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.”
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Copyright: coprid / 123RF Stock Photo
9 thoughts on “what if life were a ball of yarn?”
First, your “disclaimers” are appreciated as that allows one to approach the “Ball of Yarn” theory with a more open mind. Second, I love the model! While most of us look at time as a linear event, and therefore the passage of our lives as linear, there are also schools of thought that look past that to life in the past, present, and future all existing at the same time. I like that. Let me add to your model, if I may, by saying that to perceive the way in which a person with Dementia/ Alzheimer’s might perceive her life doesn’t necessary need to rearrange the bits of life’s yarn and reassemble them but rather they develop the ability (which most of us are not able to do) to perceive the entire ball of yarn at the same time thereby condensing past, present, and future into existing all at once and which could be called the New Now! Thanks Susan.
The “New Now!” I love it ❤ Great additional thoughts Michael ❤
Love this piece and the comments below. I agree, yes and yes! Interesting article in today’s NYTimes that talks about this very issue (along with tons of other things about Alzheimer’s: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?hp&action=click&pgtype=Homepage&clickSource=cover-photo-large&module=photo-spot-region®ion=top-news&WT.nav=top-news&_r=0
Thanks Heidi and am checking out the NYT piece even as I type… ❤ you, and holding space for your ongoing endeavours ❤
Great article Heidi and thanks again. Here’s a relevant quote from the piece:
“She had trouble with elapsed time. It was getting impossible for her to distinguish between the past, the present and the future. Blots of time melded together. She seemed forever in the present, as if her life was one jumbled moment — breakfast, shower, lunch, dinner, movie, shopping, everything conflated together and happening right now. It was as if, without even trying, she had become a Buddhist.
“I have no clock in my head anymore,” is how she put it. “The concept of how long it takes to do something has been lost. What an hour feels like is gone. It’s morning and then afternoon, and I think the morning was yesterday. With time, it’s always just the present. If you ask me what I’m doing at 3 p.m., I just have to make it up.”
Once again, the full article is here:
I would say my dad lives constantly in the past now and its us his family that snap him back to the present, by just being there and communicating with him, its not a place he likes to be for very long, to him the present is confusing. I believe when AD progresses in time, the PWD regresses in time, they go backwards to memories further away, so grown children are not recognised because he see us as small playful children or small babies, his wife (now deceased) he sees as a young woman, which he confuses with his granddaughters who remind him of her then, he prefers to live in his regressed world, but when confronted with the present everything becomes confusing because people and places don’t fit anymore.
This is the most difficult thing for families to understand and the hardest for them to except, I always say you need to mourn for the person they were and get to know and love the person they become. To feel you are no longer remembered by a parent or a spouse is very upsetting, they do remember you, but not as you look now. That’s my thoughts, thank you for yours.
Thanks for sharing your thoughts ❤
An interesting theory – makes a lot of sense.
It’s not scientific in any way at all, just an analogy 🙂