Catch Them Before They Fall: Recognizing Our Young Caregivers Before They Slip Through the Cracks

A tired mother stands before the kitchen stove, combining ingredients into a Dutch oven for dinner, pausing briefly to absent-mindedly massage the ever present knot in her left shoulder. Standing across from her, Emily (8 years old) counts the number of fresh eggs in a basket taken from the chicken coop out loud, picking each one up and presenting it to a young boy, Cuyler, who lay in a supportive stroller, grinning as his sister shows him the different sizes. The young girl breaks into a spontaneous little dance, making the little boy cackle in delight. Riley (12 years old) enters the kitchen upon hearing the commotion, leans into the stroller, and blows a raspberry onto the little boy's cheek. More deep belly laughs ensue. The mother turns from the stove and smiles, thankful to have these few minutes without worry so that she can focus on decompressing and cooking. The peace is short-lived, however, as suddenly the belly laughs turn to coughing. Within seconds, the sounds of her son choking have her spinning around to run to his aid. 

Much to her relief, his sisters are already there, Riley holding up his head and patting his back so that he doesn't aspirate while Emily positions a dish towel strategically under his face, catching the spit up as their brother proceeds to push mucus out of his body. Heart racing, the mother lets out a sigh of relief and thanks both girls for acting so quickly.

Cuyler has an ultra-rare brain disorder that renders him unable to walk on his own or talk. He is also my son. My two daughters, Riley and Emily, belong to a unique population of caregiving youth in the United States that assist in caring for another family member. They are also known as "hidden helpers."

Former First Lady and Pioneer in Family Caregiver Mental Health Advocacy, Rosalynn Carter, once said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."  Mrs. Carter became a caregiver herself before the age of 13, caring first for her own father who was diagnosed with cancer--then again following his death as her grandfather moved into the home to receive care from her mother. In her life's work, she addresses the plight of the young caregiver and presents a challenge to the American public to carry on her legacy of advocating for their needs nationwide.

According to the American Association of Caregiving Youth, there are currently 5.4 million caregiving youth in the United States. Young, unpaid family caregivers play a critical role within their families in providing in-home care, causing a ripple effect within the communities in which they live and positively impacting state healthcare at a systemic level; however, they are rewarded very little in return for their contributions to the caring community.

The Bloomberg School of Public Health at Johns Hopkins University conducted a recent study that estimates that millions of young Americans between the ages of 15 and 22 are providing essential care to adults, significantly impacting those young people’s educational opportunities and achievements.  The study, led by Dr. Katherine Miller, Assistant Professor in Health Policy and Management, also highlights that both youth and young adult caregivers face educational disadvantages compared to their non-caregiving peers. They are less likely to be enrolled in school and spend significantly less time on educational activities, which may have long-term implications for their educational attainment and economic stability. 

They are slipping through the cracks right before our eyes–and it is up to us to catch them before they fall. How can we best acknowledge the needs of this unique population and help the late Mrs. Carter carry out her legacy?

Getting involved and taking action is critical now, starting at the community level, on finding creative, collaborative means to provide young family caregivers support within the school systems. 

• Provide safe spaces/outlets for caregiving youth in which they can relieve stress and have peer-to-peer connections such as young caregivers' meet and greet events, arts and crafts,  and creative writing sessions. This need can be met via the local Arts Council, the public library, or local Area Agency on Aging offices as well as the County Extension Offices that are able to offer educational and supportive workshops (i.e. how to create a caregiver profile, CPR & First Aid class locations and financial aid assistance).

• Incorporate caregiving related education, supports, and resources into mental health programming curriculum within schools will aid in giving a voice to young family caregivers. Those who identify as caregivers will feel better seen, supported, and heard--better preparing our future generations of caregivers to make an impact within our communities and healthcare systems.

• Develop caregiving scholarships and financial assistance that can be available for caregiving youth wanting to continue their education. The Rosalynn Carter Institute for Caregivers, for example, provides the John & Betty Pope Caregivers Scholarship to students attending school at Georgia Southwestern State University in Americus, GA. They are the only institution under the USG system to provide this unique scholarship opportunity for students who wish to continue their education but are also entering school as caregivers themselves–or will be entering a field of study that involves caregiving. 

  
  

5.4 million of our nation's youth are caring for someone they love today. Riley and Emily help me in caring for their brother not because they are asked to do so...but because they want him to have a better life just as much as I do. And they deserve every bit of support they can get for the legacy of caring--the future of caregiving--they embody today.