By Stacy Lu
This is the first of a series exploring the impact of the Great Challenges through storytelling.
At least five days a week for the past four and a half years, 17-year-old Jimmy Braat has been traveling two miles to the home of his 73-year-old grandmother in Lake Worth, Fla. Along with his mother, Debbie, he usually stays a few hours, doing household chores, helping to change the wrappings on his grandmother’s legs that prevent swelling from lymphedema, giving her medicine.
Then, he and Debbie may take her grocery shopping. At least once a week he also accompanies her on one of her many doctor visits – to the endocrinologist, podiatrist, pulmonologist, cardiologist, or sleep specialist – lifting the wheelchair that’s too heavy for his mom to manage.
His “Grandma Del” suffers from a range of ailments that limit her mobility, including diabetes, neuropathy, and pulmonary hypertension. Jimmy’s dad passed away in 2008 from heart failure. Debbie, 52, has pulmonary hypertension and is easily winded. His family can’t afford private care, Del does not qualify for Medicaid, and Medicare covers home care only for limited situations and periods of time.
Del refuses to go to a nursing home and doesn’t want to move in with Debbie. So much of the work caring for her has fallen to Jimmy, who is an only child.
“He doesn’t mind. He never complains,” Del says. “I took care of him when he was a baby, and now he takes care of me.”
Jimmy is one of more than a million children providing some or all care for ill family members or special needs siblings. According to a survey by the National Alliance for Caregiving and the United Hospital Fund in 2005, at least 1.3 million children ages 8 to 18 help care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparents.
A Growing Problem, Yet Largely Hidden
There are no recent national studies, though as many as several million youths could be caregivers now, says Connie Siskowski, Ph.D., president of the American Association of Caregiving Youth (AACY), an advocacy and resource organization. Demographics may be pushing more children into the role: People are living longer with chronic illness, and single-parent or multi-family households are increasingly common, as are grandparents raising grandchildren.
While adult caregiving has gotten more awareness, the issue of a child helping is less known, says Suzanne Mintz, co-founder and CEO emeritus of The National Family Caregivers Association.
“It’s always been assumed that family cares for family, and that, of course, is true. But in the modern age when medical science performs miracles that help people live so much longer, it’s not just kids helping dad or helping grandma, it’s them actually doing medical procedures. And it’s not just for a couple of months, it’s for years and years,” she says.
A Born Helper
Jimmy’s caregiving journey began at the age of nine, when he began helping to care for his great grandmother, who suffered from dementia. He brought her newspapers, ground her pills into applesauce, and warmed meals in the microwave. She passed away when he was 13.
“He’s always been such a sweet little boy,” says Debbie Braat. “When he was real little, around six years old, I had to have surgery on my feet — one foot one year, one foot the other year. When I had the surgery I couldn’t walk around at all, but he would get up and he would do the laundry. He couldn’t even reach the washing machine, but he would pull himself up and sit on the machine.”
Of his grandmother, of whom he has always been close, Jimmy says, “She’s a difficult person. It’s not really her illness. She’s got a one-track mind. My trick is, when me and her start to argue, I just put my headphones on.”
Still, he says, ” I had a period of time when my grandmother was in the hospital for a few months and on life support for two of those months. The hardest thing for me was seeing her on life support for the first time.”
Jimmy is about three years behind in high school, he says; according to a 2006 report sponsored by the Bill & Melinda Gates Foundation, some 22 percent of high school dropouts surveyed left to take care of a family member. Now he takes high school classes through an online course offered by Palm Beach County. He is often so tired that, he says, “I end up passing out in at least one of my classes each day.” He also suffers from depression; research suggests caregiving raises the risk for depression and anxiety in child caregivers.
When he does have free time, Jimmy joins activities like camping, cooking classes and dinners sponsored by The Caregiving Youth Project in Palm Beach County, Fla., a pilot program that offers kids ages 10 and up who help family members care instruction, tutoring, home visits and activities. Though the AACY hopes to start a national network, to date it’s the only support program of its kind.
Jimmy will care for his grandmother, he says, “Up until the point where she passes away. There’s no exit strategy. Besides, there’s no one else to do it. “
For more on the issue of caregiving, see the TEDMED Great Challenges web site.