Leah Pelletier
Local Journalism Initiative Reporter
Rocky Mountain Outlook
BANFF – Tony Celli was everyone’s No. 1 fan.
That’s how Banff’s Anna-Lisa Christilaw remembers her dad. If anyone was cheering you on up and down the sidelines at the soccer game or getting into some game action himself, even until age 73, it was Tony.
“He was loving and loud about it; loud and not in an unkind way, but he was your biggest fan. He was my number one cheerleader,” said Christilaw, a guide, teacher and Caregivers Alberta ambassador.
In 2012, the signs of Parkinson’s disease started to surface. Tony was the same larger-than-life dad Christilaw always knew, but his smile, his walk and ability to express himself started to change and the independence was slipping away, she recalled.
“In 2018, I really saw how I needed to step in more with, ‘OK, what could I do to take some things off the plate?’ Like understanding the online banking and things like that – financial pieces that I could help with,” she said, noting how her siblings stepped up as well.
But like many who have moved to the Bow Valley with family in other parts of the world, Christilaw started to feel the 2,500-kilometre separation between her and her husband in Banff and her aging parents in Sault Ste. Marie, Ontario.
The need for more intensive care wasn’t far off and in the thick of the COVID-19 pandemic, navigating care systems and trying to be present as often as possible for her dad, Christilaw started on her caregiving journey – whether she knew it or not.
“That’s kind of where things really turned on this new path of caregiving and I realized that there were things that I could do from a distance and be involved in … so you’re kind of just thrust into that world,” she said.
“I never wanted my parents to feel abandoned or that I had lost hope. I wanted them to feel loved and respected and honoured. Just as I had.”
For many years Christilaw shared a similar experience to one in four Albertans over the age of 15.
“The most current data is that approximately 44 per cent of Albertans are caregivers, so that would be about 1.4 million people within the province,” said Matt Salopek, communications coordinator at Caregivers Alberta, an Edmonton-based non-profit providing support for unpaid caregivers.
“And those are only people who are reporting that they’re a caregiver or are seeing themselves as caregivers,” added Christilaw.
While caring for her dad didn’t always look like the day-to-day tasks of helping him eat or get dressed, but instead managing finances, documents and behind the scenes work, Salopek says this is all equally part of a caregiving role.
“Caregiving can be a very broad outreach. It doesn’t always have to be just preparing meals or helping people bathe or get into bed,” he said. “It can be something as simple as helping them do their taxes, driving them to appointments, helping them plan out their medications for the week.”
“I think it was Rosalynn Carter who said there are four types of people in the world, either you’ve been a caregiver, you are currently a caregiver, you will be a caregiver or you will need one. It is a universal experience,” said Christilaw.
When Tony passed away in 2021, it wasn’t long after signs of dementia reared its ugly head in Christilaw’s mom, Connie Celli. But this time Christilaw knew in order to care best for her mom and herself in this stage of life, she needed to move her to Alberta.
“In 2022, I said I’ve got to get mom closer and because what I didn’t realize deep down was that I needed to feed my soul and when I was here, I could do that,” she said.
Regular hikes up Tunnel Mountain became moments where Christilaw found rest. The words of Trevor Hall’s song Put Down What You’re Carrying, an anthem as she trudged up the familiar trail, facing complex emotions of grief and loss that come with caring for aging loved ones and watching their condition progress.
“Sometimes I feel like I have got my hero’s cape on, and I needed to take that off. I just needed to take it off and see myself as a human being with my own needs and needs that my care recipient, my parents, wouldn’t want me to forget,” she said.
Eventually moving her mom even closer, from Calgary to a memory care facility in Canmore, Christilaw focused on caring for her mom in ways she knew best – going on walks together, doing each others’ hair or offering support to the full-time staff at her mom’s care home.
“When her condition with the dementia intensified, I knew I needed to be there and I wanted to be there,” she said.
“That person still has things that they enjoy, things that bring them joy.”
Salopek says it’s a similar experience for many others, who are often caring for a family member, where it’s easy to see caregiving as a “familial obligation.”
“Most individuals within the province provide care to close family members such as parents, grandparents, spouses, siblings or children and about one in five caregivers are supporting friends, neighbours or co-workers within their community,” he said.
“People just kind of often see this as … what they’re supposed to do but at the same time, while it may fall under that category of an obligation, they also do fall under the category of being a caregiver.”
The ‘burden of care’
In the company and quiet of the forest or breathing in crisp air on her cross country skis, Christilaw was able to recharge, learning to leave any stress that built up from caregiving behind.
But without resources and outlets, Christilaw says isolation, stress and burnout eventually rise to the surface for most caregivers.
“That burden of care is heavier for some people than others and, depending on your own life situation, if you’re balancing care with a young family, for example, with work and caring for a parent it’s heavy,” she said.
“The most common [challenge] is people that are dealing with stress or burnout or people that are having trouble just navigating the different services as they go on this journey,” Salopek added.
For Christilaw, the hurdles came in the form of navigating care systems for her dad in an unprecedented time of COVID-19 restrictions while also living across the country.
“I wasn’t physically there and so with me there’s been that sense of guilt. I should have just dropped everything and for a lot of us caregivers, we ‘should’ on ourselves all the time,” she said.
Feeling the pull to get support and find people who understood her experience, Christilaw discovered Caregivers Alberta in 2022.
“There are many moments where I was feeling really broken. I will not say it’s just because of the caregiving. It was very complex grief and that’s what can happen to people when they’re not just grieving, say, the loss of that person who’s died or they’ve changed as in their condition, like with the dementia,” Christilaw said.
“Often caregiving is a marathon. You need nourishment and you need rest. [It’s] the same thing on this caregiving journey.”
But to stop the burnout and stress in its tracks, there’s a “growing need” to formally recognize caregivers, whether family or friends, as essential to a patient’s health, Salopek says.
“Caregivers are often the ones coordinating appointments, managing medications, providing day-to-day support yet their role is overlooked,” he said.
“Improved cross sector collaboration is key. Caregivers routinely find themselves bridging gaps between fragmented services, trying to connect information and navigate siloed systems on their own.”
Creating a service navigator, Caregivers Alberta hopes to improve this collaboration between healthcare providers and community support to build a network for caregivers that are often juggling responsibilities.
Growing Bow Valley supports
With a gift comes the responsibility to share it.
That’s what Christilaw remembers her parents instilling in her through the years and in this case, it means sharing her experience as a caregiver and helping others navigate the walk themselves as an ambassador for Caregivers Alberta.
“That cup of self-care is pretty empty for a lot of people when they seek help and they may have gone beyond burnout into depression and even more serious things, so we want to be able to prevent that from happening,” she said.
Running the COMPASS for the Caregiver course through Caregivers Alberta, Christilaw is teaching the four-week program designed to support caregivers whether they provide help to an aging parent, a child with a disability or a spouse with a health condition.
“Its aim is to provide you with these tools, these resources, these supports, so that you can achieve some balance and balance your wellbeing with the responsibilities,” she said.
“A lot of people end up at Caregivers Alberta because it’s burnout. They’re desperate. If we can empower caregivers before or earlier, then they have some of these go-to resources.”
Teaming up with community groups, Christilaw also helped start the Bow Valley Caregiver Working Group in 2024, with the goal of bringing together local organizations like Bow Valley Palliative and the Bow Valley Connections Centre.
“Having worked in the community so long, I knew that there were lots of resources within and there was a really special network of support here,” she said.
“We were coming together because we realized the statistics in our province, countrywide but also we knew in our community that we had a high number of people who were aging and wanting to stay in place.”
The COMPASS for the Caregiver course runs Nov. 27, Dec. 4, 11 and 18 at the Banff Public Library at 6:00 p.m. The $300 value course is covered by Caregivers Alberta and Banff’s Ram Projects and Renovations, making the program free for participants.
“Just know that you’re never alone and in town the support, the awareness is growing too,” Christilaw said.
For more information and to access to a Bow Valley caregiving resource directory visit: caregiversalberta.ca
The Local Journalism Initiative is funded by the Government of Canada. This position covers Îyârhe (Stoney) Nakoda First Nation and Kananaskis Country.
