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Stock photo (Michael Neuhaus/Thinkstock)
Stock photo (Michael Neuhaus/Thinkstock)

How Alzheimer's has changed my life Add to ...

This morning, I awoke with relief. I had only crashed from my bed to the floor, not been catapulted over a cliff toward my certain death, as my nightmare had promised. My medicated mind was playing tricks again.

It seems like just a few days, not three years, since I called to my wife, asking her to sit beside me while I shared some news. The winter sun was filling the room with warmth, and rainbow colours streamed through the stained-glass window. I had just returned from a doctor's appointment and now what I had expected for some time, was diagnosed – I had Alzheimer's.

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Earlier, as I returned home that morning, I remember feeling somehow relieved, even though this was what I had anticipated. All those isolated moments of memory loss, confusion, and indecision, now had a reason – in the same way as when we have a complaint and make a doctor's appointment and part of us hopes the complaint will still be there when we arrive. I was the same person before the appointment as after; I still looked the same. But now I knew I was faced with an uncertain future.

I had had a successful and very enjoyable career as an actuary. I chose early retirement more than 20 years ago, prompted by my concern even then, over my occasional lapses of memory. I knew I had not been performing at the high level I had set for myself. I gave up playing bridge because of my inability to remember the cards being played. Increasingly, I was forgetting familiar names.

I recalled an appointment some years ago, when I had actually passed the verbal Alzheimer's test given to me at my request. Later, I again passed, but because of my history and concerns, the doctor in her wisdom recommended an MRI brain scan. Alzheimer's was then confirmed.

The good part was that now I could do something to slow the process. Instead of phoning my four children with the news of my diagnosis, I decided to write to each of them, to let it sink in when they were alone. Alzheimer's can be hereditary, and I hoped they wouldn't worry for themselves, as well as for me. I thought of President Reagan and his letter to the nation, and his eventual downfall into oblivion. But for whatever reason, I was not worried.

We have also told our friends from the beginning. Most people who meet me are surprised to learn of my dementia. For some, Alzheimer's progresses very rapidly. For others, like myself, the progress has been slow moving – possibly because of early detection and thus, early treatment, for which I am appreciative.

I celebrated my 80th birthday last year and still have plans for the future. Alzheimer's is not a death sentence. I never would have chosen it, but now that it has chosen me, I am concerned, but not fearful. We all live finite lives – I am now on a different kind of journey.

I no longer socialize much, preferring quiet times on my own, and since I now prefer familiar sights, I am thankful my work took me to many distant parts of our world. I begin my day with the Ken-Ken and Sudoku from my daily paper. I read every page of The Economist. I walk for an hour most days alongside the lake and through our country-like parks. I am able to contribute in our book club although I must write down a list of the characters as I read. I can still occasionally beat my wife at Scrabble.

Even the healthiest amongst us, every day, dies a little with some loss or pain, but every day we can grow a little too. I read a recent obituary of someone who died at 95 and he wanted his tombstone to read “Still curious.”

Sometimes when we are going through hard times, we say, “there's a light at the end of the tunnel.” With dementia I know there is no light. But in many ways my life is growing richer. I notice the colours and textures around me as I walk. I am no longer in a hurry to accomplish things. I have time to delight in my family.

I see my life as a movie, in slow motion where the camera lingers on what is important and often a bright light illuminates a scene. In the amazing mystery of how our brains work, I may not remember what I had for lunch yesterday, but all my early adventures are still within me. I have written many little stories from my life, for my grandchildren.

When my wife took over the driving two years ago, I was at first a constant back-seat driver. I have to admit she probably thinks I still am … but I can't believe how pleasant it is now to be a passenger, gazing at the people and sights as we travel on outings, and to our endless appointments.

Alzheimer's is a process, a constant companion, a conjoined twin. While medication has helped, I know of no diet or drugs or surgery that will suddenly cure me. I tire easily but I accept this – I am growing physically old too. I become easily confused, am often dizzy, and increasingly have nightmares, but feel lucky to be in no pain. I know I am just one of many who carry some burden. One of my sons has juvenile diabetes, with no known cure as yet. And you just have to watch the evening news, and the ads for health products between the news, to realize there are many suffering in our midst.

I sometimes think this is my sunset time. The bright light of day is passing and darkness lies ahead. I do not know what the dawn will bring. But right now, in this moment, I am thankful my life is full.

Robin Leckie lives in Toronto.

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