Carlo St. Juste Jr. is on his way to bring his mother to a hospital appointment when he takes OZY’s call. A part-time acupuncturist and businessman, St. Juste is also the primary caregiver for his 69-year-old mom, who suffers from chronic kidney disease and diabetes.
“I’ve organized my time so I can do these things for her,” says St. Juste, 38. Before taking care of his mom, he did the same for his paternal grandmother, so he’s used to the commitment and balance that constant care for loved ones require. But that’s not to say it’s easy.
St. Juste, who was born in the United States to immigrant parents from Haiti, is one of an estimated 41 million caregivers in the U.S. who handle such commitments in addition to other duties, which often include full- or part-time jobs and other family responsibilities. In St. Juste’s case, that includes a young daughter.
African American caregivers are about four times as likely as White ones to spend more than a third of their income on care costs.
All caregivers could use more support for what is a fundamental but often invisible role. But the financial strain on African American caregivers is particularly acute when compared with their White counterparts. Generally, African American caregivers have lower household incomes than White caregivers, but spend similar amounts of money on caretaking, according to research by the AARP. Effectively, they face a greater financial “care burden.”
Some 57 percent of African American caregivers spend more than 34 percent of their annual income on costs associated with providing care, compared with 14 percent for White caregivers. This commitment extends to people’s time — 57 percent of African American caregivers meet the standard of “high burden” and spend on average 30 hours a week caring for their loved one.
The public depiction of the kind of attention that the sick or elderly need at home tends to be simplistic, but the duties that those caring for relatives and even friends face are complex. It’s not just about bathing and feeding — millions of caregivers have to perform tasks such as administering medication, tending to post-surgery wounds and helping rehabilitate patients after illnesses or operations. Although St. Juste is a qualified acupuncturist, which gives him a greater understanding of and empathy for those who need care, he says that it has been hard to find help with and advice on dealing with some of the challenges that he encounters caring for his mother.
There are socioeconomic factors that contribute to the disparities between caregivers from different ethnic groups, but cultural elements also explain why the strain caregiving places on African Americans is heavier, according to observers.
“One of the things that we’ve learned is that in diverse communities what happens in the home stays in the home. There has not been a lot of external conversation about these challenges,” says Rita Choula, director of Caregiving Projects for the AARP Public Policy Institute and a former caregiver herself. She says that for African Americans there is an expectation that “we manage many things and we manage it on our own. Many African American caregivers in the past haven’t felt comfortable talking about this and what they’re carrying.”
Choula says that few would use the word “burden” — even though 1 in 3 African American caregivers are “sandwiched” (i.e., they’re caring for a child or grandchild as well as an elder). “We’re trying to shift that conversation to ‘You’re doing the best that you can and it’s OK to ask for help and here are some ways to ask for help,’” Choula says.
There have been significant movements in policy around the issue of caregiving in recent years. The Credit for Caring Act provides tax relief for caregivers, and the enactment last year of the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act means that a family-focused caregiver support strategy is in sight. “It provides an opportunity for agencies in the federal government to take a closer look at the needs of family caregivers,” says Choula.
For caregivers like St. Juste, any help is welcome. Yet, he says, the experience of being a caregiver for years has changed him for the better.
“One thing I have learned from caregiving is that you start having empathy for other people and other caregivers in general. When you meet other caregivers you just want to tell them, ‘Hey, you got this!’” he says.