Although it was more than five decades ago, the memories of caring for my grandfather as a pre-teen—giving him medication, even bathing him—are never far from my mind. At that time, words like “abandonment” and “trauma” were not often used to describe childhood experiences. In 1960, no one understood much about caregiving, like the emotional roller coaster rides involved and the toll it could take on grown men and women, let alone a child.
There was no intentional harm, though. It was simply a matter of not knowing. My “Pop” passed away when I was 13, and I eventually left home to become a nurse and grew professionally in my career. However, my experiences of caregiving and missing out on some of my childhood left me less than grounded.
Years later, at the first International Conference on Caregiving in 1998, I learned about the challenges faced by youth caregivers and began to understand the significance of those experiences. I was suddenly aware that I wasn’t the only one who’d had to bear the responsibility of managing an adult’s daily care at such an early age.
Later that summer, I went on a mission trip with teenagers from my church, and I heard about these young people’s anxieties firsthand. One boy’s dad had recently died, and another girl’s father had been diagnosed with pancreatic cancer. Many of the other kids also opened up about their concerns regarding the health of their parents and grandparents.
In 2001, my husband encouraged me to return to school to get my PhD, and I used my doctoral research to investigate the effects of family health situations and caregiving on younger generations. I discovered that there was—for the first time in the U.S.—an unusually high number of middle and high school students who were dealing with these serious issues. The data revealed that there were between 1.3 and 1.4 million caregivers ages 8-18 years old in the U.S., and more than a third of these children were negatively impacted at school. A 2006 study on high school dropouts that supported my findings reported that 22 percent of students who left school did so to take care of a family member.
I had started a nonprofit organization in 1998 to provide volunteer support services to people who were homebound and the adult family members who cared for them. But, once the analysis of my research data was complete, I was compelled to turn my attention to youth caregivers. I thought that supporting them academically and personally and strengthening their families could perhaps ameliorate the sacrifices they were making because of their caregiving responsibilities.
Thus, the Caregiving Youth Project was born in the fall of 2006 at one middle school in Boca Raton, Florida. Since then, our endeavor has grown into The American Association of Caregiving Youth (AACY)—a national resource for children who sacrifice their education, health, well-being and childhood to provide care for family members who are ill, injured, elderly or disabled. AACY’s professional staff facilitate programs in school, out of school and at home, including support groups, classes teaching life skills, in-home visits with social workers, and other resources to ease some of the burden of caregiving and give these children the chance to enjoy childhood.
Adults struggle to balance caregiving duties with work and their personal lives. Can you imagine attempting the same feat as a child or teenager? AACY’s goal is to increase awareness and provide support services for youth caregivers and their families by connecting them with healthcare, education and community resources. With this support, these young caregivers are given the opportunity to connect with their peers, find supportive resources, succeed in school and lead productive adult lives.