Young caregivers “be in the shadows” and provide decisive help to families

Ronan’s 9-year-old brother, Keaton, is waiting nearby and is ready to connect his father, Rupesh Kotiya, to a portable ventilator.

“Ronan, do you want to suck Dad’s mouth and get ready to go?” Siobhan Pandya asked after his son pointed his father’s electric wheelchair into the living room of his family’s Plano’s house.

“Buddy, thank you for your hard work.” The robot’s voice crackles from the tablet Kotiya uses to speak.

So another weekend begins for the brothers — two Harry Potter fans with a mouth full of braces, tips for building with Lego, and some heavy care responsibilities.

Their 46-year-old father suffers from Lugeric’s disease. This is a deadly illness that has robbed him of his ability to speak and walk. The ventilator helps him breathe. He uses the tablet’s eye-tracking software to say things, blink to say “yes”, and move his mouth left and right to say “no”.

According to researcher Melinda Kabanau, as many as 10 million children in the United States could provide some form of care at home. Some children are the only caregivers the patient has, while others fill in when visiting nurses and other help are not available.

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 is often overlooked outside the home.

“They are 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 increasing and they need help. Long-term care is a job that children like Ronan and Keaton take seriously, and what the mother wants will shape them into empathetic and strong young men.

But getting there first requires a daily struggle to balance being a child with living in a highly grown world.

Learn how to care

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

His opponent, a freckled boy named Charlie, is waiting a few feet away and is ready to smash the car together. He loses when he falls first.

“Everyone is a barbarian,” says Evie, a lean nine-year-old who tends to dance spontaneously.

On a sunny Saturday afternoon, the children gathered at the clinic to learn about caring for people with Lugeric’s disease and amyotrophic lateral sclerosis. These seven children (ages 8-12) take care of parents or grandparents of ALS, a disease that destroys nerve cells in the brain and spinal cord that control muscle movement.

Kavanaugh has lined up several experts to teach her that she has taken her to several cities as part of a program called YCare. The nutritionist showed the children how to make the food properly consistent so that the patient does not choke. Respiratory therapists explained an important part of the device that helps people cough and get rid of mucus.

In one training session, speech therapist Heather Gallas describes eye-tracking techniques that enable patients to spell words and communicate with tablets.

She takes a laminated letterboard and asks the kids to give it a try. Evie silently points to all the letters in her name.

Then Keaton takes turns.

Suction.

Gallas pauses, “Is that what your dad needs a lot?”

Keaton nods.

Apart from providing training, one of Kavanaugh’s main goals was simply to meet young caregivers. Solitude was a problem and was exacerbated during the COVID-19 pandemic.

“A 10-year-old kid at school isn’t going to talk about parents’ toilets or bathing, but he’s going to talk about it here,” Kavanaugh said.

Step up

Doctors diagnosed Rupeskotiya as ALS in October 2014, a month before his boy was four and two years old. Ronan and Keaton have no memory of him without illness.

A few years ago, they started pitching carefully, initially wiping their dad’s tears or supporting his dad’s head while in the car.

Then they started helping Pandia move her father in and out of bed or to the bathroom. They pull down his shorts and underwear while she lifts him up to the seat.

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

Pandia, senior director of skin care and cosmetics company Mary Kay, has day and night caregivers for her husband on weekdays. But she didn’t pay for help overnight or weekends, so the boy had to step up.

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

She seeks to balance the care of the boy with the activities that provide normality. Keaton takes tennis lessons and coding classes. Ronan plays a striker on the youth soccer team. Both boys play the piano and Keaton draws prolificly.

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

Keaton sometimes shows his frustration, especially with the amount of care his dad needs.

“He has had some accidents in the last few days,” Keaton said. “At one point he went three times that day. I was really looking forward to doing something that day, but I couldn’t do that … yeah.”

Pandia sees the care of boys as positive. She wants Ronan and Keaton to finally look back and realize how much they gained by helping their loved ones.

“… If you’re taking care of someone whose clock is ticking, you don’t want to take that time,” she said.

Frustration, dedication

The boys know that their dad is getting worse.

Frustration, dedication, and broken heart are all swirling in the still-developed brain.

Therapist Sarah Sutton recently had her brothers create a bucket list of what they wanted to do with their father.

Keaton shares his love for food with Rupes, so he sought a trip to Italy. The family has found a more practical option. A drive to the Italian food market and restaurants in nearby Dallas.

Sutton has been meeting boys regularly for several years. They aren’t cramming everything because she wants them to recognize and understand all the emotions that are attacking them.

When they visit, she also tries to give them fun activities that they can control. Play-children are children-is very important to development.

During a recent visit, Sutton launched the board game Candyland. She tells the boys that each color card in the game expresses emotions, and they can decide which one to decide.

Then they draw cards with the idea of ​​discussing whatever feelings they may have.

Sutton also tries to encourage the boys to talk about their dad. They distract and instead focus on the painting on her wall.

Sutton draws a double green in their game. It represents disgust and injustice.

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

Boys avoid food. They eat Hershey’s kiss. They exchange graffiti with Etch A Sketch. Someone is flatulent. The session develops into a bout of laughter.

Camp out

During the pandemic, Pandia began to have Ronan and Keaton spread their sleeping bags on the living room rug every weekend. It started as a treat when they couldn’t go anywhere else.

She also has the unfavorable motive of allowing campouts. Placing the boy next to her parents’ bedroom instead of upstairs in the shared room makes it easier to call for her help. If the dad has an accident in the middle of the night, the boy may have to get a trash bag and gloves.

The family calms down in the living room and watches the children’s show “The Legend of the Hidden Temple”.

Ronan and Keaton curl up on the couch and loveseat, and Pandia changes her husband’s shirt and pour medicine into the feeding tube. The ventilator hums.

The show is over, Keaton takes his turn to return Dad to the bedroom, where Pandia lifts him to the mattress.

Keaton uses a long cane to aspirate saliva from his father’s mouth.

Then Ronan hugs his father sideways while Pandia straightens her husband’s shirt and shorts.

After that, the boy gently strokes his dad’s back and lays down.

Pandia has prepared her husband’s bed, and Ronan and Keaton are back in the living room.

There, they spread out on their sleeping bags, munching on chips and candies, pushing them into the TV a little more, and then crawling inside to sleep.