Caring for the caregiver: Raising children with a disability or chronic disease

"It felt like the ground had fallen out from under my feet," said one mom about her daughter's cerebral palsy diagnosis. Getty

Amy Illingworth’s world was turned upside down when her two-year-old daughter, Victoria, was diagnosed with cerebral palsy.

“It felt like the ground had fallen out from under my feet,” she said.

But she wasn’t idle for long — within months she had quit her job, devoting all her time and energy to Victoria’s care.

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“I entrenched myself in the care and diagnostics of Victoria… that was my focus,” Illingworth told Global News.

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It wasn’t until her husband said something that she realized her lack of self-care was harming both her and her child.

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“He said, ‘You want to care for Victoria in the best way that you can, [but] it’s important for you to be healthy, too,'” Illingworth said. “That felt like a luxury I didn’t have time for because of all the appointments.”

Since the diagnosis, Illingworth’s life had been consumed by brochures, research and meetings with specialists. She realized quickly that she knew nothing about how to care for someone with a physical disability.

“From an education standpoint, it’s very challenging. From an emotional standpoint, it’s very challenging,” she said.

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More than eight million Canadians provide unpaid care to loved ones with health issues, saving the health-care system more than $26 billion per year. Unfortunately, since caregivers are preoccupied with someone else’s needs, it often comes at the cost of their own health.

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A 2016 study by the Canadian Public Health Association found that caregivers reported being anxious or worried about their responsibilities, and had increased levels of stress, and depression as well as low levels of subjective well-being. Sixteen per cent of caregivers reported “very high” levels of stress.

Dr. Dorian Traube, an associate professor in the school of social work at the University of Southern California, believes those effects can get much worse when caring for your own child.

“There’s widely documented caregiver stress… but there’s an element of having an ill child that I think triggers something particularly acute,” she said. “You have an intrinsic devotion to your child.”

The burden of having a sick child

When a child becomes sick, the parent’s entire ecosystem is disrupted.

“You have to quit your job or you may lose your job… you may lose social relationships, because human relationships take effort and nurturing and you may not have the ability to focus on those,” Traube added.

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For Payal K., the stress of her daughter’s illness was compounded by the shock and confusion of recently immigrating to Canada from India. (She has asked that her last name and her daughter’s diagnosis not be shared to protect their privacy.)

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“As with any immigrant, [we had] the universal challenges of finding a job, settling, acclimatizing to the weather… then you add another layer of having a child who has these needs,” said Payal.

Suddenly, Payal was going through a massive life change without any family support or community connections. She also had to learn how to navigate a brand new health-care system — one riddled with forms and procedures that can often be confusing for people who grew up here.

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“It was a very daunting task,” she said. “[My needs] had to take a backseat.”
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According to Traube, even thinking about yourself when all these other people are relying on you can cause immense feelings of guilt.

“It becomes something that your entire brain capacity is taken up with… but humans need balance,” said Traube. “There’s not room for anything else, including self-care.”

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Without balance, there’s stress — and stress can wreak “all sorts of havoc” on your biological system.

It can cause “everything from weight gain to issues with blood pressure,” Traube explained. “There are even concerns about a linkage between acute stress and higher risk for autoimmune diseases.”

Despite all this, Illingworth believes most health-care centres fail to prioritize parents of sick children.

“Some of the advertisements — when it’s like mothers bawling their eyes out in a shower and then they have to shake themselves off — that is accurate,” she said. “You are alone.”

A gap in the health-care system

Parenting expert Ann Douglas agrees with Illingworth. She has four kids, all of whom had a number of mental health and neurological challenges throughout childhood. She wrote about her experiences in her book Parenting Through the Storm

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“There are all these different layers of worry,” she told Global News. “There’s exhaustion and worry… a lot of mental and emotional labour is involved in researching the systems and supports available… work-life balance issues… and the financial impact.”

The biggest thing a hospital can do, in Douglas’s view, is put together a peer support network for parents to get practical assistance from “other parents who have walked this walk.”

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Traube echos the need for “social support.”

“Making sure you have the ability to reach out… if it’s family, friends, your significant other,” she said. “You need to be able to talk about your feelings… you need to be able to ask somebody to bring you dinner.”

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She also encourages parents to find “purpose in the process,” or a way to grow from their child’s illness.

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“For example, lots of parents who have children with cancer become heavily involved in the world of cancer fundraising,” said Traube. “It’s about deciding to have another interest that you can devote at least a small amount of time to… and having a place to go and things to do with your time.”

This offers parents a chance to regain control. Traube said this is critical for the well-being of both parent and child.

“There’s a reason why, when you’re on an airplane, they always say that if the airbags deploy, you should put yours on first and then your child’s.”

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Illingworth and Payal both credit the Holland Bloorview Kids Rehabilitation Hospital in Toronto as being the first place they understood the need for self-care and peer support.

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Now, they’re family leaders at the hospital, working to support other families with similar stories.

The right way to support caregivers

Jean Hammond, family partnerships specialist at Holland Bloorview first discovered the hospital when her daughter was a patient. She said there is a “spectrum of caregiver needs” among the parents she works with, and providing for those needs is one of their top priorities.

“What we’re hoping to create is a group of caregivers who feel supported, who have been given education, training and support in order to do their very important job,” she said. “Caregivers provide 80 per cent of the care, and that helps [doctors] provide the other 20 per cent.”

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With that in mind, Holland Bloorview has a number of programs available to the parents of its patients.

The first is an informal peer support group, where some parents (called family leaders) are identified as having experience as a caregiver and they offer their knowledge to new parents.

“For a parent of a special needs child meeting another parent of a special needs child, there’s an automatic connection and a sense of ‘getting it,'” Hammond said.

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Her team also organizes frequent coffee nights and potlucks, which offer parents of inpatient children a break within the hospital walls.

“We also have an online resource hub for caregivers, and we have education workshops for caregivers on topics such as self-care, resiliency, mindfulness and nutrition,” said Hammond.

Recently, parents at Holland Bloorview met for a “paperwork party,” where they were invited to bring forms and applications they found lengthy or confusing.

“Caregivers have to fill out a form for just about everything,” said Hammond. “Understandably, these get pushed to the bottom of the to-do list frequently.”

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Members of Hammond’s team and a social worker were present to offer support. They also taught parents new to the hospital how to most effectively apply for funding.

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Illingworth says nights like these have been “life-changing” for her family.

“I have a better understanding of how to raise this child, and not just take her to appointments. It’s about the bigger picture,” she said.

“I would love for other hospitals to see the benefit of the holistic, client-centred, team approach. I think it makes a huge difference in the psychology of the whole family.”

For families that may not have this sort of hospital as an option, experts suggest looking for support groups in the community or online.

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