Rural care challenges

Ernie Morgan vividly remembers the day he realized something was wrong with his wife Karen.

“It was at our son’s wedding, after the reception. Everyone was milling around and visiting, and there was Karen standing in the middle of the floor, with this completely lost look on her face,” he says. The diagnosis was frontotemporal dementia (FTD).

FTD tends to strike earlier than Alzheimer’s disease and instead of memory problems, FTD’s early warning signs are changes in personality, behaviour and speech. It is estimated that two to five percent of dementia patients have FTD.

A former special care aide in a long-term care home, just six months after her diagnosis, Karen was in need of care herself. Homecare employees began checking twice a day to ensure she ate and took her medication.

“It got to the point where Karen couldn’t be left alone for long periods of time. I’d leave meals for her in the fridge, but she wouldn’t eat. She had to be coached to have a shower or a bath. It soon became apparent she couldn’t be left alone for any length of time,” says Ernie.

While most spouses of people with dementia are able to retire and look after their partners full-time, Ernie — who is only 38 years old — had to continue working. He needed someone to care for Karen while he was at work, but suitable services for the young family weren’t available. The Morgan’s situation was all the more difficult due to their location. Only a few years earlier, their rural acreage seemed ideal. With Karen’s illness, Ernie felt isolated.

Ernie is thankful he was eventually put in touch with a telehealth group organized by the Rural and Remote Memory Clinic at the University of Saskatchewan. The group connects close to a dozen people whose spouses have FTD through monthly video-conferences.

“It’s a lot of help to talk to people who are walking exactly the same path I’m walking,” he says. Through this group, Ernie learned he and Karen would be eligible for financial assistance to hire a live-in caregiver. With live-in help and the support of the telehealth group, Ernie was better able to cope with Karen’s situation.

Sadly, Karen died unexpectedly in August 2011, just a year and a half after her diagnosis. Ernie wants to tell their story to ease the learning curve for others who find themselves in a similar situation. “I have a personal mission to raise awareness in the general public about FTD. I want to make my experience known so it doesn’t have to be repeated by others,” he says.