Black families always have and always will do for one another. That’s who we are. And while caregiving for a loved one who can’t function independently can be an overwhelming responsibility, it can also be a blessing — whether you’re the person providing that nourishment or receiving it.
When my dad was diagnosed with cancer years ago, my mom, sister and I tag teamed as his caregivers, getting him to doctor’s appointments, cooking his meals and sitting with him when he was too weak to do much else.
This year, when I was diagnosed with cancer, I was humbled to see caregiving from a different perspective: I was the one being shuttled to chemotherapy appointments. My mom and sister were now cooking and looking after me.
My family isn’t unusual. In fact, an estimated 53 million Americans — more than 1 in 5 — have provided caregiving duties for an adult or child with special needs in the last 12 months, according to the AARP study Caregiving in the United States 2020. Of those caregivers, 24 percent are caring for more than one person and 23 percent say caregiving has impacted their health in a negative way.
The Black caregiving experience
In our community, caregiving takes a unique toll. Black caregivers are, on average, 47.7 years old and are more likely to be unmarried than other racial and ethnic groups, according to The “Typical” African American Caregiver, a fact sheet by AARP and the National Alliance for Caregiving. That means many of us are without a partner to help us carry the load. Also the recipient of care is more likely to live with us than is the case with our white counterparts. And Black caregivers have been caring for our loved ones, on average, 5.2 years, and we spend on average 31.2 hours providing care each week.
“Many of us are so used to doing everything for ourselves that we don’t feel comfortable asking for help. For example, many Black caregivers don’t use respite services, which provide temporary caregiving help so caregivers can take a break.”
Then there are the economics. Black folks, on average, make less than other groups, says Rita B. Choula, director of caregiving projects for the AARP Public Policy Institute. That means a Black family may not be able to afford to put a loved one in a nursing home, which has a median cost of $7,756 per month for a semiprivate room, according to the 2020 Genworth Cost of Care Survey.
While most Black caregivers work, according to the AARP-National Alliance for Caregiving fact sheet, they are more likely than their white and Asian counterparts to be financially impacted due to their caregiving duties. Many find themselves saving little if anything, paying bills late and racking up debt.
But the caregiving story is not all hardship.
A sense of purpose
For many of us — me included when it came to my father — caregiving is a choice. Some of us feel a cultural sense of duty to take care of family members and loved ones. In fact, AARP and the National Alliance for Caregiving found that a majority of African-American caregivers said they have found a sense of purpose in that role. “African Americans, in particular, tend to say their culture or their community really influenced the decision to be a caregiver,” says Choula.
But we have to be careful. Many of us are so used to doing everything for ourselves that we don’t feel comfortable asking for help. For example, many Black caregivers don’t use respite services, which provide temporary caregiving help so caregivers can take a break, says Pamela D. Price, deputy director of The Balm in Gilead, a Midlothian, Virginia-based organization that works with faith communities to come up with programs to eliminate health disparities that affect African Americans. One of the organization’s target areas is offering support for caregivers.
While it’s true that some Black caregivers don’t know about services that can provide help with caregiving duties, Price says, she has noticed that many tend to feel an obligation to do all of the caregiving duties themselves rather than accept help from others. “That’s one of the cultural pieces,” Price says. “We feel like this is our responsibility. We don’t want to put this on someone else — definitely not on people we don’t know.”
Choula agrees, saying, “What we hear caregivers say so often is ‘this is my job, I should know how to do this.’”
But if we learn to lighten our load, we can better enjoy the parts of caregiving that we like, such as spending time with our loved one and helping them get through a challenging period of their life. Here are some ways we can do that.
Learn to say “yes.” When friends or other family members ask if they can do anything for you, instead of saying “I’ve got this,” say “yes.” During my illness, we asked cousins and friends to bring over dinner at times so my sister wouldn’t always have to cook. There are also ways that loved ones can help remotely, such as by sending a meal via the websites Meal Train or Send a Meal sitting in on doctor’s visits via FaceTime.
Take advantage of financial help. Respite care may not be covered by many private insurance companies, but veterans and Medicare recipients who are receiving hospice care may be eligible for free or low-cost benefits. Also, check with your state health department to see if they offer programs to help caregivers. You may even be able to get paid for providing caregiving services to a loved one if they are a veteran or a recipient of Medicaid.
Lean on faith. According to the Pew Research Center, 75 percent of African Americans say religion is very important to them, compared to 49 percent of whites and 59 percent of Hispanics. We also are more likely than other groups to attend weekly church services. Bible studies and church support groups can be helpful to caregivers who are already rooted in their spiritual beliefs, Price says.
Create community. Caregiving support groups can offer information about resources that can help or simply provide a safe space for caregivers to vent. Do a search on Facebook or check out the forums at the Caregiver Action Network.
“There’s nothing wrong with this expectation that we take care of others,” Choula says. “But we must provide resources and support to caregivers so they can do what they want to do.”
I’ll always be grateful for the love and care of my mom and sister when I found myself suddenly in need of a caregiver. I’m even more grateful that they haven’t gotten burned out in the process.