Role reversal: when your parent becomes your child

It takes three lifts and one hour before Cindy Dumas can get her mother and herself to the breakfast table. Prepped and ready shortly after 6:45 a.m., she steps into her mother’s room. She is waiting. Cindy lifts her up by the armpits and has her stand on a pivot disc. She then turns her mother around to sit on the wheelchair. One transfer down, two to go.

In the bathroom, her mother needs to be transferred onto the toilet and then back. Cindy is tired and hasn’t eaten, but she can’t stop. She is hurting. The house is silent except for the pain receptors’ rapid firing in her shoulders.

“She was my 150-pound baby, although she didn’t weigh no 150 pounds at the end,” Cindy says of her late mother.

Innis Dumas spent her final two years in her daughter Cindy’s care. She died just before turning 81 in April 2015.

Statistics Canada reported in 2012 that 8.1 million Canadians provided care for someone in the past year. Among them, 48 per cent were caring for their parents.

Cindy, 55, became one of them after her mother’s stroke in 2013. Innis eventually became completely dependent on Cindy. She could only eat and drive her wheelchair. Then her speech also started to go. She had seizures. Her physical condition worsened with each one.

“It put my life on hold,” Cindy recalls.

She couldn’t make any decision without thinking about her mother. “I couldn’t just come and go when I wanted to. I had to make sure that I had made arrangements for somebody to be there.”

One of those arrangements was an assisted living worker from ICAN, a non-profit organization providing services for seniors and people with disabilities. Someone would visit their Sudbury home while Cindy was at her full-time job. The staff cooked hot lunches for Innis and cleaned the dishes before leaving.

Although Cindy says she was happy with their care, she remained worried. “That’s why I would call her so many times during the day, just to hear her say hello.”

Cindy rang home four or five times during the work day to ensure her mother was safe. She says it was always in the back of her mind.

It was worse when Innis went on Warfarin, a blood thinning medication. Cindy says that even small things like nosebleeds were reasons for concern.

On days when her mother had a nosebleed in the morning, Cindy remembers worrying at work, “Am I gonna come home and find her bleeding to death?”

Frustration added to her stress when it came time for appointments. It took 40 minutes to get from the house to inside the car. Cindy could also arrange for an accessible taxi, but she says it could be an hour late.

Going to the doctor or dentist could take an entire afternoon. The health appointments happened weekly for six months after Innis’ stroke.

Cindy worked for her brother-in-law who was accommodating. “Not every employer is that understanding about getting time off.”

She says things would have been harder if she didn’t live with her mother. After university, she moved back to her childhood home and never left.

“I could see how it was much easier than what other people are dealing with.” Some of her peers have to make frequent trips to their parents’ home to care for them.

Unlike Cindy, some caregivers also childrearing duties. Statistics Canada reported the figure at 28 per cent.

Having both responsibilities can be a struggle, says Shelley Bolger from March of Dimes, a non-profit organization helping people with physical disabilities.

“For that sandwich generation, it can be a lot to handle to look after the needs of your parent and your children. We do hear that from time to time.”

She says caregivers who live with their parents and children will often have to balance the needs of both. Bolger works for the Home and Vehicle Modification Program, which Innis used to purchase a wheelchair lift when she became disabled from rheumatoid arthritis.

According to occupational therapist Lynda McCauley, home modification can take at least six months to years if the person has many needs.

“If you’re looking at modifying the home so it’s suitable for them for the remainder of their life, then that’s gonna be a much more extensive renovation.”

Aside from modifying her home, Innis also needed a motorized wheelchair customized for her body. Cindy says it would have cost $9000 if not for the Assistive Devices Program at March of Dimes. According to Bolger, the program helped 1092 seniors in Ontario last year.

Cindy says financial assistance was crucial. “I don’t think anybody could really afford to do it on their own.”

Although caring for her mother was stressful, Cindy says growing old with her made it easier. She had time to get used to her mother’s deteriorating health.

“You gradually accept differences in the things that are happening,” says Cindy, “I know she looked after me when I was a baby, so I just looked after her.”

The difficult part came when Innis died.

They were at Cindy’s trailer at Manitoulin Island. “She had been laughing and joking and talking, and then didn’t feel well, and 15 minutes she was gone.”

Cindy says it was shocking. “I felt like I didn’t know what to do with myself,” she says, “My purpose was gone.”

Suddenly, she could come and go as she pleased. Her shoulder no longer hurt like before. But it took a while before she embraced her freedom.

Her house is even quieter without her mother around. Cindy had her company for decades, and now she was alone.

“It took me a year before I started living in the whole house and not just living in my room.”