September, 2015
My husband needs to pee. For some reason, before he gets up he puts his pillow on the floor. When he returns from the bathroom, he climbs into bed and looks bewildered.
“Lose something?” I say.
“Yeah, I think so.”
“Lie down,” I say. He does. “What are you missing?”
His head swivels in my direction. He spies my pillow. “A pillow.” He sits up and starts to hunt in his covers. Eventually he spots his on the floor and rolls over and retrieves it.
“I hope you know you’re fodder for a book someday?” I say, grinning.
He laughs. “Yeah.” His laugh is deep and rolls out of him. It’s infectious.
“Would you be upset if I wrote about us?”
“Nope.”
“Good. Because I already have.”
We both laugh. “Consider yourself warned,” I say. “And sleep on your side, not your back.”
“Okay. Remind me again when…did you say sleep on my back?”
“No. Do not sleep on your back. Sleep on your side so you don’t snore.”
He drawls out a long, “Oookay.”
I turn out the light. He immediately flops onto his back. Twenty seconds later, the bee buzz of his snore starts. Softly, then it grows to become an army of insects swarming the air around my head. I know that no matter how many times I poke him and tell him to turn over, he will, but almost instantly he’ll roll onto his back again.
I sigh and tell myself how lucky I am. Our bed is a sleep-apnea-free zone and Bill is still going strong.
Although the numbers have been revised upwards since then, five years into our journey I was told the average length of time a patient with dementia lives after diagnosis is five years. My husband is not average. We are now twelve years into living with Alzheimer’s Disease.
ONE
The Beginning
When my husband was 55 years old, I went to our family doctor and told him I thought Bill might have dementia. The lump in my throat was so thick I could barely get the words out, and as soon as they were spoken I felt both regret and relief. Regret that I couldn’t take them back. That now it was real. Relief that now it was real because maybe there was hope that something could be done to stop, or at least slow the progress of what I already knew was a disease that killed. Our doctor looked at me with some compassion. We talked, or should I say he talked; I listened. If Bill agreed, the doctor said, he would refer us to the Seniors’ Outreach team. They would come to our house to assess him. I said I would talk to Bill. “Don’t worry,” our doctor said, “everyone loses their keys.” But I knew he knew it was beyond that. Don’t worry!
“Okay,” Bill said when I told him what I’d done. And I could see the relief on his face. Like me, he’d known there was something seriously wrong. But until that day, neither of us spoke about what had slowly been becoming obvious for probably two years. Bill was having increasing problems learning new budget programs at work. At home he had difficulty following written, step-by-step instructions and lost his ability to do some tasks he’d done many times before. Minutes after something had been said to him, he’d begun to repeat statements as if they were things he’d just thought of. Tasks were left undone, either because he couldn’t do them or he’d forgotten they needed to be done. He was a born diplomat. He’d always had a slow-burning fuse, but his fuse was getting pretty short, and mine—never long—was becoming explosive. I thought he was being bloody minded. He thought I was…I’m not sure what he thought. We hadn’t talked.
We’d skirted the issues by trying to ignore them. By making changes to our lifestyle that were insidious because they were made with resentment on both our parts. And that led to more and more frequent arguments. We’d separated for some weeks; talked about divorce.
Each of us was afraid of the same things. If Bill had dementia, we would have to take on roles we were not suited for. For instance, I’d had to learn to install new bathroom taps, a home-maintenance job he’d always done. For over 30 years, he had been a ‘boss’. In charge of facilities with dozens of staff and budgets in the millions. He would lose control. Of his job, of his health, of his life. I’d had various jobs—all dependent on my ability to come and go as I liked. There was stigma attached to that sort of illness. We would lose our standing in the community. Our friends. Possibly our families. And one another. There was no cure. So, best not to talk about what was happening. Ignore it, or call it stress.
But that day the dam burst. Or the floodgates were opened. Whichever metaphor you prefer. That day we began to talk about what was really going on. To look our demons in the eye and begin to conquer them. To assess. To plan. To find out what help was available. To reach out. To grow.