I was with my father Roméo when he was diagnosed with Alzheimer’s disease. A surgeon broke the news: “Our conclusion, sir, is that you are in the early stages…” We were seated together in a consulting room at the Defence Medical Centre in Ottawa.
Dad showed no reaction. He was very polite to the doctor, and after we left I expressed my concerns: What does it mean? What can we do? He had no reaction. Looking back, I think he was determined to keep his fears and sorrow to himself. My father had lost friends to this insidious disease; he knew what it meant, and did not want to burden the rest of us.
In all the weeks that followed he never spoke the world “Alzheimer’s.” He never betrayed any anger or frustration; he never showed depression or worry. This was my father.
Probably the first symptoms of the disease occurred in his last months as Governor General, in 1999. Of course the family did not recognize it at the time. He began to lose words: “The machine that cooks bread,” he’d say. You mean the toaster? “Yes, yes, the toaster…”
Alzheimer’s does not discriminate in its victims, but a public figure suffers a particular agony.
At home in New Brunswick, he was always greeted by well-wishers. These were people he had known for years and no longer recognized. He looked strong, and acquaintances did not know of his illness. Dad would become agitated – “Who is that guy over there?” I learned to fill in the gaps in conversation.
Roméo desperately resisted portrait-sittings; he worried about attending the unveiling ceremonies. When his portrait was shown at Rideau Hall in 2003 they made him deliver a speech. Both of us were reluctant to go. We felt this tension, and I pleaded with him: “Dad, you’ve got to stay with the text. Just read the text.” He’d ad lib and lose the thread of his thoughts. I cringed.
Then, I learned.
Alzheimer’s patients, as they lose more intellectual capacity, become oblivious to the impact. As a doctor explained to me, if Alzheimer’s has one horrible benefit, it is that at the moment it is most devastating, the patient is least aware.
I learned not to confuse my discomfort with my father’s pleasure. If it made him happy to visit a mall, even if it brought awkward moments with friends he no longer recognized, what sense did it make to keep him isolated?
Roméo did not want to be a prisoner at home. He enjoyed everyday things: getting out, going for drives, visiting Tim Horton’s. He liked soup and spaghetti, and touched the food with his fingers. It brought happiness in his final days.
Three weeks before my father passed away in 2009, Mr. Chretien came to visit. He sat close and spoke to him intimately, but Roméo had no reaction. I could not tell if Dad recognized his old friend.
Today, I speak at an annual Alzheimer’s Society banquet in Fredericton. I tell families that endure what we endured: overcome every tendency to isolate Alzheimer’s sufferers and shield them from the world.
Get them out! They should have pleasure or amusement in their lives. If they want to eat spaghetti with their hands, what difference does it make – except to them?
(Editor’s note: the author is President of the Privy Council. His father served as Governor General from 1995 to ‘99. Mr. LeBlanc’s essay was originally published August 31, 2014)