Two-year wait for special wheelchair
Can’t reach upstairs bath of Dollard home, which rules out hot showers
Andrea Lavoie hasn’t had a hot shower in close to two years.
Since being released from a rehabilitation centre following spinal surgery almost two years ago, she’s been confined to a wheelchair, sleeping in a bed set up in the living room of her Dollard-des-Ormeaux home, using a commode toilet set up in the kitchen and giving herself sponge baths in the kitchen sink.
“It’s embarrassing, not to mention unsanitary,” Lavoie said.
Lavoie has been waiting all this time for approval for the financing of the $16,000 stair-chair from the Société d’habitation du Québec’s Programme d’adaptation de domicile (PAD). She was first told the wait would take six months, then one year, then two years.
Last week Lavoie was contacted by the company that does the technical drawings for home adaptations and given the green light to prepare for the arrival of a stairchair that will allow her access to the second-floor bathroom and master bedroom.
“I calculate I will be taking my first hot shower in April, just shy of two years,” said Lavoie, 48.
Four years ago, Lavoie was an active and happy newlywed with a full-time job in the sports and recreation department for the borough of Pierrefonds-Roxboro.
Her navigation of the tangled health-care system began in June 2012 when she began to experience acute lower back pain and numbness in one leg.
She visited clinic after clinic, trying to get a diagnosis. After four months of misplaced paperwork, unanswered calls and fruitless visits to emergency wards and doctors’ offices, her husband, Patrick Legault, finally used his private insurance to book an MRI that revealed a tumour growing in the thoracic region of her spine.
More misplaced paperwork and unanswered calls later, she was told she needed surgery but the surgeon broke his wrist, putting off the surgery for six weeks. By that time it was December 2012. In March 2013, while still waiting for her back surgery, Lavoie received a diagnosis of breast cancer.
Coordinating the back and breast surgeries became a priority, but her telephone calls to the surgeon’s office went unanswered.
By this time, the pain in her back and abdomen had worsened and spread to both legs. Her medical leave ran out and she lost her job.
In April 2013, she was finally sent to Dr. Jeffery Hall at the Montreal Neurological Institute. Hall told her that there was no reversing the damage already done and explained he would have to cut into the spinal cord to remove the mass. She was told she was one of only 12 people in the world with this type of tumour.
In May 2013, she walked into the hospital and, after eight hours of surgery, she was transferred to her hospital bed a paraplegic, which was the expected outcome. Lavoie spoke glowingly of Hall calling him, “the best doctor I’ve ever seen. For all my misfortune I hit the lottery with Dr. Hall.”
She spent nine months at the Montreal Neurological, recovering from the spinal surgery and three breast surgeries. And time was spent at rehab facilities. When she voiced concern at one rehab facility that, once home, she wouldn’t be able to access the bathroom on the second floor, she was told she could use the hose in the garage. In the winter, with no hot water, she questioned, wryly.
During the wait to hear from PAD, the couple stopped inviting friends over because the living room was her bedroom and the kitchen was her bathroom. Selling the house didn’t make financial sense because they’d only owned it for 18 months before Lavoie had to take medical leave. When medical leave ran out, they lived on one salary. Their savings were depleted.
The wait was so protracted, she ended up having to go through the entire application process again because her file was deemed outdated.
In October 2015, Legault wrote to Quebec Finance Minister Carlos Leitão, who is also their MNA for Robert-Baldwin, detailing his wife’s plight.
“She fights to maintain basic needs most of us take for granted,” Legault wrote. “For the last three and a half years, she has fought to maintain her quality of life. As for me, I have had a ringside seat to watch the person that I love most suffer, with an inability to change or stop this suffering.”
Lavoie had lost her independence, her clothes didn’t fit anymore, she was alone for long hours and it took forever to do even the simplest task.
In late January, she reached her breaking point and was sitting in the living room thinking very dark thoughts when Legault came to sit with her and talk it through. He managed to lift her spirits and even got her to laugh.
“Had he ignored me that day, I don’t know what I would have done,” Lavoie said. “My husband loves me. I am so lucky to have married the right guy.”
Having a stair-chair won’t bring back her former life, but it will make the untenable mercifully manageable.
“It’s almost like starting a new life,” Lavoie said. “It’s hard to create a sense of intimacy with your husband when you’re living like roommates.”
Société d’habitation du Québec spokesperson Sylvain Fournier said wait times for help from PAD are decreasing slightly every year. He also said wait times for home adaptive financing can vary depending on where you live in the province.
In 2015-2016, the average wait time in the Montreal region is 25.9 months compared with the provincial average of 22.4 months. In 2014-2015, the wait time for the Montreal region was 26.5 months versus the provincial average of 22.6 months. In 2013-2014 the Montreal-region wait was 28.5 months and the provincial average was 23 months.