When a Kid Becomes the Caregiver
Saturday, August 25, 2007
GREENSBORO, N.C. -- After her first day of classes this week at the University of North Carolina's campus here, Aleyna Castillo crossed a field, passing joggers and cyclists and students sprawled on the grass, reading in the sunshine. She didn't linger at her brick dormitory. The Loudoun County teenager got into her car and drove 10 minutes to her other home.
There, in a darkened bedroom, her mother lay propped up in bed, a fan humming. Castillo brought a damp washcloth for Lynn Turner to wipe her flushed face with and a toothbrush with a Dixie Cup to spit into. She brushed her mother's hair and offered strawberries to supplement her breakfast of Pop-Tarts. Castillo's 9-year-old cousin, Anthony McNeil, dribbled a soccer ball down the hallway. "Change your shirt," she hollered after him.
Castillo, 18, is one of many teenagers across the country who are caregivers for ill or disabled relatives -- a little-known group that labors under unusual stress and with few resources. Her mother has multiple sclerosis, a degenerative neurological disease that has left the 40-year-old in a wheelchair, unable to work, make dinner or shower without help. For the past year and a half, Castillo has bathed her, prepared her meals, emptied her catheter bag and given her two dozen kinds of medication. She helps take care of Anthony, too, getting him off to school and reminding him to take out the trash.
So when Castillo was accepted to her top-choice university, she decided she would not go alone. "I can't totally abandon my mom," she said. "She needs me." While others from the Class of 2007 at Sterling's Dominion High School were packing a few suitcases to go to college, Castillo boxed up the contents of her Middleburg home and moved the whole family. Her mother's hospital bed and medicine chest, Anthony's tennis racket and video games, her collection of karate trophies and baby pictures all were moved to Greensboro.
As many as 1.4 million children in the United States from age 8 to 18 care for a chronically ill or disabled relative, according to a 2005 survey by the United Hospital Fund and the National Alliance for Caregiving. Children provide companionship, run errands and balance checkbooks. Some change feeding tubes or adult diapers.
Mood swings and antisocial behavior are more common among teenage caregivers than their peers, the study found. And one in five young caregivers misses a school or after-school activity to help a family member. Still, there is little recognition of the adult-size jobs so many youths perform throughout the United States, and there are few public services to assist them.
The population of young caregivers will probably grow as Americans start families later in life and as medical advances enable patients to live longer and at home, according to demographers and caregiving experts. Single parents rely on children more, as do immigrant parents who count on the younger generation to help with translation and navigate the health-care system. Children from low-income families are most likely to provide unpaid medical care, experts said.
Multiple sclerosis, typically diagnosed in young or middle-age adults, has long been recognized as a disease with a profound impact on children. But children also help parents or grandparents with Alzheimer's disease, drug addictions, mental illness, HIV, brain injuries and cancer.
Such children share feelings of "stress, isolation and fear, thinking they are the only ones," said Connie Siskowski, a registered nurse who started what is believed to be the nation's first program to identify and assist caregivers in public schools, in Boca Raton, Fla.
"When there is a serious illness, there's also the fear of not only what's going to happen to that person but what's going to happen to me," she said.
Castillo was 9 when Turner, a single mother, received her diagnosis. "I thought she was going to die," Castillo recalled.
The self-described tomboy cowered each week when her mother gave herself a shot to slow the progression of the disease. "At first, she cried," Turner recalled. "Then she was like, 'Hey Mom, let me do that.' " Turner showed her daughter how to plunge the syringe deep into her thigh, a scary procedure that soon became routine.