometimes slow, collecting thousands of impressions that it couldn’t process or organize. But that didn’t mean that all memory was lost.
This was the case with my father, who died this spring at the age of 86. His historical memory was remarkably intact. He could remember a football game from decades ago, the shebeen called Hell’s Half Acre that he frequented as a young, wild-oats-sowing man (the same place he tried to take my mother, who said, “I’m not that kind of girl” and demanded to be taken elsewhere). But he sometimes got stuck in a time machine.
I realized, as my father spoke with a firm voice and brimming eyes, that he was of an age with Emmett Till. Could have been an older brother. I mulled turning off the TV or turning it to a sports channel. Distraction and diversion are your friends when a loved one has dementia. I wanted to dislodge this memory that defined his generation in the way that the killings of Trayvon Martin and George Floyd have and will define later ones.
For my father, marooned in the Emmett-Tamir loop he could not stop, 1955 was 2017.
I trotted out all the techniques I’d been taught by “memory care” experts. I changed the subject gently and agreed pleasantly when he seemed agitated, an old conflict-resolution trick called “fogging”.
I left, thinking it had worked, until I heard that my father refused to have a white certified nursing assistant (CNA) bathe him.
“She might say I’d try to rape her,” he said.
For my father, a whip-smart man perpetually ready with a joke and who seemed to fear nothing, anti-Black racial violence surfaced in his delusions and anxieties. Indeed, the stress of racism and health disparities are factors in black Americans’ disproportionately high rates of heart and vascular diseases, which may then increase their risk for developing dementia. The Alzheimer’s Association says there’s a “silent epidemic” of the condition among black Americans, though statistics on its prevalence vary widely; some studies suggest African Americans are anywhere between 14 and 100% more likely to develop dementia than their white counterparts.
My father became irate when a CNA said things like white women’s unfounded rape allegations against black men “didn’t happen”. He knew it did, from both the impersonal arc of history and family experience. Soon after, when my father had a bad reaction to steroids, he lashed out at his caregivers, shouting about the mistreatment he’d suffered as a black man born during the 1930s in rural Appalachia.
I think of this moment often now, as I see and hear black elders talk about this latest racial spasm in our society and their lives. I worry for African American seniors like my father, who are living with dementia and struggle to make sense of eating breakfast. Or those who live in nursing homes where they are one of the few black residents (for years, my father was the only black man in his). I wonder if they see modern-day uprisings and are mentally catapulted into the fires that burned cities in 1968, if they see police brutality and marches, and think of the daily indignities of Jim Crow.
I know that my 74-year-old mother does. Since George Floyd’s death, she’s commented multiple times about white children spitting on her from school buses she could not ride, how the state of South Carolina was so fixed on ridding the state of future “problems” that it paid the difference between in-state tuition and her out-of-state fees (better if educated Negroes went out of state and stayed there).
A friend told me that her senior mother abruptly packed her bags and fled the city she lived in, going to the country town of her upbringing and resettling among her people. Maybe to flee Covid-19, maybe to find succor in open spaces and familiar faces. And these women, my mother included, don’t have dementia.
My mother can talk about her feelings and sort through them consciously in a way my father couldn’t. I got to better understand his racial wounds as a survivor of segregation – and maybe we should think of black people of my parent’s generation just this way: as survivors. I heard more about the things that made him through the loss of inhibition that made him both irritable and so affectionate. My father told me that he loved me more as he declined. I heard about his adventures hunting, running bootleg liquor across state borders to earn money for graduate school, the fast pitch that almost took him to the Negro Leagues, the difficult horse he broke and trained.
Dementia gave me my father in a new way. It also took him away.
I cherish the times I have with my mother and listen to her stories of trauma and triumph. She has the Southern gifts of well-rehearsed public politeness and meaningless, cordial chitchat. Recently shopping in a grocery store, she had a brief encounter with a white woman customer, around her age, that gave her pause.
“We were just saying hi to each other, in the aisle. We both had our masks on, and we were saying ‘How are you?” And I said, ‘These are trying times.’ She said, ‘Are things THAT bad for black people?”’ – a sign of both white oblivion and a pandemic-driven thirst for conversation.
For her part, 67-year-old Jill Hamilton, a nursing professor at Atlanta’s Emory University, isn’t pining for these kinds of discussions. She researches how black elders use religion and song, such as iconic African American spirituals, to get through life challenges. She’s written about how black sacred songs serve various functions – such as expressing thanksgiving, talking to God, remembering ancestors, or invoking life after death – and have long served as balm for older black adults. Those multiple functions can apply now, as well as this learning from her and her parents’ generations: Pray for the best, but prepare for the worst. That worst could include quotidian racism and acts of violence (the preparation for her rural black elders often included a gun in the car or the purse).
“I don’t want to be in conversation,” Hamilton said. “Because we’ve seen it before … though I admire the way the young people are trying to make policies change. I think that the civil rights movement opened the door, but that some of our parents, aunts, and uncles – people who’d be in their 80s and older now – thought that if we got that education, if we worked hard, had good ‘white-people’ names, they’d have to accept us. This [younger] generation grew up with more white people than we did, went to school with them, but I sometimes think it’s worse for them because they didn’t get the same skill set” of coping with overt, daily and legally codified racism.
There’s little precedent for the multiple hits that everyone is taking now — with Covid-19 and police violence taking many black lives. Many black elders of the civil rights generation are aware that they are extremely vulnerable to coronavirus, but they may be hard to reach with the latest and best information.
“How do you explain phase 1, phase 2, and phase 3 [to older people, including those with cognitive issues that may be age-related or dementia]?” asked Angie Boddie, who runs health and wellness programs for the Washington DC-based National Caucus & Center on Black Aging. “The messaging was confusing and kept changing. Even in the beginning, Anthony Fauci said we didn’t have to wear masks.” Her organization is trying to keep the older people it serves in the know, through a newsletter and also weekly check-in calls to residents who live in the various properties the center manages.
Boddie said: “The main thing is socialization. We have people who live in our housing and want to go in common areas together, who go to the grocery store as a group. We can’t do our chair exercises in a group. It’s hard to say to a grandmother that her grandson can’t come in and visit.”
Boddie’s own grandmother, formerly a South Carolina native, celebrated her recent birthday, thanking God for seeing 90 years and not having coronavirus.
In the past, she had her own domestic ritual to support civil rights activists – and it’s one she’s replicating now.
“You’d call your relative in the North or your neighbor down the street. And you’d march wherever you were, your house, and recite [Scripture]. You’d march in place and pray – and she’s doing that praying now for the young people now.”
Cynthia R. Greenlee, PhD, is an independent historian, editor, and James Beard Foundation Award-winning writer based in North Carolina.