‘The doctor said it is a cruel disease, because there is no answer for it,’ says Jim Holton, 72, referring to dementia. He’s shown with his wife, Mary Lynne Holton. (Jean Delisle/CBC)
The family of an Ottawa man who has dementia says he’s owed more than $18,000 in Old Age Security (OAS) payments he never received because his illness prevented him from filing the correct paperwork.
Retired teacher Jim Holton, 72, has posterior cortical atrophy (PCA), a rare form of Alzheimer’s disease that makes it difficult for the brain to process visual information.
Holton’s family says the early onset of his PCA made it impossible for him to fill out the application forms for OAS in 2011, when he turned 65. So far, the federal government, which administers OAS, has refused to budge.
“Honestly, it feels like the government is discriminating against my father because he has dementia,” said Tara Lockhart, Holton’s daughter.
Mary Lynne, second from right, has enlisted the help of daughters Tara Lockhart, left, and Laura Holton to help Jim get the OAS money the family feels he’s owed. (Jean Delisle/CBC)
Born in England
Normally, OAS payments kick in automatically when a recipient turns 65. But because Holton was born outside Canada, he had to submit special forms and documents — a requirement the government removed only in 2013.
At the time, Holton was exhibiting subtle signs of the degenerative brain disease, becoming forgetful and less eager to take part in activities or finish projects, his family said.
It was in a way like a death in the family, only it’s a slower, longer grieving process.– Mary Lynne Holton
Early symptoms of PCA include lack of judgment, apathy and the inability to understand written language. Eventually, most sufferers will require 24-hour care.
Holton’s wife, Mary Lynne Holton, remembers the moment at the family cottage when she knew her husband was in trouble.
“I gave him a hammer and a board to nail on the end of the dock,” she said. “He didn’t have a clue what to do with the hammer.”
After a series of tests, he was diagnosed with PCA.
“It was a very emotional time, very traumatic,” she said. “It was in a way like a death in the family, only it’s a slower, longer grieving process.”
In 2014, she stumbled upon a stack of unopened mail and discovered her husband had been neglecting the household finances and had failed to make a number of payments.
A visit to the bank also revealed he hadn’t been receiving his OAS payments, despite having turned 65 two years earlier.
Mary Lynne Holton contacted Service Canada, believing there would be an easy fix. There wasn’t.
In 2015, Holton filled out the OAS paperwork, and was told because her husband hadn’t filed the paperwork when he turned 65 in 2011, he’d lost the intervening years of payments. The government agreed to give the family one year of back pay, but not all of it. The family said it’s owed more than $18,000.
“Service Canada was the opposite of helpful,” said Laura Holton, another daughter. “They made it very stressful for my mom.”
The family appealed the decision and included a letter from Dr. Andrew Frank, a cognitive and behavioural neurologist with the Bruyère Memory Program.
“The condition made it impossible for the patient to file his application for Old Age Security Pension in 2011,” Frank wrote.
Neurologist Dr. Andrew Frank, in his office at Bruyère Memory Program, says that as the number of Canadians with dementia rises, both government and private institutions should show more leniency. (Sandra Abma/CBC)
On May 2, the family learned their appeal under the incapacity provision had been denied by the Social Security Tribunal.
In a letter to the family, Service Canada explained, “It is not until [dementia patients] have lost all the ability to manage their daily activities and require constant supervision that they will be considered for the incapacity provision.”
Individuals who meet the criteria “require constant supervision or care, are in a coma or have a severe mental illness,” the agency wrote.
Frank said as the number of Canadians with dementia rises, both government and private institutions should show more leniency.
According to Alzheimer Society Canada, over half a million Canadians have dementia — an overall term for disorders of the brain — with some 25,000 new cases diagnosed every year. By 2031, that number is expected to rise to 937,000, an increase of 66 per cent, the society says.
“Memory loss may get in the way of filling out forms and meeting deadlines,” Frank said. “If someone with Alzheimer’s or dementia can’t complete these tasks, there must be some allowance so that they’re giving the entitlements that they deserve.”
‘She’s my hero,’ Jim says of his wife Mary Lynne. (Jean Delisle/CBC)
Not a ‘one-size-fits-all’ disease
Mary Lynne Holton said she was shocked by the government’s lack of understanding.
“It’s like dementia is one-size-fits-all, and it’s not,” she said.
Employment and Social Development Canada has not replied to CBC’s request for comment on Holton’s case.
Today, Jim Holton “gets lost in his own home” and struggles to remember the names of people he’s known for years, according to his wife.
He is, however, aware of his diagnosis.
“The doctor said it is a cruel disease because there is no answer for it,” Holton said.
He’s most concerned about the toll all this is taking on his wife, who cooks all his meals and helps him get dressed each day. A recent fall has prompted the family to consider hiring outside help, and Holton believes the extra OAS money would help.
“It’s not like I’m trying to cheat them,” Holton said. “It is upsetting me.”