Young caregivers ‘exist in the shadows,’ offer crucial help

By TOM MURPHY
AP Health Writer

PLANO, Texas (AP) — Ronan Kotiya leans over his father, fingers wrapped around a plastic tube he’s about to slide from a tracheostomy hole in dad’s neck.

“3, 2, 1, go,” the 11-year-old says as he removes the tube. His mom slips a padded neck brace on her husband and lifts him into a sitting position on their bed.

Ronan’s 9-year-old brother, Keaton, waits nearby, ready to connect their dad, Rupesh Kotiya, to a portable ventilator.

“Ronan, do you want to suction daddy’s mouth and then get ready to go?” Siobhan Pandya asks after her son steers dad’s power wheelchair into the living room of the family’s Plano, Texas, home.

So begins another weekend for the brothers — two Harry Potter fans with mouths full of braces, a knack for building with Legos and some heavy caregiving responsibilities.

Their 46-year-old father has Lou Gehrig’s disease, a fatal illness that has taken his ability to speak and walk. A ventilator helps him breathe. He uses eye-tracking software to communicate through a tablet.

As many as 10 million children in the U.S. may provide some form of care at home, according to researcher Melinda Kavanaugh. Some kids are the only caregivers patients have, while others fill in when visiting nurses or other help is not available.

These children help cancer patients, military veterans, grandparents with heart disease or autistic siblings. Their work frequently goes unnoticed outside the home.

“They exist in the shadows,” said Kavanaugh, an associate professor of social work at the University of Wisconsin-Milwaukee.

Kavanaugh and other researchers say the number of young caregivers is growing, and they need support. Caregiving is a task that children like Ronan and Keaton take seriously and something that their mom hopes will shape them into empathetic, strong young men.

But getting there first involves a struggle to balance being a kid with living in a very grown-up world.

The children spent a recent sunny Saturday afternoon at Texas Neurology in Dallas learning more about helping people with Lou Gehrig’s disease, or amyotrophic lateral sclerosis. The illness destroys nerve cells in the brain and spinal cord that control muscle movement.

Kavanaugh lined up several specialists to teach about communication, food preparation and the devices patients need. But one of her main goals for her YCare program was just to give the kids a chance to meet.

Loneliness is a problem, one that grew worse during the COVID-19 pandemic.

“A 10-year-old at school is not going to talk about toileting or bathing their parent, but they are going to talk about it here,” Kavanaugh said.

Each of the seven children attending — ranging in age from 8 to 12 — cares for a parent or grandparent with ALS.

Doctors diagnosed Rupesh Kotiya with ALS in October 2014, a month before his boys turned 4 and 2. Ronan and Keaton have no memories of their dad without the illness, and they know he’s getting worse.

Keaton says it is getting harder for him to blink, a key way he communicates. The boy also remembers a recent night when Rupesh slept for over 12 hours and took a long nap the next afternoon.

“I’m like, should I be worried?” he said.

The boys started pitching in with care a few years ago, first by wiping away their dad’s tears or propping up his head during car rides.

Then they began helping Pandya move their father in and out of bed or onto the toilet.

They also put on his socks and shoes, help change his shorts and crush medicines.

Pandya, a senior director with the skin care and cosmetics company Mary Kay, has daytime and evening caregivers for her husband during the week. But she has no paid assistance overnight or on the weekends.

Pandya tries to balance her boys’ caregiving with activities that offer some normalcy. Keaton takes tennis lessons and coding classes. Ronan plays striker on a youth soccer team.

Play — letting kids be kids — is crucial for development, says therapist Sarah Sutton, who has seen Ronan and Keaton for a few years.

“We play out conflict. We play out resolution. We play out the stories that are going on inside us,” Sutton says.

On weekends, Pandya lets the boys camp out in the family’s living room. It started as a treat early in the pandemic, when they couldn’t go anywhere else.

But there’s an ulterior motive: Having the boys sleep next to their parents’ bedroom makes it easier to summon their help.

They may have to get trash bags and gloves if their dad has an accident during the night.

Before they set up camp on a recent Friday, the boys change into pajamas, and the family settles in the living room to watch the kids’ show “Legends of the Hidden Temple.”

The show ends, and Keaton steers dad back to the bedroom, where Pandya lifts him onto the mattress.

Keaton then uses a long wand to suction saliva pooling in his dad’s mouth.

Pandya finishes getting her husband ready for bed while Ronan and Keaton scamper back to the living room.

There, they sprawl on top of sleeping bags, munching chips and candy as they squeeze in a little more TV before crawling inside to sleep.

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education. The AP is solely responsible for all content.