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Every seizure began the same way. My mom would be talking, then suddenly stop mid-sentence. Her eyes would fix into a blank stare, and I knew what was coming. As her body slowly gave way, time seemed to slow down while my mind raced.
Without hesitation, I would catch her before she hit the ground, lower her safely and protect her head. Around us, adults would panic. From the ages of 8 to 23, I had to take control, timing the seizure, directing frightened strangers and protecting my mom from injury.
A minute or two later, the seizure would end. My mom would open her eyes, confused and disoriented, asking where she was and what had happened. While strangers crowded around with questions she couldn’t answer, I became her voice, calmly explaining the situation and helping her regain her bearings.
This wasn’t a one-time emergency. It happened nearly every day, sometimes multiple times a day. That is what it means to be a youth caregiver for a parent with epilepsy.
My story is far from unique. An estimated 5.4 million children and adolescents in the United States provide care for a family member living with aging-related conditions, chronic illness or disability.
They assist with daily tasks such as bathing, meals and medication management. They are translators and supervisors at medical visits, filling out paperwork and providing emotional support. This is all while trying to keep up with school, extracurricular activities and often jobs of their own.
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For me, the most challenging aspect of caregiving was the social and emotional burden it placed on my childhood. Decisions that seemed simple for other children and adolescents ― like attending after-school activities or going to a friend’s house ― were never simple choices for me. Every hour my mom was left alone carried the possibility of a potential seizure injury.
Throughout my childhood and teenage years, I had limited opportunities to participate in extracurricular activities, after-school tutoring, gatherings with friends, and the other experiences that shaped my peers’ academic and social lives.
The emotional weight of caregiving was also significant. From a young age, I became responsible for recognizing seizures, managing medications, noting changes in my mom’s condition, responding during emergencies and communicating updates to her physicians, all without any formal training.
Carrying the responsibility of managing an adult’s medical needs while still being a child myself created significant stress. Even when I tried to take some rare time away from the home, I worried that something could happen in my absence, making it difficult to fully enjoy the moments when I tried to be a normal child.
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Yet despite these enormous responsibilities, youth caregivers remain largely invisible in public policy. In California where we live, the existing caregiver support programs, including California’s Family Caregiver Services Program, provide access to respite care, training and financial assistance only to adults 18 and older, excluding the youth caregivers who are often providing daily care. They receive no credit and virtually no support.
As Medicaid funding faces further cuts, states like Colorado are narrowing or reconsidering programs that once recognized and compensated family caregiving as costs rise. In Ohio last month, a proposed ban of Medicaid payments to family caregivers was thankfully removed from an anti-fraud bill.
Opponents often cite Medicaid fraud to justify cutting support, but the data tells a different story. The Department of Health and Human Services (HHS) reports that between 2022-2025, of the about 6% of Medicaid payments that were classified as improper, more than three-quarters resulted from missing documentation or administrative errors, not fraud.
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Family caregivers are already the backbone of long-term care in America, allowing millions of older adults and people with disabilities to remain safely in their homes. Between 2011 and 2022, the number of family caregivers assisting older adults actually increased, from 18.2 million to 24.1 million.
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A recent Pew Research Center study found that the burden of caregiving falls disproportionately on lower-income families, of which 39% provide care for a parent, spouse, or partner 65 or over. They are much more likely to be caregivers than middle-income (23%) or upper-income (16%) adults.
As the baby boomer generation ages, the caregiver support ratio (the number of adults aged 45-64 per person over 80) is projected to fall from 7.0 in 2010 to 2.9 by 2050. This will shift caregiving demands increasingly onto younger family members.
Research consistently shows that family caregivers improve health outcomes while reducing healthcare costs. Their involvement in hospital discharge planning is associated with fewer readmissions, shorter rehospitalizations and lower post-discharge spending.
Critics argue that schools cannot afford to identify or support youth caregivers. But failing to recognize them is already costing us. A 2024 study published in Demography found that youth caregivers are eight percentage points less likely to be enrolled in school than their peers. Even when enrolled, they spend 15.5% less time on educational activities. This is equivalent to missing approximately 11% of a standard school day due to caregiving responsibilities.
For me, after-school activities were rarely an option because I needed to get home right away to reduce the risk of my mom having an unwitnessed seizure injury. Once I got home from school, I completed my homework as quickly as possible from the living room or kitchen so I could keep an eye on my mom. Studying often meant dividing my attention between schoolwork and caregiving, making it difficult to fully concentrate.
A classic 2006 study from the Bill & Melinda Gates Foundation found that 22% of the surveyed young adults who left high school cited having to care for a family member as the reason they dropped out. When schools overlook youth caregivers, students don’t stop caregiving. They simply fall behind, sacrifice opportunities and too often leave school altogether.
California has an opportunity to change that. CA Assembly Bill 2324 would recognize youth caregivers in grades 9-12 who support family members with chronic illness, disability or advanced age.
It would direct the CA Department of Education to integrate youth caregiving into the curriculum, educating schools about the challenges youth caregivers face and recognizing family caregiving as work-based learning that may qualify for Work Experience Education credit.
This bill asks California to recognize the realities many students already face and provide support before caregiving becomes a barrier to their education.
After years of advocating for my mom’s epilepsy care, she underwent resective brain surgery in 2022. She has been free of convulsive seizures since her surgery and has regained some of the independence epilepsy once stole from her. Simple moments, like taking a walk around the neighborhood without fear of a seizure, are now possible.
Today, I am 27 and a fourth-year medical student. My caregiving responsibilities did not disappear, but they did evolve. I now serve primarily in a supportive role. My younger sisters provide my mom ― now 56 ― with day-to-day care while balancing school, work and their own lives.
No youth caregiver should have to navigate these responsibilities alone, or feel forced to choose between caring for a loved one and their own education, friendships or well-being.
I want my sisters, and all future generations of youth caregivers to have their experiences recognized and validated, as well as having access to mental health support, academic flexibility and community resources that acknowledge the unique challenges they face. Caregiving should be recognized as meaningful work through academic credit, service-learning opportunities or financial compensation.
My own story illustrates that youth caregiving can cultivate resilience, advocacy, crisis management, problem-solving, communication and leadership qualities. These skills are transferable and deserve recognition.
By investing in youth caregivers, we’re telling them we see their work and that their work matters. With bills like AB 2324, we can help them pursue their futures without sacrificing their education or well-being.
Karina Morales is a Latina and a fourth-year medical student and Public Voices Fellow on Public Health with The OpEd Project and Blue Shield California Foundation.
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