[BobbyB]

Daily Chores
Young Caregivers: Parents
Turn to Children for Help
Many Juggle School With Feeding Tubes, IVs
By CLARE ANSBERRY
January 5, 2007; Page A1

PAULDING, Ohio -- Every morning, at about 6, Jordan Wilhelm goes into his parents' room to lift his father out of bed.

The 17-year-old high-school senior carries his dad down the hall to the bathroom, his mother following behind. He helps her get him into the shower, and then dressed, slipping pants on his father's legs and coaxing his arms through shirt sleeves.

During the week, if his father falls out of his wheelchair or has to use the bathroom, he calls Paulding High School, saying he needs Jordan home. With the school less than a mile away, Jordan arrives in minutes. He helps his father back onto his green recliner in the family room, draping a plaid blanket over his legs, before returning to class. "It's my life," says Jordan. "Even when I was young, he couldn't do a whole lot."


A.J. Mast/Getty Images
Jordan Wilhelm helps his dad, Paul Wilhelm, guide his wheelchair up a ramp at their house.
Paul Wilhelm, 55 years old, has multiple sclerosis, a progressive and chronic condition. Though his wife, Sue, works two jobs, the family can't afford someone to help care for him. Mrs. Wilhelm looked into it a few years ago. The going rate was $15 an hour, she says, twice what she was earning at the time and not covered by insurance. So she and her husband have come to rely on their children.

Many parents do. Across the country, children go about providing home health care to parents, grandparents or other relatives. They suction breathing tubes, change catheters, and run steroids through IVs. These children assume household chores at early ages, preparing meals and doing laundry for a parent who can't. In many ways, the care they provide mirrors or exceeds the tasks that often overwhelm adult children caring for an elderly parent.

The ranks of young caregivers are large and expected to grow, given advances in medicine and technology. People with conditions such as Lou Gehrig's disease, multiple sclerosis, lupus, cancer and heart disease are living longer. With portable machines that help them breathe, swallow, and communicate, paralyzed parents can remain at home longer.

A 2005 study found as many as 1.3 million to 1.4 million children in the U.S. ages 8 through 18 provide care for a chronically ill or disabled family member, based on a two-part survey that included random sampling of 2,000 households and follow-up interviews with children and other family members. Policy makers and family advocates say they had been unaware that so many children were providing such care. Previous studies only polled caregivers 18 or older. "It is the norm to think of children requiring care, not providing it," explained authors of the study.

The study, funded by the U.S. Administration on Aging and conducted by the National Alliance for Caregiving and the United Hospital Fund Foundation, found nearly 60% of child caregivers helped with a task such as bathing, dressing or feeding. A fourth of the children had no one helping them with the tasks, and about half said the caregiving took a significant amount of their time. Boys were almost as likely to provide care as girls. More than 400,000 were under 12. About 60% of the children came from households earning less than $50,000.

While motivated by love and devotion, these children often have little choice. Many live in single-parent homes, with only the infirm parent. In two-parent households, the healthy parent may be working. Few can afford paid home-care help, which generally costs from about $140 to $180 a day. Skilled nursing care costs much more.


Jordan Wilhelm (left) helps his father, Paul, who has multiple sclerosis, into a chair at home.
Most private health-insurance policies don't cover in-home care, unless they are specific -- and expensive -- long-term care policies. Medicare, the federal insurance program for the elderly and those under the age of 65 with certain disabilities, will pay for hospitalization and some in-home care when considered medically necessary, such as when a person has open wounds, is recently released from a hospital or receiving hospice care. But it doesn't provide continuing in-home help for people with chronic conditions, even if they're on life-support systems.

David Queen was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in 1986 -- two months before he married. Doctors said he had six months to three years to live. They were wrong.

Now 47 and living in Wayne, W.Va., Mr. Queen has two teenagers, Amanda, 19, and Judd, 17. He breathes through a ventilator and communicates through a computer. His wife, Debbie, works full time doing clerical work for a state agency. She earns $13,000 a year and gets health insurance, which covers hospitalization but not in-home help. She pays to have someone sit at home with her husband while she is at work and her children are at school. After the sitter is paid, she is left with $90, which must last for two weeks.

The children helped with his care from an early age. When Amanda was 5, Mrs. Queen had to run a quick errand, leaving her and Judd, then 4, playing on the floor near their father.

Mr. Queen started choking. Amanda climbed on a stool next to his chair. Having watched her mother do this before, she turned on the suction machine, opened the cap that covered her father's trachea, inserted a catheter down his tube and suctioned the phlegm that was choking him. Her father began breathing. Amanda handled the task "just like a pro," says Mr. Queen.

Amanda and her brother now routinely feed their father, by releasing a liquid supplement into his feeding tube with a syringe. Amanda changes his tracheotomy tubes, a delicate and often messy process typically handled by a respiratory therapist, which the family can't afford.

Without children helping to provide care, some of these parents would likely end up in an institution, such as a nursing home. Institutional care is generally more expensive, but it is usually covered by Medicaid.

Placing so much responsibility on young people can end up being costly. "If a family breaks apart because the burden becomes too much for a child, you're talking about two institutional placements: The parent in a nursing home and the child in the foster-care system," says Nancy Law, of the National Multiple Sclerosis Society. The society, which offers some respite care to families and scholarships to children whose parents have MS, is launching a pilot program to help child caregivers.

A handful of states offer vouchers or tax credits for respite home care, to provide a break for caregivers. The Lifespan Respite Care Act, passed last month, authorizes the Department of Health and Human Services to award a limited number of grants to selected states to make temporary help available. Friends and relatives often offer assistance as well.

Many children become more responsible and compassionate caring for a parent, but it can take a toll. "Worry is a big thing for these kids," says Connie Siskowski, head of the American Association of Caregiving Youth in Boca Raton, Fla., which offers support services to 260 local families.

Like new parents, they check on a mother or father in the middle of the night. Interest in school or sports may fade. They wonder what will happen when they turn 18 and want to go to college or leave home, and whether their parent will be able to cobble together care from neighbors or other relatives.

Marissa Fleming, 18, of Beaver Falls, Pa., will occasionally get mad at her mother, who is single and has MS. With MS, one day a person can walk and the next day they can't. These on-and-off symptoms, which baffle doctors, are even harder to fathom for a child.

"It feels like she doesn't want to help, not that she isn't able. I feel like she's Mom and she should be doing things," says Marissa, an only child. Along with giving her mother injections and helping get her showered and dressed, Marissa buys groceries, cooks and washes clothes. In the summer, she worked two jobs, going straight from Subway to Rita's Italian Ice.

"Sometimes I say stuff to my mom and it usually starts an argument. Then I feel bad," Marissa says. Going out with friends leaves her torn. She wants a break from tending to her mother, but "I worry about her."

Her mother, Maria, tries to keep requests to a minimum, waiting to ask for water until she needs something else. "I try to think of three things I need, so I don't have to ask her separately," says Ms. Fleming.

Some parents try to find ways to make their disease less of a burden, especially for young children. In Minneapolis, Adina Goldstein, a divorced mother with MS, suggests to her 10-year-old son, Danny, that they have a picnic on her bed when she can't get up. Having a son or daughter provide what is, at times, intimate or serious care adds another disconcerting dimension. But parents may have few options.

With no family in the Cleveland area, Sue Nerlinger, a 52-year-old single mother, relies on her twin 16-year-old boys to cook, help her into bed and make repairs on the fixer-upper she bought about two years before she was diagnosed with MS. Her son Charles began mixing medicine and giving his mother shots after watching a video provided by the pharmaceutical company. Her other son, Tom, has stayed home from school when she has fallen.

After her diagnosis, Ms. Nerlinger vowed she would never subject her sons to helping her get into the bathtub. That lasted until this summer, when she lost the use of her left side and couldn't walk or stand on her own. Reluctantly, she asked for their assistance, but kept her robe on until they left the bathroom. Tom returned repeatedly to the door, shouting, "Mom, are you OK?"

"I hoped I would never have to face that with the boys," she says.

Jordan Wilhelm, the Ohio high-schooler who lifts his dad out of bed each day, never knew his father when he was healthy. Neither did his two older sisters.

At first, the children saw their father's illness almost as a novelty. No other dads had a collection of canes, including one with a sword hidden in the shaft and another with a car's shifter knob welded on top. By elementary school, when their father could no longer walk and had to get an electric scooter, all three children would hop on it, beeping the horn and taking turns steering.

On Sundays, the entire family would ride to St. Joseph Catholic church, Mr. Wilhelm on his scooter, the children weaving their bikes alongside, Mrs. Wilhelm following on her own bicycle. They went on limited family vacations, driving 30 minutes to a hotel in nearby Defiance, Ohio, where the children swam in the pool.

While the children were still in grade school, Mr. Wilhelm was getting worse. A mechanic, he could no longer work at Paul & Dan's Radiator Shop, which he owned with his brother. Aware of his knowledge about cars, and his growing limitations, friends offered him jobs working in a store that sold Nascar items, and later at Advance Auto Parts, where he could ride down the aisles to help customers locate parts and answer the phone.

Mrs. Wilhelm took a job at a factory which provided health insurance. The insurance helped pay for treatment, including injections and steroids. But none offered lasting improvement. When a friend suggested an alternative therapy that would require the family's involvement, the children volunteered.

The man, who raised bees just outside of town, sent them a book called "Health and the Honeybee" describing how bee venom was used to treat diseases. Three times a week, the children -- then ranging from 8 to 11 -- went with their father to the farm. The girls took 20 live bees, impaled on pins, and stuck them into their father's legs, so the bees would sting him and release venom. Jordan's job was to remove the stinger with a razor. It was frightening, but "I did it because I thought it would make dad better," says Valerie, now 20.

Almost immediately, Mr. Wilhelm, who had been slurring words, began speaking clearly, which the bee farmer and family attributed to medicinal powers in the venom. The family rejoiced. But after several months, Mr. Wilhelm's legs began swelling and his doctor said the venom was poisoning him.

Eventually, he had to quit working and trade the scooter for a wheelchair. Any lingering novelty was gone. They added a ramp to the garage of their single-story brick ranch house. When Mr. Wilhelm could no longer lift his leg to get into the tub, the family replaced it with an open shower, with metal handgrips.

The physical decline was depressing. But his emotional change, due either to his condition or medication, disturbed the children too, especially as they got older and more self-conscious. Mr. Wilhelm would weep during movies, or in church when he heard an inspirational verse.

Not knowing what to do, his youngest daughter, Marilyn, would pat him on the back, saying, "It's OK, it's OK," while privately wishing he would be tougher or that she could disappear. "It was kind of embarrassing," says Marilyn, now 19. "As a kid, you don't see anyone else's dad doing that."

In 2002, Mr. Wilhelm's hands began shaking so much he couldn't hold a fork or spoon. The treatment of last resort -- chemotherapy -- didn't help. As he declined, his children became reluctant to leave him alone. In school, when ambulances sounded a siren, Valerie said a prayer that it wasn't for her father. Jordan started turning down invitations to sleep over at friends' homes. "It was more helpful for me to be at home," he says.

Relatives provided some assistance: Mrs. Wilhelm has a mother and brother nearby, and Mr. Wilhelm has three brothers and two sisters in the area. But day-to-day tasks fell to the immediate family. The children would argue over whose turn it was to feed their dad or empty the urine bag, and then feel guilty about it. "If we continued to keep score," says Marilyn, "father would not get fed or go to the bathroom."

By then Mrs. Wilhelm had taken a job as a teacher's aide so she could come home on her lunch hour and feed Paul. It provided insurance, but starting pay was only $7.50 an hour. Although she is now an office manager, earning $9.75 an hour, she works Thursday nights and Saturdays at a dentist's office to help pay bills.

Knowing the demands on his children, Mr. Wilhelm tried to inject some humor into the routine. He joked, his speech slow and labored, but clear to them, saying they had "earned an extra cookie for the day" by adjusting him in his recliner or getting him his medicine.

In their town of 3,500, locals have helped too. When Mr. Wilhelm rides his motorized wheelchair to Bubba J's, a restaurant a few blocks away, either the owner or one of the waitresses will feed him. Mrs. Wilhelm's boss's husband collected money from the community and recently bought the family a 1987 van, with a lift for Mr. Wilhelm's wheelchair, so Jordan doesn't have to carry him in and out of the car.


From left, Jordan Wilhelm with parents, Paul and Sue.
In the past year, Mr. Wilhelm has lost the use of both arms. He can't sit up on his own. A weight is strapped to his right hand to still tremors and allow him to operate the remote that moves his recliner.

With both of her daughters now in college, Mrs. Wilhelm says more responsibilities have fallen on her son. "I can't do anything with Paul without Jordan," she says. If his father has a doctor's appointment, Jordan takes time off school or work, and stays up all night when his father has a stomach virus. This summer, Jordan worked a shift from 4:30 a.m. to noon at a local turkey farm, cleaning barns and feeding birds, so he could be at home in the afternoon.

"It hits Jordan harder because he is on call most of the time," says his sister Marilyn.

Last year, Jordan became depressed and anxious. He began having panic attacks, lost interest in his friends and couldn't concentrate, he says. He dropped out of band, though he had played trombone since middle school.

When his father wanted to be moved or wanted water, Jordan became irritable. "Everything I did was repetitious and got on my nerves. I'd get up. Go to school. Go to work. I didn't have any down time. I'd come home and dad would ask a simple question, like 'Can I use the bathroom?' and I'd get angry and yell at him and it made him mad," says Jordan. "After, I felt bad about it. I didn't mean to do it, but I got so tired of doing everything."

His mother suggested he talk to a therapist. That has helped keep his father's care in perspective, Jordan says. He has already told his mother he will go to college nearby, so he can live at home and take care of his dad for the foreseeable future. Mrs. Wilhelm hopes to continue working for at least six more years, so she will have the required time to receive health insurance after she retires.

As a boy, Jordan was often with his father at the radiator shop, listening to him explain how cars work, fascinated by engines and motors. Now, he takes his father to the workshop behind their house. Mr. Wilhelm watches from his wheelchair and gives advice, while Jordan restores a cherry-red 1965 Chevrolet Chevelle.

On a recent afternoon, Mr. Wilhelm sat in his family room and said to his son, "Jordan, bring my pride and joy around." Minutes later, Jordan drove down the driveway, pausing to idle the car, so his father could admire it from the window.

Write to Clare Ansberry at clare.ansberry@wsj.com

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