Christine Aiken (left) and her husband Wayne Aiken stop for a breakfast date at Harold's Family Restaurant in Kamloops.

(SHANNON AINSLIE / iNFOnews.ca)

Christine Aiken tucks into a hot breakfast at a diner in Kamloops chatting cheerfully in between bites of hash browns and buttered toast.  

In her early 60s with bright blue eyes and a welcoming smile it’s impossible to tell by her appearance she is living with a terminal cognitive disease that is slowly taking away her memory and causing vascular emergencies.

iNFOnews.ca first met Christine in 2020 not long after she was diagnosed with early onset dementia following a stroke.

She’d been given the diagnosis, told to organize her affairs and that she had three to eight years left to live. She’d been sent home where she lived alone without support, resources or anywhere to turn. She was let go from her job where she ironically cared for dementia patients.

“I was in shock, in a very dark place, I fell into depression,” she said. “I had to choose to live, I had to make that decision or sit there and die.”

Now, more than four years later, Christine’s life is brighter than she could have imagined. Her advocacy work to improve outcomes for dementia patients has grown throughout the province and her biographical book For This I am Grateful has been published.

The biggest surprise for Christine was falling in love and getting married, despite her doomsday diagnosis.

“If five years ago someone would have told me after my diagnosis it was possible to get remarried, I would have said not likely, because most people run in the other direction,” she said, exchanging smiles with her husband Wayne Aiken sitting beside her. 

Christine's success and joy are a testament to her daily battle to survive, and to what she advocates so fiercely for: that with the right supports, people with dementia can not only live, they can thrive. 

Dementia is a term for several diseases that affect memory, thinking and the ability for a person to perform daily activities. Mainly impacting older people, there's no cure for the progressive disease, according to the World Health Organization.

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The illness has detrimental physical, psychological and social impacts both on sufferers and the those around them. 

Christine, 64, was widowed at age 47 and diagnosed with early onset vascular dementia at age 55 that affects her brain and her heart.

After falling into shock and depression upon receiving her diagnosis with no available supports or resources given, Christine fought back.

She sat on the board of Dementia Alliance International, a non-profit run by people with dementia, for three years and spoke at conferences around the world about how to live better with dementia and how communities can help. Eventually she left to advocate closer to home.

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Recently, she reconnected with Wayne, a long haul trucker living in the Lower Mainland, and the two got married... for the second time.

“We were married as teenagers but you know, we were too young to cope with major life events at that age,” she said. “We ended up divorcing and going our separate ways but we always loved each other.”

Wayne, on a whim, reached out to Christine’s family and after a few months, she called him back. Both said they were nervous about that first call, not knowing what to expect after almost 50 years apart.

They arranged to meet each other again in Sicamous last year.

“When we saw each other, we knew instantly, all the love that was tucked away for all those years was still there, we just held each other,' Christine said.

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But she still had to deliver the news of her diagnosis.

“That was my biggest fear when I first went to see him, I knew I had to tell him that day because I knew if there was a chance of anything happening with us, it couldn’t happen and then six months later disclose that,” she said. “My biggest fear was he was just going to go, just walk away because it’s too much.”

Wayne was not deterred and later read a copy of Christine’s book to help him better understand the diagnosis.

“I was like no, I’m not going to lose her again,” he said. “At first I never realized the extent of what it meant. She asked if I’d be able to look after her and I said, if we’re together, we’re together for the rest of our lives.”

Learning how to get through each day together with the illness was a learning curve for both of them. Christine had to learn to share her challenges and ask for help. Wayne said he had to learn patience, and how to accept her help after being single for two decades.

“He had to learn that on my really hard days, whether its physical or cognitive, on those bad days, I need support, but I don’t need him to fix it,” Christine said. “I just want him to tell me it will be OK, we’ll get through this.”

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In the early stage of the relationship the couple went shopping at a grocery store Christine wasn’t familiar with. Wayne went to go shopping for one thing expecting her to go shopping for another.

When he got back, she was still standing in the same spot.

“I was so overwhelmed,” she said. “He had to learn some days I can manage on my own, other days I can’t. Sometimes I say I’m going shopping and he knows I can, while other days I need him with me and still others I just follow along and that’s the best I can do that day. Now he knows, we don’t have to make a big deal about it.”

Having a supportive spouse has allowed Christine to cook again, although, with dementia she has had to find a methodical way of doing it. She cannot be distracted at all and carefully puts each ingredient in its own dish, checking them off the recipe one by one.

“I didn’t cook for a number of years because I couldn’t manage by myself, I’d get lost in my recipe,” she said. “He learned if I’m cooking it has to be my focus. He can be in the background but I can’t multitask.”

These days the couple travels around B.C. in Wayne’s semi truck for work. Christine sits on an advisory board with the Canadian Consortium on Neurodegeneration in Aging, an umbrella organization of researchers and scientists across the country.

“We’ve changed the face of how research is done, they now have to have people with lived experience involved which is something we were striving for, for a lot of years, so I’m busy with that," she said.

She travels around the Okanagan to speak and help communities support those living with dementia.

“One of my passions is having conversations with people,” she said. “So many people still live in fear and hide the diagnosis or don’t get diagnosed because if they do life will be over for them and they’ll just get locked in a home somewhere.”

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In September, she was invited to speak and be a panelist at an event hosted by Thompson Rivers University with the faculty of nursing that brought together social workers and instructors of nursing programs to discuss how to improve the lives of those living with dementia.

“Most of them will admit they know little to nothing about dementia, at the nursing schools it’s not really taught, it’s skipped over most of the time and everybody’s afraid of it, so we’re changing that,” Christine said. “It’s about changing how they deliver those courses so there’s a better understanding and less fear.”

She has spoken at events called Memory Cafes in Oliver, Osoyoos and Keremeos this year. At memory cafes, local businesses and people affected by dementia come together, connect with one another and share ideas about how best to support community members with dementia.

There's typically a luncheon and entertainment.

“When I talk at memory cafes I share ideas, like how about a quiet shopping hour where you don’t have overhead music and carts banging and crashing for the people with any kind of cognitive disabilities? And if they find all of it too much, they can show up at that time and actually enjoy the experience,” she said.

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When asked they're afraid for the future, Wayne said 'no, we have each other,' while Christine said, she's more afraid for him.

“I know my end days are closer, so I try to find the joy in every day,” Christine said. “I’m more worried about what my death will do to him, and if my dementia all of a sudden goes downhill fast.

"You have to find it within you to rise above your illness, so you can embrace life. I’m thriving because of all the love and support I have.”

As of January, the Alzheimer Society of Canada predicts 733,040 in the country are living with the disease, with 350 more cases developing every day.

Go here to find Christine Aiken's book For This I Am Grateful on Amazon. 

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