'I feel trapped': Regina meningitis patient faces barriers to rehabilitation support

When Brenda Herback woke up the morning she was set to fly to France from Regina for a vacation, she had no idea she would be in a coma in a matter of days.

She certainly didn't think that months later, she'd be fighting to get help with her recovery from meningitis. 

Brenda, 65, and her husband Garry Herback had planned to go on a river cruise, but the morning they were set to embark, Brenda had a headache. The couple didn't think much of it. 

As they traveled, the pain got progressively worse. Once the Herbacks reached Bordeaux, France, on Sept. 13, 2024, Brenda was sleeping constantly. 

"You could tell she was struggling. And so we sat her down and she said she was seeing double," Garry said.

He took his wife to an emergency room in Bordeaux on Sept. 14. The doctors informed him that Brenda had meningitis and later identified the bacteria that caused it. Garry said everything sounded positive.

But the next morning, he got shocking news from the hospital.

"They told me she got into a coma and that they're waiting for a surgeon and they were very, very worried," he said.

"I was going, 'Oh my god. Oh my god. You know, is she gonna die? Is she gonna die?' Because I didn't really know what was going on. And that's when it all began."

Listeria diagnosis

Brenda was diagnosed with listeria meningitis. According to the Mayo Clinic, listeria infection is a food-borne bacterial illness most commonly caused by eating improperly processed deli meats and unpasteurized milk products. To this day, Garry says the family has no idea how Brenda got the infection.

According to the Saskatchewan Health Authority (SHA), bacterial meningitis isn't as common as viral meningitis. It says the illness is "very serious" and needs to be treated right away to "prevent brain damage and death."

She's not the same person.- Garry Herback

Garry and Brenda have been married for 47 years. Before contracting meningitis, she was active, smart and a leader in her local photography club. She loved walking and playing with her grandchildren, and was known to be very health-conscious. 

"For some reason, [the infection] just jumped from her intestines into her bloodstream and from her bloodstream to her brain," Garry said.

The Herbacks flew back to Regina on Oct. 10. Brenda was still in a coma. 

"I wanted to get her home to be around family and friends," Garry said. "She woke up almost as soon as she got back." 

Brenda told CBC she doesn't remember anything directly before or after the coma. 

"I'd been told something had happened, and a day or two later I don't remember ever hearing about it," she said of her memory.

Brenda struggled with complications while in Regina General Hospital. The fluid in her brain was not draining properly. Doctors had to put in an internal shunt to relieve the pressure on her brain. She has significant brain trauma. 

"Basically her life now is going from a hospital bed to a wheelchair, from a wheelchair to a hospital bed. She can't walk now. Her fine motor skills are gone. She has trouble seeing sometimes. Certainly her memory is not what it was. She gets confused," Garry said. 

"She's not the same person."

Road to physical and cognitive rehabilitation

Garry said Brenda needs physiotherapy, as well as occupational therapy for cognitive issues, as soon as possible. He said he was "naive" to think that getting into a rehab facility would be a fairly smooth process. 

The Herback family wanted Brenda in the Wascana Rehabilitation Centre, which is run by the SHA, but she was denied due to her short-term memory problems and fatigue.

They soon found out Brenda didn't qualify for numerous short-term care homes, public or private. 

"How can you qualify for something if you lay in a bed for four months? So it's pretty hard to qualify when you've lost all the skills you had prior to your illness," Garry said. 

I feel a little bit stuck with the system.- Brenda Herback

Brenda said she never had an issue with the Saskatchewan health-care system before contracting meningitis, but now she feels the province's priorities ignore unique health situations like hers.

"It makes me feel less important in the scheme of things," she said. "I feel a little bit stuck with the system."

The Herbacks tried to get Brenda into eight local private care facilities. They were turned down by five that said they couldn't provide her the supports she needs. The other three had waitlists. These were month-to-month short-term facilities, which Brenda preferred. 

One home gave the Herbacks the green light, but it fell through. 

"We thought she was going to get in and we started moving in and then all of a sudden they found out she had a shunt. And they said they couldn't take a shunt," he said.

"The objective was to get Brenda to the point with physio where she would qualify to go into Wascana [Rehab] and get more intensive physio. But we ran out of options."

'A world of uncertainty'

Now, the SHA is looking into care homes for Brenda, but Garry said it must be their choice. In early January, the SHA approved her for a long-term care home in Regina, but the family doesn't know what home or how long they will have to wait. 

"We live in a world of uncertainty. We don't know how long this is going to take. We don't know what the recovery is going to look like. We don't know where she's going to live. We don't have any idea what our future looks like right now," Garry said.

Brenda said she finds the news that she is only approved for a long-term care home upsetting, because she feels like she could cope "just fine" in what she calls a "regular" care home.

I do feel prepared. I've done physio in the past for other things, and once I make up my mind it seems to go well.- Brenda Herback

In a statement to the CBC, the SHA said there are "multiple different care pathways within the continuum of care for each individual patient seeking specialized care, from rehabilitation to convalescent to long-term care and all programs in between."

"Patients are placed in the program that can best meet their assessed health needs at present. An individual's health status may evolve over time, therefore, a reassessment may be completed during their recovery and care to determine if an alternate program may meet their health care needs," the SHA said.

Brenda is eager to start physiotherapy as soon as possible.

"I do feel prepared. I've done physio in the past for other things, and once I make up my mind it seems to go well," she said. 

"I'd like to get back to the point I was before. Who knows if that will ever happen. But at least it's something to work toward."

A 'flawed system'

Both Brenda and Garry said have been happy with the care they've received from doctors, nurses and other health-care providers.

"The people have been great. But they're working in a flawed system," Garry said. 

Brenda said she is frustrated because she wants to get out of bed, go to the bathroom and move around. Garry said she wants to regain her dignity.

"I feel trapped, but hopeful. There's good people around me," Brenda said. 

I want my wife back.- Garry Herback, Regina

Herback said there is no provincial financial support for Brenda's rehabilitation and he only gets $400 per year for her needs through his benefit plan.

Once she's in a care home, the Herbacks have to supply their own physiotherapist. Admission to a home is income-based, according to Garry, and could cost anywhere from $1,200 to $3,300 a month. While Garry is in a position where he doesn't have to be too worried about finances, he said he wants to speak out because he believes many people cannot afford it.

"It comes as a shock when you're when you're worrying about the recovery of the person and now you've got to worry about where you are going to find the means to deal with this."

Brenda said she is fearful that other people with rare health problems like hers will have the same trouble getting help in Saskatchewan's health-care system. 

In the meantime, her battle with meningitis has been hard on the Herback family, but Garry said everyone has been wonderful.

"It's become a 24/7 thing. If you're not with Brenda and helping Brenda and spending time with her, you're thinking about her. [The kids] want their mom back. The grandchildren want their 'gee bee' back — that's what they call their grandmother," he said. 

"I want my wife back."