The surprising story of youth who provide care for their families
Do you remember the first time you provided care for a loved one?
The first time you realized that somebody is relying completely on you to provide for their daily needs. Knowing that on your shoulders was the responsibility of bathing, dressing, helping out of bed, toileting and feeding your loved one not to forget shopping, keeping house, preparing meals and attending appointments.
Caregiving is a beautiful, but very heavy role to carry.
Family caregivers are often pictured as adults caring for parents/loved ones, aged spouses caring for each other and parents caring for children. But there is a hidden group of caregivers that are often missed.
The American Association of Caregiving Youth estimates there are over 1.4 million child caregivers between the age of eight and 18 years old.1 These children, who are still in need of care themselves, are shouldering the load of caring for a loved one often without support and necessary resources.
The Face of Youth Caregivers
Jonathan Gutierrez is a 15-year-old boy who appears to be a typical teenager. He talks about his love for football, how his teachers don’t understand him and how he is trying to find a place where he can “just be me.”
But what most of his friends and teachers don’t know is that he is also the primary caregiver for his mother who has Multiple Sclerosis, his younger brother who has a cranial disorder, and his grandmother who has Alzheimer’s disease. Besides taking out the trash and cleaning his room, his family responsibilities include helping his mother to the bathroom, assisting her with showers and into bed, helping his grandma with her meds and preparing meals for the whole family.
Jonathan reports feeling alone and that his teachers and friends “don’t understand what I am dealing with.” Unfortunately, Jonathan’s situation is not rare. For every 100 households that have a child between the ages of eight and 18 years old, three will include a child caregiver, of which:
- 31% are 8 to 11 years old.
- 38% are 12 to 15 years old.
- 31% are 16 to 18 years old.
Child caregivers involve equal numbers of both boys and girls. The disparity arises in that child caregivers tend to be in households with lower incomes and are more likely to be in a single parent home.
These children are silently caring for close family members. Over 70% are providing daily care for a parent or grandparent with a physical or mental illness, disability, frailty associated with aging or substance misuse.
A Day in The Life of a Youth Caregiver
As an adult you may have the resources to combat the causes of caregiver burnout. Maybe you can take a leave of absence to care for a loved one, ask family members for support, or connect with peers who share your same struggles. Youth caregivers often feel they don’t have any outside support.
Before getting ready and going to school a child may be helping with bathing, dressing, toileting and feeding an adult family member. After school, instead of hanging out with friends or working on homework, the same child caregiver could be doing household shopping, cleaning and meal preparations. The child caregiver could be helping their loved ones with doctor’s appointments, managing medications and even assisting with wound care.
The daily non-stop routine of caring for a loved one is draining. But these are children who are still developing emotionally and physically, carrying a load that often brings grown adults to tears. Their peers are worried about prom dates, college admissions, the meaning of life and keeping up with friends. Caregiving youth carry the same worries but are often overshadowed by heavy thoughts of:
“Did she remember to take her medications?”
“When is her next doctor’s appointment?”
“Will Mom still be alive when I get home?”
“If something happens to her, it will be all my fault.”
For many youth caregivers, they must carry this burden alone. There is a sense of reluctance to talk to friends who won’t understand, fear to talk to adults because it might result in the parent being declared unfit and the family being split up, and worry about missing days of school and getting behind on schoolwork. All the while knowing that they may lose the one person that they love the most.
How Being a Caregiver Affects Youth
Being a caregiver as a child or teen has a permanent psychological impact on the child, with both positive and negative results.2 A child who takes on the adult role of caregiving will often behave more like and adult than is healthy. Instead of progressing through the normal childhood stages or playing, misbehaving and learning from mistakes the child is dealing with life and death responsibilities. These responsibilities can cause feelings of fear, stress and even anger which then triggers feelings of guilt and remorse.
Many families feel they have no choice but to depend on the child due to limited finances and the child knows there is no other option for care. These caregiving responsibilities will often interfere with school work. This can lead to a youth dropping out of high school and starting work early with limited education while continuing their caregiving responsibilities orr not being able to pursue the regular course of getting a first job.
Youth caregivers continue to remain hidden in the general population. Families are reluctant to reveal to the public the depth of need in their family. A sick parent is often embarrassed to tell a school teacher that they have medical problems.
Children carry this same fear and shame. They don’t reach out because they are afraid of the response, that others will say they should be taken away from their parent, or for the simple reason that illness makes other people uncomfortable.
Who Helps the Youth Caregiver
This secrecy leaves the family and the child caregiver at a tremendous risk for anxiety, depression and feelings of isolation. The child may have no idea who to reach out to and what help is available. But even when they reach out that help is limited.
Connie Siskowski, founder of the Caregiving Youth Project and a former child caregiver herself, says “These children suffer silently behind closed doors…They don’t have the help and the support and the recognition that they need…People think that there are social services available for this population and there’s really not.”
The Caregiving Youth Project provides special classes that teach skills on how to cope with stress and anger, how to manage finances and set goals. There are occasional field trips and overnight camps to offer the caregiving youth opportunities to interact with other youth who are in similar situations. There are home-care demonstrations and workshops. The facilitators work with the teachers to make them more aware of the child’s situation and how this impacts their academic performance.3
But these children need more tangible support. Attendance at a school program can address the education needs and social support for the youth. But what about the daily care burden the child carries? When does this child get a break from caring? An opportunity to sleep through the night without checking on a loved one? Can they go out for an evening if their loved one depends on them for medications, bathing, dressing and getting into bed?
Home care provided by a professional agency can be the answer. Having a care aide in the home to take care of the physical and companionship needs of the child’s loved one gives the child a much-needed and well-deserved break.
But with the support of the community and agencies around them, these brave caregivers have a chance to successfully navigate the challenges of being a caregiver from a young age. Siskowski reminds us that being a child caregiver can have a positive impact, when a child has a good experience they are more likely to go into healthcare. The traits every caregiver needs include resiliency and maturity, and these children can become adept problem solvers.
Jonathan Gutierrez is one of the few kids who is getting a chance to be properly supported through his journey as a caregiving youth. Beth Brown, the President and Owner of Home Care Assistance of Palm Beach, has decided to donate monthly home care services for his family over the course of the next year. Beth shared that, “After learning about Jonathan’s story, we were immediately drawn to help in whatever way we could. Being a mother of three children, Jonathan’s story really hit home for me. We hope that this donation will not only help relieve some of the burden Jonathan faces in his role as a caregiver so that he can focus on his academics, football and enjoy being a teenager, but will also help shed light on the larger issues surrounding youth caregiving.”
Jonathan and his family get a chance to thrive through a difficult situation. Jonathan’s compassionate heart and love for his family is impossible to hide; he says “I don’t feel sad about this (being a youth caregiver), I feel like it is a good thing to do.”
Together with home care support, child caregivers can head out into the world knowing how to be responsible and what is the good thing to do. To learn more about how you can help support and bring awareness to the issues surrounding youth caregiving, please visit the Caregiving Youth Project at www.cyppb.org.
Watch this segment from The Doctors to hear more about Jonathan’s story and see his reaction to the news that his family would be receiving care: https://www.thedoctorstv.com/videos/meet-teen-who-takes-care-his-mom-ms.