'I know how awful it is:' Former care worker faces dementia, continues to fight stigma

Christine Thelker didn't need doctors to explain the bleak outlook she faced when she was diagnosed with vascular dementia at just 56.

As a former care worker for dementia patients, Thelker knows exactly what lies ahead. And she is terrified.

"I know how awful it is," she said. "I remember thinking 'Oh my god, the one thing I never ever wanted to have to go through.'"

Thelker is a widow and lives in Vernon, B.C.

Although she has family to support her, Thelker faces an uphill battle to hang on to her identity and independence for as long as she can.

Fear of the future

She's not afraid of death, Thelker told CBC host of Radio West Sarah Penton, but of what comes before that.

"If you are lucky, you die before you get to the worst parts of it," she said.

What she fears most, Thelker said, is being put in a care home. 

"There is nowhere to go, there is nothing to do," she said. "It's worse than being in jail."​

Krista Frazee, manager of regional services for the Alzheimer Society of B.C., said going into a residential care home is a common fear for seniors.

"Sometimes we fear the worst when it comes to residential care, but there are beautiful moments that are shared and it's not all bad," Frazee said.

'A lot of stigma'   

With dementia, other people may not know what to say or do, she said, creating a feeling of isolation. 

"There are a lot of myths about dementia and there is a lot of stigma associated with misinformation," she said.

The society runs a number of public education programs and offers support and resources for dementia patients and their loved ones.

Thelker's niece, Tara Bradley, said it can be difficult to know what to expect day-to-day when a family member has dementia. 

"My way of being able to deal with her ever-changing status or ever-changing health is to simply take her for where she is at right now," Bradley said.

"To be a really good support is to be able to hold space for her."

'Pretty loud voice'

Thelker has always been an outspoken advocate for dementia patients and isn't letting the illness stop her.

"I had a pretty loud voice when I worked and now I guess I'm trying to have a louder voice," she said.​

Thelker has started a blog on Facebook to document her journey and hopes to change perceptions about dementia.

"I still have things that I am capable of, I still have things that I could contribute, but the stigma says otherwise," she said. "That needs to change."

Her niece, Bradley, said blog readers have contacted her to say it has helped them understand the illness better.

"It's that awareness," she said. "[Thelker] is trying to tell people how this feels."

To hear more, click on the audio link below:

With files from Radio West.