This single dad with PTSD is desperate for respite care to help his autistic son — and himself

A single father in Pasadena is struggling to care for his autistic son while his own mental health is deteriorating — and with no relief on the horizon.

Chris Brake has been the sole caregiver for his son for over a year. His son Aaron is 17 and has autism with high-support needs. When Brake separated from his ex-wife last year, he thought he'd be able to care for their son with help of some respite care.

That care hasn't come, and he has been struggling — on his own.

"I'm not good, man," he told CBC News in a recent interview. "I do everything I can do to try and hold it together."

Brake, 52, served in the Canadian Armed Forces in the Yugoslav Wars, deployed to Croatia in the 1990s. He is on permanent disability with post-traumatic stress disorder stemming from his years of service. 

The two live together in Pasadena after moving from New Brunswick last year when Chris separated from Aaron's mother, who moved to Alberta. For over a year, Chris has been providing Aaron constant care all on his own.

"Right now, that kid is my best friend. And I'm his, basically. We do everything together."

Chris does nearly everything for his son, including feeding and cleaning up after him, bathing him and brushing his teeth, and helping him use the bathroom. Left on his own, Aaron has frequent outbursts and sometimes will hurt himself, so Chris needs to watch him constantly.

"Every day I take him on the quad, take him for a ride, take him in the truck. This is every day, so he don't self-harm."

Chris says his PTSD makes managing his mental health a challenge in the best of times. Even going to the grocery store or a family dinner can be too overwhelming.

At night Aaron is often restless and will wake up shouting and screaming. Sleep deprived, unable to find time to relax or unwind, and with a son who often yells and screams, Brake says his mental health is severely deteriorating.

One way Chris finds his symptoms manifesting is in anger and rage, which he has been learning to manage with a psychologist over the past several years. Despite his best efforts, he still sometimes finds himself raising his voice to try to manage his son's behaviour. Afterwards, he spirals into shame and guilt, as happened after a recent outburst.

"I yelled at him … then I spent a half hour crying in the room," he said. "I feel guilt every day." 

CBC News requested an interview from N.L. Health Services about the availability of respite care for people who need it. The health authority declined an interview and instead emailed a statement that said respite services are 'typically provided through self-managed care, and agency-based models."

"Many families recruit care providers for their children under the self-managed model. Home support agencies are another option; however, due to the complexity of a child's needs, an agency is often unable to match the needs of a care provider."

Respite care is offered by Newfoundland and Labrador's provincial health authority, but the work itself is done by outside agencies. N.L. Health Services can try to help find a provider to give respite care, or families can find it on their own.

The statement said there are no service providers in the Western region that can give respite care outside the home, so they all have to come to the patients' homes.

That's not ideal, says Chris, since for him to get a break he would need to leave the house, and he finds it hard to be in public with his mental health struggles.

"I got PTSD, so where am I gonna go?" he said. "I just like to stay home and be in my own house."

As time goes on, he's gotten increasingly desperate and willing to take any form of respite care he can get while he takes care of Aaron — even just once a month, he said: "So that I can get my demons under control, so that I can deal with his demons and give him a life that he deserves."

Leah Farrell of the Autism Society of Newfoundland and Labrador says it's common for families to struggle to find respite care for people with high support needs.

"Families have said they find it difficult to hire dependable and professional respite workers even if they go through an agency," she said.

Chris recounted a time two care workers came to his house to meet Aaron and decide if they could help take care of him. The meeting didn't go well.

"One of them looked at me and said, 'I don't know how you're doing this, and there's absolutely no way we can take care of him.'"

It's been months since Chris has had any hope of respite care coming to help him. Aaron turns 18 in November, and he'll be an adult then with different options for care. Chris plans to start a new application process to get Aaron placed in an assisted-living home, where he could visit frequently.

That birthday is still weeks away. Until then, Chris will continue doing what he's doing — trying to juggle his own mental health issues and care for his son all on his own.

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