Alzheimer's -- The Memory Thief

There is nothing worse than seeing a loved one deteriorate before your eyes. A once vital, thoughtful, feeling person. Gone. One you remembered as awe-inspiring. How she managed everything despite competing demands. How she picked herself up and punched through life’s ups and downs. That was my mother. Like many others afflicted with the catastrophic disease, Alzheimer’s took her will, her dignity, and the twinkle in her eyes.

Alzheimer’s, or the memory thief as I called it, was a battle with which she struggled every day. It went on for ten years, could have been longer, because the disease worms its way in before you know it. It was a long, drawn-out battle that I helped her fight because in the last couple of years of her life, she could not eat, walk, or go to the bathroom on her own. Her words, as she struggled to communicate, became garbled and never made sense. She rarely recognized her loved ones. From time to time, I saw the semblance of a smile, a glimmer of awareness, a small movement in her upper body. In an instant, these motions disappeared, replaced by a dull look of nothingness. I found joy in these small wins, but I knew that we would both lose the war, and that one day even her fleeting actions would vanish.

In these short-lived moments, I hoped that she was still in there, still remembering her family, the times we shared, and the full life she had lived. I guessed at what she was trying to communicate: was she in pain, hungry, or lost? I learned to communicate outside of the typical verbal and non-verbal gestures and facial expressions. I wondered if she found familiarity, comfort or understanding in my attempts to reach her? I want to believe that she did sense that someone who loved her was right beside her.

Since her diagnosis, much of Mom continued to disappear. Her brain no longer told her how to put one foot in front of the other. It didn’t tell her to clasp her spoon and raise it to her lips. And it didn’t tell her she had a family who loved her. But I knew. I remembered and, until I no longer did, I would be the keeper of our memories.

We weren’t always close, and as many mother-daughter relationships tend to be, we often didn’t see eye to eye. We fought over what it meant to be a woman in Greek culture, the double standard in the treatment of boys and girls, and men and women. I became frustrated when she phoned me four, five and sometimes ten times a day, her voice an urgent squeal of worry when I didn’t answer. Sometimes I didn’t call her back until the next day. Perhaps I enjoyed seeing her miserable — yes, this was passive-aggressive, to be sure. Now I yearn for us to squabble over anything Greek and for her to lift the phone, dial my number to ask me if I made it home safely.

Mom was a creation of her culture — she made the family the centre of her universe. Topics that were distasteful were to be avoided and flung far away from her consciousness. There were subjects she talked about; others never strayed from her lips. We never talked about sex. About menses. Or any of the “taboo” subjects of the day. Oh, how I wanted to have a mom like Mrs. Brady, the mom on The Brady Bunch or Mrs. Cunningham, the mom on Happy Days. But those filters soon lifted, and every topic was up for discussion, no matter how she had avoided talking about it when I was growing up.

It was a hot, sticky day in August, while Mom was in the hospital awaiting her bed in a long-term care home. Mom was in bed, wearing a sweater over her long-sleeve top. “It’s really hot,” I told her. “I like sleeping without any clothes on. What about you?”

She fixed her eyes on mine and said, “You need to keep your clothes off in the middle of the night in case your husband needs to have sex with you.”

I was shocked and amused: shocked to hear these words come out of my prim and proper mother; amused at finding out about her sex life with dad. Too Much Information? Perhaps. But it was a glimpse into a forbidden world in which I grew up.

Mom used to drive like Niki Lauda around the streets of Toronto, later Scarborough and lastly, Newcastle. She drove anywhere and everywhere. Long driving holidays; stints to the mall. No trip was a hassle. No pick up for her kids was too arduous. She worked hard to get her license, failing five times, before she understood what “blind spot” meant. Mom’s first language was Greek, and the words “blind” and “spot” individually made no sense, making her desire for a driver’s licence elusive. She never gave up. Eventually, she figured it out and drove until Alzheimer’s stole what she had fought so hard for — the privilege to drive.

There came a time when Mom didn’t recognize herself in the mirror. I looked on from behind her. “You look good,” I told her. She looked perplexed and said, “I know that woman, she’s always here, looking after me.”

“That’s you, mom, and that’s me beside you.” She turned around, looked at me and shook her head. A tear fell down her cheek.

I didn’t know it then, but she was living in her childhood years, calling out for her mother and father, seeking comfort from absent parents. Even at my age, I wished that I could look to her for comfort, but that mom is gone, hers long dead.

Mom offered me many lessons, even though she didn’t know it. My key takeaways were to live in the moment. During her illness, Mom didn’t worry about the past; she had no regrets about the unavoidable choices she may have made. She didn’t have anxiety over an unknown future; she no longer fretted over my whereabouts or those of her other children. Mom lived in the moment, and perhaps like a young child, her needs were immediate: sleep, shelter, food, and a loving embrace.