Katrina Prescott didn’t sign up to be a care partner for her mom, Kathryn Love, who was diagnosed with frontal temporal dementia eight years ago at the age of 62. Like many others who find themselves supporting parents, spouses or other loved ones living with dementia, Prescott fell into the care partner role as her mom’s condition worsened. 

It became overwhelming. 

“You don’t really have a lot of time to prepare,” says Prescott, 43. “And you’re probably getting very limited support from the system. So, it’s cooking, it’s cleaning, it’s helping that person with their activities of daily living. You’re the entertainment, you’re everything for this person — it’s very isolating.” 

                  [Left] Katrina Prescott & [Right] Kathryn Love

It’s a low-ball figure that doesn’t take into account the early-onset cohort who, like Kathryn Love, are diagnosed before they reach the official age of retirement.

There’s at least one care partner for every person diagnosed with dementia, and that number swells to nearly eight million caregivers — or almost one in five Canadians — when you factor in the circle of family, friends and paid workers that together form a support network for those living with dementia.

Being a care partner exacts a heavy toll. Like Prescott, most are thrust into the role with zero training and little knowledge of dementia.

As their loved one deteriorates, they can struggle with grief, loneliness and exhaustion, all of which impacts their physical and mental health. 

"For Prescott, the game-changer in finding some relief in her role as a caregiver was simply letting go."

In fact, 60 percent of caregivers show signs of clinical depression, according to the Family Caregiver Alliance, an organization that provides services to family caregivers of adults with physical and cognitive impairments such as dementia.

Letting go: acceptance and meditation

As Love’s dementia progressed, Prescott watched her mom stop driving, cooking and being able to look after her own finances. After Love wandered off twice and ended up in hospital the second time, the two began living together and Prescott became her mom’s primary care partner in early 2016.

All the while, Prescott was working full-time and dealing with questions and concerns from friends who didn’t understand her decision and suggested she was wasting her life. It was a lot to deal with, and something had to give.

For Prescott, the game-changer in finding some relief in her role as a caregiver was simply letting go. She realized that what was causing her the most stress was trying to contain the outbursts and control her mom’s behaviour in public. It was a source of ongoing conflict. 

“I realized these fights, these little arguments, were making my life harder, not easier,” says Prescott, who now works as the director of employer outreach for Carecoover, a Vancouver organization that connects experienced caregivers with people who need support. “Why should I be bothered if you’re wearing two different colour shoes? Or if you eat another bowl of ice cream? It was exhausting, and I was already exhausted.” 

Accepting the changes in her mom due to dementia was so much easier. 

At the same time, Prescott started practicing what she calls “conscious breathing” — bringing her awareness to, and focusing her attention on, a long, deep breath or series of breaths. Each one was a micro-meditation she could do during a minute of rest, like waiting in her car at a red light or riding in the elevator. 

These moments of peace became a daily habit that helped ground Prescott and let her respond, rather than react, to her mom. Their relationship improved immensely. 

                Photo Courtesy of Canva

Meditation may work for some, but self-care and coping strategies look different for every care partner, say, experts. A complicating factor is finding the time to integrate self-care into a busy schedule. 

The good news is there are groups across the country dedicated to helping care partners determine best strategies — and find windows for respite — throughout their day. One such resource is the Dementia Society of Ottawa and Renfrew County in Ontario, which has a team of dementia care coaches that caregivers can connect with for support. These expert coaches are trained to help care partners of people living with dementia, with the goal of improving their quality of life through counselling and resources. 

“We try to see where there might be opportunities [for them] to complete self-care, that might not be front-of-mind,” says Misia McCallum, a dementia care coach with the Dementia Society of Ottawa and Renfrew County. “And self-care is so individual — it’s not always taking a bubble bath or reading a book. For some people, it’s literally just being able to read the paper for 20 minutes every morning or being able to go for a 15-minute walk or a run.” 

These small windows of mini-indulgence or normalcy are important reminders that a care partner’s needs matter, too. Little acts of self-love boost mood, improve self-esteem and fill up a person’s cup so there’s empathy and patience on hand when it’s time to go back to the care partner role.