When a Kid Becomes the Caregiver

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A Young Caregiver's Burden
Aleyna Castillo is not like most college freshman. On top of taking classes and pursuing her dreams of opening a day care center, learning sign language or becoming an orthodontist, she must also care for her 40-year-old mother, who has multiple sclerosis, and her young cousin.

On Christmas Eve, Turner's lowest point, she used a broken light bulb from a bedside lamp to cut her wrists.

After several days in a hospital, the new year looked brighter. Castillo was accepted to UNC-Greensboro and was applying for scholarships. Anthony had neighborhood friends and a mentor who played tennis with him and took him to church.

But in early spring, social workers from the county's adult and child protective services knocked on the door. "Somebody had complained that Anthony was helping too much," Turner said. The social workers designated Turner an "incapacitated caregiver," she recalled, and said Anthony could not stay without another adult to supervise. Castillo, not yet 18, did not qualify.

Many who work with young caregivers say it's common to avoid seeking outside help, even in desperate situations, because they fear they will be scrutinized for neglect or abuse.

"The thing that younger children fear most of all is being taken away from their families," said Carol Levine, director of the families and health-care project at the New York-based United Hospital Fund. "In general, the answer is not to take them out of the family, but to provide support for the family and for them."

But few support programs exist. Some disease-specific groups, such as the National Multiple Sclerosis Society, offer counseling or social activities for caregiving children, but at the school or county level, youth caregiving "is practically not recognized," Levine said.

In contrast, England's young caregivers are acknowledged in the census and by law entitled to a needs assessment and a number of services. About 350 English organizations help 30,000 youths with counseling, homework and social activities, said Saul Becker, a social policy professor at the University of Nottingham who has studied caregiving youths.

Loudoun social workers arranged for a nurse's aide to visit Turner 30 hours a week, a short-term emergency measure until the family could find a sustainable solution. The help was extended, Turner said, but only until last month. That was when the family moved.

Now in Greensboro, far from relatives and friends, the family members are trying to start over. Saddled with moving expenses, they rely on credit to buy groceries. Castillo's tuition was covered by grants and scholarships, but she was blindsided by the $500 bill for textbooks.

Turner had contacted a Greensboro social services agency before moving and expected to qualify for similar nursing care. But she didn't understand that the aide would come only eight hours a week . Unable to pay for more nursing care, which can cost upwards of $15 an hour, she started thinking, "What can I do?"

Lately, Turner and her husband have talked of reconciling, and he might move to Greensboro, she said.

"That would take a lot of pressure off me," Castillo said.