Living with Alzheimer disease can be described like this: The spouse with dementia is travelling in a foreign land where he doesn’t know the language or the customs. He relies on his spouse to be his guide and translator. Without her at his side, he may become lost and confused.
It’s an apt analogy for Shirley and Tony Bidwell whose best memories are of their travels around the world.
“I was getting very forgetful,” says Tony Bidwell, a retired biology professor and author, who was diagnosed with Alzheimer disease in 2011. “That’s one of the problems with the disease. I’m working with a tool, a hammer, say, and I’ll put the hammer down and not have the foggiest clue where I put it.”
Tony claims the diagnosis hasn’t affected him very much.
“I feel absolutely fine. I have no problems whatsoever. I’m in good health and I’m active. I keep busy. I walk at least four miles a day,” he says. “The major problem is simply short-term memory loss. My long-term memory doesn’t seem to be too bad. At the moment, I’m writing my autobiography and I can remember almost everything that happened. Except everything that happened yesterday.”
Tony was born in Halifax but lived all over the world because his father was in the Navy. Shirley was born and raised in Upper Sackville. I’ve joined the couple at their lovely old farmhouse on the Wallace River that they bought, renovated and then retired to in the 1970s. Since they moved for Tony’s work as a university professor (until their children were born, Shirley taught biology at the university level), living in Kingston and Toronto, Ontario, as well as Cleveland, Ohio, the family spent their summers at the Wallace River property.
|Tony has played piano since he was a boy and learned music mostly by ear. He continues to play over 500 hymns and enjoys music as much as ever.|
After a visit with the gregarious and charming Tony, Shirley and I drive a short distance along a winding, snow-covered back road to the home of their youngest daughter, Gillian Allan (the Bidwells have four children; two daughters live nearby, another daughter is in Halifax and their son lives in Kansas).
Shirley says she was suspicious there was something wrong long before the diagnosis in 2011.
“Tony did a lot of the banking online and he’d go in and not be able to tell the difference between a bank statement and our Visa statement. We were talking about that and I realized if he doesn’t know the difference between these two then he has a comprehension problem. It wasn’t long after that I took over all the banking.”
Geriatric specialist Dr. Kenneth Rockwood told them that Tony is in the early stage of the disease so his symptoms are mild.
“It’s emotionally draining,” Shirley says when asked to describe her caregiving experience. “I have to be prepared for the kind of conversation we’re going to have so it doesn’t lead to a confrontation. I have to change how I initiate a conversation. Things I want to talk about, I can’t. He’ll say to me, ‘You’re not explaining it carefully enough’ and then I know he’s not following the thoughts. He can hear the news and take it in as long as the news is on but then it’s over.”
Gillian explains why most people wouldn’t be able to tell that her father has Alzheimer disease.
“He has very good coping mechanisms and extraordinary verbal skills so he can keep a conversation going very well. It might not be an accurate conversation, though,” she adds.
“I don’t correct anymore,” Shirley says. “It just causes too much upheaval. That’s more or less the change I’ve had to make: letting go.”
Shirley describes both she and her husband as Type A personalities who are driven and focused and accomplished.
“Tony is a perfectionist,” she says. “He can’t let anything slide. It has to be the best. And now it’s more so. The salt and pepper has to be exactly right in the cupboard and if I happen to move it to get something out, I don’t put it back because I know he’s going to do that. You have to let things simply roll over you. Which is unusual for me.”
Her husband frequently tells her there is nothing wrong with him, that he feels fine.
“He says to me, ‘You don’t let me do things, you think I’m incompetent. Well, I am competent.’ He cannot see anything wrong,” Shirley says. “I can’t explain the breakdown of the brain cells that won’t allow him to do complicated thought processes anymore. Dr. Rockwood has explained this to Tony but he forgets it as soon as he leaves the office.”
What Shirley found more difficult to deal with than the diagnosis was telling their close friends.
“It was the public stigma that was most hurtful.”
Gillian says people are already asking her if her father still knows her.
“We’re a long way from him not knowing us,” she says, “but people’s understanding of Alzheimer disease is that you immediately don’t know anybody and you don’t know where you are and you get lost. I tell people to call, to drop in.”
I ask Shirley how she copes with the changes in her husband, in their marriage.
“It’s love,” she tells me. “It just has to be love and forgiveness. I learned a long time ago that forgiveness is the best way to happiness. If you hold a grudge, the grudge is hurting you more than the other person. And you don’t take personally the things that are being said to you. I know that he is ill. I’m not ill. I’m the one who should back down, I’m the one who must avoid this. You take on that role.”
Yet dementia will be only a very small part of their long life together. What is Shirley’s best memory of their six decades of marriage?
“Travelling together,” she says with a smile. “We did a lot of that, with the children, when Tony was lecturing. We did China, Russia. I think of those wonderful travels we did, hiking and climbing mountains – we climbed in the southern Alps in France. Those were tremendous times together. We bicycled in France. I think that was our greatest excursion.”
When I turn to ask Gillian some questions, there are tears in her eyes.
I recognize the toughness in Shirley, the wife as caregiver thinking for two, and the emotion in Gillian, the daughter witnessing this new, unplanned journey with dementia that both her beloved parents have now embarked upon.