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‘Wounded healers’: Advocates spotlight hidden struggles of young caregivers – Cronkite News

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.

Elisabeth Dolloff, a speech pathologist who works with YCare in Wisconsin, shows children how to use technology to better communicate with parents whose conditions have affected their speech. (Photo courtesy of YCare)

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.”

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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.”

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