When Denise Marshall's 90-year-old mother went into hospital with pneumonia in early 2015, she didn't think it would kick off a months-long ordeal sorting through a "sad, confusing, frustrating maze" to find long-term care.
Marshall is a lawyer who lives in London. In February 2015 her mother went into Trillium Health Partners hospital in Mississauga with pneumonia. At the time, Marshall's mother was living with Marshall's brother in Mississauga.
After six weeks at Trillium, it was clear Marshall's mother couldn't go back to her son's house after she was discharged. An assessment revealed that her mother's care needs — she is diabetic and uses a wheelchair — had increased to the point where she required around-the-clock care in a long-term care home.
And so began Marshall's search for a home in London for her mother.
It's a complex process that requires researching and naming five preferred homes, then being ready to accept an offer and move her mother almost immediately should a space open up.
Meanwhile, her mother was in an acute care bed in Mississauga, with nowhere else to go and nothing to do but wait.
It was about this time Marshall began to hear the term "bed blockers." It's a pejorative term hospital staff sometimes use behind closed doors to refer to someone who's been designated for a different level of care, but who has no where to go.
"There was a lot of pressure to discharge her home, for us to try to make it work at home," Marshall told CBC. "Even though the assessment was that she needed 24/7 monitoring."
Sending Marshall's mother home while she waited for long-term care wasn't an option. Her mother is a wheelchair user, and the bathroom in her son's Mississauga house is on the second floor. Marshall works full time and can't afford 24-hour in home care. The few hours of home care a day being offered would not meet her mother's needs.
During those months, Marshall spent her week working and researching homes in London and travelling to Mississauga on weekends to visit her mother, whose condition was deteriorating.
Meanwhile, Marshall had trouble getting basic information about the progress of a process she describes as complex and convoluted.
"Every week when I went [to Mississauga] and visited with my mom she would say to me 'Why am I still in the hospital? I could never say 'It's only going to be a few more days' because I had no indication how long the wait would be."
The process was made more difficult because she was dealing with Community Care Access Centres (CCACs) — which co-ordinate home care — in two different jurisdictions.
"Each CCAC told us that the other should be our primary point of contact," said Marshall.
The situation continued for six months. Finally a bed opened up at Chelsea Park in London. Her mother is now getting good care but Marshall said negotiating the process of getting her in a long-term bed while fending off pressure to move her out of the hospital was complex and exhausting.
She often got conflicting information.
"The whole experience left us disheartened, enraged, and exhausted," she said in a note to CBC London. "It left [my mother] wondering if this was fair payment for a lifetime of working hard, paying taxes and contributing to her community. It made her feel exactly as you would expect the label 'bed blocker' to make someone feel."
Marshall's story is a familiar one to Jane Meadus, a lawyer with Ontario's Advocacy Centre for the Elderly, a legal clinic for low-income seniors.
'It's a real mess'
Meadus said it's unfortunate that a six-month wait is not considered a bad outcome in a system she said is bursting at the seams due to a lack of care beds.
"It's purely a numbers game. There's not enough beds for seniors to go to," said Meadus. "It's a real mess."
She said too often families feel they're being forced to discharge seniors into an unsafe situation.
"It's the number one problem, the biggest complaint we see," said Meadus. "The senior sitting in the bed is seen as the problem when in fact the problem is the failure of the province to provide enough long-term care."
She advises that families read this document on the Advocacy Centre for the Elderly website which outlines their rights in discharge situations.
The problem has been flagged by Ontario's auditor general. The 2012 report said 15 per cent of all wait list clients die before getting an LTC bed. Also, wait lists varied widely by region and clients able to pay for private or semi-private rooms were generally placed more quickly. Marshall, however, did pay for a semi-private room and still had the six-month wait.
The same report points to numbers that suggest the problem will only get worse. Ontario's population of people aged 75 or older is expected to grow by almost 30 per cent by 2021.