My friend Jo died near the end of last month. She was the best friend I had while that role was still possible for her. Long before that she was my wife, and the mother of my daughter Haisla. She was also my collaborator in a pair of Aboriginal studies courses which we wrote for the Open Learning Agency. That was proud work for both of us, and without her, I wouldn’t have even gotten that gig—for reasons which I won’t go into here. Jo and I had a lot of talks about Aboriginal studies, on top of our talks about our daughter, and about music, and so on.
Then one day she returned a book I had lent her, unread. “I just can’t read this kind of thing anymore,” she said.
I didn’t really pick up on what was happening. I merely remember wondering whether I also would reach a point where I was too tired to read a history book again. But tired wasn’t the issue at all. Jo had always been afraid—more afraid than I realized at the time—that Alzheimer’s would overtake her. She had seen it happen in two previous generations in her family. And it finally happened to her, just as she feared. I didn’t notice it arriving because I wasn’t looking for it, perhaps because it hasn’t been an issue in my own family history.
One day—on moving day, actually, when I moved into the very place where I’m staying now—it became apparent to just about everybody at once that Jo wasn’t at all herself. From completely self-sufficient, she diminished over just a few months to the point where she needed a keeper. Then a few months after that she required professional care. The family scouted out what was available, then moved her into the same fine extended care home where, after five intervening years, she died last month.
In that home, we saw her move from confusion to loss of language, from mobility to an inability to do the simplest things for herself. Every case of Alzheimer’s proceeds differently, since the disease attacks any part of the brain indifferently. Thus, despite all her other deficits, Jo never forgot her people, her children, me, her other friends, whom she continued to respond to until she lost the ability to respond at all, in any detectable way. That particular point was passed perhaps a year ago. After then it became more and more difficult to tell whether, in visiting the room where she was, we were visiting Jo at all. It had been hard enough already to go there, even when she was still capable of a response.
Still, she had visitors, a function of the tremendous loyalty people who knew her had towards her, a function of who Jo had once been, not really of what was remaining of her.
When did Alzheimer’s change from the disease of a living person to the disease of a dying person? Somewhere it did. After awhile Jo’s existence seemed like nothing else but a long and pointless dying, a death in life.
Finally early in August, she ceased eating. This wasn’t the cause of her death, as we had explained to us, but simply a symptom of it. Her body, having embarked on dying, simply didn’t need any more outside fuel. She drank limited fluids after that until finally she stopped that too. Three weeks after first refusing food, finally she ceased breathing.
It felt so ambiguous at first. Should we really feel so relieved that Jo had died? Was relief a proper emotion when such an important person has passed away? Alzheimer’s is that kind of disease. It can make a death ambiguous by stealing the person you love away bit by bit. Most of Jo had died before her body did.
While she could still talk, while she still was mobile, Jo had whispered in a friend’s ear, “I’ll be glad when all this is over.”
We could be glad it was over, too, that the dying was over. And that feeling mixed with the arriving grief. Because real death is not ambiguous at all, as you soon become aware. It is an absolute. We will never see Jo again. She is not just out of the room. She is not just away somewhere. Her absence from our lives is absolute. There’ll be no encores.
With death made unambiguous, it is finally possible to miss her, to mourn her, to remember her, to remember our lost friend (our lost mother, our lost sister, our lost auntie, our lost grandma) to lament the one the disease stole from us without that image being obscured by counter-images of her long, relentless decline.
I can remember the talks, her endless kindness, her wicked, sometimes wickedly dark, sense of humour. I can remember the Jo who was. I can cry for her, regret her, without my honest grief being soiled by pity and horror.
Finally I can miss her. Because the disease went away too, with her death.
In one of our final conversations before she left, knowing what awaited her, knowing her productive life was behind her, she asked me, “Have I done enough?”
Oh yes, I told her. Yes, you have.
I’ll talk about that “enough” sometime, another time.
1963 photo by Bob Cain.