My dad has Alzheimer’s. I have contemplated sharing his story for a long time. The words have just never come. Even now, it is a slippery foe that is often vague and confusing, cloaked in denial until it can be denied no more. I’m not sure how to tell his story yet.
He hates the disease that has addled his sense of reason and recognition. We can’t even say Alzheimer’s disease in his presence. We call it his brain disease in order to avoid a boisterous outburst of denial. Brain disease he can accept. Alzheimer’s? Never!
So much of our family conversations run around what dad remembered, who he recognized, was it a good day or was he miserable, is he sad, was he lost, did the story he told ring true, or was it only – as he would say – in his other land. We fall down the rabbit hole with him in each conversation. On a good day, we don’t fall far. On a bad day, there are white-knuckle turns and explosive anger and no amount of reasoning to put an end to the fall.
Sometimes, it is a free fall for days.
And through it all, there is my mother.
I have bandied the word caregiver about through my career as a reporter, but watching my mother endure this shift, the change, this loss, completely reframes my notion of the word.
It is one thing to remember how she cared for me. I am her child, and as my mother she cared for me the way mothers do. But watching her revisit the role with my father – her husband, her partner in the adult journey of life, the man she worked and struggled and worried and argued and loved and parented with --all of those things that adults do in their journey together. It is jarring.
And now she has to remind him to take off his slippers before he crawls into bed. When I call to talk to him, she reminds him that my name is Gayle. That I am his daughter. That I live in Sarnia.
Moments later, when he doesn’t like something she shares with me on the phone, he begins to shout at her, cursing in his anger, and she calms him with the same tone she used on me 40 years ago.
Yes, she hears him.
Yes, she understands.
No, Gayle isn’t telling her lies about him.
But this is his favourite part of the John Wayne movie and he should pay attention so he doesn’t miss it.
And in her caring she has calmed him. Soothed him. Distracted him. And she is alone with him again in the living room, the phone a lifeline to someone else who is fully aware.
Along the way, she has lost friends who do not understand that dad’s outbursts are temporary and borne from the disease. Truth be told, it’s probably partly from the fact that dad was always feisty and determined to do what he wanted to do.
And while Alzheimer’s robs him of the mental agility that time is simultaneously stealing from his physical body, poor mom is wearing the scars of a life lived in altered isolation. Her life’s love only partly present. Her journey marred by the loss of friendships and social outings.
So while elections are won and lost; while cars are brand new and then broken; while relationships are solid and then sour, through it all there is a tiny woman who wakes every morning to reintroduce herself to her husband, and spends the day saying goodbye to the man he was, then she tucks him in to bed at night, a little less than the man he was before.
And the world keeps turning.