“This is not how I expected I would spend my retirement,” says Sharon, a recently retired mother and grandmother in Ottawa, who spent four years caring for her spouse–11 years her senior–with multiple chronic health issues, including Parkinson’s.
“When my husband started failing, I was thrust into an entirely new role, a whole new chapter,” says Sharon. “I became a full-time, 14-hour-a-day caregiver, but more than that, I became a driver, a project manager, a case manager, a health records administrator, a pharmaceutical coordinator and a home and wound care secretary.”
What Sharon experienced is happening across the country. She is one of many Canadians who not only faced the shock of a spouse’s diagnosis, but who woke up the next day to the surprise of discovering their spouse may not have the full range of support they need.
“We were looking at a patchwork of health services to keep him stable,” say Sharon. “I knew it would be up to me to coordinate it all.”
With an ailing partner to care for, more than 600,000 aging Canadians are left becoming an advocate in what would be unprecedented circumstances for them and navigating a complicated health system – a system with no road map, no GPS system and no one to give directions along the way. As a result, the caregiver often becomes worn-out, stressed and pushed to the limit in their own home.
“Ensuring my husband got the best care was a juggling act that demanded all of my time,” says Sharon. “I would sometimes be on the phone for hours, which would pull me from spending time talking to my husband, and I lost touch with friends.”
Sharon’s husband often required acute care. Because of his Parkinson’s, he would regularly fall, which would land him in the emergency room to deal with the resulting trauma to his body.
“When he fell, it was up to me to call the ambulance to pull him up and follow the sirens to the emergency room, where I would kick in to high gear, sometimes for days, to make sure the system was working for him and with me,” says Sharon. “But the hospital’s goal was to stabilize him, to help him recover enough to go back home, where we would witness a turn style of personal support workers and wound care nurses entering the house.”
“It was draining,” she says. “If we had a better case management system, with a reliable schedule that worked with our family, it would have helped me greatly.”
Anne’s case is similar to Sharon’s. Also in Ottawa, Anne’s husband was suffering from Parkinson’s along with dementia.
“All the time I had was for him. Every minute had to be devoted to him, to organize for him and to be by his side,” Anne recalls.
“We were managing well until my knee paid the price for everything I was doing,” she says. “My knee collapsed while I was taking care of him and I couldn’t help him for three months.”
As a veteran, Anne’s husband had access to a room at the Perley Rideau Veteran’s Health Centre and was admitted while she recovered from her knee-replacement surgery. However, the solution was not ideal.
“When he was out of his own home, he was lost, he was confused,” says Anne. “They took good care of him at the Perley, but it was a set-back.”
During that time, Anne’s husband was diagnosed with a cancer that physicians said would limit his life to two months. Pushing hard to recover and getting back on her feet, she returned to support her husband. Anne made arrangements to bring him back home part-time. He lived and enjoyed life for another year.
“I keep thinking of people who don’t have that kind of support,” says Anne. “What if they don’t have a living spouse or children to help?”
Anne looks back on her experience as her husband’s caregiver. “These times are inevitable and we should make them the best we can, but I’m not sure we have all the tools and support for that.”
And, Sharon did find ways to cope in the last years of her spouse’s life. She drafted, updated and copied her own version of her husband’s health history and records. Kept in a file by the door, it was ready for paramedics, ready for home care workers, ready to be packed into her purse for the hospital.
“I know that I was the best caregiver I could be for him,” says Sharon. “But, I wish I could have spent more time with him as a spouse, not just on the phone coordinating his care.”