Black Family Caregivers Face Major Financial Hurdles

Sian-Pierre Regis’ family never thought the day would come when his mother, Rebecca Danigelis, would stop working. Then she lost her job as a hotel housekeeper in 2016, a position she held for nearly 40 years. At the age of 75, Danigelis found herself teetering on the edge of financial ruin. All she had were 600 dollars in her account, two weeks of severance pay, limited job prospects, and one year to vacate her apartment unit. But she also had her family. When life pushed Danigelis completely off her feet, her son Regis was there to catch her.

Many Black men step into or—as Regis himself admits—fall into adult caregiving. In 2020, 2.3 million Black men made up about 13 percent of all adult men caring for adults. While more research has begun to explore the experiences and needs of caregiving men, very little is known about Black men who care for adults.

Regis, a 36 year old journalist by training, has emerged as a key voice advancing the current national conversation on care through storytelling. The filming of his documentary, Duty Free, began in 2016 and follows mother and son through the highs of life—as the pair cross activities off of Danigelis’ bucket list—and the lows, as Danigelis struggles to find work, facing both ageism and a growing technological divide.

Regis didn’t always consider himself an adult caregiver. In fact, he saw his 2016 decision to pack his bags and temporarily relocate to Boston, as well as the filming of Duty Free as immediate, visceral responses aimed at helping his mom get back on her feet. Regis says that it wasn't until much more recently in 2020 that he actually came to view himself as caretaker. The metamorphosis was a gradual process. As Regis’ conception of caregiving changed and living arrangements shifted, he grew into his new role caring for his mother.

"Before last year, I would have said that I was just showing my mom love. I was there for her when she needed me.” Part of his mental shift, he said, was spurred by a newfound understanding about what caregiving actually looked like.

After his mother moved into his New York apartment with him and his partner, and as the pandemic ushered in a robust national conversation about care, Regis came to realize that “being a caretaker doesn’t only mean giving pills or bathing your parents.” Rather, caregiving also meant “being there and responding to [my mom’s] needs at any given moment.”

Throughout Regis’ life, his mom, a British immigrant and the sole caregiver and breadwinner of their small, tight-knit family, did her best to meet both her sons’ needs. Regis remembers that growing up, “it felt like we were all we had a lot of the time.” When Regis went off to college, his mom drained her 401k to help cover the costs. As she continued working into her seventies, she simultaneously supported Regis’ older brother who lives with a mental illness. Regis’s mother always took care of her sons, so in the midst of loss and instability, it was Regis’ turn to step in and care for her.

One of the millions of Black men caring for adults in the United States, Regis regularly assists his mother with what he calls, “small things.” In reality, the tasks he performs are quite essential to a person’s health and wellbeing, and researchers and health practitioners label them instrumental activities of daily living. Although Regis describes his now 79-year-old mom as “very independent, very active, and a boss at grocery shopping,” he does help her manage certain aspects of her life, including her health. For Regis, this kind of care looks like sitting down with mom Danigelis to figure out financial planning, helping her schedule health appointments online, and bringing her to doctors’ appointments.

According to Regis, the most challenging part of caregiving occurred early on. Even before he truly identified as a caregiver, Regis had to confront both his own and his mother’s financial insecurity. When he first learned of his mom’s situation in 2016—few savings, little to no job prospects, and impending homelessness—he was a journalist trying to pay back his college loans. Although his mom was lucky enough to eventually secure a part-time job which eased the financial strain, the COVID-19 pandemic hit in 2020, leaving her furloughed and once more, without an income. Regis says that at the time, he had no idea how he was going to make it work. “I didn't know how I was going to double my rate to keep her and myself afloat.” Unfortunately, Regis’ story is not uncommon.

The Better Life Lab found that 20 percent of caregiving Black men who have ever cared for adults or children with special needs expressed that caregiving had a negative impact on their household finances. Other research documents the extent to which Black caregivers, regardless of gender, experience financial insecurity; while managing their caregiving responsibilities, some find that they have to cut back on savings or take on debt.

When Regis needed to care for his mother, he did what he could with what he had—this is both the norm and the problem, he says. “It falls upon every individual in this country to figure out how to make the money work. People take second and third shifts and figure it out on their own.” His film Duty Free, touched upon the universal experience of aging in a nation that has little to no robust care infrastructure and social supports. After its release, viewers sent him messages telling him that the story he shared with the world was their story too.

Perhaps Duty Free, released May 10, 2021, came at exactly the right time. The Biden Administration has put forth proposals aimed at building child care infrastructure, ensuring all caregivers have paid time off to care for themselves and loved ones, and strengthening the home care sector. Duty Free is not just a conversation starter. It is a part of the growing movement to increase awareness about the different facets of the caregiving experience and the challenges caregivers and their families must face without adequate public support.

The issue of caregiving is finally receiving the attention it deserves, and Regis hopes that Duty Free can add fuel to the fire. “If the film shifts hearts and minds, empowering people to believe that they not only can give care and dignity, but that they are also deserving of it themselves, then we know that we have made a difference.”