Talking about it brings her back to the days when her husband would wander out of the house on cold winter nights.
“I would go upstairs and the next thing I’d hear the door click and out he’s gone,” she says. “I’m not kidding, I was running outside with my pyjamas and coat.”
The local police got to know Clyde quite well and would bring him back home. “He had a Tilley hat and I had his name and address in that and he knew enough to show the police where he lived…that was really amazing.”
She laughs about it now, but it wasn’t funny at the time.
According to Statistics Canada, more than 8 million Canadians provide care to a chronically ill or disabled loved one.
Lewis was one of those unsung heroes. She took it upon herself to be Clyde’s caregiver.
Many sleepless months later, there came a time where she could no longer look after him. Clyde’s Alzheimer’s caused him to become violent.
Once a gentle man, he starting having aggressive outbursts towards Lewis without knowing it. It wasn’t his fault she says; the disease can have that effect on people.
He was sent to Colonel By Retirement home in Old Ottawa South. Lewis thought Clyde didn’t belong there, but at that point he had nowhere else to go.
She said the staff did not have the will or capacity to take care of her husband. “I just went in there as if I was working, as if I was a nurse. I did. I was his wife. I cared for him. I loved him. I wanted to give him the best care.”
“That’s what he got… He got it from me.”
Joanne Dyson from the Alzheimer Society of Ottawa and Renfrew County knows Lewis’ story all too well. She provides support, education and resources to families living with dementia.
With the disease on the rise, Joanne Dyson says the biggest challenge for most families is finding the proper care for their relative.
According to a study by the Alzheimer Society of Canada, the number of Canadians living with cognitive impairment, including dementia, now stands at 747,000 and is expected to increase to 1.4 million by 2031.
With the aging population increasing, Dyson says dealing with dementia will become a reality for more Canadian families. “It’s becoming more relevant and in the foreground.”
Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but that can range from four to 20 years.
She says dealing with the disease becomes more and more difficult as it progresses for both the person suffering and the caregiver.
That’s why she says it is crucial to plan adequate care in the early stages. “With long term care in Ottawa, we have a long wait.” People can wait a year or two for a home of their choice, she adds.
Dyson says there is also the option of going with a private agency that offers in-home care like a personal support worker or a nurse.
In Ontario private care from a nurse costs approximately $60 per hour and $30 for a support worker.
“The challenge with that is, not everyone can afford the costs of the private health-care agencies,” says Dyson.
It can be a financial hardship. “People might still be working and yet they are also pulled at home to be looking after their relative or to find someone.”
“That implies costs.”
But she says the Ontario government is starting to recognize that. There is an 8-week leave available for public servants who need to withdraw from work to look after their loved one.
There are also some tax cuts for caregivers and disability credits available for patients, but she says it’s not enough.
“Especially for those under 65, because they are not collecting their old age security yet.” Without a retirement income, Dyson has seen some families lose their house to be able to pay for care.
Clyde was placed in a private retirement home but he ended up at the Ottawa hospital with a urinary tract infection. Once treated, the doctors suggested that Clyde go back.
Being a retirement nurse, Lewis knew it wasn’t the right decision. “There is no way he’s going back there,” she told the staff. Clyde was to stay in the hospital.
Lewis researched and found five potential nursing homes that were better equipped to take care of her husband.
A bed opened up three weeks later at Élisabeth Bruyère. Lewis says putting pressure on the hospital staff to keep Clyde until a bed opened up probably sped up the process.
Dr. Chris Simpson, president of the Canadian Medical Association says these kinds of situations aren’t uncommon. There are more cases of chronic disease like dementia and he says hospitals are really feeling the brunt of the country’s shifting demographic.
“We have an aging population that has increasingly complex conditions and we don’t really have a health-care system outside of the traditional hospital system to look after them adequately.”
As we approach the 2015 federal election, some Canadians will be looking to see which leaders will address health-care concerns and potentially adopt a national seniors-care strategy.
“We know now that close to half of the health-care dollars are spent on people over the age 65. And the over-65 population is going to double in the next 15 years or so,” says Simpson. (Click here for numbers and statistics on aging in Canada.)
For that reason, he says it’s important that we invest in alternatives like home care.
Hospitals are becoming congested and we need to free them up to do what they are supposed to do, which is to treat acute illness, says Simpson.
“Hospitals are toxic places for elderly people with lots of complex disease … they get infections in hospital.”
If home care could be streamlined into our health-care system to treat chronic diseases, he says, “it’s going to be better quality, and it’s going to be safer and it’s going to be cheaper too.”
A national seniors-care strategy would add more tax cuts for families who keep their sick relative at home with them, and it would invest in home care and housing for seniors. The CMA wants the federal government to invest $2.3 billion in the strategy.
Simpson says the federal government resists any call for national anything, because they say it is the duty of the provinces.
But some provinces are richer than others and some have more elders. Those provinces have to shoulder much higher burdens of health costs, he adds.
“So surely there must be a role for the federal government to help ensure that every Canadian, no matter where they live, has some basic level of health care that protects them from all these economic and health-based declines.”
Lewis’ husband had a stroke caused by the medication for his violence. Lewis says it was hard losing him but hopes other families will find the support they need to take care of their relative suffering from dementia.
Header photo © Daniel Burgui Iguzkiza, under creative commons.