Families struggling with brain injuries demand long-promised help

Paul Marvin often struggles to remember — whether it's to shower or to take his naps, or why he's in his basement once again.

"After the fourth time going to the bottom floor, it was so frustrating that I couldn't remember what I was doing there. You just sort of stand there in a fog going, 'What am I doing here?' It was so frustrating I broke down and cried."

Marvin is still recovering from successive concussions. The first happened when he hit his head after falling off a chair at work in December 2010. Several weeks later, that injury was exacerbated when his car was rear-ended.

Paige McFarlane said it took her months to clue in that something might be seriously wrong with her husband, and years before they received a definitive diagnosis.

Like thousands of others in Nova Scotia, Marvin, now 64, has an acquired brain injury.

The Brain Injury Association of Nova Scotia estimates that about 100,000 Nova Scotians and their families are affected by brain injury, and that there are 2,700 new brain injuries in Nova Scotia every year.

Before his injury, Marvin was an occupational health and safety and environment manager for the federal Defence Department.

Now, keeping her husband on track is McFarlane's full-time job. She stopped working five years ago to devote all her attention to his care and recovery. She admits she, too, has cried in frustration.

"I have to cue Paul, gosh, probably like three or four times an hour," she said, as the two sat side by side on the family couch, holding hands.

"I cue him on different things depending on what's going on throughout the day. 'Hey honey, you've gotta get ready. We've got to get to that appointment.' And then I have to remind him again, like, 'Hey, c'mon downstairs and get your shoes on,' because he has no sense of time.

"It's exhausting to keep almost dragging somebody along."

'It can bring you to tears'

It's also not easy on Marvin to be constantly told what to do.

"I've always had a very high level of ability to take on frustrating projects and things, so that helps," he said. "Personality helps, but, you know, it can bring you to tears." 

Marvin has taken advantage of all the province has to offer in the way of support, but neither he nor McFarlane think it's enough. That's why she took part, in June 2016, in a focus group aimed at creating Nova Scotia's first acquired brain injury strategy.

Former Liberal health minister Leo Glavine began that process 20 months earlier, with an announcement at the Nova Scotia Legislature on Oct. 16, 2014.

"We know we need to do more to support those with an acquired brain injury and their families," he told his colleagues at Province House at the time. "This strategy will serve as an important road map to determine what needs to be addressed and what the outcomes we expect to see are and how we get there."

Strategy stalled

Three years later Marvin, McFarlane and thousands of other families wonder what happened to that plan.

"Brain injury isn't like a broken leg where you put a cast on it," said McFarlane. "This is ongoing so there has to be a continuum of support out there.

"There's got to be another stage to it. I don't see anything."

Leona Burkey is just as frustrated.

The executive director of the Brain Injury Association of Nova Scotia says she's been fielding calls from concerned families asking about the strategy for months now.

Although Burkey was co-chair of the consultation group that wrote a report for the minister, complete with recommendations, she said she didn't know when a strategy would be coming.

"It's extremely discouraging for this community that is already in the shadows," she told CBC News. "The sheer magnitude of the issue really warrants some attention on the part of the ministry of health because we're not talking about a fringe group. We're talking about a lot of people."

Health minister unable to provide assurance

Burkey said Marvin's situation is not unique.

"One hundred per cent of the burden of care, once he was released from hospital, is on Paige," she said. "And she is starting to come unravelled because it's a long road."

"She is getting nowhere because there's nowhere to get."

Burkey met with the new Minister of Health, Randy Delorey, last month at his request, but the group received no timeline for when the strategy might be ready.

Last week, Delorey told CBC News he still hasn't read the report Burkey helped prepare.

"I have a copy of the report. It's one of many reports and information that I have to go through in my role as minister to work on," he said.

He said meeting with Burkey was proof of his commitment to the plan.

"There's certainly political will to work and advance in this area."

'These houses are on fire'

But Burkey can't understand the continued delay.

"We're not asking for funding. We're not asking for blanket millions to fix the problem. We're asking for a plan."

McFarlane was more pointed in her criticism.

"This is an invisible injury and it's happening in people's homes privately — but these houses are on fire," she said. "This isn't like you'll get around to calling the fire department and maybe you'll get around to putting water on the fire.

"This has to be dealt with. We've got to start putting funds and a strategy in place to help people."