1.4 million children in America care for chronically ill parents and grandparents.
John Lore always had a close relationship with his sons. Every night when he came home from work, he spent time with John Jr. and Will. He'd swing them in the air, put them on his shoulders and trot around the house. He liked to get down on the floor and play with the boys.
Three years ago, Lore was diagnosed with ALS, or " Lou Gehrig's disease," a progressive illness that affects the nerves in the brain and spinal cord. Lore gradually began to lose his physical strength. During the first two years of his illness, John Jr. and Will helped care for him on a daily basis. Every morning, they helped him to dress, buttoning his shirts and putting on his shoes and socks. At mealtimes, they cut up his food and held a straw for him so that he could drink. They also pitched in with housework, making beds, dusting and vacuuming.
Despite his illness, John and his wife, Tracy, who live in Weston, were determined to lead a normal family life for as long as possible. John attended the boys' soccer and football games in a wheelchair. When they traveled, the boys helped him to navigate airport restrooms. They rolled him in his wheelchair around Disney World during a much-anticipated family vacation.
Today, John is receiving crisis care and is in the final stages of his illness. Although his mind is active and fully engaged, the 52-year-old man can't speak or move, except to press his knees together. He can only communicate with his family by means of a special, eye-tracker computer. A hospice nurse looks after him much of the time.
John, Jr., 11, and Will, 8, are now less involved in their father's daily care.
"There isn't much they can do for their dad at this point," Tracy Lore says. "But they have to fend for themselves a lot of the time. They often put themselves to bed and get themselves up in the morning for school."
John Jr. says he likes helping his dad. "I change TV channels for him. If Dad wants something, he has a doorbell between his knees. When he presses it, I go to him. And when Mom isn't home, I listen for the bell to make sure Dad is OK." He adds quietly, "It's hard sometimes."
Tracy Lore says that despite the stress, the boys are doing well. She talks to them often about their father's illness in simple terms they can understand. She makes sure that the boys receive plenty of support from family and friends, and that they keep up their social and sports activities. She even bought a golden retriever, Max, to keep them company.
Still, she worries about the long-term impact of their father's illness. "This has definitely affected their schoolwork," she says. "John Jr. has always been a straight-A student, but his grades dropped to B's [last] year. I've seen periods when the boys don't quite seem to be themselves. At times, I feel that their focus just isn't there."
A common problem
As many as 1.4 million children in the United States provide care for an older adult, according to a landmark study, Young Caregivers in the U.S., which was issued by the National Alliance of Caregiving and the United Hospital Fund and funded by the U.S. Administration on Aging. Their ages range from 8 to 18, and 400,000 of them are under the age of 12. These young caregivers are evenly balanced by gender, with boys making up 49 percent of the total, and girls 51 percent. Seven in 10 child caregivers (72 percent) are caring for a parent or grandparent.
The study, which was the first of its kind in the United States, found that about 58 percent of the young caregivers help with at least one routine daily activity, such as bathing, dressing, getting in and out of beds and chairs, eating, and using the toilet.
Help isn't easy to find
Families struggling with this problem are often afraid to ask for help. "Even though we talk a lot today about illnesses such as Alzheimer's disease, people don't like to admit that a relative has it," says Connie Siskowski, Florida representative of the National Family Caregivers Association, as well as founder and president of Volunteers for the Homebound and Family Caregivers.
"There are still a lot of feelings of shame and guilt. And children who are caregivers are often silent, fearing separation from their parents."
Siskowski, who recently founded the American Association of Caregiving Youth in Boca Raton, says that there are a large number of child caregivers in South Florida, particularly in culturally diverse, single-parent households. When parents in these homes can't afford to hire a home health aide, care-taking responsibilities may fall to a child. "Another compounding factor in Palm Beach County is that we have a large elderly population, as well as a high number of young disabled people," she says.
The study Young Caregivers in the U.S. reported that child caregivers tend to show more anxious or depressive behavior than non-caregivers. "If parents don't handle this situation correctly, children may become very angry," warns Karen Dresbach, president of the South Florida chapter of the National Multiple Sclerosis Association. "They may feel stifled by it and act out in an inappropriate manner. They may not be motivated to do well in school or to try out for sports."The National MS Society offers programs for children who have a parent with multiple sclerosis. "These kids are often frightened. They don't understand why Mommy is tired all the time and can't go on overnights with the Girl Scouts anymore," Dresbach says. "We help them to understand what the illness is and how it impacts them. We also work with parents and discuss with them appropriate ways for their kids to help them at home."
One day at a time
Susan Karneth, a resident of North Lauderdale, has found ways for her kids to help her cope with her illness without it overwhelming their lives. She has had MS for 10 years and also suffers with rheumatoid arthritis. With constant fatigue, and muscle and joint pain, it's sometimes hard for her to walk.
Karneth's children -- Kira, 15, Kayleigh, 13, and Thomas, 11 -- help her to get dressed in the morning and to sit down and get up out of low-lying chairs. "We have a system," Karneth says. "We lock arms, count to three, and the next thing you know, I'm vertical." They also assist with grocery shopping, cooking and housework.
"They do more than most kids do, but I won't let the disease rule their lives," she says. "I tell them, 'I have the disease, you don't. Don't use it as an excuse as to why you can't do something.' We take it one day at a time and work together as a family. And we talk a lot about the disease and what's going on."
Karneth sends her two youngest children to a special summer camp sponsored by the South Florida chapter of the MS Society. "They have activities and fun and get to be a kid. At the same time, they have counseling sessions with kids their own age who have a family member with MS. They talk about how it affects their lives and how they feel about it. It's helped my kids a great deal."
Recognition is needed
Gail Hunt, president of the National Alliance for Caregiving, says that the high incidence of children who are caregivers is a national problem that has not even been recognized, much less addressed. "When you talk to program administrators and congressional staff, they don't know that children are doing caregiving," she says. "They're horrified to find that a mom with MS may only have a child at home to help with personal tasks."
These families need more resources and support, and additional research studies of young caregivers must be funded. "The National Alliance of Caregiving is going to form a coalition with social service, health-care and caregiver organizations and governmental agencies," says Hunt. "We need to get more attention to this issue at the national level."
Susan Feinberg is a freelance writer. She lives in Boca Raton.