- Associated Press - Saturday, May 20, 2017

MILWAUKEE (AP) - Most days after school, 14-year-old Zachery DeVoy does something typical teenagers avoid.

He hangs out with his parents, the Milwaukee Journal Sentinel (http://bit.ly/2pUbF4s ) reported.

“Me and my mom will laugh at anything,” he said. “We hang out and talk about our day, watch TV together. I’ll do laundry and after dinner, do the dishes. On weekends, I vacuum and water her plants.”

An eighth grader at Delavan Phoenix Middle School, Zach also helps his mom, Brenda, in and out of her wheelchair. He helps her take her pills at night. He works out with weights so that he can lift her as ALS continues to take its toll on her body. He anticipates what she needs, and instinctively does it without being asked.

The two have completed roughly 60 pages of a legacy book about things she won’t be able to tell him when he is older; he asks questions, she answers them.

Zach is among dozens of school-age children in Wisconsin who help provide daily hands-on care for a parent whose life will be cut short by a devastating neurological illness such as amyotrophic lateral sclerosis - ALS, or Lou Gehrig’s disease, in which patients lose the ability to move, and eventually to breathe - or Huntington’s disease, a genetic disorder that breaks down nerve cells in the brain.

Nationwide, an estimated 1.4 million children could be classified as young caregivers, a little-known group of vital helpers who feed, bathe, move and support a parent or other adult family member, all while going to school or holding down a part-time job.

How little known are they? That study was in 2005 - and it’s the most recent available.

“They do what they do in near total anonymity,” said Melinda Kavanaugh, an assistant professor of social work at the University of Wisconsin-Milwaukee.

Kavanaugh is one of only a few scholars around the country studying the physical and psychological well-being of these young people who are left out of other caregiver studies. A ground-breaking manual she wrote for families living with ALS was just published by the national ALS Association. It focuses on how to talk with children and older youths about living with ALS, based on her clinical social work practice and research with families, children and youths affected by neurological illnesses.

Kavanaugh was recently in Washington, D.C., for a three-day National ALS Advocacy Conference, which culminated Tuesday with ALS Advocacy Day on Capitol Hill. Her research addresses gaps in state and national caregiving policy. Her goal is to help win funding and support for youth that is now only available to adult caregivers.

“Some kids are primary caregivers - they get up in the morning, get their parents set up, go to school,” Kavanaugh said. “Then they come home after school to continue. The other parent may travel for work or work long hours. Some kids are in single-parent households. They have to keep their fingers crossed nothing happens when they’re in school.”

Sixty percent of kids who provide care for their parents acknowledge it affects their school attendance and performance, according to Kavanaugh’s research. Separately, the Bill and Melinda Gates Foundation says 22% of high school dropouts cite caregiving as the reason for leaving school.

“Three years ago, ‘young caregiver’ wasn’t even on our radar,” said Lori Banker-Horner, care services director for the ALS Association Wisconsin Chapter. “There was very little research. Melinda opened the door and this was brought to the forefront. Meeting her was like a lightning bolt.”

Kavanaugh also reached out to the ALS Clinic at Froedtert & the Medical College of Wisconsin, one of 52 U.S. clinics certified by the ALS Association. A certified child life specialist joined the ALS Clinic’s care team last June.

The specialist, Heidi Miranda, says school-age kids did not accompany their parents to the ALS Clinic before she became part of the team. Now, the kids are invited to attend appointments and have face-to-face time with her. The average age: 10 to 14.

These kids have a role in their parents’ experience, and the more they know, the better they do, Miranda said.

“In general, the biggest concern isn’t so much children being the caregivers as much as exposing them to the devices used and making sure the child feels safe if a parent falls or starts choking; here’s who you need to call,” she said. “We get a system in place… It’s more about kids being educated so they know what’s going on and can be helpful if they want to.”

“What impresses me the most,” Miranda said, “is the resilience in the children. It’s their new normal. They can’t change it.”

Froedtert’s ALS Clinic has 225 patients, according to neurologist Paul Barkhaus, who started the multidisciplinary clinic about 20 years ago.

Zach’s mom, Brenda DeVoy, 49, is one of them. In March, Zach joined his mom and his dad, Steve, for appointments she routinely has with a care team. In addition to a neurologist and child life specialist, the team is made up of speech, occupational, respiratory and physical therapists; nurses, a chaplain, neuropsychologist, social worker, dietitian and care coordinators from the ALS Association Wisconsin Chapter.

“I didn’t really know what was happening at first,” Zach said of his mom’s initial diagnosis. “But I went to her last appointment at the clinic. All the tests they gave her were cool to watch.”

Steve DeVoy retired early from being a police officer in the Village of Williams Bay to care for Brenda.

“We learn as we go,” he said. “If it weren’t for Zach’s contributions, we’d be in serious trouble.”

Often, parents are reluctant to discuss their dependence on their school-age children.

“The biggest barrier is that parents don’t want to share that their kids are involved,” Banker-Horner said. “Parents are supposed to be taking care of their kids. It’s very hard for them to be cared for by their children.”

Further, school-age kids may not want to discuss it with their friends, so they quietly go about their daily tasks.

The care services team for the ALS Association Wisconsin Chapter now makes a point during home visits and all other interactions to identify whether young people are involved in caring for an adult and could use support, Banker-Horner said. The chapter currently serves about 370 people with ALS.

Generally, the life expectancy for someone with ALS is two to five years after diagnosis. The average age at onset is 50s, but it can range from the 20s to the 80s. A drug approved a week ago by the FDA - the first new ALS drug in 22 years - may offer hope for slowing its progression.

Kavanaugh worked with the ALS Clinic at Froedtert and the ALS Association Wisconsin Chapter to offer a youth workshop last month that gave young caregivers a chance to be with peers who understand firsthand the challenges. They also tried to give them tools to help with what they already are doing.

“We have to recognize it when we see an area where kids are doing things over their heads,” Banker-Horner said. “You can see some tough, horrible things, but also some beautiful moments and that’s what keeps you going.”

Kavanaugh was a social worker, coordinating a clinic for Huntington’s Disease at Washington University in St. Louis, before she became an assistant professor at University of Wisconsin-Milwaukee.

Huntington’s destroys neurons in areas of the brain involved in movement, intellect, and emotions, and is characterized by uncontrollable jerking movements of the limbs, trunk, and face, as well as progressive loss of mental abilities and psychiatric issues. The disease is genetically linked, so young caregivers not only tend to their parents, they also face 50-50 odds that they are facing the same future.

Kavanaugh first saw kids doing hands-on caregiving for parents and grandparents during home visits while working at the Washington University clinic. She started a support group for youth in families with Huntington’s disease in the early 2000s.

“I didn’t know how many were providing care,” Kavanaugh said. “What happened organically is this group started talking about learning how to use a feeding tube, and bathing and toileting their parents.”

Having a support group with other kids going through the same thing “normalized it for them,” she said.

Wanting to do more to help these kids, Kavanaugh returned to school for her doctorate at UW-Madison. Her dissertation was about youths who provide care for adults with Huntington’s.

The majority of Kavanaugh’s research now involves ALS families. She is working on what could be a national model of support.

Kavanaugh has interviewed young caregivers in 18 states as part of her research. She also conducts workshops at the national ALS and Huntington’s disease conferences. That’s where she met Jenna Mannone, who just turned 18 and is about to graduate from high school.

Jenna attended two workshops led by Kavanaugh. One was how to cope with Huntington’s, and the other was how to deal with being at 50-50 risk for the disease herself.

Jenna lives about 45 minutes north of Tampa, Fla., where she, her dad and mom Lisa moved three years ago when doctors told them a warmer climate might add years to her mom’s life.

Lisa Mannone died March 20, 2016. She was 51.

“If I was able to do it all over again, I would,” Jenna says of caring for her mom. “I loved doing it. I might have had bad days, but it was my mom and I would do anything for her.”

Jenna is matter-of-fact about how she started making her own food at age 5 or 6, and spent her childhood as a caregiver. She wishes adults better understood and recognized her role in caring for her mom’s daily needs. “Not being recognized by other people is hard,” she said.

Jenna and her dad split caregiving shifts. He took the day shift. Jenna came home from school, had a snack, took a nap and then cared for her mom through the evening.

“I fed my mom, showered and bathed her, shaved her legs, all the other hygiene things,” Jenna said. “I made her dinner, watched TV with her and brought her to the bathroom. My mom was in diapers the last six months. I also changed her diaper.”

Jenna kept to herself a lot. “I never told people my mom had this disease, and wasn’t like their mom. At the beginning, I was very embarrassed. It hurt me, seeing her sick, when we used to go out and people would stare at her.”

It was never easy. “I’d say, ‘Mom, you need to work with me and I’m stressed,’ and she’d say, ‘I’m really sorry, I should be taking care of you.’ I didn’t want her to feel like it was a burden. She was my mom; I’d do anything. But she would say, ‘I’m so sorry, Jenna. I don’t want to have this.’”

When Instagram and Snapchat became popular, in about seventh grade, Jenna found other kids going through similar things. That opened the door to finally talking about it.

As she got older, her friends from school “took it great,” she said. “My mom’s movements were bad, and kinda scary. But my friends would walk in and give her a hug.”

Jenna’s mom won’t see her graduate from high school. Jenna will pin her picture inside her graduation gown, and tuck another photo of her mom in her mortarboard. The 18-year-old plans to attend community college first, save money, and become a radiologist.

She doesn’t know if she’ll have Huntington’s disease too, someday.

The Charles family in Ashwaubenon is still picking up the pieces.

Janice Charles, the mom, never could have imagined she would lose her husband to ALS after they adopted two toddlers from a Russian orphanage, Emily, now 17, and Tania, now 16.

They live nine blocks from Lambeau Field. Their living room is a shrine to the Green Bay Packers; it’s where Scott Charles spent the last months of his life before he died of ALS at age 54 last Sept. 26.

Scott was a short-distance truck driver before he started slurring words and having difficulty walking. He never accepted his ALS diagnosis. Instead, he became bitter, his family recalled.

After he died, they found notes around the house about how lonely he was, and how sorry he was, Janice said.

“I helped him with his feeding tube and opened cans for him because his hands were bad,” Emily recalls. “His feeding tube was in his stomach, and there was a syringe and a tube with valves.”

Emily is a high school junior and wants to be a nurse after watching nurses who cared for her dad.

Tania, a high school sophomore, wishes her father would have been more open to sharing his limitations with the girls. “I guess he didn’t want us helping him,” she said. “He didn’t want us to know he couldn’t do it himself.”

Health insurance typically doesn’t pay for daily life care at home. National programs that serve caregivers through respite, support and education only provide services for those over age 18.

“There’s no funding for someone to come into your home, and that’s why the burden falls on family members, kids like Zach,” said his dad, Steve DeVoy. “They have to grow up so quickly.”

Zach loves baseball and bowling. He plays second base on his school’s baseball team. He also has an entrepreneurial spirit, with his own lawn care service. He rides a red Simplicity lawn tractor bearing the motto: “You Grow It, I’ll Mow It.”

Caring for his mother initially took a toll on Zach’s grades, his dad said. The family doesn’t discuss ALS much, but the door is always open when Zach wants to talk about what is happening to his mom, his dad said. Zach also talks as needed with a school guidance counselor.

Brenda was diagnosed with ALS in December 2015. Once the disease starts, it eventually takes away the ability to walk, dress, write, speak, swallow, and breathe. How fast, and in what order things happen, is different from person to person. Brenda is still able to work part-time as an administrative secretary for Shorewest Realty.

She can walk short distances with a walker. Otherwise, she uses a power wheelchair with a license plate that says: HAUL ‘N-ALS and Racing For a Cure.

Brenda needs help bathing, dressing, doing her hair and makeup and eating. She has difficulty speaking - especially as she tires later in the day and her sentences are limited to two to three words. She needs help getting in and out of a chair, and bed.

“We think it’s important he’s a 14-year-old kid who does what a 14-year-old should do,” said Zach’s dad, who works part-time managing the security department of a hotel to be able to afford health insurance.

“We all work hard to make sure Brenda is taken care of. You can dwell on it and have a pity party. Or, you can make the best of it. That’s what we do.”

___

Information from: Milwaukee Journal Sentinel, http://www.jsonline.com

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