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Following the Road Map of the Heart – Winnipeg Free Press

Posted on by Neons

Opinion

I often read Alzheimer's related websites, hoping that one day I will find a great guide to my mother's condition.

Like the ever-hopeful library patron who inquires about a book that never appears on the shelves, I look for a detailed road map showing all the twists and turns my mother took until she reached her final destination.

But the path to Alzheimer's disease and dementia in general varies from person to person, although there are common signs along the way.

I try to fit my mom's behavior into a textbook timeline and they don't always match. I know that trying to prepare for the inevitable is a means of self-preservation. I also know that there's no way I'm steeling myself for the dozens of meltdowns that could happen in the coming months and years.

Alzheimer's disease is often called the “long goodbye” because a person with it can lose elements of their personality, as well as much of their memory, long before the disease. But I think of it as a million goodbyes, because every time I have to mourn what my mother can do, I stop myself.

As much as I try to make the most of the time I spend with him and appreciate the here and now, I can't help but notice the little advances as the disease progresses.

Sometimes I'm surprised to see some of the abilities that I thought were gone forever come back, which is always a relief, but I often wonder if these flags and rallies are just tiring and disorienting.

How terrifying it must be to live in this land of confusion where your brain no longer listens to your direction.

Before Christmas, my brother made a fun video on YouTube with animated pictures of my mother's relationship while singing It's the most wonderful time of the year. Most of the photos were old so some relatives are long gone and others are much older now.

When I played it for my mother, she only recognized one person in the video. Not himself, not his siblings or parents. Only grandfather.

It was a startling indication of how much his memory had declined—at least at that moment. That doesn't mean he'll never know the faces of his family again—he might suddenly remember them all tomorrow. But it's a reflection of how fragile those memories were, and it's sad to think about.

There are times when he recognizes us, and there are times when he thinks my siblings and I are his long-term care home staff or fellow countrymen.

“I'm sorry, I forgot your name,” he said to me on a recent visit as I was setting up the Scrabble board.

“Pam,” I say.

“Oh?” he says. “I have a daughter named Pam.”

“I am your daughter,” I say.

He laughed a lot at that, a lot of laughs, and he always laughed of his own accord, and so did I.

However, sometimes it's hard to adjust to this in-focus/out-of-focus sphere that mom lives in; the circus mirror world where he lives alone.

One of the best pieces I've read about Alzheimer's is a 2014 article by Brad Hundt from the Pennsylvania Daily Observer-ReporterExcerpt from the University of Pittsburgh Alzheimer's Research Centers website.

Hundt wrote about the progression of the disease; About how the friends and family of a person with Alzheimer's become strangers, and in a sense, a person with Alzheimer's becomes a stranger to their family and friends.

He also cited a 2008 study at the University of Indianapolis on how grief affects loved ones of people with Alzheimer's disease.

“The focus of research is on the idea of ​​'anticipatory grief' and how someone mourns it before they die…” he writes.

For the first time, these words expressed exactly what I felt.

But I don't want to suffer unexpected grief, and I also don't want to meet my mother.

As long as I can, I sit with him and quietly cheer as he sings softly to one of his precious, spontaneous acts: