I’d like to share two transformative experiences with you.
The first was when I re-lived an event from my teens only to discover it was not in the least as I remembered. I’m referring to the thrill of riding the old wooden roller coaster at the PNE. The rush of adrenaline with its gravity defying drops and turns was permanently etched in my young mind as the best ride ever.
When my eight-year-old grandson was finally tall enough to ride this iconic coaster I happily offered to take him. The little guy and not-so-little me were locked by a bar into our seat which had space for at least one more adult. With great anticipation, our string of cars noisily climbed the first and tallest hill. From there all I can say is the event was like a series of car crashes, lurching, up, down, sideways again and again.
There were no seat belts so we kept sliding side to side with me crushing the poor boy on every turn. People were screaming but our open-mouthed voices were locked in silent terror. Afterwards my grandson was very stoic, but strangely quiet. We were bruised and battered and just relieved to be alive.
My second transformative event occurred recently when I signed up to do a virtual dementia tour at The Wexford. The Waterford and The Wexford are two popular, privately-owned retirement communities in Tsawwassen run by Bria Communities. I congratulate Bria on conducting a series of experiential dementia tours for health professionals and caregivers to better understand what it’s like to have dementia.
Both my father and aunt had Alzheimer’s, so I thought I knew more than many. I also imagined this tour would involve a VR or virtual reality mask which sounded like fun. I was so wrong on both counts. Wearing a VR mask would have been easier than actually experiencing what someone with mild to severe dementia feels.
Without giving away too many specifics, I can tell you this: I was told to allow 30 minutes and arrive 15 minutes early. A paramedic also did the tour. We signed waivers and answered a few simple questions about our frame-of-mind. After getting prepped we entered the tour area. Throughout the tour I was physically uncomfortable, often distracted, frustrated, very confused and fearful.
When it ended I was quite emotional. It was so realistic that a huge sadness enveloped me from knowing my father and aunt had suffered so. But it also gave me deeper understanding of how we need to care for people with dementias.
Here are a few practices I knew, but now understand why: Slow everything down, give time to complete tasks, reduce noise and bright lights. Allow them to do repetitive jobs and to socialize with others. Learn to decipher what they want/need. Stay positive, reinforce, encourage and come to their rescue. Like a parent caring for a child, take care of yourself so you are able to take care of them.
I recommend this experience for caregivers working with dementias. Unlike my ill-advised roller coaster ride, this tour could change how you go forward with your life and theirs.
ML Burke retired from the health sector to work on issues such as affordable housing. She sits on the Delta Seniors Planning Team and the B.C. Seniors Advocate’s Advisory Council.