‘It’s very good to be home’

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This article was published 12/03/2025 (207 days ago), so information in it may no longer be current.

A woman with muscle-wasting disease has won her fight to get enough health care coverage so she can return home from hospital.

“It’s very good to be home,” Crystal Rondeau, 35, said on Wednesday from her hospital bed, which has been set up in her bedroom at her parents’ home in St. Andrews.

“I don’t want people to have to fight as hard and as long as I did.”

For months, staff at the Health Sciences Centre and Interlake-Eastern Regional Health Authority have said Crystal would have to be transferred to the Riverview Health Centre in Winnipeg, even though officials there said they wouldn’t be able to meet all of the woman’s caregiving needs.

Last week, Crystal was discharged from HSC, and transferred to her parents’ home, after the RHA agreed to fund 100 hours of care per week in self-managed care.

It’s a huge bump up from the 55 hours a week of care Rondeau received before she was hospitalized with an infection on July 19.

The family has been allotted more than $130,000 this year so caregivers can be paid up to $21.90 per hour

Cheryl Rondeau, Crystal’s mother, said in January she couldn’t continue to manage her daughter’s around-the-clock care unless the 100 hours was granted.

“They wanted to send her home with only the 55 hours and I refused,” Cheryl said. “I told them I wouldn’t be opening the door for my daughter. She isn’t allowed to come here until she gets 100 hours per week.

“I asked them, “What will you do when Crystal is homeless?”

It still won’t be easy for Cheryl. She’ll be on her own providing care to her daughter for 68 hours a week.

“I will be working from 1 a.m. to 9 a.m.,” she said. “I’m the night person, seven days a week and 24 hours a day. But this is great news.”

Health Minister Uzoma Asagwara said Rondeau’s care team has worked “diligently to ensure she has the care that she needs.”

“Every patient’s care plan, and care needs, are different and are unique. It will always be dependent on their conversations with their care team. These are clinical decisions and clinical care plans that are designed to meet their needs.”

A spokesperson for the Interlake health authority said patients are evaluated to ensure getting health care at home is appropriate.

“Through these evaluations, it’s not unusual for home care hours to flex from client to client and throughout each individual’s use of home care services,” the spokesperson said.

“Clients are eligible for a maximum of 55 hours per week… clients who require services beyond the 55 hours to live in community are provided with information about alternative options specific to each client situation that will meet their care needs.”

Rae Metcalfe, Crystal’s doula and friend, will be in charge of scheduling and paying workers. They said they have already hired two people.

Metcalfe said, along with Crystal and her mother, they will continue the fight so people with disabilities can get the care they need outside of hospital facilities.

“At one point, they brought her a letter saying she had 24 hours to make the decision to leave the hospital and go to Riverview,” Metcalfe said.

“But, while everyone at the hospital knew she is extremely disabled, they just left the letter there. No one bothered to open it or read it out to her. Thankfully, Cheryl was nearby, but how could they do that?”

Cheryl Rondeau said she has asked for a meeting with the health minister.

“We know there are others suffering and others who are not being supported properly. We want change.”

kevin.rollason@freepress.mb.ca