Lifting the Veil: Black Gay Caregivers Need Community Support
I knew I was not alone. I had spoken to other Black gay men who were caregiving, but it was not something that was often openly discussed. Caregiving can be a very solitary role, where you end up isolated, and unable to find an outlet for all the emotions that you’re experiencing. Because, for some, you are caregiving 24 hours, and unable to leave your care recipient.
I was taught growing up that men were the providers, and as a Black man, I was supposed to leave the home to earn a living to take care of my family. The emotional and physical care wasn’t something I was taught would be my burden to carry. The truth is, there was never going to be any other way this would go. My parents have two sons. We were going to have to shoulder this burden or consider a home for our parents.
My father’s illness had slowly gone from bad to worse. At his lowest point, we had no other choice but to engage the nursing home care system. While the nursing home saved his life physically, it was taking a toll on him mentally. We knew that if we didn’t bring him home, we’d lose him. I don’t regret the time he was there, but I sympathize with others who have to make that decision as a permanent solution. The nursing home care system is broken for the elderly, and you have to rely on the staff for the well-being of your loved one. We were fortunate, but there are others who aren’t.
“That sense of aloneness is common among many caregivers—men and women—because supporting a loved one can be so time-consuming and isolating. You go to work, rush home to take care of dad, fall asleep, and do it all over again the next day.”
I am fortunate in another way, as well. I have a brother who’s also very involved in my parents’ care. Actually, for many years he silently shouldered the burden of it, as I lived my life in Atlanta. I didn’t realize how bad it had become until 2018. I moved back into the house full time in 2019. My brother’s exasperated “thank you” was all I needed to know I’d made the right decision.
Moving back home wasn’t a difficult decision for me. My parents have always been very present and loving figures in my life, so not caring for them wasn’t an option. I found difficulty in leaving behind the life I’d built and setting aside my dreams, with the uncertainty of knowing if this transition would be my “forever” or simply my “for now.”
Caregivers Are the “Jack and Jill’s”of All Trades
Caregiving tasks are typically wide ranging and depend on the needs of the person receiving assistance. Everything from driving, cooking, and companionship, too, in more challenging situations, bathing, bathroom assistance, and medical management. My work falls into all categories.
According to the National Alliance for Caregiving and AARP, Black caregivers “...more often are in a high-intensity care situation than either non-Hispanic white or Asian caregivers…” and “... are typically the only unpaid caregiver helping their recipient and more provide care in isolation (no unpaid or paid help) than non-Hispanic whites.”
Adrian Daniel, 45, considers himself lucky. He provides care to his mother, who is independent.
“I wouldn't even look at myself as a full-time caregiver simply because my mother is very able. She's very capable of doing things on her own, her day-to-day stuff. The care, I guess, is more of a companionship aspect,” says Daniel.
“African American caregivers have been caring for 5.2 years on average. They more often are in a high intensity care situation than either non-Hispanic white or Asian caregivers.”
When asked about a time when he realized his mom needed his help, he recalled an instance where she fell.
“She fell in the middle of the night, going to the restroom. Both of us were scared because that was the first time that I'd ever seen that,” he says. “And so it was at that moment, we were both glad that we lived together.”
Hearing this story triggered a memory from late 2019 when my mother experienced her fall in the middle of the night. I had woken up to go to the bathroom when I heard my mother faintly call my name. After arriving at her door, I looked down to see her struggling on the floor. She’d fallen and had been down there for some time, unable to reach for her phone to call me. Both of us were scared, and I asked her what happened. “I slid off of the bed,” she replied. I consider this as the moment when I knew my life had really changed, and I began to embrace my new title of “caregiver.”
Prioritizing Your Mental Health and Navigating the Healthcare System
One of the key areas that I have learned more about is the healthcare system and the available support for the elderly. What I had to learn about quickly were the medications that my parents were taking, what they were being taken for, and creating a proper schedule. That part was easy, what proved more difficult was navigating State available services, and understanding the relationship between insurance companies, Medicare and Medicaid.
Daddy Rod, 47, is also a caregiver. He tells The Reckoning that “it is always good to have someone who is very knowledgeable of healthcare and how integrated it is dealing with insurance and everything else.”
Daddy Rod’s first experience with caregiving happened in the late 1990s with his paternal grandmother who had been diagnosed with Alzheimer's. He was a part-time caregiver assisting his aunt and uncle. Daddy Rod says the speed of his grandmother’s deteriorating health left an imprint on him.
“She went from being very talkative in life, you know, just being around people to the point where she just shut down,” he says.
“At that point, she was in total care. She couldn't even leave the house. We had to bathe her,” says Daddy Rod.
When his grandmother passed away in 2000, he felt like he hadn’t done enough, and vowed to be ready when the next family member needed care. That time came with his maternal grandparents in 2007. From that point forward, Daddy Rod was an active caregiver for his maternal grandparents and uncle until his uncle passed away in March 2020.
“About half of African American caregivers feel they had no choice in taking on their role, but the majority find a sense of purpose or meaning in that role.”
I resonated with Daddy Rod’s feelings. I often ask myself if I am doing enough? My father’s care is increasingly complicated, and I am often navigating his needs, my personal commitments, and ensuring that we keep my mom on the right path. It’s a lot, and it impacts my mental health.
“Both caregiver depression and perceived burden increase as the care receiver’s functional status declines,” according to the Family Caregiver Alliance.
There are resources available for caregivers, but it’s inconsistent, varying from state to state. Navigating the resources is often challenging, and something that may seem like a simple application becomes a multi-day document finding expedition to complete, only to determine that you may not qualify. I strongly contend that it’s important not to give up on looking for support. It’s needed to continue to provide care to your loved one.
It's also important to check on your friends who are caregivers. As life expectancy ages increase, more individuals will be tasked with caring for someone who is aging and/or ill. Make sure that your loved one has what they need so that they can continue to provide the required care. Daddy Rod gives me clear and consistent advice on taking care of myself as a caregiver.
“Take time for yourself, because your parents will, unintentionally, wear you down. It's work,” he says. “They're not trying to purposely do it, but we all definitely need that break sometimes.”
Johnnie Ray Kornegay III (aka Jay Ray) serves as Deputy Director of Strategy and Impact for The Counter Narrative Project (CNP), an organization committed to countering narratives and speaking truth to power. In addition, he is co-host and producer of the podcast Queue Points, a visual podcast where he and his co-host, DJ Sir Daniel, inform and celebrate Black Music creatives through meaningful dialogue.
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