When you think of caregiving, you might think of an adult child caring for an aging parent. According to the Pew Research Center, as of 2015, there are 40.4 million unpaid caregivers of adults 65 and older in the United States. The majority of caregivers are adults between the ages of 45 and 64.
However, according to researcher Melinda Kavanaugh, up to ten million children in the United States provide care at home. Some children act as the patients’ only caregivers. Others step in when other support is unavailable.
These children help cancer patients, veterans, grandparents with heart disease, and autistic siblings. Their work often goes unrecognized outside the home.
Ronan and Keaton Kotiya of Plano, Texas, help care for their father. Rupesh Kotiya has ALS, a fatal disease that has taken away his ability to speak and walk. A ventilator allows him to breathe. He communicates using eye-tracking software on a computer blinking to indicate yes or moving his mouth side to side to indicate no.
The boys began assisting with their father’s care a few years ago, first by wiping away their father’s tears and supporting his head during car rides. They then began assisting their mother in getting Rupesh in and out of bed or onto the toilet. She lifts him onto the toilet as they remove his underwear and shorts. They also help him put on his socks and shoes, change his shorts, crush medications, and mix mouthwash with water.
Dara Gordon was eight years old when her mother, an elementary school teacher, was diagnosed with multiple sclerosis. Multiple Sclerosis is a neurological condition that causes significant exhaustion, difficulties using your hands, and progressive vision loss.
Gordon knew her mother’s appointments, medications, and emergency contacts. She had that instilled in her from a very young age and was unaware that she was acting in a way other children weren’t. Gordon had no idea that she was taking on these duties. She carried out those tasks because she loved her mother and believed they were crucial.
Nicklaus Dent, then 13 years old, was his mother’s primary caregiver in 2012. He was in charge of grocery shopping and cooking. He did the cleaning. He did the laundry. As far back as Nickolaus could remember, his mother, Janine Helms, had battled HIV, and in recent years, her health had declined. Nickolaus made sure she took her medications. He sometimes helped her get dressed.
In 2017, my grandmother developed dementia and had to be placed in a nursing home. At the time, I was a senior in high school. Between studying and filling out college applications, I worried about my grandmother. At night, I would lie awake, wondering if she would eventually forget who I was. I wrote a paper about how my grandmother’s dementia diagnosis had affected me for my psychology class that year. It was an assignment that I didn’t know I needed. It was very cathartic for me.
I also felt like I needed to be strong for my mother. I kept my feelings to myself most of the time. Admittedly, there were times that I cried with my mother. It’s heartbreaking to watch the progression of dementia. Looking back at photos of her with me as a child was bittersweet. It is still difficult to look at them, although it has been several years.
In addition, I saw the stress in my mother’s eyes when she had to manage my grandmother’s care. Five years later, I visit her nearly every Sunday at the nursing home. I enjoy seeing her and cherish the time I spend with her. When my mother goes out of town, I check on my grandmother. I want to ensure that she is receiving proper care and let her know that I haven’t forgotten about her.
Caregiving is difficult, but millions of people of all ages are doing it worldwide. As someone who relies on PCAs, I am grateful that their support helps me live an independent life. Caring for people can be very rewarding. Caregivers are an essential part of society, and they are too often forgotten. I believe that caregiving is some of the most important work in the world.
Berger, Danielle. “Help for a ‘Hidden Population’ of Caregiving Kids.” CNN, Cable News Network, 17 May 2012, https://www.cnn.com/2012/05/17/health/cnnheroes-siskowski-youth-caregivers/index.html.
Murphy, Tom. “Young Caregivers ‘Exist in the Shadows’ and Offer Crucial Help.” Los Angeles Times, Los Angeles Times Communications LLC, 31 May 2022, https://www.latimes.com/world-nation/story/2022-05-31/young-caregivers-exist-in-the-shadows.
Stergiopoulos, Erene. “What Happens When a Kid Becomes a Caregiver.” VICE, Vice Media Group LLC , 26 June 2017, https://www.vice.com/en/article/wjqvnw/what-happens-when-a-kid-becomes-a-caregiver.
Stepler, Renee. “5 Facts about Family Caregivers.” Pew Research Center, The Pew Charitable Trusts, 18 Nov. 2015, https://www.pewresearch.org/fact-tank/2015/11/18/5-facts-about-family-caregivers/.