Ken Rekowski has had to make a home of his room at the Renfrew Victoria Hospital for most of the last 16 years.
The 53-year-old was first admitted in 2009 after a car crash left him with a serious brain injury. Since then, he’s been waiting for suitable permanent care in the community.
“As far as I know … I’m cooped up in here for the rest of my life,” Ken said.
When CBC visited in early February, Ken’s room still had a small Christmas tree to one side, dog-themed decorations and a photo of Ken with his motorcycle and dog Harley.
His twin sister Kareen says he spends most days entirely in his bed, even though he can get around using a wheel chair.
“I feel like criminals have more freedom than I do,” Ken said.
Ken still dreams of outings in the community with family and friends and wants to start a business involving dogs.
“I want to get back out into … the free world where I can actually do something productive,” he said.
Kareen says Ken is occupying a hospital bed because they haven’t been able get the necessary supportive care for him to live in his hometown.
“When it comes to acquired brain injury and especially in a small community like ours, there really is no choice. We need to create choices,” she said.
Kareen said throughout Ken’s long hospital stay, she’s worried about him getting appropriate care in his community.
After a brief placement in a community home, Ken is again facing a challenge faced by people with acquired brain injury in the province: a long uncertain wait to be discharged from hospital.
First stay lasted 13 years
Ken was first hospitalized in January 2009. On the night of the car crash, he was on his way to his job as a security guard just outside Renfrew, Ont. Road conditions were poor and he lost control of his car.
Initially, doctors thought Ken’s injuries were so severe that he wouldn’t survive. Kareen says the family was told to plan a funeral.
Ken survived, but the crash left him with severe cognitive and physical impairments.
He has problems forming new memories, gets confused about what year it is and suffers from a “right-side deficit” that leaves him with limited mobility in his right leg and virtually none in his right arm. He also requires a wheelchair.
In 2016, a team of specialists in Hamilton, Ont., assessed him over three months and concluded he shouldn’t be taking up a hospital bed. Back in 2019, Ken and Kareen were told it could be a “lifetime wait.”
Kareen said the COVID-19 pandemic worsened the situation. Infection control protocols reduced his access to the supports Kareen had arranged to maintain his cognitive and physical health.
In 2022, Ken felt renewed hope when he was offered a spot funded by Ontario Health at the Pathways to Independence residence in Renfrew.
“They were supposed to be an ABI [acquired brain injury] service provider, which meant we figured the support staff would understand acquired brain injury. We anticipated a plan in place for Ken to meet his needs,” Kareen said.
‘Locked up inside’
Hope faded with time, however, as Kareen described an uphill battle to arrange visits and outings with Ken. Kareen became worried bed transfers weren’t being done properly.
Overall, Kareen felt the care didn’t reflect Ken’s personal needs and — just like at the hospital — he was being left in a chair for long periods of time.
At one point, she discovered he’d been left in a recliner wearing pants soaked with urine.
“Rather than getting back out into the community again, I was locked up inside in a wheelchair all the time,” Ken said.
CBC reached out to Pathways to Independence for an interview. Acting CEO Christie Swann provided a written statement and declined to share details on a “former resident,” citing confidentiality.
Swann said the non-profit provides residents with access to a variety of services and trains staff in progressive brain injury education. She said each team member in Renfrew receives one-on-one training on bed transfers and equipment.
Kareen said she complained often and was in constant contact with management. She involved a health system navigator and even appealed to Ontario Health to help improve Ken’s situation.
Swann said the organization has “a thorough policy” for addressing client and family member complaints.
The Ministry of Health said it couldn’t comment on Ken’s case, but if a client is unhappy with how a provider handles a complaint, the issue can be taken up with the Health Services Appeal and Review Board as well as the Patient Ombudsman.
Back in hospital
Kareen said Ken’s knee was injured during a bed transfer on the morning of May 23, 2024, and he was taken back to the Renfrew Victoria Hospital.
“It’s devastating,” Kareen said. “Ken doesn’t want to be there. I don’t want to be going in and out. Kenny’s friends don’t want to visit him there.”
Kareen said it has been difficult to re-establish the supports Ken had in hospital before he was sent to Pathways. She has arranged a support worker to visit him Monday to Friday.
“I’m coming in in the evenings and I’m bringing him dinner,” Kareen said.
“Ken needs to get out of the hospital. He’s right now pretty much spending … 24/7 in a bed and that … that’s inappropriate.”
After his hospital re-admission, Kareen tried going to Ontario’s Patient Ombudsman to have the funding for Ken’s bed transferred to a different care provider. She said they didn’t want to go back to Pathways.
“You have more freedom in hell than you did with Pathways,” Ken said.
In a letter from the ombudsman Kareen provided CBC, the office said funding issues are outside their jurisdiction and she needed to work with the hospital on a discharge plan.
The Renfrew Victoria Hospital declined to comment on Ken’s case.
Ken’s case not isolated
The Ontario Brain Injury Association said others are facing similarly lengthy and uncertain wait times to be discharged from hospital. The province has 33 community living homes for people with acquired brain injury.
The system hasn’t improved since CBC reported on the Rekowskis six years ago.
“Not a whole lot has changed. The government has invested in a few extra beds in some places,” association president Ruth Wilcock said.
“There’s a huge gap still. It’s something we do need to advocate for.”
She said the association also tries to help clients and caregivers advocate if they are having issues with a home.
“It’s not like, well, I stayed in this hotel, I don’t really like it, I’m going down the street to another hotel. That option isn’t there,” she said.
“I think the facilities try to do the best they can, but we also know that they’re short funding on their end.”
‘I’ve been on my own’
As for the Rekowskis, Kareen is reflective and resolute about their 16-year journey. Their mother, now 83, requires more care, and Kareen wants to see improvement from a system that has let her down repeatedly.
“What we need is person-centred care. Our health system is really in a lot of turmoil and we need to change that,” she said.
“Ultimately, I’ve been on my own and our family’s been on our own.”
Kareen is reaching out directly to service providers and trying to arrange housing so Ken can have both 24-hour support and the autonomy he needs.
Ken is grateful that his sister hasn’t given up.
“Without Kareen’s help, I would be permanently in hell,” he said. “She’s a blessing. From day one, she’s always been there for me.”
