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EVERYTHING KING: Family struggling with Alzheimer's diagnosis

In this week's column, Wendy opens up about a family member's battle with dementia and the difficult road ahead
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Purple has always been my favourite colour.

It still is, but it has taken on a more significant meaning in recent days as someone I love has been diagnosed with Alzheimer's disease. Purple is the symbolic colour.

Laura Wayman, who is known as the "dementia whisperer," suggests it's because purple is a mixture of red and blue: “Dark red symbolizes things that are mysterious or secretive. Blue brings to mind vast things like sky and ocean and cold emptiness. To draw a comparison to those living with Alzheimer's, often the sufferers and their loved ones are sucked into a mysterious disease that is like a veritable vacuum.”

My take? Yes, it is like a vacuum because it completely sucks!

It has taken many months for my family to come to terms with the actual diagnosis.

This is the first time I’ve felt comfortable writing about it. I also waited for permission to do so.

We are new to the journey and that is what it is — on bumpy roads with twisty turns, roundabouts and pitfalls.

It took a long time to get an actual diagnosis, which finally came after two cognitive tests and a brain scan.

At first, you just have odd feelings that something is not quite right with your loved one, but it is nothing you can put your finger on.

You continually ask yourself, is this just a sign of getting older?

Haven’t we all forgotten our glasses, keys, wallets, water bottle, where we parked the car, or why we walked into a specific room?

Is it just a character trait to be a bit slow to respond to questions?

Why is the relative asking us the same questions over and over?

Honestly, and I hate to say it, but it is kind of a “man” thing to not pay attention. So, if he forgot to get everything on the grocery list, is that just because he’s a guy?  Maybe he just wasn’t listening.

But the incidents started to pile up. He could not figure out how to use his cellphone. He pushed every button on the TV remote for no apparent reason.

He stares endlessly at the calendar, but wasn’t exactly sure how to read it. Same with the clock. He knows what the clock says, but seemingly has no idea what it means? Was it morning, afternoon or night? Does it matter? Bedtime might be after supper or it might be 10 p.m. 

There seemed to be no rhyme or reason.

Over several weeks, we realized he had no memory of TV shows we had just watched, or the story line of a movie we had seen.

He’d watch the same shows over and over, day after day, with no realization he had just seen it. He watched The Masters golf tournament weeks after it was over.

I will tell you the absolute worst thing: He knows it. He is aware there’s something wrong. He searches for names or words or stories that are almost there within his grasp, but he can’t grab them.

He knows his family is trying to help, but he gets angry that we seem to be taking over some of his responsibilities. 

If you will indulge me, I’d like to do a future column on what happens to caregivers. That’s a whole different hell. I wouldn’t wish this diagnosis on my worst enemy.

Over the coming weeks, I’m sure I will learn more about it and get tips on how to cope and how to make things easier for all involved.

Statistics suggest 55 million people around the world and 11,000 people in Simcoe County suffer from Alzheimer's disease or some form of dementia.

My family is certainly not alone, but that is the way it feels. I am angry, worried, frustrated, stressed, sad, and heartbroken. And I'm not even on the front line.

Memories, to me, have always been a huge source of comfort and warmth.

How many great conversations start with remember when? I wouldn’t even know what to do if mine were slipping away.

One day my relative came to me crying saying, “There’s something wrong with my brain. It's not working. There's nothing in there.”

That is a day I truly wish I could forget.

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About the Author: Wendy King

Wendy King writes about all kinds of things from nutrition to the job search from cats to clowns — anything and everything — from the ridiculous to the sublime. Watch for Wendy's column weekly.
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