'Get as much help as you can,' says Alberta couple navigating Alzheimer's diagnosis

When Bernie McCracken’s fiercely independent wife Elaine was diagnosed with dementia seven years ago, he felt lost.

'You need people to talk to, you need a community'

Bernie and Elaine McCracken pose with their grandchildren. The St. Albert couple are navigating Elaine's Alzheimer's diagnosis with support from their large extended family. (McCracken family)

When Bernie McCracken's fiercely independent wife Elaine was diagnosed with dementia seven years ago, he felt lost.

He knew little about the disease and how he would help his partner of 30 years navigate an uncertain future marked by memory loss and cognitive decline.

McCracken said building a support network has helped him better handle his new role as a caregiver.

"When the family gets the initial diagnosis, you're kind of whistling in the dark," McCracken said in an interview Tuesday with CBC Radio's Edmonton AM.

"You need people to talk to, you need a community and when you get a diagnosis like that, the tendency for a lot of people is to go away and lick their wounds and not to share, not to talk."

Four years after her dementia diagnosis, Elaine McCracken was officially diagnosed with Alzheimer's disease.

The couple has relied on the Alzheimer Society of Alberta and Northwest Territories ever since — attending regular workshops and support groups.

Elaine continues to live at the family home in St. Albert. She can no longer drive but daily life has, so far, remained relatively unchanged for the retirees.

Even so, it's important they put a support system in place for the journey ahead.

"It's a terrible, terrible disease," he said. "My role is to empower her as much as possible."

There is a lot of good help out there but you need to know where to go.- Bernie McCracken

As January is Alzheimer's awareness month, McCracken decided to share their story in the hopes it will encourage other caregivers.

"You get to talk to people that are in similar situations," he said. "There is a lot of good help out there but you need to know where to go.

"Get as much help as you can. Don't be afraid to ask questions and try and talk to your partner." 

Caretakers often bear the brunt of a difficult diagnosis, said Arlene Huhn, regional lead of client services and programs with the Alzheimer Society in Edmonton.

Dementia is unpredictable and watching a patient's decline can be painful for family members who know them well, she said.

When caretakers become physically or emotionally exhausted, both the health of the patient and caregiver can suffer, she said.

"You always feel like you're two steps behind, if not more," Huhn said.

"We see more families in crisis situations because they don't have the support and they don't know who to call.

"Things go on for longer than maybe they should have. People are exhausted and they don't make good choices for themselves or someone else."

'I just take it one day at a time'

For her part, Elaine said she doesn't feel anxious about her diagnosis, but instead she focuses on being a good mom to her two children and five stepchildren.

"My mother had Alzheimer's so I grew up with this," she said. "And my mom was a lovely mom so she is my role model." 

She credits her husband and their children for helping her maintain a sense of independence at home.

I feel very blessed to be where I am.-  Elaine McCracken

Most days she can focus on enjoying the present.

"I love Bernie dearly and he always does good things to help me out. We work very well together," she said. 

"I think he gets the brunt of the hard things to do, but for the most part, I feel very blessed to be where I am.

"I'm not in any pain and I don't suffer from anything. I just take it one day at a time."