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Young caregivers “exist in the shadows” and provide vital help

PLANO, Texas – Ronan Kotiya bends over his father, fingers wrapped around a plastic tube that he is about to push out of a tracheal hole in father’s throat.

“3, 2, 1, go,” says the 11-year-old as he removes the hose. His mother puts a padded neck brace on her husband and lifts him to a sitting position on her bed.

Ronan’s 9-year-old brother, Keaton, is waiting nearby, ready to put their father, Rupesh Kotiya, on a portable ventilator.

“Ronan, do you want to suck daddy in your mouth and then get ready?” Siobhan asks Pandya after her son maneuvers his father’s power wheelchair into the living room of the family’s home in Plano, Texas.

“Thanks buddy, good job,” crackles a robotic voice from a tablet Kotiya is using.

So begins another weekend for the brothers – two Harry Potter fans with braces in their mouths, a knack for building Legos and some heavy housekeeping.

Her 46-year-old father has Lou Gehrig’s disease, a fatal illness that has left him unable to speak and walk. A ventilator helps him breathe. He uses eye-tracking software on the tablet to say things, blinking to say yes or moving his mouth to say no.

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According to researcher Melinda Kavanaugh, up to 10 million children in the US can be cared for at home. Some children are the only caregivers patients have, while others step in when visiting nurses or other support are unavailable.

These children help cancer patients, military veterans, grandparents with heart disease or siblings with autism. They are often too young to drive, and their work often 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. Nursing is a job kids like Ronan and Keaton take seriously, and one that their mother hopes will mold them into sensitive, strong young men.

But getting there first requires a daily struggle of being a kid and living in a very adult world.

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Ronan grabs a handful of toy cars and kneels on the floor of a Texas Neurology clinic in Dallas.

His opponent, a freckled boy named Charlie, is waiting a few yards away, ready to smash up cars. Whoever falls down first loses.

“You’re all savages,” says Evie, a skinny 9-year-old prone to spontaneous dancing.

The children gathered at the clinic on a sunny Saturday afternoon to learn more about the care of people with Lou Gehrig’s disease or Amyotrophic Lateral Sclerosis. These seven children, ages 8 to 12, help care for a parent or grandparent with ALS, a disease that destroys nerve cells in the brain and spinal cord that control muscle movement.

Kavanaugh assembled several specialists to teach her through a program called YCare, which has taken her to several cities. A nutritionist showed the children how to make food of the right consistency so patients wouldn’t choke on it. A respiratory therapist explained the important parts of a device that helps people cough to clear phlegm.

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In a training session, speech therapist Heather Gallas discusses eye-tracking technology that allows patients to spell words and communicate with a tablet.

She holds up a laminated letter board and encourages the kids to try it. Evie silently points to each letter in her name.

Then it’s Keaton’s turn.

SUCTION.

Gallas pauses, “Is that something your father needs badly?”

Keaton nods.

Aside from providing training, one of Kavanaugh’s main goals was to just let the young educators come together. Loneliness is a problem that has been made worse during the COVID-19 pandemic.

“A 10-year-old at school isn’t going to talk about his parents going to the toilet or bathing, but they’re going to talk about it here,” Kavanaugh said.

In the afternoon, the kids exchange email addresses and phone numbers, and the Texas chapter of the ALS Association begins making plans for a pizza party reunion this summer.

Doctors diagnosed Rupesh Kotiya with ALS in October 2014, a month before his sons turned 4 and 2 years old. Ronan and Keaton have no memory of him without the disease.

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A few years ago, they began to lend a hand, first by wiping away their father’s tears or by supporting his head while driving.

Then they started helping Pandya get her father in and out of bed or to the toilet. They pull down his shorts and underwear while she lifts him onto the seat.

They also put socks and shoes on him, help change his shorts, crush medicine, or mix mouthwash with water.

Pandya, an executive director of skincare and cosmetics company Mary Kay, has day and evening caregivers for her husband during the week. But she doesn’t have paid support overnight or on the weekends, so the guys had to step up.

“To be honest, they do jobs that some adults don’t want to do,” Pandya said.

Pandya tries to balance caring for the cubs with activities that offer some normalcy. Keaton takes tennis lessons and programming classes. Ronan plays forward on a youth soccer team.

Soccer balls, frisbees, and basketballs lay scattered in the Kotiyas’ small suburban backyard.

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Both boys play the piano and Keaton diligently paints. Stacks of his work fill the shelves in her upstairs playroom.

Ronan, who wrote a short book about his father, sees his father’s battle with ALS as a superhero fight. He and his brother are among the many weapons used.

Keaton sometimes shows his frustration, especially at the care his father needs.

“He’s had a few accidents over the past few days,” Keaton said. “Once he went three times that day, and I was really looking forward to doing something that day, but I couldn’t do it because … yeah.”

In the end, Pandya sees the care of the boys as positive. She hopes Ronan and Keaton will one day look back and realize how much they’ve gained by helping someone they love.

“When you’re caring for someone who has… a ticking clock, you don’t want to take that time away,” she said. “Being able to wipe her tears, or wipe her mouth, or hold her hand, these are some of the memories she will cherish.”

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The boys know that their father is worse off.

Keaton says his father is finding it increasingly difficult to blink. He remembers one night when Rupesh slept for over 12 hours and took a long nap the next afternoon.

“I wonder should I be worried?” he said.

Frustration, devotion, and heartbreak swirl in their still-developing brains.

Therapist Sarah Sutton recently had the boys make bucket lists of things they wanted to do with their dad.

Keaton shares a love of food with Rupesh, so he asked for a trip to Italy. The family found a more practical alternative: a trip to an Italian grocery store and restaurants in nearby Dallas.

Sutton has been seeing the boys regularly for a number of years. She has tried to get them to recognize and understand all the emotions that hit them so they don’t keep it all under wraps.

When they visit her, she also tries to provide them with a fun activity that they can control. Play – children are children – is crucial for development.

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

On a recent visit, Sutton spawned the board game Candy Land. She tells the boys that each colored card in the game represents an emotion and they can choose which one.

Then they draw cards with the idea of ​​discussing each feeling that comes up.

Sutton also tries to get the boys to talk about their father. They distract and instead focus on a painting on her wall. Then comes the singer Rick Astley.

Keaton pretends to be a therapist. “Do you have a girlfriend?” he asks.

“No, you’re a terrible therapist,” Ronan replies.

Ronan only once admits that his father “does good”.

Sutton draws double green in her game. This represents disgust or injustice.

“I think it’s unfair that terrible things happen to people,” she says.

The boys avoid the bait. They eat Hershey’s kisses. They exchange doodles on an Etch A Sketch. someone farts The session descends into fits of giggles.

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“Have you guys laughed like that all day?” says Sutton. “Laughter without anger or struggle is so wonderful.”

By the time the session ends, Sutton’s floor is littered with candy wrappers.

The boys make their way to their mother’s waiting van so they can return home and camp in the living room.

Pandya had Ronan and Keaton roll out sleeping bags on their living room rug every weekend during the pandemic. It started as a treat when they had nowhere else to go.

Rupesh began using a ventilator just before the pandemic hit. The boys stayed home from school for 17 months as Pandya tried to prevent everyone from catching the virus.

She also has an ulterior motive for allowing the campouts: if the boys sleep next to their parents’ bedroom instead of upstairs in their shared room, it’s easier to summon their help.

The boys may have to get garbage bags and gloves if their father has an accident at night.

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Before setting up camp, the boys change into pajamas and the family settles into the living room to watch the children’s show Legends of the Hidden Temple.

Ronan and Keaton settle into a couch and sofa while Pandya changes her husband’s shirt and pours medicine into his feeding tube. The fan hums.

The show ends and it’s Keaton’s turn to guide dad back to the bedroom, where Pandya lifts him onto the mattress.

Keaton sucks saliva out of his father’s mouth with a long wand.

Ronan then holds his father to his side while Pandya straightens her husband’s shirt and shorts.

After that, the boy gently pats his father on the back and lays him flat.

Pandya gets her husband ready for bed while Ronan and Keaton scurry back into the living room.

There they lounge on sleeping bags, munching on fries and candy while cramming in some more TVs before crawling in to sleep.

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AP video journalist Shelby Lum contributed to this report. Follow Tom Murphy on Twitter: https://twitter.com/thpmurphy

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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.

Copyright 2022 The Associated Press. All rights reserved. This material may not be published, broadcast, transcribed or redistributed without permission.

https://www.local10.com/health/2022/05/31/young-caregivers-exist-in-the-shadows-offer-crucial-help/ Young caregivers “exist in the shadows” and provide vital help

Sarah Y. Kim

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