Isolation for Black caregivers: ‘A way of life at this point’
This story was reported with the support of the Solutions Journalism Network.
On a hot and rainy afternoon in August, Kesha Washington, 43, sat on her enclosed porch in Rochester’s 19th Ward neighborhood.
Washington, who works at a nationally recognized bank, is a busy woman. She is the mother of a son who is now entering the ninth grade. She’s active in her church and very involved with her family.
This is what people see, what people know about Washington.
When the bank’s Zoom calls end, Washington’s second job starts — that of caregiver to her elderly mother, who has battled lung and brain cancer and needs daily care.
The experience can be isolating. Because she isn’t one to share what she’s going through, not everyone knows Washington’s struggles, which she describes as "a way of life at this point." She’s grateful that she has her sister to go through it with, Washington said.
"I definitely think that if you don’t know, you don’t know and I’m not the one that going to tell you," Washington said. "I was up with my mom all night trying to make sure she didn’t fall when she went to the bathroom. That’s personal. You don’t want to tell people that. It’s borderline embarrassing."
Black caregivers who provide sole support for family members are more isolated from support than their white or Asian peers, according to the AARP.
African American caregivers also tend to be younger, are often unmarried, have poorer health and have to frequently balance caregiving with full-time jobs, according to a May 2020 AARP/National Alliance for Caregiving fact sheet on “The ‘Typical’ African American Caregiver."
About half of African American caregivers feel they have no choice in taking on their role but the majority find a sense of purpose or meaning in that role — more so than non-Hispanic white or Asian caregivers, according to the fact sheet. African American caregivers are more likely than non-Hispanic whites to be providing care without compensation or outside help, according to AARP.
While caregiving can be isolating and emotionally exhausting, Washington said that for her, there’s really no other way to do things.
"I think it’s built into who we are as people, especially Black people," she said. "Being Black is all about family, there’s really no option. If your mother needs help, you help your mother. If your grandma needs help, you help your grandmother. That’s just how it goes. I don’t think there is any other way. So that’s how we manage."
Like Washington, there are many caregivers who experience isolation and similar challenges that may come with caregiving. Caregiving can be lonely and tiring and some caregivers seek support from outside sources when it gets to be overwhelming.
A lifeline for caregivers looking for connection
California native, Estelle (Bobbe) Akalonu was the sole caregiver to her aging mother who had vascular dementia, which is the second most common form of dementia in older people caused by an impaired supply of blood to the brain, often due to a series of small strokes.
As sole provider, Akalonu began to feel the effects of social isolation that so many other Black people experience.
She knew that she was not alone in her isolation, but she felt she needed to reach out for support from others who were having the same life experiences.
Akalonu soon found it from the Family Caregiver Support Center at the University of Southern California Leonard Davis School of Gerontology, which is home of the Los Angeles Caregiver Resource Center.
Akalonu began attending a support group and caregiver meetings held on the USC campus, working with counselors and social workers made available to her.
“I was taking care of my mother and I needed the service of this remarkable institution,” Akalonu said.
The social isolation of caregivers, especially Black caregivers, has always been a problem and that challenge is unlikely to go away any time soon, Akalona said, adding that her experience with the resource center is desperately needed in the African American community.
The USC Family Caregiver Support Center provides free services for caregivers age 18 and over in Los Angeles County to aid in their caregiving process. The services available through the center include information and referral, education and training events, support groups, family consultations, online services and respite. Caregivers can use these services on the phone, in person or online.
The center provides support across the spectrum of caregiving including diagnosis, prognosis and services that help maintain the care recipient’s independence and abilities. It also helps caregivers manage their own well-being and care for themselves.
The program is funded through a contract between USC and the California Department of Health Care Services.
Akalonu said the support she received gave her the yearning to form a support group for other caregivers and look at existing solutions to help reduce isolation among Black family caregivers.
“It’s been around a long time. And we need to have, definitely a way to solve the problem or at least address it on a national, even a global level perspective,” Akalonu said. “There is so much that is evident not only presented by the disparity of the distribution of information but also resources.”
A collaboration between church and community
Akalonu founded and co-facilitated the First AME Caregiver Support Group and USC Family Caregiver Support Center partnership.
The program, which has existed for 7 years, is considered a part of the services offered by USC’s Los Angeles Caregiver Resource Center through its contract with the California Department of Health Care Services.
After being connected with the center, Akalonu met and befriended Dr. Donna Benton, who is part of the USC Department of Gerontology and serves as director of the Los Angeles Caregiver Resource Center.
Akalonu had such a great experience with the center that she suggested to Benton that another support group be added at First AME. Akalonu said her centered upbringing led her to feel that the church and missionary society would be the perfect vehicle to combat isolation among Black caregivers.
"Our roots are in people who believe in community service, and it has all manifested itself through the church," Akalonu said.
USC later decided the additional group would be a good way to establish a stronger connection to the center, which serves all of Los Angeles County for family caregiver support services.
Akalonu, key to the development of the collaboration, presented a proposal to her pastor Reverend "J" Edgar Boyd, and the First AME Church Support Group was born.
A strong advisory group and visionary leadership from both First AME and USC Family Caregiver Support Center solidified the group’s success, said Akalonu and Benton.
Before the onset of the coronavirus pandemic, the group met in person twice a month at the First AME at the Allen House near downtown Los Angeles. It is open to the public, not just Black caregivers.
During the 90-minute meetings, attendees – typically mostly women – share stories of both grief and triumphs, offering a supportive ear to one another. Since March 2020, the peer-led support group has met via conference call, and Akalonu said the conversations have continued to draw as few as 8 to 25 people, depending on the evening.
The group members will often participate in university research related to caregiving; As a caregiver, Akalonu discovered that participation in support solutions was an extremely important part of how the caregiver role is perceived.
"We’ve been a part of the focus groups that come out of research that relates to not only caregiving, but, elders who are experiencing the isolation of this particular period of time,” Akalonu said."The School of Gerontology at USC is the oldest one in the world. And they are critical to some of the research that’s being done with elders. So, I felt that with the match and the mix of experiences for caregivers, you benefit from something that is a part of a positive interaction rather than a negative one."
The target audience for the group is unpaid family caregivers, rather than those employed as home care workers, Akalonu said.
"We’re not looking for caregivers who are employed by the state or by some other arrangement. We’re looking for unpaid [caregivers] because that’s where the impact of what we do really affects — at the ground level of the family and their ability to function with limited resources that are further limited by taking care of a person.”
Though Benton and Akalonu have seen success in their approach, they said they have plans to expand and improve the program, in part by offering training for support group leaders. Akalonu was recently part of a caregiving webinar that discussed support group facilitators being fully equipped to represent and interact with caregivers in underserved communities.
“Basically our improvement is to get the facilitators trained in our various churches (and) large communities. I think improvements in the sense of expanding how we work as communities is extremely important,” said Akalonu. “We have excellent people, but we want them to be fully trained on how to interface with these resource centers,” she said.
They are also currently working on developing a manual for replication of the program, Benton said.
With the aging population increasing, the caregiving crisis will only magnify. Akalonu said feelings of isolation among caregivers is not a problem that will go away without something being done about it.
"We need to unmute and take action and that’s not confrontational, it’s just doing what needs to be done,” she said. “We don’t need any more reports. We don’t need any more studies. We just need to do it."
Caring in isolation takes a toll
Back in Rochester, Washington and her family have the caregiving down pat more or less. She, her sister and her grandmother hand-off to each other when they need to. They have a system.
On the previous Sunday, Washington’s grandmother called to tell her that she was going to church and that meant Washington’s mother would be left alone. Washington immediately sprang into action, calling her mother, who was still asleep, by phone.
After checking on her mother, Washington texted her sister to let her know what was going on. Throughout the rest of the day until her grandmother returned from church, Washington called periodically to check on her mother.
"I think it’s just family," she said. "I don’t want to say it’s an obligation, but it’s just — a part of being a family is taking care of your own."
She doesn’t view caring for her mother as a burden.
"It’s like, ‘I get to do this for her,’ it’s not like,” Washington sighs, flailing her arms, “‘Oh, I have to do this, I gotta do that’ — but it didn’t start off that way. It started off like, ‘I can’t do this.’ … But it’s like — her symptoms are not her fault, it’s the result of a tumor. It’s not her fault that she can’t stand up by herself. It’s the swelling that’s making her brain think that she’s sitting down."
"It’s crazy when your body thinks that you’re doing one thing, but your mind is actually telling your body to do something else. It’s a lot to handle, so I think just keeping things in perspective, like, ‘Okay, I get to help her.’ I get to help her do her insulin. I get to help her go to the doctor."
According to an AARP survey, more than a fourth of African American caregivers report having no family, friends or neighbors to help them, which makes them solely responsible for all caregiving duties and increases their risk of care-related strain.
The survey’s findings also revealed that about a third of African American and Black caregivers report being more isolated, and they experience mental health and physical health strains due to caregiving.
The last several years have affected Washington in many ways, she said. For one, she’s much more conscious of her own health.
Because her mother was in the hospital for four months, Washington doesn’t even like driving by hospitals at this point. She remembers walking through the hallway, seeing ill people and thinking, at the time, that the doctors didn’t care.
With her son in mind, Washington wants to focus on her own health to ensure that she’s doing what she can to prevent and fight illnesses.
Her experience has also deepened her faith, Washington said.
"It’s definitely built my faith," she said. "Because when people go through things like this and you don’t know what’s happening or what’s going to happen or what’s next, you really have to dig deep and my relationship with God has gotten stronger from this experience with my mom."
She said that the experience has made her more empathetic to what people might be secretly going through.
"People deal with stuff that you don’t even know about."
Tyronda James is a reporter and copy editor for The Minority Reporter. Reach her at firstname.lastname@example.org.
Adria R. Walker covers public education for the Democrat and Chronicle in partnership with Report for America. She focuses on the viewpoints and needs of parents in the Rochester City School District. Follow her on Twitter at @adriawalkr or send her an email at email@example.com. This reporting is made possible by readers like you.
About this project
This and related stories on solutions to assist isolated Black family caregivers are produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group, supported by the Solutions Journalism Network, has been producing stories on potential solutions to the challenges facing caregivers of older adults. Click here to read Deanna Dewberry’s story.