What would your world be like if you experienced time as a sphere instead of as linear sequence of events? What if past, present and future all existed at once and any given event or time could potentially be right next to any other event or time? What would that be like?
I think people who live with dementia sometimes experience life in this way in the early and mid stages of the disease. I believe that for them, time and memory exist more like a sphere than a straight line.
They often seem confused, disoriented and befuddled. Their thoughts and memories may seem random and disorganized. They may appear to be simultaneously “here,” and yet strangely not. They sometimes behave in ways that appear to those around them to be irrational or illogical.
“You’re not my daughter Peggy,” Peggy’s mom says to her 50-year-old daughter Peggy who is standing in front of her. “You’re not my daughter, my daughter is a young girl.”
Or, “Isn’t it strange?” Marcia’s mom might say one evening as they sit in the living room of their family home of forty years. “Isn’t it strange how all of this furniture and the pictures on the wall look exactly like ours, but we are somewhere else? Isn’t it odd that this place is identical to our home, but it’s not?”
This may feel uncomfortable for everybody – the people who live with dementia as well as those around them. We generally feel more at ease with the illusion of predictability; being outside of our known boxes makes most of us feel twitchy.
I have a way of thinking about this, my own framework, that helps me understand how an Alzheimer’s mind might be experiencing time and memory, and to remain calm and accepting when I communicate with people who live with the disease. I use the framework as a tool for understanding how their world might feel.
Before I explain, here are the disclaimers about my framework; it is:
- a product of my imagination
- an over-simplified way of understanding very complex processes
- not based on physiology
- not scientific in any way
- not grounded in any reality of which I’m aware
That said, here are the thoughts behind my “ball of yarn” theory:
People who don’t have a brain disease that results in dementia experience time in a linear way. Events happen in sequence, one after the other. We live in a world of past, present and future; yesterday, today and tomorrow. Time is chronological – much like a piece of yarn as it is pulled from a ball.
But what if we took the yarn of our lifetime and cut it up into millions of tiny pieces and then reformed all of those formerly sequential pieces into a ball? Any piece could theoretically be next to any other piece. And what if the pieces constantly became unstuck from each other and we kept reforming them into new balls? Any given piece of time and space could theoretically, randomly and momentarily become stuck to any other piece of time and space in any given new ball.
This is how I imagine memories might manifest in the minds of some people who live with dementia of the Alzheimer’s type: a childhood event might sit right next to today’s lunch one moment and then be beside something completely different the next. (For an interesting additional take,see Michael’s comment below.)
Here’s the video version of my ball of yarn model:
Anyone can use this perspective and other positive approaches to reframe situations that may cause upset such as when people who live with dementia do not recognize their loved ones.
Care partner Diana Ferguson Henderson shared this brilliant example with another care partner who was distraught when her mom didn’t recognize her:
“My brother and I are going through the same thing,” Henderson wrote. “Mom will call me by name one minute, and ask me who I am the next. When I tell her I’m her daughter Diana, she says ‘you can’t be because she’s slim and graceful.’ And I say: ‘yes I was, but now I’m fat and sassy!’ Then we laugh and move on.”
Copyright: coprid / 123RF Stock Photo