Amanda Singleton had just gotten married and bought her first home when her mom was diagnosed with brain cancer. Essentially overnight, she went from being a 30-year-old just starting a new phase of her life to being a 24-hour caregiver. “My mom couldn’t walk, she couldn’t talk, she couldn’t eat,” Singleton said.
Singleton spent her days driving hours between her home in St. Petersburg, Florida, clinics for her mom’s chemo and radiation treatments, and her job as an attorney. The stress was constant. “As soon as you think you have a handle on what’s happening, things can change,” she said. “Medications can change, symptoms can pop up, there’s another specialist to see, there’s another thing to do. I felt like this conductor of a runaway train.”
The experience of taking care of a parent while still in her 30s “was very isolating,” she said. Her new husband was supportive, but his main role was “to really try to keep his job” because her caregiving responsibilities put hers in jeopardy. Most of her peers didn’t yet understand what she was going through, and she had no script for handling the logistical obstacles she would face. “I felt so very unprepared for it.”
As the baby boomer generation, born between 1946 and 1964, enters the period of life when, statistically, most people need some form of care, experts say that more millennials — as well as Gen X and Gen Z Americans — will find themselves in a position similar to Singleton’s, supporting an older relative with everything from specialized medical care to handling paperwork to daily tasks such as bathing and eating.
For many, taking on the affairs of a parent or senior relative will add pressure on top of pressure. Americans are having kids later in life, meaning they’re more likely to find themselves in a “sandwich generation,” caring for elderly parents and young kids at the same time. Nearly 25 percent of American adults and more than half of people in their 40s are “sandwiched,” with at least one child to support and at least one parent over 65.
Tomorrow’s caregivers will also face unprecedented career and financial challenges. Women, who have historically done the bulk of both elder and child care, are more likely than ever to have careers and be breadwinners. Many won’t be able to get time off work to provide the complex, ongoing assistance that many boomers will require. And they can’t afford to quit — faced with the Great Recession followed by the pandemic, younger workers, especially Black and non-college-educated millennials, don’t have the accumulated wealth necessary to cushion any prolonged period of unemployment or to shoulder a relative’s expenses.
“We are in a crisis of care,” said Carlene Davis, co-founder of the nonprofit Sistahs Aging With Grace & Elegance (SAGE). It’s a crisis that American society, with no paid leave, a fragmented care system, and minimal public discussion around aging and disability, is woefully ill-equipped to handle.
It’s a crisis that many people are finding themselves facing alone, with little support from policymakers, and little public conversation to tell them what to expect.
As Singleton put it: “I felt like I was on my own.”
The baby boomers are a huge generation. By 2030, the US will for the first time have more residents over 65 than children. Someone turning 65 today has a 70 percent chance of needing long-term care at some point, and 20 percent will need it for more than five years. Boomers are also living longer — life expectancy increased from 68 years in 1950 to about 76 years in 2021 — but are still vulnerable to conditions like Alzheimer’s disease, meaning they will need care for more years than previous generations.
Elder care in America is a patchwork. Medicare doesn’t cover most long-term care, and seniors only become eligible for care through Medicaid when they have almost no assets left. Paying for professional care out of pocket can be ruinously expensive — the median annual cost of a full-time home health aide was nearly $60,000 in 2021, while a semi-private room in a nursing home ran $94,000 per year or more. Those costs are out of reach for most boomers, more than 40 percent of whom have no retirement savings.
That leaves family members to provide care themselves, reckon with mounting bills, or both. “Family caregivers are the backbone of the long-term care system,” says Amy Goyer, the national family and caregiving expert at AARP.
Boomers themselves have driven tectonic shifts in American cultural norms and family structures — a revolution in divorce, along with a trend toward smaller families and away from multigenerational living — that could make that backbone weaker. Compared to their elders, boomers will have fewer people in their lives able to step in and care for them as they age, says Rachel Margolis, a demographer and sociologist at the University of Western Ontario. In 2010, there were more than seven potential family caregivers for every person over 80; by 2030, that ratio is expected to fall to 4:1, and by 2050, it will be less than 3:1, according to AARP. More care responsibilities will fall on fewer family members, most of them adult children, who may find themselves caring for loved ones alone or with little help, sometimes across two different households.
Michelle, 35, who asked that her last name not be used to protect her family’s privacy, cared for both her mother and father, who are separated and in their mid-70s, at the height of the pandemic, while also working full-time. “It was really, really hard to juggle everything,” she said. “I literally felt like I was lighting myself on fire to keep other people warm.”
For Michelle, mornings might start with helping her dad out of bed, then helping him shower and eat breakfast. “You can’t take your eye off them,” she said. “You’re constantly having to be there.”
There was nonstop laundry, meal-planning, and grocery shopping for two additional households. Michelle says that she spent a lot of mental energy “thinking of ways to help them adapt to this new way of life. If they’re struggling with taking their pills, or they’re struggling with eating, what kind of adaptive devices can I get for them?”
Beyond the physical care, the difficulty of handling mountains of medical bills and logistics can be a shock to younger people who aren’t used to dealing with complex health situations, said Andrea Catlett, 45, who cares for and lives with her mother, who is legally blind, in Colorado. “It’s not just the actual care,” she said. “It’s the paperwork. It’s the calling. It’s the driving.”
Michelle has struggled with “jealousy for my other friends that could lead a normal life, or they could pick up and move where they wanted.” She’s put her career aspirations on hold because of her caregiving responsibilities, and at this point, she can’t imagine having children. “I put that part of my life off because I was so burnt out with already being a caregiver for them that I could not fathom taking on anything else,” she said. (Her family ultimately got full-time care for her father.)
Other adults are taking on elder care responsibilities while raising their own kids, and managing the overlapping needs is a unique challenge. John Adeniran, 26, and his wife take care of his mom, who has Alzheimer’s disease, alongside their 5-month-old daughter, and John works full time remotely as a data analyst. “The most difficult part right now is that my mom and my baby both need continuous care, and really at the same points in time,” he said.
Sometimes, he says, the most he can do is “making sure that everybody’s well-fed, everybody’s clean, everybody’s taken care of, and everybody gets a walk in.” Often what suffers is his sleep. “My uninterrupted time is really the dead of night,” he says. “There are a lot of days where I’m pulling all-nighters.”
During the day, he and his wife switch off with tasks like bathing his mom and helping her eat. He helps her up the stairs at night; his wife braids her hair. They’ve been taking care of his mom together since they got married last year so they “never really had that honeymoon phase,” Adeniran said. Despite the hardship, he said, it has given them perspective. “It has made us less critical of things that are very minute and really insignificant.”
Taking care of his family is a labor of love for Adeniran. “Looking at my mom’s condition and how she carries herself with such dignity brings me a lot of joy,” he says. At the same time, “there can be deep moments of sorrow.”
That emotional strain of caring can add up, with caregivers facing elevated risks of depression and anxiety, alongside physical ailments like heart disease. “I was willing to neglect myself,” Singleton said. “I knew that my stress level was absolutely beyond, but I was just going to press on.” Then, one day, she had a panic attack while she was driving. “I said, nothing’s gonna get done if this is happening,” she remembers. “That was the point for me that I recognized that I needed more help.”
Singleton found a therapist who had experience as a hospice nurse. “She got it. She knew what it was like to be a cancer caregiver,” Singleton said.
Her mother had been working three jobs when she got sick and received disability payments, so they were able to afford caregiving assistance, Singleton says. “But that’s not available to everyone.”
There’s no magic bullet to fix the multifaceted problem of a society that doesn’t care for its elders or those who care for them, experts say. A solution, however, starts with recognizing that increasing numbers of young and middle-aged people will be caring for their elders in the years to come, a reality that still receives little acknowledgment or discussion.
“We didn’t know we’re gonna be caring for everybody in our 30s and 40s,” Catlett said. “You think that this is going to be the time where I can start doing stuff, but you are not going to be doing stuff. You’re going to be caregiving, and it can be isolating and lonely and a lot of work.”
Current caregivers Vox spoke with say they believe the first step is combating the silence around the topic and having conversations with your elders about aging and care before a crisis hits. “They are not fun conversations,” Singleton said. “But if you have someone in your life you love, this is going to be part of the deal.”
Caregivers and experts also call for policy reforms, from paid leave to changes in Medicaid eligibility and reimbursements, that would help elders and their families.
Most caregivers don’t stop working completely, said Gal Wettstein, a senior research economist at the Center for Retirement Research at Boston College. Instead, they often have to reduce their hours or take a different, more flexible job, and their earnings typically take a hit. It’s a “similar set of issues that arises with child care, and we know people pay a penalty for that,” Wettstein said. Additionally, family caregivers spend an average of $7,242 out of pocket every year on expenses from home modifications to medical equipment for their loved ones, according to AARP.
To remedy the financial, mental, and physical health crisis facing boomers and their children, experts say improved paid leave is crucial. Caregivers can take unpaid time off under the Family Medical Leave Act, but without a salary, many can’t afford to. “We need extensive and broad paid family leave,” Davis, the SAGE co-founder, said. “There’s no other way around it.”
Expanding Medicaid eligibility to allow people to get coverage before they’ve exhausted all their assets would help the many middle- and lower-middle-income families who currently don’t qualify but can’t afford to pay out of pocket for care.
Changing what Medicaid pays for could help, too. Some states are already experimenting with programs that allow Medicaid to cover more care at home and in the community rather than in nursing homes. A few, like New York, even allow family caregivers to be paid through Medicaid, “but it’s not the norm,” Wettstein said — and payments are often far too low to cover the cost of living.
Washington state, meanwhile, is experimenting with a new long-term care insurance program, funded by a payroll tax and designed to cover about a year of care at home. “It’s not a lot,” Davis said, “but every bit helps.”
In the absence of large-scale policy reforms, individual communities are looking for ways to care for one another as they age. “Folks’ real lives are at stake,” Davis said. “We can’t wait for policy to do everything.”
Davis was inspired to start Sistahs Aging With Grace & Elegance after caring for both of her parents as an only child, unmarried and without children of her own. “If something happened, there’s not a mini-me,” she said. “What that meant is that it would be important to build a more intentional community of support.” Today, the organization does outreach, education, policy, and advocacy work on behalf of Black women in their 40s and beyond. She and her co-founder, Kiara Harris, “wanted to create these safe, culturally specific, and culturally affirming spaces for Black women to come together to think about and plan for their aging journeys,” Davis said.
Singleton, for her part, found a new career after caring for her mom. After she lost her job as a litigator when her medical leave ran out, “I was like, I don’t want to go back to that,” she said. “I want to be the kind of lawyer that I need right now.” Today, she works as a caregiver advocate, as well as writing and speaking about caregiving for AARP.
When her mother was alive, Singleton didn’t yet have children. Now she’s a mom and has a new perspective on her time with her mother, who died in 2011. “The way that I’ve cared for and loved my daughter, it is really reminiscent of the way I cared for and loved my mom,” she said. Taking care of her mom was “almost a return of maternal energy back to her.”
Indeed, “It’s difficult, but it’s also good,” said Adeniran. Despite the sleepless nights, “there’s so much beauty that still comes from this experience.”