My Dad died a couple of years ago after living with dementia. He went from someone who was sharp, practical and reliable to someone who seemed to be living in a different world.
What happened to my Dad’s experience?
From spending time with my Dad over those last few years, I noticed a couple of things.
His experience became hard to access.
I was told that it was like having your memories stored in a filing cabinet. When you’re healthy, you know where you put each one and can find it quickly and easily. But dementia scrambles the map of where the memories are so that you can’t retrieve them.
Dad still had his experience; he just couldn’t find them anymore.
I noticed something when we were watching the football together. Previously, Dad could analyse the game and suggest why one team was winning or losing. Eventually, it reached a point where halfway through a game he would ask, ‘Who is playing?’
This was not him reaching for a memory but struggling to pay attention and absorb what was happening around him.
He couldn’t tell the difference between what had happened, what he heard somewhere and what he imagined. This was most obvious in the amazing stories my Dad would tell.
At one point, he told us about a bus trip he had been on. He said that a guy who had been one of my football coaches was on the trip and that they had seen a newborn tiger cub. While he couldn’t remember the coach’s name, at least he was real. The tiger cubs were also real, but he had seen them on the TV news. But the bus trip itself didn’t happen because this was during the pandemic lockdown and nobody was going anywhere at that time.
Rather than focus on what was wrong with Dad, I started thinking about a different question: What does dementia reveal about all of us? In particular, what does it tell us about our experience?
I realised my Dad wasn’t retrieving memories from a metaphorical filing cabinet. Instead, he was building a reality from all the fragments he could access. And perhaps that’s what we all do. Healthy minds simply hide the stitching better.
Our experience becomes memory; and our memories become stories; and every time we remember something, we’re reconstructing that story.
Dementia didn’t teach me that my Dad’s memories were unreliable; it taught me that mine probably are too.
Can you recall a moment where your memory of a shared event was different to someone else’s?
This is Field Note #9. Field Notes are observations from my ongoing enquiry into experience. To learn more about how to make the most of your experience, read these posts next:
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