Editing the publications of the American Society on Aging has always felt more like a privilege than a job. During the past 13 years working here, I have learned much more than I originally thought possible. I hadn’t come into the job blind, mind you; likely the story of my parents helped me to obtain it in the first place.

But isn’t that how most people get into this field? It’s personal, as much as it is professional.

I’ve already told this story to anyone who will listen, but my dad died of Alzheimer’s (well, really from a fall in which he hit his head), at 84 after 8 active years of the disease, by which I mean things were off for years prior to us realizing it, of course. But of interest to this article, for all of those years, my mom, who was only 2 years younger than he was, cared for him mostly alone (my sister lived near-ish and helped out when she could while raising young children). In retrospect, our mom had to have been exhausted, and was often angry at dad, correcting him before people knew to just distract and move on.

After his death, mom had a few nice years, then two hip surgeries and a fall from a step stool. That fall rapidly led to her being paralyzed from the neck down, able only to lift one arm. She lived out most of the next 3 years on hospice in a board and care facility with lovely paid caregivers, decent food, and, importantly, access to the Tennis Channel. Somehow she maintained a level of graciousness the entire time that still baffles me and my siblings.

We were extremely privileged in that our mother was able to fund this level of care, as none of us could have cared for her in our homes. We also were lucky to have figured out that the first nursing home immediately post–brain surgery nearly killed her, after which we moved her to a beautiful assisted living facility where she contracted full body MRSA and several bouts of severe pneumonia. In time we also figured out the care there was terrible, but in the moment each mounting illness was just another trial to muscle through. Mom was made of incredibly tough stuff, so on she went until we found a place where they cared for her.

Despite not doing the bulk of the caregiving, the whole experience taught me multiple lessons, none larger than what it takes to really care for someone.

This is a long way of saying that the Fall 2021 issue of Generations, “Care Is Fundamental,” is my choice for the issue that has lodged most firmly in my head and also in my heart since I’ve worked for ASA. Josie Kalipeni, the Guest Editor who laid the foundation for the issue with her introduction, and Sadé Dozan, who contributed a piece, wrote two articles I’ll never forget.

Lasting Impression of One Family’s Fate

Kalipeni’s article, Care in the United States: Our Moment of Crisis, could, I’m sure, have been written 20 or 40 years ago, and until there’s some sort of caregiving revolution (which these two authors are fomenting, by the way), could be written again in the future.

But this issue’s timing was critical as it was the pandemic that brought the topic to the fore for Kalipeni and her family, inspiring her to write a deeply personal, thoughtful and yet policy-based, solutions-oriented piece. Or as she said, “The pandemic didn’t so much expose the challenges of caregiving, as it blew the lid off of a national secret: Caregiving as an individual is a nearly impossible task and it should be a collective responsibility.”

In this one article the challenges of caring for someone, the complexities of immigrating to the United States, the reality of the United States’ total lack of caregiving infrastructure, and the fact that white-collar professionals may lack a retirement plan are all brought to bear. In a story that is impossible to put down.

The image of her family debating how they’ll care for her father, who had moved back to their native Malawi to save money and became ill, and her mom, who had used up her paid leave to care for him when he had visited earlier in the year, is beyond poignant. And to think he died in Malawi while they were still figuring out how they might pay for travel to help him clearly demonstrates the dire economic impact of such scenarios.

To me this piece shows what can make Generations great—a gripping narrative, steeped in unique personalities, yet relevant to everyone and presenting potential solutions.

Championing Choice in Caregiving

The second piece forever etched in my mind is Sadé Dozan’s article, Making it Work: Care, Blackness and Generational Values. That article hammers home how, in the United States, caregiving is undervalued as a job and as an intergenerational value. In Dozan’s piece, she and her partner are just holding it together—both of them work and they rely on Dozan’s mother for childcare—when her mother has a heart attack.

That’s when the carefully woven fabric of caregiving barely holds, the author finds herself in the role of caregiver as her aunts step in to help. Dozan skillfully uses her personal story as a Black “sandwich caregiver” to weave in statistics our nation should face and fix but does not prioritize. And how even in a position with what would be presumed is an empathetic employer, Dozan finds herself in an incredibly tough spot as she cares for her mom in the hospital. She writes, “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.”

Like Kalipeni, Dozan is a nimble writer, weaving in our country’s devastatingly racist, patriarchal history with what remains today, which is a devaluation of care work in general and dependence upon women to make it all work out somehow. Before this issue, I understood the situation, but I hadn’t seen it described so unflinchingly by anyone before Dozan.

She also takes on the cultural expectations of women, especially in Black African American households where one is expected to care for loved ones no matter how economically devastating it is, which tends to leave one isolated and lonely as well. Dozan also clearly explicates the financial burden of family caregiving, which can zap as much as 34% of one’s annual income.

This story, and the entire issue, is wrapped up neatly with the dream that someday we might be able to choose a better option: “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.”

Written solely by women of color, it was an unusual Generations issue is many ways, and one that proved seminal in evolving how we do things here at ASA. It reiterated for me what I had known, but maybe not truly taken in, which is the level of privilege my family benefited from when caring for our parents, and how much harder that decade might have been for us.

I’ve learned an awful lot from the pieces I’ve edited at ASA, about how we age in this country, and also about how ancestral circumstances color these aging processes and compound across the generations. It was such a privilege for me to have a chance to work with these incredibly accomplished, brilliant women and I still treasure the work we did on this issue and have done together since.

If, for some reason you have not read “Care Is Fundamental,” I cannot recommend it highly enough.

Alison Biggar is ASA’s editorial director.

Care in the United States: Our Moment of Crisis

By Guest Editor Josephine Kalipeni

Author’s Note: I was excited to serve as Guest Editor for this historic issue of Generations Journal. All of its contributors are women of color, which is a first for this publication. My participation is an opportunity to continue the conversation on race, gender, and equity within the context of aging.

Advocacy in aging conversations often address issues in silos, as if aging erases one’s gender, race, and other identities. Nothing could be further from the truth. These articles show how deeply entangled identities are. I am proud to be a part of the intentional shift the American Society on Aging is taking to be a conduit for these sometimes-uncomfortable conversations. I hope this issue inspires you in your advocacy and activism. I hope you are challenged to see the whole of people in how they experience life.

The COVID-19 pandemic happened in the exact manner the need for caregiving often happens—suddenly and overnight. You go to sleep peacefully and wake up to realize your world has shut down. You scramble for a few weeks while trying to keep together your work, family, and health, while trying to stabilize a caregiving crisis. Over time, you try to cobble together some kind of caregiving infrastructure for your family.

Caregiving families like mine were not surprised by the immense challenges of managing care during the pandemic. If anything, we had been trying to sound the alarm for everyone else.

If you’re not already in a caregiving situation, this is how it’s going to happen if our country doesn’t put a care infrastructure into place. You will be left to your own devices and resources to figure things out. Some families will succeed in meeting their loved one’s needs, but without a care infrastructure, many families will fail, and some will crumble.

The pandemic didn’t so much expose the challenges of caregiving, as it blew the lid off of a national secret: Caregiving as an individual is a nearly impossible task and it should be a collective responsibility.

No Caregiving Support Means You Can Do Everything Right and Still Fall Short

Navigating care is tough, especially for immigrant families. Immigrant families just do not know the system and programs well enough to plan for the possibility of caregiving, nor do they understand how to navigate the labyrinth of programs and insurance once the need hits.

My journey to the United States began in 1984 when my father came to this country from Malawi to attend college, thanks to a scholarship. By 1989, he was offered a teaching position and our family, including me, came here to live. Initially, I was dazzled. I had heard all the “streets paved with gold” stories about life in the United States. When I arrived, those stories seemed true. Everyone in the United States seemed to have a car and a television. Everyone seemed to be doing well. I didn’t detect the cracks and disparities until later.

My dad did everything “right,” yet still he was forced to retire in Malawi because it was unaffordable to get care here without the cost falling squarely on my mother’s shoulders. The breadwinners of immigrant families not only face challenges accessing care, but they, like my dad, can work their entire adult life and still find access to a secure retirement out of reach.

As these twin challenges played in the background, my dad retired. His best solution to the challenges following retirement was to spend most of his time in Malawi. Caregiving and housing are more affordable there. Then, he got sick. His health started to decline and he was in and out of the hospital for a few weeks before he passed. I could hear my parents talking by phone, debating about how soon my mother, who was still living in the United States, should come to Malawi.

While they debated, reality sunk in that she didn’t have enough paid leave left at her work as a trainer of certified nursing assistants (CAN) and nurse on a medical hotline, to take any time off. My mom had used some of her paid leave to stay home and care for our dad when he had visited in February 2020, while already sick. As his health further declined, they debated when she should go to Malawi—their final decision based, not on concerns about my dad’s health and comfort, but on how much leave my mother had, and the cost of traveling to Malawi.

This dilemma is a common one for immigrant families, and makes it easy to see how relatively small decisions can backfire and then burn. If our mom went to Malawi, family members would have to cover her travel costs. While my parents debated, my siblings and I wondered, “What if she takes unpaid leave? What happens with her monthly expenses and how do we cover them?”

My sister was unemployed at the time and could be present with our mother. I was working remotely and could make it home quickly. I wondered if I could take leave time from my work to be with my mom while we were trying to figure that out. I discovered one of the privileges of remote work—working from anywhere meant I didn't have to take leave.

My father died in the midst of the pandemic. We were all at my mother’s house, trying to figure out travel, cost of travel, and how many of us could go. We looked for an open travel route to Malawi because the typical route had been cut off due to the pandemic. We vacillated and planned among travel costs, who could go, who could stay, and who had the most flexibility. We had to balance our desire to support our mother and honor our father’s life with wondering who best could weather a financial setback by going.

My sisters went with Mom. Even in that moment of grief, we were focused on how to afford travel costs, and how to pay for funeral arrangements and my father’s remaining healthcare debt. The bills snowballed during his illness and after he died. After we decided on travel plans and funeral arrangements, we had to sort out his medical debt and put together a financial plan for my mom. Where was the time for grief?

When Children Are the Retirement Plan

Financial concerns didn’t end with the funeral and didn’t concern only my father’s medical debt. My mother is 61 and still working her two jobs. In addition to working, my mother has been a caregiver since the 1990s, when my father’s health first began to decline. She spent time trying to figure out how she could retire early and rest. Caregiving is a huge task. Working is a huge task. She wanted to retire, spend time with her husband, and be available for his care. It wasn’t a lot to ask, but it never happened.

My mom had worked in education administration in Malawi, but the United States wouldn’t recognize her education, degrees, or experience. So she had to begin again. In the U.S. system she started work late, and from scratch. First, as a nanny and domestic worker, then in daycare and eventually as a CNA. My father was a professor and sought tenure for years. In the meantime, he had meager benefits and retirement savings. All of this while both were supporting a young family.

Also my mom co-signed on my brother’s student loan. She believed that a good education was required for progress in this country, but it also meant that, as an immigrant, my parents were constantly coming from behind and struggling to keep up. It’s a classic immigrant story: the kids are getting older, your income is stagnant and not keeping up with the cost of living, and you’re on the hook for education costs, multiple cars, wanting to live in a safe neighborhood, and wanting to buy a house.

My dad’s health declined slowly for about 20 years. As the primary breadwinner for an immigrant family in the United States, often, you also are primarily responsible for everyone back home. There was such a pull on finances that my parents couldn’t even think about savings. My parents thought about retiring, but to them, us kids were their retirement plan. They made all these sacrifices in the hopes that we would be minimally financially independent and wouldn’t have to rely upon them. In an ideal world, my siblings and I would support their care in their later years.

This also had been our expectation. My siblings and I have always seen ourselves as our parents’ retirement plan. We knew we would need to provide or supplement their retirement income, for expenses and care and caregiving. We knew they didn’t have any savings and their retirement income would not be enough to cover living expenses, let alone care expenses. At some point, those costs would all be on us.

My father was receiving a small pension when he died, so that pension now supplements my mother’s financial needs. That takes away some of the financial pressure. Things aren’t so urgent. But what does it say for your country’s safety net if your children have to be your retirement plan and your spouse has to die for you to live?

What Dignified Care Looks Like

It was not just our goal as a family to make sure my father’s basic care needs were met. We wanted to make sure his needs were met in a way that allowed him to maintain his dignity. To do this, his care had to be culturally competent. My mother’s cultural competence in my father’s care may seem small, but these small things were of critical importance.

My father loved eating beef stew or curry chicken, but only when made by my mom. She made his favorite dishes for him and adjusted her cooking methods, decreasing salt and using fresh tomatoes instead of canned to avoid the acidity that irritated him. He wasn’t supposed to drink alcohol, but my mother knew that you can’t tell an African man not to drink—that was an unrealistic expectation. Instead she convinced him to try drinks with lower alcohol levels, like lite beer. These important accommodations and adjustments allowed my father to maintain his dignity throughout his care.

Care Is Not Just for Kids, But for the Whole Lifespan and Full Community

A few weeks ago I was on Vox, talking about care and the Biden administration plans to address care. Before the show started, the host complained, “I’m a Black woman. I’m not married and don't have kids. There’s nothing in Biden’s plan that would work for me.”

I was astounded. What the host didn’t understand is that paid leave isn’t just for parents, which is how the national discourse often frames conversations about paid leave. Because of this, there are a bunch of childless women who suddenly feel as if they don’t see themselves in this issue.

I explained to the host that I didn’t have any children, either, but I’m thinking about doing a second round of in-vitro fertilization (IVF). There's so much that goes into it that requires care and caregiving and time off.

I also told her that my mom is getting older and my siblings and I are going to be called on for her care. We need leave for that. I encouraged her to think about the people in her family who are going to need additional support in predictable and unpredictable ways. For instance, when my sister had such a bad anxiety attack that she had to be hospitalized for two days. My sister lives in Illinois and I had to drop everything in Washington, DC, and go to her. I needed leave for that, too.

The way the care conversation is being framed may seem exclusive of Black working women who don’t have children, when actually that same framing puts the expectation on us first. There’s a cultural expectation that I should be the one stepping in for my family’s care needs because I don't have kids. That feels really hard, but I need leave, regardless of whether or not I have children.

Even if we take any and all conversations about having children out of it, several years ago, I had fibroid tumors removed—an increasingly common procedure among Black women. The doctors told me it would take anywhere from two weeks to three months to heal and get off pain medications. It took me two months. Only the flexibility of my work made those two months seem less arduous. I had to tap into disability and paid Family and Medical Leave Act benefits. But at least I had those benefits to tap into. Many other Black women don’t have access to those benefits and are forced to drag themselves back to work before their bodies have a chance to heal. They need access to a care infrastructure.

And so does my mother. She needs access to a strong care infrastructure. My mom, like many in their 60s (Gibson, 2019), doesn’t have savings. That means I have to consider the impact of her caregiving on my income and savings. And I have to consider what happens about 30 years from now when I need care. I think about having kids and not having kids. When I think about not having children, I have to think about who’s going to be around to care for me. It will likely be my siblings, but what will be the impact on them? When I think about starting a family, I think about the costs of IVF that are not covered by healthcare insurance. Most women can’t afford IVF treatments and other family planning interventions out-of-pocket. I can’t afford it because of caregiving for my parents. I need access to a strong care infrastructure.

How could this story be different? What if our infrastructure included the means to allow people to retire and have access to the financial resources and dignified, culturally competent care they need? What if my father didn’t have to leave the country to be able to afford care? What if my mother didn’t have to spend my father’s last days worrying about money and how his needs would be met? What if I didn’t have to balance my desire to have a child with my mother’s financial needs? What if we lived in a country that valued compassion over a pseudo self-sufficiency, which in actuality glorifies wealth and access to wealth?

My mother needs a strong care infrastructure. I need a strong care infrastructure. And you need a strong care infrastructure, too.

Josephine Kalipeni, MA, is Executive Director of Family Values @ Work in Washington, DC.

References

Gibson, W. E. 2019. Older Americans Surveyed Lack Retirement Funds. AARP, March 28. Retrieved September 14, 2021.

Making it Work: Care, Blackness, and Generational Values

By Sadé Dozan

Abstract:

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.

Key Words:

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.

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.

False Narratives

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.

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).

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 sade@caringacross.org.

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