'I don't know where to start.' Parents and caregivers are burned out. Who's most at risk?

In March 2023, not long after her twin daughters were diagnosed with speech and language disorders, Veronica Diamond said her partner got into a car accident at work, injuring his back, neck and shoulders.

That same week, Diamond said, her grandmother, who was diagnosed with Parkinson's disease, was placed in a nursing home.

Diamond, who lives in Freeport on Long Island, New York, found herself splitting her time among tending to her partner, visiting her grandmother, chauffeuring her daughters to various therapy appointments, working and getting dinner on the table. In the midst of that chaos, her mother was diagnosed with multiple sclerosis and her great-aunt died unexpectedly.

“It is a lot on top of working full time,” Diamond said. “You just get up every day and you do it because you have to.”

Things like cleaning the house and her own self-care went to the wayside, she said. That's common for today's caregivers, especially those in the sandwich generation who care for both their aging parents and their children. According to a 2021 survey conducted by the Pew Research Center, nearly 1 in 4 U.S. adults are part of the sandwich generation.

Several studies published during and since the COVID-19 pandemic have pointed to mass burnout among the nation's family caregivers. Burnout is a state of physical, emotional and mental exhaustion that leads people to be less productive at work and negatively impacts their ability to care for themselves and others. Burnout among caregivers is often the result of excessive stress and a lack of self-care. And while help is out there, caregivers experiencing burnout aren't always likely to seek support.

A survey conducted by the Centers for Disease Control and Prevention found that 70% of parents and caregivers reported adverse mental health symptoms during the COVID-19 pandemic, and more than half reported symptoms of anxiety or depression. The American Psychological Association released a report in 2023 that showed parents were significantly more likely than other adults to say that stress makes it hard for them to focus, that most days their stress is "completely overwhelming" and that when they're stressed, they can't bring themselves to do anything. Another 2023 survey, conducted by the AARP, found 4 in 10 caregivers rarely or never feel relaxed. Rates of anxiety and stress were higher among women caregivers and those ages 18-34, the survey found.

In 2024, former U.S. Surgeon General Dr. Vivek Murthy pointed to several of these studies in an advisory titled "Parents Under Pressure," highlighting the mental and emotional tolls of parenting and caregiving.

"Something has to change," Murthy wrote. "Supporting parents and caregivers will require a series of thoughtful policy changes and expanded community programs that will help ensure parents and caregivers can get time off to be with a sick child, secure affordable child care, access reliable mental health care, and benefit from places and initiatives that support social connection and community."

Those programs and initiatives do exist, said Dr. Madhavi Vemireddy, CEO of Cleo, a global family care platform.

"The problem is, you need to have a master-level social working degree to, kind of, figure that out, and know which county databases to go to, what’s available where," Vemireddy said. "And, like, I wouldn’t know how to figure that out myself.”

Who is most at risk for burnout?

The American health care system tends to ignore family caregivers, Vemireddy said. A recent report from Cleo found family caregivers are in crisis. The company launched a survey in February 2023 to assess their members' burnout risk, measuring things like stress, hypertension, social isolation, self-care, work-life balance and productivity.

After compiling more than 12,000 assessments, Cleo found 60% of parents and caregivers surveyed were at higher risk for depression and anxiety. Plus, more than half of adult caregivers and those in the sandwich generation were at risk of burnout. Those rates increased among caregivers supporting a loved one with a chronic condition, a cancer diagnosis and those navigating an end-of-life journey.

The report suggests members at a higher risk of burnout were more likely to report feelings of loneliness or isolation, struggle with sleep, not get enough exercise and not eat a healthy diet. Cleo members at higher risk for burnout also reported, on average, more than 450 hours of lost work productivity due to their caregiving responsibilities.

Most families come to Cleo initially to find support for their kids or aging parents, Vemireddy said. But Cleo uses the survey "almost as a wakeup call" to show caregivers that they, too, need to prioritize their care and wellbeing.

“Because we know that most family caregivers don’t ask for help until they’re at that stage of burnout or beyond," Vemireddy said.

'Thirty-second acts.' Self-care for caregivers and finding resources

Christina Keys, who lives in Washington state, was beyond burnout after she started caring for her mother, who had a stroke in 2013.

Suddenly, Keys found herself acting as a case manager, a physical therapist, an occupational therapist and managing her mother's medicine. Her finances were in a good place before her mother's stroke, but even with her mother's pension and Keys contributing sometimes up to $3,000 per month for her mother's care, Keys said they went through both of their pensions − more than $300,000 − in less than two years.

Keys left her corporate job and started selling her possessions to keep up with the cost of caregiving. Her breaking point came when she went to her own doctor and was told she had six months to live. The stress of caregiving had made her diabetic, given her high blood pressure and she'd gained about 100 pounds. Keys said she wasn't eating well and was only sleeping 5-10 hours per week.

Something had to change. Self-care before her mother's stroke meant vacationing, paying for a massage or getting a manicure. After her mother's stroke, Keys said self-care meant taking her blood pressure medication, drinking water and lingering for a moment at the mailbox to take in the sunshine and feel the wind on her face.

"They became 30-second acts, 5-minute acts, and trying to piece those together," Keys said.

Keys said she often asked the doctors and nurses at her mother's hospital about local resources to help family caregivers.

“But medical professionals are there to do a specific job," Keys said. "They are not community resource experts.”

Now, Keys has made a career in advocacy around caregiver resources and training. She founded a local nonprofit, Loving Them Forward, that helped connect family caregivers to resources in their own backyard, and has since scaled that model up to a national level through her company Keys for Caregiving.

Cleo helps connect caregivers with resources, too. Megha Pathak is a social worker and caregiving specialist at Cleo, connecting members to local government waivers that help with child and adult day care, support groups for caregivers and other financial and emotional resources to lessen the load of daily caregiving duties.

She's constantly talking through the impacts of burnout with her clients.

“I can’t tell you how many times I’ve gotten on a call, and I’ve heard, ‘I don’t know where to start,'" Pathak said.

Just talking through the difficulties of caregiving can help, though. The 2023 AARP survey found the most popular coping mechanisms among caregivers dealing with stress were listening to music, talking to friends or family and exercising. Cleo's report found that about 70% of the parents and caregivers they serve saw some degree of improvement within six months of talking through their stress or seeking other support from a caregiving specialist.

Diamond said she's been able to use some resources available for her girls through her local government. And she's learned to carve out time for herself each day so she can work through the harder emotions that come with taking care of her family.

That alone time is often in the mornings, after the bus comes by to pick up her daughters.

“I play my little New York Times games," she said. "I have my breakfast. I take my time to do the things that, you know, keep my brain sharp and get me ready for the day and that comfort me.”

Tips for dealing with burnout

Many people are caregivers and don't even know it. If you provide emotional, physical or financial support to a loved one, you're a caregiver − and according to Cleo's most recent survey, you're at risk for burnout. Here are five tips from Cleo experts on how to deal with the stress of caregiving:

1. Ask for help when you need support, and then accept the help. Be comfortable delegating to friends, family and colleagues. And be specific with your requests.
2. Make it a top priority to “fill your cup” first. Whether it’s listening to a song that you love, making your favorite foods for breakfast, going for a walk or doing something else that brings you joy, learn to prioritize your own wellbeing.
3. Share openly about the stress. If you're employed, talk to your boss or HR team to see what benefits and resources are available for you and your family. Don't shy away from hard conversations.
4. Set boundaries at home and work. Setting boundaries and learning to say "no" can help protect your time and energy.
5. Find professional support. If you need more support than your friends and family can provide, consider a professional therapist or support group.

Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is funded by a grant from Pivotal Ventures. Pivotal Ventures does not provide editorial input. Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.