Maggie and Ruth’s story: Caring for a partner with dementia
Maggie and Ruth were both teachers when they met in 1989. The pair later married and were together for 28 years.
“Ruth was my soulmate,” says Maggie, a member of ParaMed’s Patient and Family Advisory Council (PFAC). “She was a gentle and caring person. She loved quilting and woodworking. She created beautiful quilts for loved ones and made some of the furniture in our home. She also loved to cook.”
In 2018, Ruth was diagnosed with vascular dementia. According to the Alzheimer Society of Canada, vascular dementia occurs when blood flow to the brain is obstructed which prevents oxygen and nutrients from reaching brain cells. It is recognized as the most prevalent form of dementia, following Alzheimer’s.
“There is that moment when you’re like, ‘Okay, this is real, this is what we are dealing with,’ and knowing then that our plan for the future was drastically going to be altered,” says Maggie.
One of the most pressing challenges Ruth navigated with Maggie’s support was facing stigma against dementia. As a lesbian couple, Maggie and Ruth had faced stigma before, so it was unsettling to add to the social challenges that resulted from dementia. It set them on an all-too-familiar path of advocacy, as they once again worked to build broad understanding from the insights of their own lived experience.
“The same people in our community who are now living with Alzheimer’s are the same people who were oppressed in the 1960s and 1970s for being gay. They don’t want to be shunned again,” Maggie says.
Upon receiving the diagnosis, Maggie and Ruth quickly reached out to the Alzheimer’s Society London-Middlesex (ASLM) and received support as Ruth’s dementia progressed.
Seeking at-home support
“Ruth and I decided early on that we would keep her at home as long as we could. Our goal was that she would continue living in a place that was familiar to her and as close to her routine, as long as possible,” explains Maggie.
At one point, Ruth required support for an injury. A ParaMed personal support worker would visit three times a week to assist with personal care needs.
Now, as a ParaMed PFAC member, Maggie volunteers her time to support other family caregivers in the home care system and continues to be advocate for dementia care in Canada.
Advice for caregivers
As time went on, Maggie noticed more changes.
“Ruth always loved to cook, but when her dementia started to progress, she would find it extremely challenging to put a sandwich together,” explains Maggie. “She would take all the ingredients out and then eat them separately because she couldn’t process the steps to putting the sandwich together.
The dementia journey can be physically and emotionally difficult for caregivers.
“I wore many hats when I was Ruth’s caregiver. I drove her everywhere, managed all her appointments, prepared her food, and helped her get ready each day. There was a point in our relationship where I wasn’t her ‘wife’ anymore,” says Maggie. “Our personal and intimate relationship with one another was deeply impacted by her dementia.”
Reaching out to health-care professionals, family, and friends, is an important way for caregivers to find support for themselves, as well.
“It is important to ask for help so that you can take breaks,” adds Maggie.
Her friends would regularly spend time with Ruth so that Maggie could relax and have some time off and partake in activities and hobbies that brought her joy.
Remembering with love
Throughout Ruth’s diagnosis, many memories and the love of friends stayed with her.
“She always has been a people person,” says Maggie. “One of her favourite activities to do with me was to look at old pictures and tell me absolutely everything about the people in them. Ruth and I would laugh a lot while looking back through old photos.”
Her favourite photos to look at where of her grandchildren. “It brought her great comfort, and that helped me to feel peace as well,” says Maggie.
Ruth passed away in the spring of 2023.
Maggie discovered there are gifts that dementia brings and embraced those to help manage the sadness of all the losses.
“You slow down the pace of your life, the simple things bring joy, the old becomes new again. The joy in her eyes and the smile on her face when she would give me something she had made at her Alzheimer’s day program kept me going through the lonely times.”