Caring for a Parent With Multiple Sclerosis
Megan Butterman, now 18, is her class valedictorian with a scholarship to college and a track record as a star student … all while caring for her mother at a very early age. But not all youth caregivers have such positive outcomes.
By Madeline R. Vann, MPH
Medically Reviewed by Farrokh Sohrabi, MD
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Megan Butterman was 7 years old when her mother received a multiple sclerosis diagnosis and just 12 when she became most involved in MS caretaker responsibilities. A tall order for a 12-year-old.
Though Megan had help from her two older brothers and her father, being an MS caretaker meant helping her mother up after a fall, assisting with daily tasks such as cooking, and balancing her own academic goals with family needs. But until she reached high school and spent more time at other people’s homes, she didn’t know other people lived any differently. In fact, she’s far from alone. Megan is one of an estimated 1 million young people who provide care for a parent or relative every year.
Today, at 18, she is going to college with a scholarship from the National Multiple Sclerosis Society and a track record as a stellar student, built on a foundation of working both as a caregiver and in part-time jobs throughout her childhood.
Despite the good outcomes for her studies, Megan is sensitive to the double-edged sword of being an MS caretaker. “I became a lot more mature than the people around me. I had some difficulty making friends,” she acknowledged.
One of the biggest challenges she recalled was that people outside of her family didn’t always understand the variability of MS symptoms. One week her mother might be up and about, socializing and taking care of the house and family, while the next week her symptoms relegated her to bed, requiring Megan to spend more time on caregiving and household tasks. Ignorance about how MS can affect people differently from day to day or week to week created a distance between Megan and those around her.
In the middle of those challenging years, Megan was able to form a bond with a teacher at her school who provided a sympathetic ear and connected her to a social worker for counseling and support during a difficult time, who even drove her to a college entrance interview when her mother could not.
These sorts of bonds with adults outside of the household can make all the difference for young adults who are MS caretakers, said Pat Daily, LCSW, director of counseling and support services at the Rocky Mountain MS Center in Westminster, Colo. “Just connecting with one adult, a teacher, a mentor, a neighbor, can help children in this situation,” she explained.
Megan’s teacher helped her find nearby resources that met her needs. In other situations, young caregivers might need assistance putting together paperwork to apply for state or federal aid, transporting family members to important appointments, or just getting a break from the caregiving routine so they can do the things their peers are doing, such as going to sporting events or the movies.
Yet many families feel that they have to keep their situation a secret, nearly forbidding young caregivers to seek support. “We see on an aggregate basis children sacrificing their education, health, well-being, and childhood,” said Connie Siskowski, founder of the Florida-based non-profit American Association of Caregiving Youth. Families may believe that if adults around them knew how much care the child or teen is providing, social services would remove them from their homes. Increasingly, however, Siskowski clarified that social service agencies are more likely to try to provide services and help the family stay together than place children in foster care. But children and parents still fear being separated — and this fear can make it hard to ask for help. Personal preferences also can create a barrier of silence.
“I am not the kind of person who shares a lot,” admitted Megan. “It was hard for me.” But when she found a teacher she trusted, that connection proved to be enough to bolster her during some of the tough times when she might otherwise have given up on school success or a bright future. Also, she said, her mother always prioritized her education for her, making it easier to work toward academic success despite the stress of balancing her desire to help her mother and her family with the demands of school.
Siskowski and Daily both emphasized that young caregivers and the adults around them can help find resources for children through the AACY at 800-725-2512 and the National Multiple Sclerosis Society at 800-344-4867.
Eventually, young caregivers grow up and have to make their way in the world, and Megan is about to get that opportunity. She's the youngest of three siblings. While her two older brothers left home and, about two years ago, her father and mother divorced — making Megan her mother’s primary support while at home — this situation is changing. Megan starts college in the fall of 2013 and will be living on campus. The family's middle child will be returning from his tour with the U.S. Army to help care for their mother.
Perhaps the greatest need young caregivers have is simple acknowledgement. Siskowski pointed out that many feel their efforts go unnoticed and unappreciated, even as they are giving up normal childhoods and teen lives. “They are providing an invaluable service to their families and to society. Just say thank you,” she advised. And then help them find the tools they need to succeed both at home and at school.
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