HEART Insight:
doi: 10.1097/01.HEARTI.0000334388.27223.28
Features: Heart-To-Heart

Caregiver Kids

Stephens, Stephanie

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In Some Families, The Tables Are Turned

Ana Sofia Padilla sometimes frets that her children are missing out on what is supposed to be a carefree time in life. Ana Sofia, her twins Stephanie and Natasha, and the baby of the family, Meagan, all take turns caring for her 66-year-old mother, Saray Esquivel, who lives with them in West Palm Beach, FL.

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During what should have been a routine pacemaker implantation in 2004, Saray suffered complications that required open heart surgery to repair and has since been disabled — tiring easily and becoming short of breath. She also suffers TIAs (transient ischemic attacks, or “ministrokes”) several times a month.

Sometimes, Ana Sofia, a 33-year-old single mother, will return home from one of her two jobs or from nursing school to find one of her daughters upset. “They...tell me, ‘Mom, I didn't get to go to the party.’ I feel that in a way, they're losing their childhoods.” She adds that her daughters are not complainers and hearing about missed opportunities for fun “breaks my heart.”

Between their mother's work and school schedule and their grandmother's need for assistance with housework, the multitasking siblings share responsibilities typically shouldered by adults. “It's a lot of pressure,” admits Stephanie, 14. “We are always watching our grandmother. If she feels weak, we have to stay home and take care of her, to keep an eye on her.”

In the mornings, Meagan, 9, walks the family's miniature dachshund, Sugar, and helps Abuela (grandmother) with breakfast. “We keep cooking simple and use the microwave a lot,” says Ana Sofia. Before and after school, all three girls wash, fold or iron laundry, ensuring that Mom's medical assistant uniforms are office-ready. “I try to have everything done by the time Mom's home,” says Natasha. In the evenings, the twins — both “A” and “B” students — help Meagan with her homework and then fix a healthy dinner.

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“No one should do it [caregiving] alone. It takes a community!” stresses Connie Siskowski, R.N., Ph.D., of Boca Raton, FL. Siskowski, founder and president of Volunteers for the Homebound and Family Caregivers, runs a unique school-based program in three Palm Beach County schools, including Boca Raton Middle School, which the twins attend. Caregiving Youth Project (CYP) works with 100 families, but Siskowski says more than 500 families in the three schools are known to rely on caregiving children. And in a recent survey of 75 of the students enrolled in a CYP program, Siskowski learned that 19 of them were caring for two family members.

Siskowski, a cardiac nurse, served as an advisor for the “Young Caregivers in the U.S.” survey conducted nationwide in 2005 by the United Hospital Fund and the National Alliance for Caregiving. The landmark study found that between 1.3 and 1.4 million children ages eight to 18 care for a chronically ill or disabled family member, and that the family usually includes a single parent and has limited means.

According to the survey, 72 percent of children in this situation are caring for a parent (34 percent) or grandparent (38 percent), who has (in order of prevalence) Alzheimer's disease, then heart, lung and kidney disease grouped second, followed by arthritis and diabetes. The rest of these child caregivers are helping tend to a disabled sibling (11 percent); an aunt or other relative (nine percent); or a family friend or other nonrelative (eight percent).

The survey also found that 58 percent of caregiving kids help with at least one “activity of daily living” (ADL), such as bathing, dressing, getting in and out of beds and chairs, using the bathroom and feeding. Of this number, 30 percent help with one ADL, 16 percent with two and 12 percent with three or more.

In addition, nearly all of these kids are also helping with one or more “instrumental activity of daily living” (IADL), such as cooking and other household chores, grocery shopping, making sure medications are taken on time and getting around the community. It is not uncommon for kids aged 12 and older to help out with paperwork and bill-paying as well. Six out of 10 young caregivers help with at least four IADLs.

Many immigrant cultures encourage home care by family, whereas in other cases, low income or lack of insurance makes the do-it-yourself approach necessary. And the growing numbers of obese adults will drive an increase in chronic heart ailments and diabetes, notes Siskowski, which means more children caring for chronically ill and disabled parents or grandparents.

Just like their adult counterparts, kid caregivers suffer stress and emotional problems. They may be absent from school, have trouble concentrating, skip homework — or even act out in class, sassing teachers, bullying other students or falling in with a bad crowd.

“It's a characteristic of childhood to feel responsible for whatever happens,” explains Carol Levine, Director of United Hospital Fund's Families and Health Care Project, established in 1996 to educate the public and medical professionals alike about the crucial role family caregivers play in the healthcare system.

“If they have an angry thought...it's typical of a child to think they have magic powers, that they can make things happen even if they don't really mean to. Part of growing up is to understand that things happen that are beyond your control,” Levine adds.

Being a caregiver also sets a child apart from his or her peers. “You can't bring your friends home, for they'll see you in a different way, make fun of you, ‘you poor thing,’ or maybe act in some way to embarrass or shame you,” says Levine. Compounding the isolation such kids can feel, a parent who is dependent on a child may resent being in that situation and “may not be able to express gratitude,” or may have dementia and not be aware of a child's efforts. Either way, a child may start to feel that nothing he or she does is enough — or good enough — which can lead to feelings of being unloved.

Unlike adults, kids have little choice in assuming caregiving responsibilities, Siskowski says. “The kids are still minors. If they don't want to do it, are they supposed to run away?”

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CYP recently received a $500,000 grant from the Robert Wood Johnson Foundation to provide young caregivers support groups, education, skills training — and some fun activities and outings. “Kids have got to let their frustration out somewhere, and don't want to do it on a sick family member,” says Siskowski.

In these school-based support groups, kids learn to express feelings appropriately, and get help solving caregiving-related problems and stress management.

CYP also holds special in-school sessions to raise awareness among classmates of caregiver kids to “positively change the school culture,” says Siskowski, who was a former child caregiver herself at age 11, helping her grandfather put on his socks, go to the bathroom, take his medications — even waking up at 2 a.m. to make sure he got that last dose of the day; he died of heart failure two years later. The goal is to encourage caregiving kids to be able to talk to their peers and their families about their responsibilities and frustrations, without having to worry about being teased or that no one will understand.

In the Spring and the Fall, CYP also arranges a weekend outing for caregiver kids at a local camp, Camp Treasure, so they can get away from it all and go swimming and do other “kid things.” Stephanie just got back from Camp Treasure and feels renewed and refreshed. “We were free,” she recalls, “but could deal with emotions and still keep things on track. It took the stress away.”

Another stress-buster for the family: Every two to three months when she finds her daughters feeling “down,” Ana Sofia says they “sit together and let it all out.” Then, “we wipe our tears and start again, stronger than yesterday and always looking forward.”

Stephanie is as philosophical about her sometimes difficult circumstances as a teenager can be: “You learn, gain a lot of experience, see things differently than kids my age normally would. We've been through a lot. We've learned to grow up a little faster.”

She also mentions another upside to her situation: “We talk to Mom about everything — you know, there aren't many kids who can do that.”

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A Snapshot Of Caregiving Kids

▪ 1.3 to 1.4 million children — boys and girls alike — between the ages of eight to 18 years old care for someone who is sick or disabled.

▪ Kids who are caregivers tend to live in households with lower incomes than those who are not caregivers; are likely to be nonwhite or Hispanic; and are also more likely to live with only one parent.

▪ Over half of the child caregivers help with at least one activity of daily living (ADL), such as bathing, dressing, toileting and feeding, and nearly all also help with shopping, household tasks and meal preparation.

▪ Boys, in particular, experience sadness, isolation and other emotional distress that takes the form of behavioral and school problems.

Source: “Young Caregivers in the U.S.” survey

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Resources for Young Caregivers

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Boca Respite Volunteers/Caregiving Youth Project 561-391-7401, www.boca-respite.org

American Association of Caregiving Youth, 800-725-2512, www.aacy.org

The Princess Royal Trust For Carers www.youngcarers.net

© 2008 American Heart Association, Inc.