Growing Up as a Rare Caregiver

An estimated 1.3 million kids are youth caregivers in the U.S. Drew Fish-Mehaffey was one of them.

Melissa Mehaffey and Drew Fish-Mehaffey
Melissa Mehaffey (left) and her daughter, Drew, spend time together at Melissa's central Pennsylvania home.

If you didn’t know Melissa Mehaffey and her 19-year-old daughter, Drew, were related, you might think they were simply best friends.

During a recent visit to Melissa’s picturesque Pennsylvania mountain home on 30 snow-covered acres an easy hike away from the Appalachian Trail, Drew swapped inside jokes and laughs with her mom. They treat each other with the mutual respect of peers.

The unique mother-daughter bond stems from Drew’s atypical childhood in which Melissa depended on her almost as much as Drew depended on Melissa.

“This little girl took care of me through my HAE,” Melissa said while hugging her daughter. “Every day, every week.”

Melissa suffers from HAE, or hereditary angioedema, a rare disease that causes painful, debilitating swelling attacks in different parts of the body.

As a single-parent, Melissa relied on Drew’s help to get her through frequent attacks. Instead of going to the park with her friends, Drew stayed home to comfort her mother with cold compresses, warm soup and a watchful eye in case she needed medical attention.

“She just got it. She did everything,” Melissa said.

“I’d practice taking care of her on my baby dolls,” Drew added. “I used to pretend my Barbies were sick because that’s what I was used to.”

That’s a common refrain from youth caregivers like Drew, says Connie Sikowski, president and founder of the American Association for Caregiving Youth.

“They do their work behind closed doors,” Siskowski told Vita. “So you may see a child at Disney World pushing mom in a wheelchair, but you don’t think about what happens when they get home.”

Youth caregivers face challenges that other children don’t, says Siskowski.  She speaks from experience. As a teen she was the primary caregiver for her grandfather while he was suffering from congestive heart failure.

The only major study on youth caregiving in the U.S. found in 2005 that 1.3 million children are caregivers. In the rare disease community, a study released in February by the National Alliance on Caregiving found that one in four caregivers said there was a child in their home who served as an additional caregiver.

Youth caregivers are underserved in society, Siskowski says. Her Florida-based organization provides support programs for youth caregivers in 25 schools in that state. She’s currently making a push for a voice for youth caregivers to be represented on a U.S. advisory board on family caregiving created by the RAISE Family Caregivers Act, which was signed into law in January. The board will make recommendations on how to better support family caregivers in the U.S.

Though there are downsides of growing up as a caregiver, the experience can make a child mature beyond their years, says Dr. Barry Jacobs, a clinical psychologist who has specialized in the topic of family caregiving for nearly 30 years.

Jacobs points to himself as an example, he cared for his father while he was suffering from brain cancer. That experience set him on his life’s path.

“It gave me a sense of purpose and mission,” Jacobs said. “To this day, when I work with family caregivers, particularly caregivers of patients with neurological problems, it has a very strong resonance for me.”

It may not be a coincidence then that Drew is showing a strong interest in science as she continues her academic career. She based a high school project around her family’s history of HAE and has taken science courses in college.

She also supports herself by working nights to pay the bills at her own home, a 45 minute drive away from Melissa’s. Drew makes the trek on weekends to spend time with her mom, whose condition has improved in recent years with the help of newly-developed therapies.

Melissa is taking advantage her good health by pursuing part-time passions in photography and craftmaking.

“I don’t have enough time in the day for everything I want to do,” she said.

She’s also spending quality moments with Drew. These days the pair enjoys simple things that were less possible while Drew was growing up, like watching a movie together or going out to eat. At the same time, they’re supporting each other through life’s journey, just like they always have.

“We’re definitely pretty good at taking care of each other,” Drew said.