What is it like to live with Alzheimer disease? Below, Canadians in the early stages of the disease share their experiences, thoughts and feelings. They offer practical tips and suggestions and tell us how others can help.
A family affair
By Amanda Wootton

Although one of my aunts does not have Alzheimer disease, my mother, aunt, grandmother and all of her brothers and sisters suffered from early onset Alzheimer. My mother is the only survivor. Only in her early 40s, she is now in a home. I got tested to see if I have the same gene as my mother.

This in turn would tell me if I will get the disease in my 30s. My brother has chosen not to get tested. I do have the gene! And now my four-year-old son has a 50 per cent chance of getting it. I find it very hard to get through a day without wondering what will happen to my family. I think that everyone handles Alzheimer in their own way, which is what makes us all individuals.

If I handle one problem one way and it does not work, maybe someone who is having the same problem could help me and others. One thing I know for certain is that the more I talk about Alzheimer disease, the less I fear it.
Be strong and fight
By Carl Steiner

For many decades, I served thousands of Mississauga residents as their neighbourhood pharmacist at a small, independent pharmacy I opened in May 1952. Since my retirement, things have changed to say the least. I don’t remember when it happened.

I don’t know who this “Alzheimer guy” is or was. He may have fabricated something to terrorize fragile seniors. When you hear the word “Alzheimer” uttered by a friend, relative or doctor, you become fearful. But I am writing this to tell you that you shouldn’t and mustn’t be afraid. You should not think that way.

You should not believe that you are “alzheimerish.” Fight it! Think positively and be assertive. Remember what you have done in the past and be proud. Think of the good times and good friends. Don’t feel sorry for yourself. If you do, you will succumb to this disease. I see friends that I have known for many years.

When they approach me and shake my hand or hug me, I smile and then say, “Sorry, I recognize and know you but I can’t remember your name.” I then get their name and write it in my book. Eventually, I will have all my friends’ names in my book.I don’t think that I am “alzheimerish.” I may have to think about it in the very near future.

Then again, if I fight it and think positively, maybe I can conquer this Alzheimer fellow. It would be a pleasure to laugh at him and say goodbye.
Life after diagnosis
By Chip Gerber

Lately, I’ve been pushing myself and doing a lot. I set limitations for myself but find them difficult to follow. There is so much I want to do in life, but Alzheimer disease has changed my goals.

I was diagnosed with the disease in 1997, and the long good-bye goes on. Not that I mind. I’m not ready for Heaven yet, but there are days like today that I just have to slow down and rest up for tomorrow and what it may hold for me. It’s a challenge, but one that I accept. The Alzheimer association has been a tremendous help. Then there is my medication, Aricept, and my doctor. I must say I have a support system that I deeply appreciate.

On days like today, I’m glad that they encourage me and cheer me on. I need it. I don’t want sympathy, but I do need support and lots of it. There is life after diagnosis and I plan to do my best to live it.
Don’t just smell the flowers
By M. Rogerson

I am in the process of diagnosis. All tests are complete except for the memory part. The prescription drug I have been put on causes dreams in 3-D every night. It is like going to a movie, with me as the star.There is no time to feel fear, grief, or any negative thought.

I treat this as a new path in life, waiting to be walked on, discovered, and enjoyed. When faced with the neurologist’s findings, I felt my world fall into place. I did not consciously decide to live each day differently, but I find I do.

Previously, I had reached the point in my life where I stopped to smell the flowers. Now, I see and touch them.

Where a child or grandchild were loved by me, now they are enjoyed to the fullest. I have taught them by example, to enjoy every moment. And we do.
Don’t waste a single day
By Marilyne Clegg

For many years, I was aware that something was wrong with me, but because it’s practically impossible for a doctor to detect something wrong with an “apparently normal” person during a quick doctor’s visit, I, like many others, was told that any problem I thought I had was simply due to over-extending myself personally and professionally.

So on I went. Then one day, I simply forgot what I was doing at work. I literally forgot why I was there or what I should be doing. My job went first. Then one day I got in my car and literally couldn’t remember how to start it. That passed, but on another day, I nearly killed myself and my daughter. I willingly—but with huge amounts of sorrow—gave up driving.

Yet my family and I continued to simply “do the best we could” with all my little but accumulating changes. I’m now 54 and the changes are not so “little” anymore. Where once I knew I was about to visit “fog hollow,” I no longer always know. I’m not always safe in the kitchen anymore, and I often struggle to understand conversations. I never, ever leave my home alone. I can now get lost without any warning, and yet, because part of me knows I “should” know where I’m going, I don’t ask anyone for help.

As a hobby, I once designed and sewed little heritage garments and donated them each Christmas to a local shelter. Now, I’ve forgotten how to create them. I no longer do any of my finances. (The poor utility companies became weary of receiving cheques dated in past decades! It doesn’t help to re-check things. In my mind, it simply “looks right” no matter how often I check it.) And on it goes. And I get to watch it happen, day by day, week by week.

But, although Alzheimer disease will win in the end, it’s going to have to go like hell to catch me. I don’t waste a single day: I live with laughter and love and simple joy in so, so many things.