Confined to bed in the same room for all of the past four years, apart from medical appointments and hospital stays, a Thompson resident who recently got on the waitlist for two personal care homes says the admission process can’t move along quickly enough.
Vince Guay, 47, has been living in one bedroom of a two-bedroom apartment at Harmony House since his spinal condition, ankylosing spondylitis, robbed him of the ability to walk about four years ago.
“I’m literally living on my bed,” he said, a hospital-style bed provided through home care. “The only thing I’ve got is TV and all I can do is look out the window at the sky. That’s a poor quality of life right now.”
Guay recently got on the waitlists for both Northern Spirit Manor personal care home in Thompson and Prairie Mountain Health’s Fairview personal care home in Brandon.
Information provided by the NRHA shows that there are currently 12 people on the Northern Spirit Manor waitlist, including four who are living in other long-term care facilities within the region. Northern Spirit Manor has 35 beds. The larger Fairview personal care home, which has 248 beds, has a waitlist of about 40 people, though a PMH spokesperson said the number is fluid and changes as people come on or off the waitlist.
Though some people might see moving into a long-term care facility as a loss of independence, to Guay it would represent a gain. Unable to walk or even to get put of his bed and into the electric wheelchair currently in his living room — “it’s just sitting in there collecting dust” — the only time he gets out of his bedroom is when he has medical appointments, to which he is transported too and from in an ambulance.
“It does feel like a small world,” he says of his bedroom. He also says he feels bad about tying up an ambulance and potentially preventing it from attending to a life-and-death emergency.
One of Guay’s main concerns about his current living situation — a friend of his from Brandon stays with him for a few weeks at a time while doing carpentry work in Thompson, but then is gone for at least a week — is the thought of a fire breaking out in the middle of the night and being unable to escape.
“I’m screwed,” he says. “I won’t be able to get out and nobody is going to come and help me either to get out. I’m really, really concerned about that. That’s my number one concern is my safety.”
It is difficult to protect himself in other ways too, he said, noting that three people he thought were friends and one family member have taken advantage of him during his illness, stealing property from him because they know he can’t do anything to stop them. One of those people faces a criminal charge related to such a theft, Guay says.
Being a shut-in is taking a toll on his mental health as well, says Guay, who used to work at the Thompson Citizen on a casual basis, stuffing flyers and helping to deliver papers twice a week, and also had a DJ business for 24 years, from 1993 to 2017.
“Because of this, I had to retire unfortunately.”
His condition, an inflammatory disease that can cause vertebrae to fuse and give people who have it a hunched posture, developed gradually over the past decade or so, leaving Guay unable to walk since 2019.
“Basically your spine like turns into bamboo and you can’t move very well or walk or anything.”
Before the disease progressed, in addition to his work as a DJ, he enjoyed being outside walking or fishing, or even just taking a drive.
“That’s the number one thing I miss is driving,” he said, recalling the day he had to surrender his licence. “That was a sad day for me. I had all that taken away because of this disease.”
Without mobility, Guay’s opportunities for social interaction are extremely limited. When his friend isn’t staying with him, the only other people he regularly sees are home care workers who come to his apartment four times a day to ensure that he has water and snacks on his bedside table and to empty his urinal and bedpan.
Sometimes, however, he doesn’t even get that much human contact, as there can be shortages of available workers during holiday periods like Christmas and New Year’s.
Back in early April, Guay was supposed to have a surgical consultation in Winnipeg but transportation couldn’t be arranged in time and he was unable to attend the appointment.
“I was so upset,” he recalls. “I felt like a nothing.”
Afterwards, he says, he shut down for a week, turning off his cell phone and not wanting to do anything. Sometimes, moments like that have led him to acts of desperation.
“A couple of times I even tried to hurt myself, it’s been so bad,” Guay says. “Looking at these four walls 24/7 is going to get to you, you know?”
Though it’s taken a long time, he has some hope that because he is now on personal care home waitlists that someday he may find himself in a better situation.
Guay’s first choice is to move to Fairview in Brandon, since he has a friend in the community.
“I want to get out of Thompson because it’s so bad here to live,” he said.
Getting onto Fairview’s waitlist required getting a panel application and assessment to ensure he met the criteria for personal care home admission and that the care he needs can be provided there and is not available in another setting, said the PMH spokesperson.
“There are circumstances in which an individual will be given priority placement into PCH, such as veterans who qualify for priority bed admission as determined by Veterans Affairs Canada,” the spokesperson told the Citizen.
An NRHA spokesperson said that first priority at care homes in the region is given to those who are currently in acute care beds and those who are at risk in the community, with consideration also being given to factors such as how long the prospective care home resident has been on the waitlist and whether or not their first choice is a different PCH.
“Being in the hospital, in an acute care bed, is not necessarily going to move someone to a PCH bed more quickly,” the NRHA spokesperson advised.
Guay says he doesn’t have close family to help him advocate for his health care needs and limited ability to meet with people who might be able to help him.
“It’s a sad situation.”
For now, there’s nothing Guay can do but watch TV and look out his bedroom window at the uninspiring view.
“I’ve just got to wait for the one phone call,” he says.