Care work is the work that makes all other work possible, although detrimentally undervalued and often unseen. This devaluation is deeply rooted in the historically racist, patriarchal structures of uncompensated slave labor, which viewed caregiving as women’s work in the home, associated with women of color, and which is increasingly performed by undocumented immigrant women. This article explores the firsthand experience black caregivers continue to face today, with a particular focus on inherited values, challenges, and the women behind this essential yet undervalued work.
caregiver, Black caregiver, equity, Black families, generational values, care infrastructure
A family tradition is a pattern of behavior that reflects and reinforces a family's values, attitudes, or beliefs. For my family, this took the shape of caregiving—an intergenerational practice that, while it represented our values, has been left unsupported and isolated by U.S. policies and societal beliefs. It started with my abuela, a domestic worker who, for more than a decade, worked in private homes and even in one governor’s mansion.
In 1948, at age 24, there was an explosion in her employer’s kitchen that resulted in the gradual loss of her eyesight. As her sight diminished, my mother and her sisters took care of her. For an entire generation, my mother and aunts struggled to navigate the fractured care system, desperately trying to care for my abuela, with no support outside of family or access to trained quality care. They consistently faced poverty, and barely kept their heads above water.
Although my abuela died before I was born—statistical odds stacked against us—I knew her (Noonan, Velasco-Mondragon, and Wagner, 2016). Her spirit lives in every story my mother tells, the lessons we have learned, and the actions of my family. I grew up in a family that lived by the phrase, “make it work”—a mantra not uncommon for women of color (Woods-Giscombé, 2010).
When in 2018 my partner and I found out we were having a baby, we knew our family would do the same to help us offset the high cost of full-time childcare. The plan was for my now retired mother to care for my daughter half of the week so my partner and I could maintain our full-time jobs—a common arrangement resulting in more than 2.5 million grandparents in the United States acting as primary caregivers of grandchildren (U.S. Census Bureau, 2018).
Like many families, we were piecemealing everything together to make it work—but when my daughter was 6 months old, my mother had a major heart attack. Seemingly overnight, the family tradition was passed to me as I joined the ranks of 43 million Americans who take on the added role of family caregiver—a relative, partner, friend, or neighbor who provides any form of care to children, older adults, and people who are disabled. And just as they did for their mother, my aunts flocked to my mother’s side. Once again, for the second time in their generation, my aunts helped weave together a care plan that would become my inherited responsibility.
‘But care is a job.’
I juggled as well as I could—navigating the hospital system, childcare options, negotiating leave at my former job—all while trying to ensure my mothers’ autonomy and her choices were being respected. She didn’t want to live in an institution, she wanted to be cared for at home. However, she didn’t want to make us feel as if caring for her was our sole responsibility or another job for me, either.
But care is a job. As activities performed by people to provide services for others, both paid and unpaid care work meet the definition of "work" (International Labor Organization, 2018). For a while, the job of one full-time caregiver was split between family members: we rotated shifts, provided companionship, prepared meals, managed medications, liaised with medical providers, and spent hours on the phone with insurance companies struggling to coordinate something as simple as wheelchair and walker coverage. These are tasks family caregivers report spending 24 hours per week performing for their loved ones (AARP and the National Alliance for Caregiving, 2020). Eventually, when family members left for home, my father and I faced the reality of the long road ahead.
Although my maternal side is Puerto Rican—due in large part to the color of my skin, my Black father, and the greater extent of my cultural upbringing—I am a Black woman. My experiences with care are that of a Black “sandwich caregiver,” named to express the feeling of being squeezed between two or more sets of caregiving pressures (Weber-Raley, 2019). In my case, providing care for a young child and aging parents.
More than a fifth of Black adults and nearly a third of Black caregivers fall into this Sandwich Generation (Parker and Patten, 2013; Bonello, 2020). Furthermore, 57 percent of Black family caregivers fall in the “high burden” caregiving bracket—providing an average of thirty hours per week (Bonello, 2020). For these caregivers—the majority of whom are women—the double-duty caregiving responsibilities for children and adult family members cause especially acute financial and emotional stress, forcing families to cut back on work hours and navigate disjointed fragments of a care system with little to no formal support (Weber-Raley, 2019).
I learned firsthand that this lack of formal support severely limits families’ options. Caring for your loved ones should be a chosen responsibility—not a byproduct of a fragmented system. However, for many of us, the choice of caregiving was more of an inherited burden presented as family values.
Family and societal expectations—underlined by the lack of adequate systems and supports—culminate in limited options and a reinforced false narrative that we (family members) are in this alone. I will always remember calling my former employer from the hospital lobby to ask—to plead—for more time off, only to be told that I had exhausted my leave for my daughter’s birth; and in the next breath being asked when I would turn in the report that was due.
Sitting in the family hospital waiting room, there I was—frantically typing to meet a deadline on one half of the laptop screen, and looking at a list of post-recovery care options for my mother on the other. I remember the quiet—the clicking of my keyboard, and the heavy feeling that I had no choice. I was in this alone—there were no universal leave options, not enough long-term services and supports (LTSS) benefits, and no access to free quality childcare to alleviate the added responsibilities I had as a working mother and caregiver.
The devaluation of care in such narratives is deeply rooted in the historically racist, patriarchal structures of uncompensated slave labor, which viewed caregiving as women’s work. Even 156 years post-slavery’s abolition, care remains devalued and those experiencing the deepest inequities are women of color—like myself, my mother, and my abuela.
We are told, and we tell ourselves to just “make it work.” Devaluation of care ripples through our society, and care jobs like my abuela’s remain disproportionately undervalued. As sociological studies have shown, gender- and race-based biases associating care work with women of color foster the devaluation of that work.
Even when controlling for necessary skills, educational requirements, and industry, there exists a net pay penalty of 5 to 10 percent for care-related occupations (England, 2005). Often domestic workers—those who work in the households of their employers—have families of their own. At least 60 percent of domestic workers in the United States are younger than age 50 and thereby likely to have children of their own to care for (Wolfe et al., 2020).
Moreover, 58.3 percent of domestic workers are women of color: a group that is statistically more likely to live in multigenerational households where they are expected to perform unpaid caregiving for older loved ones (Wolfe et al., 2020). Caregivers are underpaid for their time and labor, with 36 percent of caregivers of adults older than age 50 reporting moderate to high levels of financial strain (AARP and the National Alliance for Caregiving, 2015). This financial strain can preclude caregivers from attending to their own families’ care needs, further perpetuating the cycle of maintaining responsibility because there’s no other choice. We must move away from the false narrative that care is done on your own.
‘We must move away from the false narrative that care is done on your own.’
Care is valuable—both outside and inside the home. Care is essential, allowing families to sustainably participate in the workforce (Kalipeni and Kashen, 2020). However, the United States has a long way to go before its policies are comprehensive enough to support the full spectrum of care needed for families. The productivity lost in the U.S. economy due to our lack of a comprehensive care infrastructure is more than $25 billion per year, a seemingly impossible-to-close gap that has pernicious effects on caregivers’ livelihoods (Witters, 2011). Without concerted investments in care infrastructure, many families will be unable to engage in the economy and will be forced to pass down the cultural expectation to care for your own and just make it work.
For Black households especially, the cultural expectation to maintain care of loved ones regardless of financial stressors, can create the feeling of loneliness or isolation. On average, one in five U.S. households are intergenerational; 13 percent of non-Hispanic White households and 34.7 percent of Black African American households are multigenerational (Cohn and Kochhar, 2011). The assumed caregiving responsibilities that many of these households’ caregivers face create additional stressors. A survey released in 2021 by the Diverse Elders Coalitions’ Caregiving Initiative found that approximately 30 percent of Black caregivers report feeling more isolation and physical and mental strain as a result of caregiving responsibilities (Boddie and Le, 2020).
Black family caregivers represent 14 percent—approximately 7.2 million—of the estimated 48 million unpaid family caregivers in the United States, with Black women comprising 7.49 percent of this population (AARP and the National Alliance for Caregiving, 2020). There is unprecedented pressure on unpaid care work as the rapidly aging population increases the demand for care labor. With one out of six individuals expecting to become caregivers within the next two years, there is no alleviation of this burden in the future, either (Edwards et al., 2020). Despite incremental progress addressing racial inequality, the disparities that effectively turn the responsibility of care into a burden of care are detrimental to the advancement of Black family caregivers in the home, the workplace, and the community, therefore stunting the progress and economic mobility of these individuals.
Displaced and Struggling
Displaced especially are middle-income families—many of whom do not qualify for public benefits due to income regulations, but still fall short of the income needed to fully support paid caregiving. Black middle-income families face particularly large barriers due to a lack of accumulated wealth—they are more than four times as likely as those in White middle-income families to have parents below the poverty line (O’Brien, 2012). This means many middle-income Black caregivers likely experience more significant strains on income. The average cost for center-based daycare in the United States is $11,896 per year for an infant and $10,158 per year for toddlers (Child Care Aware of America, 2019).
Meanwhile, according to Genworth’s 2020 Cost of Care Survey, the average annual costs of homemaker services and home health aides for an older or ill adult are $53,768 and $54,912 per year, respectively (Genworth, 2020). The stark facts today are that with the high costs of childcare and LTSS, only the wealthy can afford to choose how and where they care, and only the poorest can access that care through under-resourced public programs—leaving the majority (52 percent) with little recourse but to care for their own (Bennett, Fry, and Kochhar, 2020).
With the heightened pressure of needing to provide care, employment is critical to survival. While six out of ten family caregivers remain employed, Black caregivers are most likely (64 percent) to work while providing care and often have no access to family leave policies (Feinberg and Skufca, 2020). And while family caregivers report being penalized or discriminated against due to their caregiving responsibilities, Black caregivers were more likely to report a higher occurrence of penalization or discrimination at work due to their caregiving obligations.
Family caregivers who provide care to adult relatives or friends spend an average of $6,954 of their annual income, or nearly 20 percent, on out-of-pocket costs, such as rent and utilities, home modifications related to mobility, insurance costs, and other medical expenses (Mehegan, Rainville, and Skufca, 2016). Between the two generations for which I care, I spend nearly 40 percent of my full-time income on care—working a second job as a consultant to offset expenses to ensure I am able to pivot to meet my family’s shifting needs and maintain my ability to work toward generational wealth. This goal is disproportionately out of reach for the average Black family, which maintains a wealth rate nearly ten times less than the average White family (McIntosh et al., 2020).
My care expenses are far from uncommon; parental caregiving is known to be a decelerator of wealth (Lee, 2015). Black caregivers spend more than 34 percent of their annual income on care-related costs, compared to 14 percent for their White counterparts (Mehegan, Rainville, and Skufca, 2016). Women, particularly those with low incomes, who quit their jobs or retire early due to caregiving responsibilities lose, on average, more than $142,000 in wages and more than $131,000 in Social Security benefits over the course of their lifetimes (MetLife Mature Market Institute, 2011).
Women who quit jobs or retire early due to caregiving lose more than $142,000 in wages and more than $131,000 in Social Security benefits.
Being a Black working caregiver means that I often navigate systems created as a way to exclude me and my family. Black family caregivers hold a crushing amount—inequitable access to medicine, poorer treatment quality, and distrust of the care system (Rucker and Williams, 2000; Institute of Medicine, 2003; Kennedy, Mathis, and Woods, 2007). Overall, this underlines a dichotomy around current policies and our ability to access and navigate care systems. We age with a higher rate of health conditions, affecting our life span and quality of life; many of these conditions are due to the lack of access to quality care throughout our lives, and the limits of policies that support our responsibilities (Taylor, 2019).
Many of us constantly operate in crisis mode. We take out credit cards, rally friends and families to support us in emergencies. But the truth is we’re almost always teetering on the edge of disaster. So many times I have felt that I am almost at the end of my rope, one unexpected bill short of it all falling apart. However, it’s hard to express this. Cultural notions have made it so that many Black caregivers do not talk about mental health distress at the same rates as their White counterparts (Blue Cross Blue Shield, 2020). We need to shine a spotlight on care, and its impact on our livelihoods.
Invisible No Longer
Until the pandemic caregiving was rarely mentioned publicly—especially in the media—but by 2021 “Care Infrastructure” was trending, with care work called as essential as bridges and roads (Donegan, 2021). But the emerging debate, sparked by President Biden’s announcement that the American Jobs Plan includes a $400 billion Medicaid expansion, is neither new nor surprising. Care has always been infrastructure; from childcare to paid leave, to home- and community-based services, care is a need shared by all at some point in our lives, and is fundamental to enabling economic activity. But it has never before been valued as such in our political discourse because women—especially Black women—have shouldered the work of our care economy.
To improve Black lives, we must improve care. Care is essential to our health, wealth, and livelihood. We need to keep the momentum going through intentional investment, and by centering those most impacted by the crumbling infrastructure—Black and Brown sandwich caregivers like me.
COVID-19 has shown our country what happens when families lack access to quality, affordable childcare or eldercare; when care systems and facilities cannot ensure the safety of those in their care; when women must choose between their careers and their family; and when workers must choose between their health and their livelihoods. The consequences of the pandemic have been significantly greater for Black communities—particularly Black caregivers at the intersection of multiple socioeconomic challenges. These unpaid caregivers face a disproportionate number of emotional, physical, and financial challenges that affect their ability to care for themselves and their loved ones (Boddie and Le, 2020).
Perhaps even more alarming are challenges facing Black mothers, especially in the wake of the pandemic. As childcare centers and schools closed, women of color were hit hardest as they disproportionately hold care jobs, have partners who work outside the home, and have long struggled to gain access to such services for their kids. Black women, of whom 73 percent are primary household breadwinners, make up a bit more than a tenth of all women workers in the United States and have the highest labor force participation rate among women (U.S. Bureau of Labor Statistics, 2021). But, one in four women is considering leaving the workforce or downshifting her career due to COVID-19, and since March 1, 2020, 11 percent of Black women have reported quitting a job for reasons related to COVID-19 (Ranji et al., 2021). Prior to the pandemic, mothers were three times as likely as fathers to leave the workforce due to increased care needs for a family member (Parker, 2015).
I envision a world where I don’t have to choose between work or care; where I don’t have to make the impossible choice between paying for my mother’s care over my daughter’s; a world where waiting lists are cleared so high-quality, affordable care is an option; and where care jobs are good jobs. For too long, we have lived with a patchwork system, tethered together with the flimsiest of threads; passing down the mantra of “make it work”—it isn’t enough. As the population grows, we need to make care the heart of our values. Supporting caregiving, both paid and unpaid, is at the core of how we move forward. The devaluation of care has created gaps in our infrastructure; which has created the false narrative that the responsibility for care is held individually or by one’s family.
There is joy in knowing that I am able to share this journey with my mother and father. Joy in knowing I am able to provide them with as much support as I can; incorporate them into my daughters’ history and understanding of her ancestry. I feel rooted in our relationship, but we can no longer remain rooted in the false narrative that care isn’t a priority for our society.
We deserve more. We all deserve to be treated fairly, with dignity, and have our needs met in our care—most importantly we deserve the choice of how we want to give and receive care. We have the opportunity to break the cycle and not allow our children to inherit a broken care system and the responsibilities that come with it. As I look at the traditions and values my daughter will inherit—choice must be at the center.
Sade Dozan is the Senior Director of Development at Caring Across Generations—a campaign working to change the way care is valued in this country through policy, advocacy, and culture change initiatives. She may be contacted at email@example.com.
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