Losing my mother, one piece at a time

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This article was published 18/10/2023 (743 days ago), so information in it may no longer be current.

My mother was an old-school Scrabble player.

The boards may have gotten fancier over time — raised letter grids, turntables, deluxe edition wooden cases — but the rules were always the same: no proper names, no weird Scrabble Dictionary spellings and no obscure words that you’d never actually hear coming out of anyone’s mouth.

She played with us all — Dad, my brother and sisters, her friends and neighbours.

Oftentimes she’d win and sometimes she’d lose, but her love of the game never wavered.

It played out, seven tiles at a time, over cups of tea and things she’d baked — the board sometimes littered with crumbs from banana bread, date squares, snowballs.

Even with her Alzheimer’s diagnosis 10 years ago, the rules of engagement didn’t change. Someone played with her nearly every day. Only the locations shifted over time, from our family home around the bay, to my parents’ rented townhouse in St. John’s, to their one-bedroom suite in a retirement home, and then — after my father died — to a shared room in a modest long-term care facility.

“I’m some glad I play Scrabble and do crossword puzzles,” she’d say. “Some people don’t do anything like this to keep from losing their mind.”

The crosswords eventually gave way to find-a-words, until she could find the words no longer.

But Scrabble was a constant, increasingly the focal point of our interactions.

When her conversational skills began to wane, the tiles on the Scrabble board were like rune stones, the words they made sparking memories of childhood nursery rhymes or anecdotes from family lore.

Then her Scrabble game started to slide.

One day when we sat at the table to start the game, she looked at it with interest, but complete incomprehension.

“Now, I don’t know anything about this at all,” she said matter-of-factly, settling into a wing chair. “It’s not a game I’ve ever played.”

Thinking about it later, as I walked home, I struggled to maintain my composure.

That was about six months ago. Since then, she has lost her ability to strategize. She is no longer aware that you can add letters to either end of the same word, or even that some tiles are worth more than others. There is no more talk of vowels and consonants, triple word scores.

“How many letters are we supposed to have?” she asks. “How do I know how many letters to play? Where am I supposed to put them? I don’t know what to do with this at all.”

We all know the ravages of dementia, how it can indiscriminately rob a person, not just of places and names and spatial awareness, but sometimes, the very elements of personality that made them who they were.

It steals from family members and friends, too, erasing the shared experiences that connect them to the person who is cognitively impaired.

My mother was told the official name of her illness a decade ago, but like many Canadians, by the time she was able to see a psychiatrist to have her family’s worst suspicions confirmed, she had already had dementia far too long for any Alzheimer’s drugs to make a difference.

For 20 years it has been insidiously chipping away at her memory, eroding her past and destroying her future.

Multi-skilled and a proponent of lifelong learning, she has forgotten all those things she knew so well: cooking, baking, sewing, writing, gardening, knitting, embroidery.

But worse than that, simple things: how to set a table, water a plant, read a book, use a knife.

We still play Scrabble. I suspect on some level she realizes how vital it is as a means of connection, and that it is as important to her as it is to us.

She’s still quick to make words. They’re just simpler now, three or four letters. She no longer keeps track of the score.

We’re more forgiving with the rules. We pretend we don’t see her looking into the cloth bag and picking out the tiles she likes, recognizing that she is making an effort for us, as well as herself.

It has become a ritual, however imperfectly performed: arranging the tiles on their little wooden pews, hearing them click together in the bag like worry beads, forming words that bind us.

It is our old familiar language, but also a new one as we struggle to navigate this ever-changing reality. It is a language of love and companionship, a language of family and connection.

We live in dread for the day when she has lost all ability to use it. The day when we can no longer make links between her world and ours.

When we can no longer say anything with words at all.

Pam Frampton is a freelance writer and editor who lives in St. John’s. Email pamelajframpton@gmail.com