'There's still a person inside there': How families cope with dementia
Regina families share how a dementia diagnosis doesn't have to mean a lost relationship
Ten years ago, dealing with dementia was the last thing on Kathleen Spratt's mind.
Her mother, Louise Johner, was living an active and independent life filled with parties and family visits.
But things took a sudden turn when Johner was diagnosed with both Alzheimer's disease and vascular dementia, and started to rapidly decline.
"I jumped on the internet and started learning as much as I could," remembers Spratt.
Like many Canadians, Spratt started to feel like she was losing her mother, as she tried to relate to someone with memory loss.
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Eventually, the family moved Johner into a care home in Regina, and Spratt realized her relationship with her mother was going to drastically change.
"Probably the biggest thing was that I suddenly had to join her world, rather than expect her to be the way she was."
'We're best buds'
Spratt is sharing her experience in hopes of helping others understand that a changed relationship doesn't mean a lost relationship.
"We're best buds. We share music together; we dance and move to the music a little bit … she likes me fussing with her hair, putting on a bit of makeup. I'm always looking to engage her, for things for her to do."
Spratt says the biggest lesson she's learned is to live in the present, whatever that may look like.
"For example, she didn't remember that dad had passed away, so when I'm with her, dad's still around. He's not here at the moment, and we say, 'Gosh. Men. They're never around when you need them.'"
Spratt never uses the word 'remember' and always tries to ask open-ended questions like: "How do you feel?"
"She doesn't talk a lot but when she does, it doesn't make a lot of sense but she's communicating with me so I'm totally happy communicating with her and talking total nonsense.
"If she's sharing in the conversation, that's wonderful and those are treasured moments."
'It was hard'
Like Spratt, Erica Fletcher has learned the value of living in the moment.
Fletcher's mother, Alojzija Zver, was diagnosed with lewy body dementia in 2012.
"It was hard. You always hope — maybe they were wrong; maybe it's the water on the brain; maybe it is something from the medication. You just want them to how they were and they can't."
Fletcher describes her relationship with her mother prior to dementia as extremely close, and recalled the family gatherings and feasts her mother often hosted.
Fletcher was determined to make sure that close relationship continued, but knew it would have to look "very different."
"I just try to be here and listen, be in the now, and remember that there's still a person inside there."
Fletcher and her mother still enjoy watching soap operas together, particularly Days of Our Lives, an activity they've shared since Fletcher was a young teenager.
"Oftentimes she's talking about things we don't understand, but we still have good conversations about what's going on now."
Fletcher says her mother likes to talk about the "babies" she's caring for: life-sized dolls used to help reduce stress and agitation in dementia patients.
The value of visiting
Both Fletcher and Spratt expressed sympathy for people struggling to build an emotional connection with family members they feel "aren't there anymore."
"Some family members really find it hard to visit people with dementia because they are uncomfortable," says Spratt.
"I would just encourage people to think, yes, they won't remember you visited, but for those minutes you are spending with them … you're bringing some joy to them, and that's all that's ever needed."