Dying Brandon woman called for action to fix broken health system

Hey there, time traveller!
This article was published 09/12/2023 (1007 days ago), so information in it may no longer be current.

Sylvia Jumaga, born and raised in Brandon, died when she was 48 years old. For the past 27 years, she had been living with multiple sclerosis.

During the last seven months of her life, Sylvia was at the Assiniboine Centre in Brandon, where she said she witnessed stellar staff working an unsafe number of hours, and using cast-off equipment in a place that, she said, has needed massive remodelling for decades.

Sylvia shared those thoughts with us at the Sun in a letter she wrote during the last days of her life (posted below this story).

“It is too late to help me,” she wrote. “But it isn’t too late to help others.”

When Sylvia was a teenager in the early 1990s, the internet was just about to explode worldwide, and computers – like the Commodore 64 — were big and bulky, with monitors and keyboards that took up a lot of space.

Before there was social media, there was Brandon’s Jerome Yoner, who ran a computer bulletin board service that enabled users to exchange messages, read news and bulletins and sometimes chat.

“I used to run one of the most popular bulletin board services on my Commodore 64 back in the late ’80s and early ’90s,” said Yoner, who was Sylvia’s partner for more than 30 years.

”The computer was hooked up to a telephone line, and you would phone in with your computer and a modem. It was kind of like the earliest precursor of Facebook. And that’s where Sylvia and I met,” he said.

“We became the resident nerd couple.”

They both landed careers working with computers. Yoner took a degree in programming with a minor in business and Sylvia started doing data entry at McKenzie Seeds, which helped her get her foot in the door of the IT department.

“She eventually kept all the big servers running at McKenzie Seeds that had SAP software — that’s a German company. Big corporations typically use SAP, and that’s what Microsoft uses. Sylvia was the SAP administrator,” Yoner said.

During her career at McKenzie Seeds, Sylvia met Marina Tufts, a co-worker who became her best friend for more than 25 years.

Tufts said the two of them shared a strong work ethic, and they immediately hit it off.

“She was a sweetheart; she’d give you the shirt off her back. Nice to a fault and loved everybody, a genuinely nice person. And she was a total geek,” Tufts remembered with a chuckle. “And she had the best sense of humour.”

When Tufts moved to Calgary, Alta., in 2001, the two stayed in touch through daily text messages.

“I talked to Sylvia every day; I always have. We sent funny little emojis every morning, and we had our own little characters. My kids called her Auntie Syl because we’ve been friends for almost 29 years. I met her before she had multiple sclerosis,” Tufts said.

Sylvia received her MS diagnosis on her 21st birthday, in 1996, and managed “very well at that time,” said Yoner. But by 2010, Sylvia was in a wheelchair and mostly working from home. She went on long-term disability in 2012.

Over the years, advancements in technology enabled Sylvia to communicate and organize tasks as the MS progressed, first using a palm pilot, which was a handheld organizer, and eventually using her cellphone and a tablet, but she was no longer able to use her laptop.

Sylvia’s health turned a corner in January 2023 when she suffered a seizure at home and was rushed to Brandon Regional Health Centre, spending two weeks in the Intensive Care Unit. In April, she was transferred to the Assiniboine Centre for rehabilitation.

In her letter to the Sun, Sylvia said, “All of the rehabilitation teams at the Assiniboine worked tirelessly to help me. Over the months I made tremendous gains. Drinking water, eating (and cutting!) solid foods, driving my power wheelchair, rolling to help with dressing, getting enough core strength back to sit on the edge of my bed, and one of my proudest moments: graduating from the cursed Hoyer lift to the Sara lift. We had a celebration on A2 when ‘Sara’ could be written on my board for the transfer method!”

But Sylvia also wrote that in the seven months she spent at the Assiniboine, she noticed a shortage of staff and said they “do their best on all floors, but they are tired, frazzled, and at the breaking point.”

“The Assiniboine Centre staff are the most underpaid, and underappreciated people I’ve ever encountered. Everyone from the nurses, health care aides, rehab aides, custodial, and maintenance staff are not treated with the wages, hours, and respect they deserve. Instead, they are mandated to work unsafe amounts of hours, with aging equipment that should have been replaced years ago.

“The lack of staff is an embarrassment caused by our government. I have no idea how they are going to staff the new hospital expansion at all when they cannot fully staff the space they already have. It is ridiculous and insane,” Sylvia wrote.

A new building is not going to change the fact there are not enough nurses or front-line staff to provide the care that the patients need, said Darlene Jackson, president of the Manitoba Nurses Union, who added: “That is a sad reality.”

“And I can tell you very honestly, I have nurses saying to me, ‘I go home embarrassed at the end of every shift, knowing that I gave the bare minimum to my patients, because that’s all I could do with my patient load.’

“So, it is an embarrassment, but nurses are embarrassed with the care that they’re providing, because they know they should be doing more, and they want to do more. Unfortunately, that’s not the reality anymore,” Jackson said.

Manitoba Health Minister Uzoma Asagwara read Sylvia’s letter and said it was very powerful. Considering what Sylvia was navigating health-wise, mentally, and emotionally, Asagwara added, it was tremendous how she made the effort to communicate her experience to advocate for better health care.

When asked about the potential of a new acute-care facility to replace the aging Assiniboine, Asagwara said the priority is making decisions that strengthen current facilities.

“I certainly feel, and our government certainly feel the level of urgency attached to staffing up the health-care system and making the necessary investments to improve capacity. We also recognize that we didn’t get to this place in health care in Manitoba overnight,” Asagwara said.

“It was years, years of cuts, and closures and decisions to undermine system capacity and to not listen to the experiences that people were having and to act on those experiences that have brought us to this point.

“One of the things that I take very seriously in my role is, setting realistic expectations and making sure that people, as much as possible, understand that in order to move things in the right direction, it’s going to take time to train and recruit people.

“All of that takes more time than what some folks, quite frankly, feel they have in the health-care system. And that’s tough. That’s a tough reality,” Asagwara said.

Sylvia’s partner, Jerome Yoner, said she was positive and upbeat to the last day of her life, a life she chose to end through MAiD (Medical Assistance in Dying). Sylvia died Oct. 24.

“She was strong, elegant, and one of the bravest women I have ever known,” said Yoner as his voice broke.

Marina Tufts said even though her friend is gone, she still sends a text message to her phone every morning.

“A big loss,” Tufts said. “Bubbly, outgoing, she just always seemed happy. We had so many laughs.”

The Assiniboine Centre was built in 1972. Aside from general upkeep like replacing floors, and the introduction of a sprinkler system in 1999, the Assiniboine Centre patient care areas are original to the date of construction.

On the second floor, the ceiling tiles and lights were replaced in January 2018. Any other work would involve routine maintenance, a Prairie Mountain Health Region spokesperson told the Sun in an email.

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