The 69-year-old father of three and grandfather of six has multiple system atrophy, a rare ailment that first surfaced in 2001.
“I noticed Wayne started scuffing his feet . . . and then he started going down, being sad,” Dawn Collins, his wife of 46 years, said in an interview Sunday.
Speaking at the Queen Elizabeth II Health Sciences Centre in Halifax, she said her husband was always a healthy, active man who kept busy with things such as gardening and carpentry until he got sick.
He wasn’t diagnosed until seven years after the symptoms surfaced.
Wayne watched the interview from his wheelchair. He is unable to speak, but the disease doesn’t strike the brain.
He worked as a stoker in the engine room on several ships during his five years in the navy. His navy career ended in 1967, but during that five-year period, he often came into contact with carbon tetrachloride, a cleaner and degreasing agent.
Family members strongly believe that exposure led to his sickness and they have tried to get support from Veterans Affairs Canada for his treatment.
Last week, family members heard their second appeal for assistance was denied. They have since appealed that decision. A Supreme Court of Canada challenge is their final option.
Wayne has been in hospital since a bout of pneumonia in mid-January and has been on a waiting list for a spot in a nursing home.
His wife said a nursing home would be better than the hospital, but she added that the family would prefer to have Wayne home.
“It would make his life a little more bearable because he is so sad in here. He broke down crying last week that he wanted to go home to die.”
She is also unhappy to see her husband in hospital.
“I cry all the way in, and cry all the way home, and I know he’s not going to get better.”
The family spent a lot of their savings —$30,000 — on stem-cell treatment in Germany in 2009. The treatment isn’t offered in Canada, Dawn said.
The treatment gave her husband increased mobility for a year and family members have no regrets about it.
Dawn said she can’t afford to pay for at-home nursing and is getting charged $99 for each day her husband is in hospital. She said that fee is being imposed because her husband doesn’t require immediate medical attention.
She can’t look after him at home by herself.
“I couldn’t lift him out of that chair or drag him to a bed.”
Veterans Affairs has told the family there isn’t enough proof that Wayne’s condition was caused by carbon tetrachloride exposure.
However, the department’s recent rejection letter said Wayne’s condition is so rare it is hard to establish a definitive relationship linking it to any toxins.
The letter doesn’t rule out the chances that the chemical and disease are linked.
The couple thinks that fact should qualify them for coverage under Veterans Affairs’ benefit-of-the-doubt clause. It says veterans should receive support if evidence suggests something like this is a possibility.
Sackville-Eastern Shore MP Peter Stoffer, the veterans affairs critic for the NDP, agrees with the couple. Stoffer said he believes bureaucracy and financial pressures are cheating Wayne out of support.
“There is medical evidence supporting what they’re saying.”
Stoffer, also at the hospital Sunday, said he intends to see what happens with the couple’s final appeal before he takes the case to Veterans Affairs Minister Steven Blaney.
Another family supporter, Bill Maguire of Vet for Veterans, said it will cost the family at least $30,000 to hire a lawyer to handle the case.
Maquire said Wayne does not qualify for palliative-care support because he doesn’t have a doctor’s note telling Veterans Affairs he has less than six months to live.
As for hospital costs, Maquire said Veterans Affairs normally only pay hospital costs for stays of up to 30 days. Longer stays are decided on a case-by-case basis, he said.
Original Article
Source: the chronicle herald
Author: DAN ARSENAULT
No comments:
Post a Comment