When my mother experienced a botched spinal surgery 25 years ago, she was discharged from the hospital to her 11-year-old child waiting at home. Me.
After weeks in a rehabilitation facility, she was sent home in a neck brace and with a prescription for pain medication. She could no longer drive, and her long recovery prohibited her return to work as a registered nurse. When she was discharged, no one asked who would be living with her at home. She could not raise her arms above her head, yet no one asked who would feed, bathe or dress her. There was no one else in our family home but me. Ferrell, my 19-year-old brother, was away at college, and my parents divorced in my early childhood; my father lived thousands of miles away in Germany.
The blessed hindsight of 25 years allows me to reflect upon the absurdity of it all. Why did no one ask if there was a responsible adult living in the home, someone to look after the disabled woman and her minor-age child? Did they truly expect that a woman who could barely stand unassisted would resume her normal household duties of cooking, cleaning and looking after me?
There were no social workers assigned to her or home health aides visiting our home. The intimate tasks of bathing and dressing my mother fell to me. The administration of her numerous medications? I became well-versed in the complex drug names of her pill bottles, knowing exactly which medication to reach for at the right time. Over the coming years, my mother had a number of attempted corrective surgeries – to no avail – and I held the responsibility of her wound care after each. I was a child who still played with Barbie dolls and acted out the game of “house” with her cousins. Yet, there I was, the caretaker of a real house at age 11.
I wish that I could say that my experience is a relic of the distant past. According to the AARP and National Alliance for Caregiving, 5.4 million US children under the age of 18 have caregiving responsibilities Youth caregivers typically provide care for their ill or disabled parent or grandparent, but they can provide care for anyone in their world: siblings, extended family members and friends.
Despite our growing awareness of the needs of children and adolescents with caregiving responsibilities, we have done little on a national scale to support them. Perhaps our collective inaction is not surprising. The 63 million adults with caregiving roles in the US have a precarious existence. Adult caregivers face the One Big Beautiful Bill Act’s cuts to Medicaid and Medicare, other political uncertainty, and lack of widespread respite care. Child caregivers, who are far less visible and less able to advocate for themselves – will likely suffer exacerbated effects.
Neo, a 16-year-old Bayside, New York resident, knows first-hand about these challenges. He started providing care for his father at age 12 after his father suffered a debilitating stroke. Before his father had a feeding tube, Neo would spoonfeed his father’s meals and dress and bathe him, which Neo says was a “nightmare to do”. In fact, Neo says that his caregiving tasks were so extensive that his life “doesn’t feel like a childhood” but rather “I’m carrying a lot of responsibilities. It feels like I’m basically an adult.”
It doesn’t have to be that way. In England, schools and charities have worked collaboratively to create the Young Carer Challenge, a program that trains elementary and secondary school staff (called a “Young Carer Champion”) to identify and support youth caregivers. For teens entering college, their standard application form asks them to indicate if they are a caregiver, facilitating formal support services such as mental health counseling upon matriculation.
The British social scientist Saul Becker, a global expert on youth caregiving, believes that youth caregiving exists on a continuum. Most children have some caregiving role at some time, but for a small percentage of them, it becomes a regular part of life. Youth caregiving extends beyond mere household chores or babysitting, and it is rarely a conscious decision parents or guardians make for their children. Rather, illness, disability, aging, and addiction in families – and increasing caregiving needs – transition children from caring about someone to caring for someone.
Greater amounts of caregiving are often associated with advanced levels of negative health outcomes, such as depression, anxiety, self-harm and post-traumatic stress disorder. In school, youth caregivers have been shown to experience bullying, diminished academic performance and chronic absenteeism at higher rates compared to their peers in non-caregiving roles.
In my family, my brother faced some of these repercussions. He came home from college during the weekend of our mother’s surgery. He anticipated going back to class on Monday morning. Because the surgery was performed incorrectly, he realized he would have to drop out of college to care for us. He became what we researchers now call a young adult caregiver, taking on a full-time job to pay for our household bills.
Now 45 and finally a college graduate, he reflects that his young caregiving experience strengthened his patience, resilience, and problem-solving abilities. However, he added: “The trauma experienced during that period also required deep emotional, psychological, and social sacrifices that I continue to navigate to this day.”
This is not the first time our country has depended on young people to fill in the missing gaps in our care infrastructure. During slavery, Black enslaved women, including adolescent girls, served as wet nurses for the infants of their white slave mistresses. A perversion of care, Black nursing women and girls depleted their own milk supply in service to their masters, leaving their own children without nourishment.
To combat the terrifying rates of infant mortality of the early 1900s, the Little Mothers’ Leagues in New York City trained European immigrant young girls to provide care for their infant siblings while their parents worked. The Little Mothers’ Leagues were seen as a great success in resolving the problem of much-needed childcare in an industrial society that required the labor of poor, newly arrived immigrants. Yet no one questioned why impoverished children were seen as an acceptable solution to an insufficient care infrastructure.
Today, domestic care work continues to be largely performed by Black and brown women for low wages and with precarious worker protections. During the COVID-19 pandemic, Black and brown girls were found to be performing greater amounts of caregiving in the home, compared to other racial groups.
Youth caregivers – Black and brown girls especially – are living at the bottom of the societal food chain. They provide unpaid healthcare services in the home as “little nurses,” if you will, counterbalancing the government’s failure to safeguard the nation’s sick and disabled.
That trend has only worsened under Donald Trump’s second term as president. Eleven million family caregivers rely on Medicaid to pay them for supporting their ill or disabled family members, and the One Big Beautiful Bill Act will cut Medicaid funding with some states proposing cuts early as the next fiscal year. Because of its coverage under Medicaid, the Home and Community-Based Health Services (HCBS) program is at risk for deep funding cuts, which family caregivers use to receive stipends for meal deliveries, home health care, and accessible home adaptations for older and disabled people.
Diminished support for the adult caregiver in the home will mean youth caregivers fill in the gap. Adding insult to injury, the recent record-long government shutdown in 2025 withheld food support and child care subsidies from these same families.
Neo believes that the US is “blind to caregiving”. He is proud to speak about his youth caregiving experience to others. But he finds that people “always have this confused look […] and they don’t know what to say. They don’t know how to deal with it”.
The traumatic experience of my childhood – and Neo’s – could have been averted if a trained professional – a guidance counselor, school nurse or a social worker – had stepped in. They could have identified us as a family caregiver in need of support. But we can’t support what we do not see, acknowledge or recognize. When we rebuild our nation’s care infrastructure to include children as caregivers, then their lives are no longer in the shadows. We must begin to reckon with what it means when our children are forced to become America’s nurses.
Feylyn Lewis, PhD, is an international social scientist and advocate for children with family caregiving responsibilities. She’s currently writing about America’s care infrastructure as a New America Foundation Better Life Lab Story Fellow