The Crushing Weight of ‘Sandwich Caregiving’

When Sade Dozan discovered she was pregnant, her parents moved closer, with the intention of helping with child care. Dozan says she knew they wouldn’t be able to afford it without a blend of partially paid child care and Dozan’s parents helping for half the week. But in 2018, when Dozan’s daughter was six months old, Dozan’s mother had a heart attack with the baby in her arms. “I went from having someone that was my champion and ready to provide care to me being the sole provider of that care,” says Dozan, now 31. “I went from being a parent to a sandwich-generation caregiver overnight.”

“Sandwich-generation caregivers” refers to adults who are caring for parents or older relatives while also raising kids. A 2019 report from National Alliance for Caregiving and Caring Across Generations estimates that 11 million caregivers—or about 28 percent of all caregivers, in general—provide unpaid care to an adult while caring for children living at home; 61 percent of them are women. While there is variance depending on circumstances and familial construct—some individuals described having a child in their mid-20s and stepping in to care for a parent, sibling, or grandparent—sandwich-generation caregivers are predominantly Generation X, with the typical profile of a sandwich caregiver, according to Caring Across Generations, being 41 years old on average and born between 1965 and 1980. This group was sitting at the intersection of multiple crises before the coronavirus pandemic, and now, lack of institutional support for child care, workplace flexibility, and health insurance have exacerbated profound needs and deficits in how familial structures are supported. And at the center, there’s a larger question about who is tending to the emotional and economic support of sandwich caregivers themselves.

Many caregivers are employed outside the home, juggling child care and school, care for an aging individual, and work. According to a 2020 report from the AARP, 61 percent of caregivers were employed at some point in the past year while also caregiving, and data from National Alliance for Caregiving and Caregiving Across Generations shows that sandwich caregivers often lack workplace benefits, including paid leave, resulting in additional financial strain. Dozan’s former workplace, for instance, didn’t think there was anything they could do because she’d already used her leave when she had her child. “ It’s not as though care happens in a vacuum,” Dozan says. “It’s not as though you’re allowed one incident per year. That’s not real.”

Care can’t be separated from the economics—the capitalist society that devalues care work—in which it is occurring. According to some estimates, 78 percent of family caregivers take on out-of-pocket costs as a result of caregiving and are spending, on average, almost 20 percent of their income on caregiving-related activities and tasks. Dozan reduced her hours, and at one point, was attempting to do 50 to 60 ad hoc hours of work in the mornings and evenings while caring for her mother and her child and handling logistics like grocery runs and medication pick-ups. A nanny or any sort of child care was prohibitively expensive. Now, she works for Caring Across Generations, and estimates that, pre-pandemic, she spent about 30 percent of her income on care, with that number now closer to 50 percent. It’s medical bills and paying for a worker and physical therapist not always covered by Medicare; it’s time spent on the phone to show “proof of need”; it’s insurances arguing back and forth over who should cover the wheelchair; it’s getting a bill and then having to fight it. “For caregivers who operated in this role prior to the pandemic, we’ve all known that care is a full-time job,” says Dozan.

Despite caregiving being critical work, its devaluation has left many caregivers with little support at work in terms of flexible policies. It’s even difficult to talk about caregiving needs at work. C. Grace Whiting, J.D., president and CEO of National Alliance for Caregiving, says NAC commissioned someone to write a paper on the topic and found that many people don’t feel like they can speak about caregiving at work and that a lot of employers still consider caregiving a negotiation. “To me, this comes back to women’s roles, because during COVID, you’re seeing women are typically the ones that are having to quit a job to take on these extra care responsibilities,” explains Whiting. “That is a huge downstream effect on their future retirement, your ability to reenter the workforce. And part of it is because we feel like people are making a choice to care for someone in their life.” In other words, caregiving is spun as a luxury rather than a necessity. “We’re not recognizing that families come in different shapes and sizes,” continues Whiting. “And in a perfect world, the people that are in our community, we want them to take care of their family.”

Mindy Rimbey, who is raising a 13-year-old and a 16-year-old, had her parents move in with her during the pandemic, which involved them all moving into a larger home after there were multiple COVID outbreaks in the independent living facility in which her parents lived. Rimbey’s mother has dementia, and her father struggled to navigate the independence of the facility. Rimbey was working full-time in career-technical education, teaching child development and running a child development center. She had to reconfigure her course, which relied heavily on in-person lab experience students couldn’t have during the pandemic, and at the same time, was navigating the needs of her parents who had recently moved in. “So between it all, I just kind of lost it,” Rimbey says. At first, she went part-time at work, but just recently submitted paperwork for a full-time leave because it’s too much to manage.

“I just felt like I was a bad teacher, a bad mom, bad daughter, a bad wife … I was just doing it all wrong because there was too much,” Rimbey says. She started talking to a counselor about anxiety and adjustment disorder. Every time she’d walk in a room, someone needed her for something. She couldn’t even let the cat sit on her lap for a time because she needed space to not feel needed.

The impact of care—or lack thereof—is personal. Research conducted long before the COVID-19 pandemic by the American Journal of Nursing found that caregiving results in chronic stress, while other research points out that the rate of depression for caregivers is two times higher than the national rate, with 51 percent reporting they don’t have time to take care of themselves or are too exhausted to do so. The compounding effects of the pandemic, including the fact that some caregivers are also frontline workers, primary caregivers for children, and the only caregivers for older relatives or family members with health needs, have created a cascade effect on mental health. According to the Centers for Disease Control and Prevention (CDC), women who are caregivers have a greater risk for poor physical and mental health. The pandemic added more stressors onto that, and sometimes, caregivers might have health issues or needs themselves.

“Logistical and emotional caregiving responsibilities take up a huge percentage of my mental real estate, and I often feel stretched too thin,” says Lara Durgavich, 40. She explains that she feels guilty because her attention, compassion, and patience are being dispensed into different buckets, and none of those buckets is getting adequately refilled. Durgavich has two children, ages nine and five. She’s been heavily involved in the caretaking for both her parents; before her father passed away in 2019 of a rare lung condition, she was responsible for coordinating care and treatment with her siblings, who live in different states. Durgavich’s mother, who has Alzheimer’s, lives in a memory-care facility near her home.

“Being in a sandwich-caregiver role, day after day, for years can start to make it feel like you as a person have lost your identity [and] function outside of that role,” Durgavich shared via email, explaining she tries to find time to focus on some of her own interests or goals in order to maintain some sense of self.

Durgavich says her husband is incredibly supportive, and she and her brothers have been able to work together in contributing to her parents’ care. Even with a best friend who Durgavich says she can talk to about anything, it can be lonely sometimes. “I’m often exhausted by my kids or find myself dwelling on the grief of losing one parent and the despair of knowing the other is disappearing in a different way, she says.” There are days she gets overwhelmed and doesn’t want to get out of bed. “But I try to remember that I still have lots of reasons to keep a glass-half-full perspective,” Durgavich adds.

The lack of social safety net in this area persists, at least in part, because the way we think about care work is highly gendered and highly racialized, explains Jhumpa Bhattacharya, vice-president of programs and strategy at the Insight Center for Community Economic Development. Because of who is sitting at the policy table—primarily white men—care work has been devalued. Ignoring the emotional and economic toll it takes to care for people who need it has everything to do with care being seen as women’s work, says Bhattacharya. “It’s been seen as Black women’s work, and now immigrant women’s work and Latinx women’s work,” she continues.

As a study from the Family Caregiver Alliance reports, Hispanic and African American caregivers spend more time caregiving on average than their white or Asian American peers. In regards to child care specifically, information from the Center for Law and Economic Policy notes that inequities in America’s child care system are rooted in historical discriminatory policies and practices rooted in racism and sexism. The lack of value placed on caregiving work, whether it’s low-wage employment centered on caregiving or unpaid, familial caregiving, is historically racist. As the Center for American Progress reports, “Black women’s labor was exploited to serve and care for white slaveholders while different waves of immigration saw Hispanic and Asian women confined to jobs as laborers, domestic workers, and farm workers, as well as service occupations. And over the course of America’s westward expansion, Native American women faced mistreatment and a lack of economic opportunities as their communities were invaded and sapped of resources.” These inequities haven’t disappeared—they’ve been exacerbated.

“Black and brown folks, I feel like we really do hold it all,” Dozan adds. “We’ve got a scaffolding of barriers already.” But even for people of color who are healthy themselves, an inability to build and sustain wealth can be impossible when caregiving enters the equation. Bhattacharya notes that, pre-pandemic, what was happening to a lot of women—Black women, in particular—was having to provide financial support on both ends: They were helping to support millennial children, and at the same time, caring for aging parents. So, if they did have retirement savings, women were drawing out of their own retirement accounts to pay for living expenses and care in the present. “How does that position them for the future when they’re supposed to retire and enjoy their lives after working so hard?” she says.

While providing care can keep marginalized groups trapped in this unforgiving cycle, there’s also the issue of who receives care at all. Research by SAGE points out that older LGBTQ+ individuals often rely on “families of choice,” leading to more LGBTQ+ people assuming caregiving roles at higher rates. Other aging individuals are without familial networks entirely, bringing up questions of what support will be available to them when they need it. Meanwhile, access to affordable child care has been a significant barrier to work, putting families, especially single-parent families, in economically precarious situations.

Center to all of this, Bhattacharya explains, is deservedness. And right now, the kind of care you or your family deserves is dictated by what you can afford. “Are we saying that those who have money are the only ones deserving of a dignified life?” she says.

Dozan believes comprehensive policies are the key to actually helping caregivers, individuals who need care, and families: That includes robust policies around long-term services and support, early childhood care and education, support for people with disabilities, elder care, and paid family leave and universal family care. “We’ve been living in this piecemeal system, but we don’t actually care in silos,” Dozan says. It is all interconnected—which means policy solutions have to be, too. And it’s urgent because the cycle won’t vanish on its own: As one generation struggles with being squished, strained, and stressed by caring for two other generations of people, without substantive policy change, the next is destined to do the same. “If we don’t get this right now,” Dozan worries, “what does that mean for my daughter?”