There are approximately 1.3 million caregivers in the U.S. between the ages of 8-18, according to the American Association of Caregiving Youth (AACY), a national, nonprofit organization based in Boca Raton, Florida. The AACY combines community resources with healthcare and education systems to help support these young caregivers.
Learn more about these caregiving children and read the AACY’s suggestions for helping youth caregivers and families find a balance.
When David Florez was a sophomore in high school, he had to grow up fast. That’s when he became the primary caregiver for his grandmother, who was diagnosed with terminal abdominal cancer.
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Every morning, Florez, now 18, helps his 68-year-old grandma from her bed to the bathroom in the townhome he shares with his mother and grandparents. He helps her get dressed and steadies her on any stairs. Florez also cooks, cleans and serves as his Spanish-speaking grandma’s interpreter.
Despite those responsibilities, Florez has continued to attend high school, where most of his classmates and teachers remained unaware of his additional responsibilities.
“Doing homework came after taking care of grandma at night,” says Florez, who kept his family situation mostly to himself. “Most people at school have no clue that a lot of students could be going home to a family member who is dying.”
As caregiving duties for his grandmother increased, Florez had to quit the swim team to spend more time at home. Meanwhile, Florez didn’t get much sleep. He worried at night about his grandmother and school work kept him up.
Of the approximately 1.3 million caregivers in the U.S. between the ages of 8-18, around 22% of those surveyed for the report, “The Silent Epidemic,” had to quit school to take care of a family member. That’s why one of AACY’s goals is to help middle school and high school children and youth remain in school despite family caregiving duties.
The organization partners with the School District of Palm Beach County, setting up information tables monthly in local middle and high schools. AACY also holds life skills classes at schools. Middle school teachers, beginning in sixth grade, have students complete a six-question survey that asks whether the child is helping someone with a medical condition.
AACY then reaches out to the child and the child’s family to offer support if needed. “We focus our resources on kids who typically spend at least 20 hours a week on caregiving,” says Connie Siskowski, RN, Ph.D. and President of the American Association of Caregiving Youth.
When kids first enter AACY’s program, they may be angry and frustrated, tasked with caregiving while their peers are dating, joining school clubs or playing sports. Many assume that they are the only child in school dealing with life-and-death matters that rarely leave their thoughts.
One boy discovered his grandmother, sprawled in the backyard, where she’d fallen. A 6th-grade girl started crying at school because she’d forgotten to do something crucial with her grandmother’s oxygen tank that morning. These kinds of worries are part of a child or youth caregiver’s daily life.
“Because of the stress of caregiving, these children lose a piece of their childhood,” says Siskowski. “They don’t have normal time to play, have fun, be carefree and be a kid.”
One day, Florez came upon AACY’s “Lunch and Learn” information table in the high school cafeteria. After getting involved with AACY’s programs, Florez learned there are plenty of teen caregivers out there, some with even greater responsibilities.
“By the time some of these students get into our program, they’ve already been caregivers for many years,” says Kim Fort, family support specialist with AACY. Yet many have never spoken about their caregiver role to anyone outside the family. Kids may get referred to AACY through school counselors or attendance clerks if they’re missing school to care for a loved one.
In AACY’s life skills group, students learn things such as:
AACY programs also focus on college opportunities, financial aid and how to handle the transition period after a student leaves home for college.
AACY paired Florez with a mentor, who listened to Florez’s concerns and encouraged him to take time for himself. This fall, Florez will leave for Stanford University in California where he received a full, four-year scholarship. When he leaves, Florez’s family will feel the impact, since his mother’s caregiving duties will keep her from earning as much income.
“Before AACY, it was definitely more stressful than it had to be,” says Florez of his attempts to balance caregiving with school and two part-time jobs. “It took a lot of the stress off to not be alone.”
The AACY has a few suggestions that can help youth caregivers and families find a balance while caregiving:
You can contact AACY at: (561) 391-7401 or (800) 508-9618.
Do you have any other tips for finding a balance for caregiving children? We’d like to hear your suggestions in the comments below.