Millions of American Kids Are Caregivers Now: ‘The Hardest Part Is That I’m Only 17’

Millions of American Kids Are Caregivers Now: ‘The Hardest Part Is That I’m Only 17’

LAKE WORTH, Fla.—Leo Remis goes to high school, plays videogames, and helps take care of his disabled mom.

Three afternoons a week, he flexes his mom’s legs and arms to keep muscles from deteriorating and blood clots from forming. He does about 20 repetitions of each exercise. When her hands shake, he helps her eat and brushes her teeth.

“It is my normal,” says Leo, a tall, lanky 15-year-old high-school freshman.

There are an estimated 5.4 million children under the age of 18 providing care to parents, grandparents or siblings with chronic medical conditions or functional decline, up from about 1.3 million nearly 20 years ago, according to two reports from the National Alliance for Caregiving and others.

These middle-schoolers and high-schoolers help with feeding and dressing, and take over cooking and cleaning for family members who have cancer, debilitating diseases and dementia. Some parents have been in accidents or injured in war.

The number of child caregivers is growing because families can’t afford or find in-home care, say researchers in the field. An aging population, increase in chronic diseases and shortened hospital stays in many cases results in people with complex medical needs being cared for at home by family members, including children.

More than 70% of young caregivers are caring for a parent or grandparent, according to a caregiving report. Many miss school, feel more isolated and worry about the future. Juggling homework with cooking and giving injections can be overwhelming and lead to anxiety.

“Sometimes, I just fall asleep in class,” wrote one 12-year-old Florida girl in a letter, describing what it’s like living alone with her dad, who has kidney disease, and being up with him when he gets sick.

In Florida, one of the few states to track these children, school-based surveys show that as many as one-fourth of middle-school students and 16% of high-schoolers are involved in caregiving.

In Rhode Island, caregiving youth were 15% more likely to experience ongoing sadness for two or more weeks compared with peers who weren’t, according to a report summarizing the state’s school-based survey.

A growing need

When parents work, children take over care of grandparents who have dementia or siblings with cerebral palsy. They share bedrooms with an aging relative to help them get to the bathroom during the night.

“People don’t realize what all these kids are doing,” says Connie Siskowski, founder of the American Association of Caregiving Youth in Boca Raton, Fla., which screens middle-school students to see if they are caregivers.

The association holds overnight camps to give kids in Palm Beach County a break from caregiving. It provides tutors and mentors and Zoom activities, like “Jeopardy” games, for kids who can’t leave the house. Many kids are referred to the organization by school counselors after missing class or coming in late because of caregiving responsibilities.

Veterans’ groups and disease-specific organizations for Lou Gehrig’s disease and cancer, also have programs for caregiving youth.

Taking a toll

Many of these kids learn skills, like managing bills and making family meals, and tend to be empathetic.

But there is a toll, too, say researchers. Caregiving kids often have a disproportionate sense of responsibility for the well-being of another person and miss out on socializing with friends.

“The hardest part is that I’m only 17 and I feel like I have a whole other person I’m responsible for in life,” says Arkeria Prophet, a high-school senior in Riviera Beach, Fla.

Her 9-year-old sister, A’niyah, has development disabilities. She can’t walk, crawl or talk. When A’niyah is sick and can’t attend school, Arkeria stays home with her, feeding, bathing and dressing her. That way her mom, who has already used up her sick pay, can go to work in the school cafeteria.

“If I’m not at my job, I don’t get paid,” says their mom, Caprida Sirmans, a single mother of four. After graduation, Arkeria, an honor roll student, plans to go to college and study occupational therapy.

The Golden boys, 14-year-old triplets, take turns cooking, cleaning and doing laundry for their mom, who spends most of her day in a bed in the family living room in Lake Worth, Fla.

“They change my sheets and bring me plates of food,” says their mom, Nadelle.

Nadelle says she had spinal surgery in 2020 to remove bone spurs on her back and is only able to walk about 10 steps with a walker. She also has diabetes.

Before going to school, the boys, Matthew, Mark and Luke, fill her small cooler with ice, water and tea. They make sure their mom has granola bars and fruit.

When they get home, they help make dinner, while their dad is still at work. Luke gives her weekly injections for her diabetes, monthly injections of B-12 and organizes her 21 medications into a weekly reminder case.

“She has a lot of pills and my job is to put them into the case,” he says.

Leo’s responsibilities

Leo’s mom, Jessica, or Jess, Remis was injured in a car accident nearly 20 years ago. Over time, scar tissue developed from disc surgery and affected her mobility. She initially was able to walk with a cane and then a walker before losing all ability to walk. Her hands shake, she says, due to her medication.

“It was scary,” says Leo, who was in middle school at the time and couldn’t understand why his mom could no longer walk.

After insurance coverage for physical therapy ended, the family took over, first Leo’s older brother, and then his sister, Phoebe, and now Leo. Their dad, Rolando Remis, gets Jess out of bed and dressed before work.

In addition to physical tasks, Leo checks with his mom after school to see if any bills need to be paid. He uses her smartphone to pay them, under her guidance. She can’t do that because her hands are unsteady.

“I’m proud that he stepped up but I’m sad because he has to,” says Jess, 51, who used to work in the state’s revenue department.

Leo’s sister, Phoebe, 19, wishes he got out with friends more. “He doesn’t socialize,” she says.

He says he doesn’t feel comfortable leaving his mom alone. He does belong to an after-school club that meets on Thursday to watch anime and eat ramen.

He also met other kids through the American Association of Caregiving Youth, which he heard about at his middle school, and went on an overnight camp with them. The association paired him up with a mentor, who takes Leo to the gym and comes over to talk and watch shows. His dad says the outings give Leo an opportunity to be a kid and see that he isn’t the only child caring for a family member.

Leo wants to become a physical therapist.

“My greatest hope is that my mom can walk again,” he says.

Write to Clare Ansberry at [email protected]