From the intro to a feature in The New York Times Health section:LANTANA, Fla. — Partly paralyzed, with diabetes and colitis, Linda Lent needs extensive care at home.
But with her husband working long hours at a bowling alley, Ms. Lent, 47, relies on a caregiver who travels by school bus toting a homework-filled backpack: her 13-year-old daughter, Annmarie.
Annmarie injects migraine medicine, dispenses pills, takes blood from her mother’s finger for tests and responds to seizures — responsibilities she has at times found overwhelming.At 11, she said, she felt “fed up,” thinking: “There’s no law says I have to take care of her. Why should I have to do it? Other kids, they could go out and play with friends.”
Across the country, children are providing care for sick parents or grandparents — lifting frail bodies off beds or toilets, managing medication, washing, feeding, dressing, talking with doctors. Schools, social service agencies and health providers are often unaware of those responsibilities because families members may be too embarrassed, or stoic.
Some children develop maturity and self-esteem. But others grow anxious, depressed or angry, sacrifice social and extracurricular activities and miss — or quit — school.
“Our society thinks of children as being taken care of; it doesn’t think of children as taking care of anybody,” said Carol Levine, director of families and health care at United Hospital Fund, a health services organization that studied child caregivers.
“Kids who do it well gain confidence,” Ms. Levine said, but “they may be resentful, not do as well in school and feel limited because their role is to be the caregiver.”
Health organizations are increasingly “realizing the extent of what children are doing,” said Nancy Law, an executive vice president of the National Multiple Sclerosis Society. “Everything from children who become overly responsible” to “the kid who totally rebels and gets into trouble.”
“This is an issue that’s growing,” she said.
A 2005 nationwide study suggested that about 3 percent of households with children ages 8 to 18 included child caregivers. Experts say they expect the numbers to grow as chronically ill patients leave hospitals sooner and live longer, the recession compels patients to forgo paid help and veterans need home care.
Recently, programs have been formed to help children find support. Several Florida schools now have classes and meetings regarding caregiving.
Other countries do more. In Britain and Australia, the census counts child caregivers, and many of them have rights to participate in patient-care discussions and to ask agencies for help or compensation.
Hundreds of programs help them, said Saul Becker, a sociology professor at the University of Nottingham. “It’s such a big issue.”
Experts say that in the United States, the issue is often hidden.
“It is embarrassing for grownups to admit they’re so helpless that a child is caring for them,” said Kim Shifren, a psychology professor at Towson University, who studies child caregivers and was one herself.
Ms. Levine said children worried that “friends won’t understand and if some outsider sees they’re doing all this stuff there may be problems for the family.”
Michael Anderson II, 12, of Boynton Beach, Fla., (pictured) said, “I don’t really talk to people about it.” His mother, Iris Santiago, 43, is legally blind, anemic and has depression and hernias.Michael gives B12 injections, helps with medicine and guides her when she walks — “my seeing-eye boy,” she calls him.
