A Winnipeg woman suffering from a progressive paralyzing disease says she's not getting the home care she needs, leaving her family to pick up the slack left by Manitoba's health system.
John Morrison with his wife, Connie Calhoun, who requires round-the-clock registered nursing care.
Connie Calhoun has amyotrophic lateral sclerosis, a fatal neuromuscular illness commonly known as Lou Gehrig's disease.
ALS, which affects about 150 Manitobans, causes nerve cells to degenerate, eventually immobilizing and killing its patients, usually within a decade.
"You just get more and more paralyzed and more and more of your muscles shut down, and then eventually, you die," said John Morrison, Calhoun's husband.
Calhoun was diagnosed with ALS in 2000. By 2005, her condition had deteriorated to the point that she needed a tracheotomy and a ventilator to breathe and spent a year in hospital.
Eventually, she was allowed to return home. Today, she uses the ventilator, gets around in an electric wheelchair and speaks through a computer.
She requires round-the-clock registered nursing care from the Winnipeg Regional Health Authority, but her family says she's not getting that care.
"They said that there would be shifts that would be missed. But they didn't say that it would be 25 hours a week," said Morrison.
Nurses have missed more than 530 hours of shifts this year — the equivalent of more than 22 full days, Morrison said.
Connie Calhoun and John Morrison with daughter, Claire, in 1994, before Calhoun was diagnosed with ALS.
That leaves Calhoun's home care up to him, on top of working, raising two children, aged 11 and 15, and keeping the house.
"When it's not there, it's very difficult for us to have a family life," said Claire Morrison, Calhoun's teenage daughter.
Consider care facility, suggests WRHA
The Winnipeg Regional Health Authority acknowledges there is a shortage of home-care nurses, and says the authority is actively trying to recruit more.
Officials do tell families to prepare for missed shifts, but WRHA officials say in cases like Calhoun's, hospital care may be a better fit.
"Our home-care program is designed to support family members for caring for their loved one at home," spokeswoman Heidi Graham told CBC News.
"When we have an assessment of a client and we discover in our assessment they need 24 hours a day, seven days a week [of] registered nursing care, we encourage the family to consider placement in a long-term care facility."
That's not something Calhoun's family wants.
"For Connie, being institutionalized means that that's the last time that she ever sees her children in their natural setting," John Morrison said.
However, it's a harsh reality, and one the family is being forced to consider.
"I want to live with my family, but not at the expense of John's health," Calhoun said though her computer.