Scrabble board spells out dementia’s devastation

There’s a wooden Scrabble tile in my purse — the letter Y.

I’m not sure how it got there, unless it fell in during a game with my mother. It reminds me of her and so I keep it.

Through her worsening dementia, Scrabble has been a mainstay of our relationship. A conduit of conversation. A pastime that binds us. A reminder of life in the pre-Alzheimer’s days.

Mom was a very good Scrabble player. Being an avid reader with excellent spelling skills, she regularly attained scores of 300 points or more.

In the early days of her Alzheimer’s diagnosis, she often credited the game and her love of crossword puzzles with keeping her brain healthy. Little did she know there was not much she could do to stave off the devastation that was coming.

Over time, as she gradually lost her ability to do all the things she loved — sewing, baking, reading, writing, cross-stitch — Scrabble was the holdout. It became the focus of our visits, and the words we made on the board would spark conversation or prompt bits of rhyme.

There was something meditative in the clicking of the tiles as we removed them from their cloth bag and put them on their little wooden pews.

But as her illness progressed, my mother’s game deteriorated. First, she forgot how to play strategically; then, she couldn’t remember how to keep score. Then, as her conversational skills diminished, the words she played on the board got shorter and simpler.

She often looked bewildered at the array of letters before her. “I don’t know anything about this,” she’d say.

Soon, I had to tell her how many letters she needed. She’d try to place tiles on top of others or join words in a way that made no sense. It was heartbreaking to see the confusion on her face. Sometimes she’d read the letters wrong — mistaking Is for 1s, and seeing Es as 3s, or seeing sideways Ns as Zs.

Now there are gaps in her vocabulary. When I suggest a word she can make from her letters, there is scarcely a flicker of recognition.

Some days she doesn’t want to play or, if she does, I have to play for both of us. The only sign of her old self surfaces when the game is over and she helps put the tiles back into the bag. She no longer asks who has won. I keep up the pretense of us playing together perhaps for selfish reasons, because it helps to pass the time and because it reminds me of the easy way we used to be together. I believe, on some level, it makes her feel that way, too.

We believe our loved ones are special and unique, but the pattern of my mother’s deteriorating Scrabble skills has been observed and documented by researchers.

In 2019, when he was a consultant neurologist at the Walton Centre for Neurology and Neurosurgery in Liverpool, U.K., A.J. Larner wrote about his own mother’s diminishing ability to play Scrabble for the website Advances in Clinical Neuroscience and Rehabilitation.

It was like looking into a mirror of my own experience.

“My mother is sometimes slow in making words, and certainly her playing vocabulary is impoverished in comparison with her past abilities, now with a predilection for short (usually three- or four letter) words…” he writes.

“Another phenomenon, which seems very curious, occurs on occasion. Despite her experience of playing Scrabble over many decades, my mother will sometimes state ‘I don’t think I’ve played this game before’… She may report that she just cannot see how she could play the letters in her hand, sometimes laying them on top of letters already on the board.”

Larner thinks the latter behaviour could be a form of “closing in” — a phenomenon seen in some people with Alzheimer’s who, when asked to copy simple shapes, are likely to draw on top of or overlapping the original drawing.

It gives me no solace to see my mother as a textbook example of how Alzheimer’s wreaks havoc in the brain.

Instead, it makes me feel sad for all that she has lost and the ravages yet to come.

Maybe I shouldn’t have pinned so much hope on a Scrabble game; shouldn’t have assigned it such weight. But I guess when we feel like we’re drowning, we cling to things.

For my mother and me, Scrabble was a linchpin, and a reminder of who she was before this horrible disease claimed her.

Soon our game days will be over, and we’ll have to find a different way to be together as mother and daughter.

I’ll keep that Scrabble tile in my purse to remind me of how things used to be.

Pam Frampton lives in St. John’s. Email pamelajframpton@gmail.com | X: @Pam_Frampton | Bluesky: @pamframpton.bsky.social