It is a lovely sunny day in Oxford, a Sunday in late May and the streets are packed with tourists and students. My father and I are nearing the end of our two-week trip to London, Canterbury and Edinburgh when we decide to use up our train passes with a day trip to Oxford. By mid-afternoon, after being dragged all over the university, Dad is tired; so I park him in a pub with a pint while I rush out to buy postcards. When I return 20 minutes later, he is not there.
After half an hour of searching, I finally knock on the window of a police car. The Thames Valley Police inspector agrees to help when I tell him, "My father has Alzheimer's."
This is the first time I speak those words out loud. It is the spring of 2002 and my father, a mere 60, was diagnosed with the disease only a month earlier. In my excitement over my first trip to England, the diagnosis has been pushed to the back of my mind. Until now.
The police inspector and I finally find my father looking for me. He had simply wandered around a far corner to sit in the sun. This moment marks my first lesson in living with a parent who has Alzheimer's: it's never as bad as you imagine, yet you know it's going to get worse.
Alzheimer's disease is a progressive, degenerative disease affecting the brain. It causes brain cells to shrink or disappear. In fact, a person with Alzheimer's has less brain tissue than a person who does not have the disease. As the illness progresses, it affects each area of the brain and certain functions or abilities are lost.
However, the ability to experience feelings like joy, anger, love and sadness are not affected.
My mother says, "You take it one day at a time." What that means is you don't worry -- or presume -- about tomorrow. You just deal with each moment as it arrives, however it arrives: in a bad mood, in a confused state, in a jovial frame of mind. Each person is affected in their own way and so you have to deal with your own realities.
One myth about Alzheimer's patients is that they are violent. The truth is, the disease makes them slow to process and easily confused, which in turn makes others impatient, even physical.
The patient's frustration with being patronized or manhandled can make them lash out. Last summer, on one of our outings for coffee, my father was standing behind me in line at Tim Hortons. I had stepped forward and ordered, but he hadn't moved and was holding up the line. I grabbed an arm that was folded over his chest and said, "You have to move out of the way, Dad," and he whipped his arm out of my hand. Another lesson learned.
My father is kind, dignified, devoted to family, work and public service. As a child, I helped him around the cottage and went for drives with him. As a teenager, it was his shoulder I cried on when love went wrong. As a young woman, I turned to him for advice on finances. He bought me my first car and knew I'd love a red coupe. We traveled, just the two of us, to Palm Springs and England. Now, I am still adjusting to the changes in our relationship. He is not the father I grew up with and I am no longer Daddy's little girl. I am now the one taking care of him.
With any life-altering illness, you figure out what can still be done and that's what you do. If my father were hospitalized with cancer, we might be playing Chinese checkers and listening to books on tape. But since those activities are affected by Alzheimer's, I have had to find new ones for us both to enjoy together.
This past June, former U.S. president Ronald Reagan died after 10 years with Alzheimer's. The day after Reagan's death, I read a newspaper story in which his friends reminisced about their weekend golf games. Reagan continued to play after his diagnosis, but his friends began having to tee up the ball for him and get him going in the right direction.
That first summer I was home, the summer after our trip to England, I took up the game of golf so that Dad could continue to play. I was the visible reminder to the other golfers that my father couldn't play as well as he used to but he still wanted -- and needed -- to be on the course.
The great irony of how this disease affects me is that it has given me the opportunity to do things with my father we probably wouldn't have if he were well. Instead of being relegated to dog-and- cat sitter as my parents traveled, I have played golf with my father, attended a Rita MacNeil concert with him, gone to plays, movies. We like going out for lunch and he gets to drink the dark beer he enjoys. In attempting to give my mother time to herself and to keep my father interacting with the world, I am actually experiencing more with him now than I ever have.
Even if all of these aren't entirely his interests, my father maintains enough of himself not to complain. Perhaps he understands the motive behind our activities.
There are times when I look at my father's profile and wish fiercely, "I want my father back." I want to hear him whistle, I want advice on RSPs, I want to go for long drives and dig up small pine trees we'll replant in our yard when we get back home. I want to go back to Canterbury and attend a service in the cathedral with him again. Or maybe we could to go Ireland next time, except that he doesn't like Guinness beer.
I want to be Daddy's little girl again.
But I digress. There is no room for self-pity; there is too little time left to waste it on "why me's." While the diagnosis of Alzheimer's disease is devastating, it isn't the worst thing that could have happened. I may be losing my beloved father a little bit every day, but each day brings a new opportunity to be with him, to give him the love and support he provided to me, to create memories I can cherish long after he forgets whom he made them with.
Sara Jewell is a Nova Scotia-based writer and journalist.
