KESWICK, Ont. — An elderly Ontario couple is finally living under the same roof after being forced to spend most of the past two years apart.
The Clelands — Robert, 90, and Elizabeth, 84 — were reunited Wednesday after he was finally given the green light to move into her long-term-care home from his, two hours away.
Consequences of old age, failing health and an overburdened long-term-care system had pulled the couple apart.
Until April 9, 2013, they had lived together in an apartment in Orillia, where Robert was caregiver for Elizabeth, his wife of almost 63 years who has dementia.
A knock at the door that day set off a turn of events that would separate the pair for the next 23 months. He got up from his chair too quickly and his legs gave out from under him. Next thing the retired architectural draftsperson remembers is waking up in Soldiers' Memorial Hospital with a broken hip.
Even though the province's long-term-care system has a reunification program that is supposed to give priority placement to spouses, the Clelands have spent most of the time since that day in separate homes — Elizabeth at Cedarvale Lodge in Keswick, Ont., and Robert 150 kilometres away at Hope Street Terrace in Port Hope.
Their story highlights some of the biggest problems in Ontario's health system. It's struggling to meet the needs of a growing population of seniors. There are 23,457 people on waiting lists for long-term care, most of them seniors. There are 76,535 beds in 627 homes, which usually only become vacated when somebody dies.
"The wait list for a bed is a challenge," concedes Jo-anne Marr, CEO of the Central Community Care Access Centre, one of 14 CCACs across the province that co-ordinate admission into long-term care and the one that covers the Keswick area.
"Having people separated for that period of time is really unfortunate and sad. I'm just very glad to hear that as of (Wednesday), they were reunited in Cedarvale, so that is really good news," she adds.
Because of population growth, the long-term-care squeeze has hit the Central CCAC harder than most other parts of the province. It has 3.8 beds for every 1,000 residents, compared to a provincial average of 5.8.
Elizabeth, a retired church secretary, was unable to care for herself because of her dementia, so soon after Robert landed in hospital, she moved into the Keswick long-term care residence, close to the home of their daughter, Sharon Lindale.
Robert underwent surgery to repair his broken hip, but when it came time to be discharged, there was nowhere for him to go. His children — Sharon and brother Doug Cleland who help take care of their parents' affairs — didn't feel he was strong enough to live on his own and had given up his apartment.
Robert's health declined following the surgery. There were two close calls when family members were called to his bedside at the hospital because of concerns he wouldn't make it. When he was discharged, he needed a walker.
Nevertheless, hospital officials insisted he was capable of living on his own and didn't need long-term care, Sharon says.
That left her puzzled because about six months earlier, the North Simcoe Muskoka CCAC had assessed him and deemed him frail enough to require long-term care. He was placed on a waiting list for some homes, including the one in Keswick.
"This is unbelievable. They try to bully you," Sharon says. "They told us he did not qualify for long-term care and could go home. I said he didn't have a home. They told us they were going to put him in a homeless shelter if we didn't come and pick him up and take him to one of our homes."
Sharon considered taking her father into her home, even though she doesn't have a spare bedroom and there was no one available to care for him during the day.
Jean Meadus, a lawyer with the Advocacy Centre for the Elderly, bristles when she hears stories like this. She says seniors who are on waiting lists for long-term care are too often sent home from hospitals, even when it's not safe.
Hospital spokesperson Terry Dyni said in a statement that he couldn't speak to the specifics of Robert's care two years ago. But he explained that, at the time, the hospital was in the early stages of adopting a "home first philosophy" aimed at identifying options for patients who no longer require hospital care.
"The identification of options can be difficult for families, especially when they become aware of the potential lengthy waits to get into their preferred facility. I strongly encourage families with elderly parents to pre-plan as early as possible for the day that mom and dad won't be able to live on their own anymore," he wrote.
The North Simcoe Muskoka CCAC declined to respond to specific questions about Robert, citing patient confidentiality.
The Keswick home and two others that Robert had chosen had no openings, so Sharon says she was told by a CCAC official to add two more nursing homes to her father's list. She says she felt pressured to send him to the Port Hope home, even though it was far away from family, because it had an opening.
Meadus says she routinely hears from families like the Clelands who have been misinformed and pressured to move loved ones into homes with short waits.
"These consents are based on misinformation and they are not legal. This is how people end up getting stuck in places where they don't want to be," she says.
Applicants are entitled to choose fewer than five homes if they wish, they don't have to choose homes with short waits, and they don't have to take the first bed that becomes available, Meadus explains.
But Marr says the Central CCAC encourages people in need of long-term care to choose five homes and to choose homes with short waits.
"The more choices you have and the more flexible you are, then the shorter the wait. The reality is, we can't make people go anywhere. They do get a choice," she says.
Waits for homes vary because some are more desirable than others. Newer homes with private and semi-private rooms are typically more desirable than older ones with ward-style rooms shared by four residents.
Marr says waits are also affected by the care needs of residents, the size of the home and gender. The Keswick home is small with only 60 beds and a low turnover. It also has fewer male beds than female beds.
The average wait for a bed in Keswick is about a year, but these other factors contributed to making Robert's wait longer, Marr explains.
After being discharged from hospital, Robert moved to an assisted living facility in Orillia for a few weeks. He was transferred to the Port Hope nursing home on Aug. 12, 2013 with the understanding the move would be temporary, Sharon says.
"When he was discharged from hospital, they told us the wait to get into Cedarvale would be six weeks to three months. If we had known it would take this long, we never would have agreed," she says.
In a telephone interview last week, Robert says the wait has been difficult.
"They keep saying we will be together again. Sometimes I want to give up," he said.
He has seen his wife only twice in the past two years during brief trips to Keswick. The last time was at Christmas in 2013. The long drive is too uncomfortable for him.
Each time, her dementia was a little worse.
"She seemed to know who I was. She said she loved me but she couldn't remember my name," he said.
Meantime, Robert's health has been getting worse, too. His children feared the reunion would never happen.
On March 9, he was taken to an X-ray clinic, where it was revealed he had broken his hip again.
Robert was taken by ambulance to Northumberland Hills Hospital in Cobourg, where he stayed for nine days. There was talk of transferring him to Kingston General Hospital for surgery but that never happened.
Robert said he has been in significant pain despite being on painkillers.
During his hospital stay, the Central East CCAC, which covers that part of the province, twice informed the family a bed had opened up in Keswick, according to his son, Doug.
And both times, the Keswick home denied the move, he says. Because of outbreaks of respiratory or gastrointestinal illness at the Port Hope home, officials did not want to risk spreading the bugs to the Keswick home.
Out of desperation, Sharon recently sent an email to the Toronto Star, pleading for help.
The Star began making calls on the story just over a week ago.
Last Tuesday, the family was once again told a bed had become available in Keswick. This time, the offer turned out to be real.
Sharon says her parent's reunion was bittersweet. Robert is in incredible pain and in need of surgery and Elizabeth's dementia is now quite advanced.
"I don't know that she really knew him but she was more alert and awake than I had seen her in a year," she says, adding that she wonders whether there would be more recognition if there hadn't been such a long absence.
But for Robert, it didn't seem to matter. As family and staff looked on with tears in their eyes, he spoke to his wife for the first time in more than a year.
"He looked at her really lovingly and said, 'You look really pretty. You don't know who I am, do you?' She just smiled," Sharon says.
Doug says his father was overjoyed.
"When I left them, they were sitting together at a table and he was just staring at her. He was so happy."