It's been years since Jana Schulz's father Roy has recognized her.
His Alzheimer's has progressed through the years, but his sense of humour has never wavered.
Once, Roy told his daughter that he didn't know her or anyone named Jana. Instead of dwelling in grief, Schulz decided to use a joke to remind him of their relationship.
"I just put my hands up and I went, 'Well, surprise! You're now the proud father of a somewhat healthy 40-something. Congratulations!" she recalls.
"I hardly hear him laugh anymore. But I got a 'huh.'"
The Cranbrook, B.C. resident says this was her way of honouring her own grief while turning the moment into "something that brought (her father) joy."
Roy was diagnosed with the disease in 2016. However, his family noticed key changes in his behaviour a year before, when he was building a fence with Schulz's husband.
"My dad was a drafting engineer. When he was building the fence, he had a really hard time understanding horizontal and vertical. There's so many things that have happened in the years since his diagnosis, and even prior to that," she says.
"But I think that was the real turning point because it just was something that he did so naturally, and now really struggled."
More people living with dementia every year
January marks Alzheimer's Awareness Month.
A recent report from Alzheimer Society Canada states that more than 1.7 million Canadians are expected to be living with dementia by 2050. In B.C. alone, the anticipated statistic is about a quarter of a million people.
As a result of this increase, Alzheimer Society of B.C. CEO Jen Lyle says it is crucial to raise awareness on dementia, and challenge stigma and misconceptions.
"It is possible to live a meaningful life and be living with dementia. Yes, there are challenges. There are times that are difficult. But there's also moments of joy and laughter, and purpose, and even personal growth," she says.
Stigma around the disease means that some people may describe the experience as "suffering from dementia."
But Lyle says this type of language only reveals society's misconceptions of the disease and actual realities of it.
"Living with dementia is just that — it's living. Life is messy and complicated and joyful, all wrapped up together. So that's why we use the phrase 'living with dementia' to capture the fullness of the experience."
And this is the society's mission statement during January: flipping the script.
"The whole point of this campaign is to share stories that show the opposite, that show the realities of living with dementia, including the fact that you can live well with dementia. You can be part of a band, you can write a book, you can become a poet, you can do all of these things," says Lyle.
"We want people to understand, if you are not personally affected by dementia now, you will. So let's take action. Do the things that we can, even the small things, even if it's just educating yourself on what dementia can really look like. Let's take those steps now."
Lyle says the B.C. government has done good work in relation to programming; she points to the society's First Link Dementia Support program. But there is always an opportunity to do more, she tells Glacier Media.
"The last dementia framework we created in this province was back in 2016. So there's a real opportunity for us to look at a made-in-B.C. provincial strategy that learns from our experience in the pandemic and addresses things within the health-care system, but also outside of it. Dementia is more than just a health-care issue. It's a social issue. It's an economic issue, infrastructure and transportation issue. So, there's opportunity there."
Importance of professional support
Schulz was a full-time registered social worker before she took on a new role as a dementia education coordinator for the East Kootenays.
In this new job, she provides caregivers with resources and education sessions about the disease — professional support she wishes she had sought out in her own journey of being Roy's caregiver.
"Don't get me wrong. I know I've done the best I can. But I just feel like maybe I wouldn't have felt as much grief through it, wouldn't have taken so long to learn those skills," she says.
"I see the value. I see that there's actually way more support out there than what I was aware of. Now, I'm getting support. I feel like I can kind of navigate those challenges with the disease a lot easier."
Through her role as an educator and caregiver, Schulz wants to remind people that "not everyone experiences the same behaviours (when living with dementia). It is very unique to each person."
There is no one-size-fits-all for supporting people living with dementia. It can be a lot of trial and error as a caregiver, especially with communication. For Schulz, she says she observes her father's non-verbal behaviours to connect with him.
"My dad was never a really huggy person. He's now in a wheelchair, and when he's rocking, I know that either he's irritated or he's trying to self-soothe himself. So you know, touch — putting my hand on his knee or rubbing his shoulder — smiling, looking at him directly (are) types of things where I get the most positive results in our interactions."
Reconnecting with the past
One of many fond memories Schulz has while supporting her father has been about reconnecting with their Métis identities.
This is because she only learned about her heritage in her teen years. And still, it was a rare topic of conversation in the household.
"My dad never talked about his Indigenous ancestry until his Alzheimer's was progressing. I'll never forget the first time he said to a health-care provider, 'I am Métis.' And I remember, it just hit me in the heart," she recalls.
"He lived up in the Northwest Territories when he was younger — and so he talked, and I was able to record some of his storytelling. Going from not ever talking about it to now sharing stories, it brings pride."
As a result of her father talking about their ancestry, Schulz became interested in learning about how dementia can impact Indigenous peoples.
"That's kind of taken me on my own (journey), doing a little bit of research and some reading. I think it's so important that we look at the history of Indigenous people, and how that impacts the behaviours."
Despite her own grief as both caregiver and daughter, Schulz is grateful she's able to spend time with her father.
"I feel like our relationship is definitely the most rewarding thing for me. We may not have had a relationship like this."
