Contributed by Cristy Kovach Hom
When Jason was 13, his grandmother moved in. She was suffering from dementia and could no longer live alone. Jason awoke every night to take his grandma to the bathroom. When her dementia caused her hysteria, Jason was the only family member who could calm her down.
When Nadine was 12, her sister became paralyzed, and then four years later, her mother had a stroke. Nadine helped her sister to take a bath, get dressed and move in and out of her wheelchair. After her mother’s stroke, she managed her mother’s medication, including her insulin, and focused on cooking healthier meals for her family.
In an instant, Jason and Nadine’s lives changed. They became family caregivers.
In the United States, an estimated 1.4 million children ages 8 – 18 are caring for disabled, injured, ill or aging family members. They administer medications, assist with mobility, and manage household chores. Some provide personal care such as bathing or helping a loved one to the bathroom.
Youth caregivers experience the same challenges and stress as adult family caregivers. Yet, as children and teenagers, they are not emotionally equipped to manage it. This can result in profound sadness and extreme anxiety. It affects their social and academic lives. The Bill and Melinda Gates Foundation Study, the Silent Epidemic, reported that among students who drop out of school for personal reasons, 22% do so to care for a family member. Like adult caregivers, caregiving youth are at increased risk for developing chronic illness themselves.
“I need to make sure my mother gets the right amount of insulin and that she checks her sugar every day.” “I can’t meet after school because I have to stay home with grandma so my Mom can go to work.” “Since my father’s car accident, I’m afraid that my parents can’t afford the bills.” “Can you find my auntie some help? I sit with her every Saturday to make sure she is safe.”
These are the voices of youth caregivers and they are asking for help.
Respite volunteers, neighbors or home health care providers may be the only people who realize that a child has assumed the role of family caregiver. It’s important to validate their caregiving role and, at the same time, offer them support.
Other countries like the United Kingdom and Australia have been helping “young carers” for years. In the United States, they remain a hidden population, isolated and alone, with unique needs and incredible strengths.
The American Association of Caregiving Youth (AACY) is the first and only U.S. organization that identifies, recognizes and supports children who are responsible for the care of their ill, injured, elderly or disabled family members. AACY provides information and resources to youth, families and helping professionals, conducts research and promotes awareness of the issue of youth caregiving. Affiliate programs are now forming across the U.S.
The Association’s local effort, the Caregiving Youth Project, works with middle and high school youth caregivers in Palm Beach County, Florida. It provides in-school skills building and therapeutic groups, out of school educational and recreational (respite) activities, family evaluation home visits, linkage to community resources, an overnight camp, tutoring, mentoring, digital access and assistance with college and scholarship applications. Most importantly, it gives youth caregivers a place to consider their own interests and dreams and it offers them the opportunity to connect with caregiving peers who understand.
“It’s great to know I have people who know I’m a caregiver and can help me. And, I’ve made friends with other caregivers so now I no longer feel alone.”
For more information or to support a youth caregiver, please visit us on the web at www.aacy.org, email firstname.lastname@example.org or call 1-800-725-2512.
Cristy Kovach Hom, LCSW, is the Director of Continuing Care for the American Association of Caregiving Youth®’s Caregiving Youth Project.