After 20 years of Alzheimer’s, the losses pile up

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This article was published 14/05/2025 (507 days ago), so information in it may no longer be current.

It’s been two decades since my siblings and I began to notice our mother was slightly off-kilter.

She was having trouble following explanations, becoming more gullible about things she heard, and starting to repeat herself.

Nuance and subtlety were becoming lost to her.

In 2005, I was seeing the man who eventually became my husband, and mom was uncharacteristically insistent upon meeting him, even though it was early days; far too soon for us to be introducing each other to family members.

She was impressed with the fact that he regularly appeared on our CBC suppertime news and, being a loyal CBC viewer — as well as an avid newspaper reader — she badly wanted to meet him.

When I repeatedly said no, but that if anything came of the relationship she’d be the first to hear it, she became peevish — which was not her personality at all.

She was fixated on the subject, when normally she would have been pragmatic and said, “Fine. Whatever. When you’re ready, we’d love to meet him. As long as you’re happy, we’re happy.”

That was one of the first red flags.

When her family doctor told her she was just becoming forgetful as a normal part of aging, she was thrilled. Those were the very words she had hoped to hear.

In her journal she writes of that red-letter day: “I was so happy, I gave the doctor a kiss.”

I didn’t think it was that simple.

It would be nine years more before she finally saw a psychiatrist and was given the official diagnosis: Alzheimer’s disease. It was what we suspected but still had been dreading to hear, because now there was no going back.

Those were nine years of further cognitive decline. Nine years of forgetting to turn off the stove, forgetting to throw out spoiled food, forgetting things she’d told us the day before.

Nine years of denial.

By the time we learned for sure what her illness was, the Alzheimer’s was too far advanced to make a drug like Aricept — used to treat memory loss and confusion — of any benefit to her.

The Alzheimer’s Society pegs the lifespan of someone with the disease at eight to 10 years on average.

For mom, it’s 20 years on and so much has changed.

I can hardly believe how much she has endured and lost.

She no longer knows where she lives, or why. She does not recognize her children, although I’m sure on some level she still knows we are hers.

She forgets her grandchildren and is unable to have any meaningful connection with their children — two generations completely lost to the mists of dementia.

Last week I showed her a photograph of one of those youngsters, pointing to my cellphone screen.

“Oh, she’s cute,” Mom says, but there’s no spark of recognition or comprehension, and I realize the image of the little girl posed proudly in her birthday dress has already disappeared from her mind.

She doesn’t know who and what she is missing.

If Alzheimer’s has a single upside, that is it. At least she doesn’t have to cope with the pain of that reality.

But we know. And it’s difficult to accept that our family tree is expanding without her knowledge, let alone the benefits of her love and guidance.

Knowing what the road ahead holds for her is difficult to think about, the unrelenting erosion of who she is and what she is able to do.

Knowing that even the sepia-toned snippets of memory she does retain will soon drift away like dandelion seeds on the wind.

But even at this stage there are moments of levity. And we’ll take them wherever we can find them.

At a Mother’s Day tea last week, a staffer at the retirement home offered to take a group photo of mom, my husband and me, and another resident.

“Would you like me to take a picture of you with your family?” the woman asked.

“Well, I would, but I don’t know where they are!” mom said.

We all laughed then.

“Oh, you mean these people here,” she said, looking around the table. “Sure!”

Afterwards, in the lobby, in the absence of conversation, she burst into a rollicking — albeit garbled — version of one of her favourite songs, My Bonnie Lies Over the Ocean, her choice of words made more poignant by the fact that her father was lost at sea in 1955:

“My daddy gets up in the morning,

My daddy lies down in the sea,

My daddy gets up in the morning,

So bring back my Bonnie to me…”

Then she pulled me to her and kissed my face.

“You’re such a good girl,” she said.

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