JACKSON, Wyo. — In her 10-plus years working in long-term care for aging adults, Miekka Zanders has learned a lot about dementia.
Perhaps her biggest lesson, however, is how much there is still to learn. The rulebook about dementia is a living document. It is as fluid and evolving as the experiences of those living with dementia.
“Our understanding of dementia is not universal,” Zanders says. “We didn’t have a common language.”
Zanders’ new book, “Being with Dementia: A Soulful Approach” writes that common language through a simple, age-old tool: storytelling. The book is out on Amazon and is on the shelves at Valley Bookstore.
Zanders is the Executive Director at Legacy Lodge of Jackson Hole. She joined the team in 2017 with a decade of experience in long-term care for aging adults. Her knowledge of dementia is not by choice, she says, but by necessity.
“Without dementia communication skills, I was not equipped to do my job,” Zanders says.
“Being with Dementia” is a collection of stories from Zanders’ career, plus some contributions from friends and colleagues. Each story is followed by a “tip,” and offers a glimpse into living with dementia and what Zanders calls “behavioral expressions.”
Behavioral expressions are simply the ways in which people express needs when traditional tools like language are not available. Because behavioral expressions defy tradition and sometimes defy logic, Zanders says, they can be hard to understand and even harder to respond to.
But behavioral expressions are often nothing more than a plea for recognition. The job of the caretaker, then, is simply to recognize.
Zanders points to an example from her book of a resident at Legacy Lodge who one day became despondent that her mother’s car was in the parking lot. The resident kept saying that her mother had just passed away when in fact her mother had died years ago.
“She was crying and saying she needed to get ahold of her sister, Becky,” Zanders recalls. Becky is her daughter’s name.
It seemed perhaps complicated and irrational, but her emotions were actually quite reasonable, Zanders says. She was grieving.
The “rational” approach may have been to try to bring her back to reality — to remind her that her mother had died years ago. That would have just made things worse.
“Instead, I just sat down with her and said, ‘I’m so sorry about your mom,'” Zanders recalls. “Being with dementia in a moment like that — there’s nothing to do when someone is grieving except to be with them.”
And that is the simple but radical foundation of Zanders’ book and philosophy. People with dementia are actually perfect models for being “completely present.”
“What they believe is true in that moment is their truth,” Zanders says.
The best thing we can do, then, is to be present with them.
Find Zanders’ book “Being with Dementia: A Soulful Approach” on Amazon or on the shelves at Valley Bookstore.
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