Ken Rekowski has needed to make a house of his room on the Renfrew Victoria Hospital for many of the final 16 years.
The 53-year-old was first admitted in 2009 after a automobile crash left him with a severe mind damage. Since then, he is been ready for appropriate everlasting care locally.
“So far as I do know … I am cooped up in right here for the remainder of my life,” Ken stated.
When CBC visited in early February, Ken’s room nonetheless had a small Christmas tree to at least one facet, dog-themed decorations and a photograph of Ken along with his motorbike and canine Harley.
His twin sister Kareen says he spends most days completely in his mattress, though he can get round utilizing a wheel chair.
“I really feel like criminals have extra freedom than I do,” Ken stated.
Ken nonetheless desires of outings locally with household and pals and desires to start out a enterprise involving canine.
“I need to get again out into … the free world the place I can truly do one thing productive,” he stated.
Kareen says Ken is occupying a hospital mattress as a result of they have not been in a position get the required supportive look after him to reside in his hometown.
“With regards to acquired mind damage and particularly in a small neighborhood like ours, there actually is not any selection. We have to create decisions,” she stated.
Kareen stated all through Ken’s lengthy hospital keep, she’s nervous about him getting acceptable care in his neighborhood.
After a short placement in a neighborhood dwelling, Ken is once more dealing with a problem confronted by folks with acquired mind damage within the province: an extended unsure wait to be discharged from hospital.
First keep lasted 13 years
Ken was first hospitalized in January 2009. On the evening of the automobile crash, he was on his method to his job as a safety guard simply outdoors Renfrew, Ont. Highway situations had been poor and he misplaced management of his automobile.
Initially, docs thought Ken’s accidents had been so extreme that he would not survive. Kareen says the household was informed to plan a funeral.
Ken survived, however the crash left him with extreme cognitive and bodily impairments.
He has issues forming new reminiscences, will get confused about what 12 months it’s and suffers from a “right-side deficit” that leaves him with restricted mobility in his proper leg and just about none in his proper arm. He additionally requires a wheelchair.
In 2016, a crew of specialists in Hamilton, Ont., assessed him over three months and concluded he should not be taking on a hospital mattress. Again in 2019, Ken and Kareen had been informed it may very well be a “lifetime wait.”
Kareen stated the COVID-19 pandemic worsened the state of affairs. An infection management protocols decreased his entry to the helps Kareen had organized to keep up his cognitive and bodily well being.
In 2022, Ken felt renewed hope when he was provided a spot funded by Ontario Well being on the Pathways to Independence residence in Renfrew.
“They had been alleged to be an ABI [acquired brain injury] service supplier, which meant we figured the assist employees would perceive acquired mind damage. We anticipated a plan in place for Ken to fulfill his wants,” Kareen stated.
‘Locked up inside’
Hope light with time, nonetheless, as Kareen described an uphill battle to rearrange visits and outings with Ken. Kareen grew to become nervous mattress transfers weren’t being achieved correctly.
Total, Kareen felt the care did not mirror Ken’s private wants and — similar to on the hospital — he was being left in a chair for lengthy durations of time.
At one level, she found he’d been left in a recliner sporting pants soaked with urine.
“Quite than getting again out into the neighborhood once more, I used to be locked up inside in a wheelchair on a regular basis,” Ken stated.
CBC reached out to Pathways to Independence for an interview. Performing CEO Christie Swann supplied a written assertion and declined to share particulars on a “former resident,” citing confidentiality.
Swann stated the non-profit supplies residents with entry to a wide range of companies and trains employees in progressive mind damage training. She stated every crew member in Renfrew receives one-on-one coaching on mattress transfers and gear.
Kareen stated she complained typically and was in fixed contact with administration. She concerned a well being system navigator and even appealed to Ontario Well being to assist enhance Ken’s state of affairs.
Swann stated the group has “a radical coverage” for addressing consumer and member of the family complaints.
The Ministry of Well being stated it could not touch upon Ken’s case, but when a consumer is sad with how a supplier handles a grievance, the problem might be taken up with the Well being Providers Attraction and Assessment Board in addition to the Affected person Ombudsman.
Again in hospital
Kareen stated Ken’s knee was injured throughout a mattress switch on the morning of Could 23, 2024, and he was taken again to the Renfrew Victoria Hospital.
“It is devastating,” Kareen stated. “Ken would not need to be there. I do not need to be going out and in. Kenny’s pals do not need to go to him there.”
Kareen stated it has been troublesome to re-establish the helps Ken had in hospital earlier than he was despatched to Pathways. She has organized a assist employee to go to him Monday to Friday.
“I am coming in within the evenings and I am bringing him dinner,” Kareen stated.
“Ken must get out of the hospital. He is proper now just about spending … 24/7 in a mattress and that … that is inappropriate.”
After his hospital re-admission, Kareen tried going to Ontario’s Affected person Ombudsman to have the funding for Ken’s mattress transferred to a unique care supplier. She stated they did not need to return to Pathways.
“You’ve extra freedom in hell than you probably did with Pathways,” Ken stated.
In a letter from the ombudsman Kareen supplied CBC, the workplace stated funding points are outdoors their jurisdiction and she or he wanted to work with the hospital on a discharge plan.
The Renfrew Victoria Hospital declined to touch upon Ken’s case.
Ken’s case not remoted
The Ontario Mind Harm Affiliation stated others are dealing with equally prolonged and unsure wait occasions to be discharged from hospital. The province has 33 neighborhood dwelling properties for folks with acquired mind damage.
The system hasn’t improved since CBC reported on the Rekowskis six years in the past.
“Not a complete lot has modified. The federal government has invested in a number of additional beds in some locations,” affiliation president Ruth Wilcock stated.
“There’s an enormous hole nonetheless. It is one thing we do have to advocate for.”
She stated the affiliation additionally tries to assist purchasers and caregivers advocate if they’re having points with a house.
“It is not like, nicely, I stayed on this resort, I do not actually prefer it, I am happening the road to a different resort. That possibility is not there,” she stated.
“I believe the amenities attempt to do the very best they will, however we additionally know that they are quick funding on their finish.”
‘I have been by myself’
As for the Rekowskis, Kareen is reflective and resolute about their 16-year journey. Their mom, now 83, requires extra care, and Kareen desires to see enchancment from a system that has let her down repeatedly.
“What we’d like is person-centred care. Our well being system is absolutely in loads of turmoil and we have to change that,” she stated.
“In the end, I have been by myself and our household’s been on our personal.”
Kareen is reaching out on to service suppliers and attempting to rearrange housing so Ken can have each 24-hour assist and the autonomy he wants.
Ken is grateful that his sister hasn’t given up.
“With out Kareen’s assist, I might be completely in hell,” he stated. “She’s a blessing. From day one, she’s all the time been there for me.”
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