Advocates spotlight hidden struggles of young caregivers

PHOENIX — Brenda Donovan was just 12 when her mother, Kathy, was diagnosed with Lou Gehrig’s disease.

Over the next six years, as the neurodegenerative disease took its course, her mom went from using a walker to a wheelchair, and by her senior year in high school, Brenda was her mother’s primary caregiver.

As teammates headed to the basketball court or to the track for practice, Brenda cut back on sports and used a study hall period to lift her mother in and out of the car and drive her to medical appointments while her father was at work.

“That role just kind of started to morph into: Now I’m the parent and she’s the child,” said Donovan, who’s now 49 and living in Mesa.

“For me, looking back, I just thought this is something I’m supposed to do. … It was kind of like a badge of honor. You don’t really realize the effects of it until it’s too late.”

Donovan, today a nurse practitioner, suspects the burden of caregiving contributed to the depression she battled for years.

“I lost my childhood,” she said.

As America grows older, more people are becoming caregivers to a loved one in need – including young people thrust into a role for which they have little training or support.

There are few firm statistics on the number of caregivers 18 or younger, but the AARP and National Alliance for Caregiving estimate that 3.4 million children are in caregiving roles across the country. That’s in addition to the nation’s estimated 53 million adult caregivers. Hispanic, Black and Asian children are more likely to fall into caregiving roles, the groups found.

The cost of home care, as well as the number of multigenerational and single-parent households in the U.S., mean youth often are the only answer when someone at home needs to be looked after. And the long-term health ramifications of COVID-19 on some adults could worsen the problem, experts say.

“The way our health care is structured here in the United States, it’s very difficult to get in-home care,” said Melinda Kavanaugh, an associate professor in social work at the University of Wisconsin-Milwaukee whose research focuses on young caregivers.

“You have costs that are exorbitant for many, many families. So often the reliance on a child or youth or young adult for care is simply down to, ‘What can we afford?’”

Understudied, overlooked

Young caregiving is “wildly understudied” in the U.S., Kavanaugh said, and public policy typically focuses on adults in a caregiving role and not kids.

To help, she works with an organization called YCare to provide skills training and support programs for young people caring for a relative.

Her group estimates that more than 6 million children and teens in the U.S. may serve as caregivers. Kavanaugh suspects many families keep quiet about the role children play because they’re worried about ramifications.

“We make the assumption that if a youth is doing some sort of work in the home, some sort of care, that it might be associated with abuse and neglect,” she said. “So there’s a lot of social isolation, and there’s a huge need to bring these kids out of the dark.”

Her organization provides peer support but also brings in physical therapists, speech pathologists, social workers, assistive device specialists and other experts to help youth learn how to properly care for their loved ones.

“What they learn is confidence in the skills that they were kind of doing already,” Kavanaugh said, noting there’s an added benefit. “Now they’ve met other kids their own age who are also providing care to a parent or a family member. They can go to a session like this with other peers and say, ‘Oh, wait. Your mom has this, too? Let’s learn how to do this all together.’”

Sixteen-year-old Kaylin Jean-Louis of ​​Tallahassee, Florida, had a similar goal when she started an effort to help young caregivers after providing secondary care to her grandmother and great-grandmother starting at age 10.

When her mother contracted COVID-19 in January 2021, Kaylin found herself the primary caregiver to all three women. The next month, she coordinated a Youth Caregiver Awareness Drive and helped raise $750 in award money to recognize four young caregivers.

This year, she held her second Youth Care Too! awareness drive, raising $500 to recognize a deserving youth caregiver.

“I was able to find ways to recognize the unselfish and outstanding loving care that youth caregivers give to their sick or disabled loved ones, whether they are family members or siblings,” she said. “I just simply wanted to find a way.”

In partnership with other organizations, Kaylin said she plans to eventually create care packages, volunteer opportunities, events and a support group for young caregivers to help connect them with others and share their experiences.

“I’m lucky because I’m a secondary youth caregiver, but there are those who are the primary, especially because of COVID,” she said. By bringing young caregivers together, she said, they’re able to “get these different resources and … help other people do the same thing.”

“I hope they pay it forward.”

Offering help and support

From age 11 to 13, Connie Siskowski was a caregiver for her grandfather, who had congestive heart failure and functional decline. After realizing how little support young caregivers have, she started what’s now known as the American Association of Caregiving Youth, based in Boca Raton, Florida.

“It was my honor to care for him, and the work that I do today is dedicated to him,” Siskowski said.

Siskowski authored a 2006 study examining the effects of caregiving on youth. She found that the physical, psychological and financial ramifications that adult caregivers struggle with also affect young caregivers.

“Furthermore,” the study found, “a child’s growth and development may be affected by the assumption of physical responsibilities beyond physical readiness, as well as by social and emotional burdens for which he or she is ill-prepared.”

Siskowski’s organization works with young caregivers in the School District of Palm Beach County, from the start of middle school to the end of high school, to support them while working to keep them in class.

Children in the program are referred by school staff. The American Association of Caregiving Youth then arranges home visits by family specialists and social workers to assess the needs of the family and see how they can best help and prevent kids from dropping out.

“We’re not going in there to judge,” Siskowski said. “We’re going in there to help and support.”

She said her organization has worked with more than 2,000 families, and their numbers are rising as the population of young caregivers grows.

The 2005 Young Caregivers in the U.S. study – a survey by the National Alliance for Caregiving and the United Hospital Fund that still is considered a seminal report on youth caregiving – revealed that child caregivers tend to have more anxiety and depression than their peers and often miss school or school activities because of their duties.

The study also concluded that young caregivers are more likely to have trouble getting along with teachers, to bully or act mean toward others and to associate with kids who get into trouble.

Donovan said she struggled with depression through high school and into her 30s and believes it was related to becoming a caregiver at a young age.

“I think the biggest thing … that I missed out on was being a daughter and having my mom show me how to cook, show me how to sew,” she said.

“At that time when I needed my mom the most, she needed me the most.”

While pursuing a nursing degree at the University of Arizona, Donovan focused her thesis on the long-term psychological effects of caregiving as a child. Her takeaway was that caregiving is difficult, but it can also be a positive experience.

It’s about perspective, she said.

“I don’t think any of us that have been young caregivers actually felt like we were forced to do it,” Donovan said. “It was always something that you almost felt like you were chosen to do.”

The physical therapists and other health workers who assisted her family in caring for her mother inspired Donovan to pursue nursing. Today, she’s a nurse practitioner for Arizona Kidney Disease and Hypertension Centers in Mesa.

“Wounded healers” is how she describes herself and others who pursue a career in medicine for reasons similar to hers.

“It was really just interesting to see how someone who wasn’t related could truly make a difference in somebody else’s life,” she said. “If I can do something positive for someone that makes their life easier, then I will.”

Donovan’s mother was just 53 when she died in 2002. And while Donovan’s memories of her mom are clouded by the disease that ravaged her, she takes solace in the memories of others – from happier, healthier times.

“Every year, I’ll post on Facebook, ‘I can’t believe it’s been 15 years,’ and just all the love that comes out of the woodwork from her friends … the memories that they share – that’s the good part,” said Donovan, who dedicated her college thesis to her mother, calling her “the strongest woman I have ever known.”

“She’s my hero,” she said, tears filling her eyes. “She’s my hero.”