Updated: Aug 13, 2021
The love and support of Irek Wegiel's family has gotten him through life in the uncaring George Pearson Centre (Photo: Agnes Cayer)
By Spencer van Vloten
August 11th, 2021
Irek Wegiel lived a fun and fulfilling life, but ALS eventually left him in need of constant care. Assured he'd find the highest quality of care at Vancouver's George Pearson Centre, he instead found himself neglected in an institution short on compassion.
Only through an unconditional bond with his family has Irek found the strength to continue in a place where he fears for his life.
SIGN NOW: Petition to Improve Irek's care
Andrew Wegiel makes the trip 6 days a week.
From his home off Marine Drive in Vancouver, he travels 35 minutes to George Pearson Centre.
The drive there's unremarkable. A lot of grey roads and passing vehicles; not a lot of interesting sights or scenic views.
But this trip means everything in the world to Andrew, who's going to visit his son Irek, 48, a resident of the South Vancouver long-term care centre.
Irek Wegiel was a man of many talents.
A chef, a martial artist, a jokester who loved to make people laugh and smile. He volunteered extensively and even won an award for chasing down and disarming a man who’d carried out a knife attack.
In his sister Agnes’s words, “it’s because of him that I am who I am.”
But while Irek was entering the prime of his life, ALS began to slow him down. In his mid-20s he started losing his balance, by his early-30s he relied on a wheelchair, and by 35 he was bed-ridden, and unable to care for himself.
Irek was a martial artist, an outdoorsman, and still is a hero
Needing constant support, in 2008 he was moved to George Pearson Centre for long-term care.
Irek and his family, who emigrated from Poland, knew little about Pearson, but were reassured that he'd get the care he needed there—not simply care, but the highest quality of it.
Having faith in people to mean well and do good, Irek and his family placed their trust in the staff at Pearson, and were counting on them to help him live the best life he could.
When Andrew arrives at George Pearson Centre, he parks, then heads straight to room 220, where he finds Irek in bed.
Though still with a sharp mind, ALS has taken its toll, and Irek can move little other than his blue eyes.
Andrew greets his son warmly with a smile, sits with him for few minutes, and then begins the routine that he’s performed nearly every day for the last decade.
He scrubs Irek clean, from behind his ears to between each toe. He shaves along his jawline, lathers and rinses his hair and face, trims his fingernails and toenails.
Then he empties Irek’s urine bag, as well as the suctions that drain saliva from his mouth—which builds up because Irek can’t swallow.
Andrew doesn’t do this because he enjoys it; he’d rather just sit and visit with his son, watching Irek’s favourite cooking shows together on the overhead TV.
He does it, in his 70s and without medical training, because otherwise these things don’t get done: the staff paid to provide Irek’s care show no compassion or indication that they're concerned about his well-being.
Irek and mom Grace (left; photo by Ben Nelms) and with father Andrew, Grace, and sister Agnes (right; photo from Agnes Cayer)
Irek receives support from other loved ones too—in fact it’s a family affair with the Wegiels. Mom Grace visits nearly as much as dad does, helping with everything she can.
Sister Agnes, BC's paramedic of the year in 2015, visits often and is a tireless advocate for her brother, who she worries about constantly.
And that worry has grown substantially after a series of disturbing incidents over the years, which left Irek confiding that he doesn't feel safe in George Pearson Centre.
Irek’s family noticed problems from the beginning of his time in Pearson.
It became apparent that unless they visited, his hygiene and comfort suffered considerably.
He'd be left unwashed for days, the oil building up in his hair and on his body until sores formed. He'd be placed in his wheelchair unclothed and in uncomfortable positions, left as such all day.
And these were just the smaller incidents; others were much more worrying.
One day, Andrew came into his room for a visit, and his ventilator wasn’t working properly due to a kinked wire. Irek, who needs the ventilator to breath, was blue and suffocating, but staff had done nothing about it.
Another time, Irek was left covered in blood after a catheter was inserted improperly. Agnes, on paramedic duty for the day, would be the person to transport him to the hospital, one of the toughest things she says she’s ever done.
Irek's hygiene and comfort suffered once he entered George Pearson Centre (photo: Agnes Cayer)
And then there were the constant infections that his family begged to be treated, only for the manager to walk past and ignore their pleas.
But worst of all was the burn.
The call wire connected to Irek’s finger, which he uses to signal emergencies, broke. A sizzling short-circuit was sent through his finger, burning him for an agonizing 4 hours before his parents arrived and discovered it.
Pearson never gave the family an apology or explanation, but what Irek did get was 2 large, gnarled scars, painful reminders to his family of what happens when they can’t be there.
It was shortly after this incident, using his communication board, that Irek confided to his family that he didn’t feel safe at George Pearson Centre, and that he just wanted to stop being harmed there.
The trust that Irek and his family had once placed in Pearson had evaporated; now, there was just fear.
WE LOVE YOU
Once Andrew’s finished performing Irek’s daily care, he takes him in his wheelchair for a walk through Pearson.
The halls are gloomy and grey, the paint chipping and showing its age, but this walk isn’t about the view; it's about the time father and son get to spend together.
As Andrew wheels Irek, he turns on a portable radio playing his son’s favourite songs, and entertains him with stories: stories about history, stories about current events, stories about family and the little humours of life.
For Andrew, this time with his son is the highlight of the day, but the emotional burden of Irek being in Pearson is always there and is leaving its mark.
His blood pressure has risen and he now requires medication to control it, he can no longer sleep at night, and the constant worry ages him faster each year. But, he's happy he still gets to have these moments with Irek.
He can no longer sleep at night and the constant worry ages him faster each year. But, he's happy he still gets to have these moments with Irek.
An hour later Andrew and Irek finish their walk and head back to room 220. They watch TV together for a bit—Irek’s favourite cooking shows of course—and then it’s almost time to say goodbye.
Andrew makes sure the camera in the room's set up properly. The family installed it to keep an eye on Irek at all times, but staff routinely cover it with a towel, cutting off the one view they have of Irek when they're not with him.
Once the camera has been checked, Andrew stays by Irek's side for another few minutes, not saying anything, just enjoying each other’s presence. Then Andrew finally starts to speak, repeating the words he says at the end of each visit to George Pearson Centre:
“We love you, we pray for you, we’ll be watching over you—and we’ll be right back here with you tomorrow.”
With the power of that message, and the unbreakable bond between father and son, Andrew draws a smile from Irek.
He smiles back, and heads out for the day.
As always, it will be a long drive home, one that seems much longer than its 35 minutes.
But Andrew Wegiel will do the 70-minute roundtrip again tomorrow, and the next day, and the one after that, because he loves his son, and knows that he deserves a much better life than the one George Pearson Centre has given him.
SIGN NOW: Petition to Improve Irek's care
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to firstname.lastname@example.org!