Diseases

INTRODUCTION
I remember the first day it happened. I remember the first time she forgot something big. It wasn’t the kind of lapse we all have from time to time—forgetting where we put our keys or our cell phones, or where we parked the car. This was a big sudden void. Right after it happened, that morning eight years ago now, I felt a discomfort insert itself at the back of my throat that hasn’t really eased up since. It’s hard for me to remember what my life used to feel like. It’s hard for me to remember my old mom.

We had been sitting having a visit with my sister-in-law, Lori, talking about life things: the weather, the grandkids, jobs, the progress of our summer garden. Everything seemed perfectly normal. My sister-in-law at some point brought up the subject of her old cat. “I didn’t want to tell you, Joan,” she said to my mom, “but we had to have her put down a few days ago. God, whatever you guys do, don’t tell Duray about it as he’ll be devastated.”

My brother Duray was in jail, as he had been for the last twenty-five years, for first-degree murder—a murder he has always denied committing. He isn’t really up to speed on what is going on around our lives out here in the free world, and he’s very sensitive to anything the least bit upsetting. I’m sure it’s because he feels so helpless. I think that’s why Lori wanted to spare him the news about their cat.

“I would never say a word,” Mom said. Lori went on about how sick the cat had been and that she hadn’t found the right moment to tell Duray she was gone. We talked about it in detail for at least fifteen minutes. Mom seemed to be carefullylistening to the story, consoling and responding in all the right places. Lori repeated again as she walked out the door, “Please don’t say anything, okay, you guys?”

Mom said, “We won’t, Lori. Mom’s the word.” And we all had a bit of a laugh.

Lori waved goodbye, hopped into her little blue compact and pulled out of the driveway. Before the car had even disappeared down the road, Mom’s phone rang, and it was Duray. The first thing that came out of her mouth, was, “You wouldn’t believe it, but your cat died!” I stood there in her kitchen in disbelief.

“MOM!” I waved my arms in the air trying to get her attention.

“What?” she asked with her hand over the receiver. “I’m on the phone!”

“Jesus, you weren’t supposed to tell him that!”

“Tell him what?” She looked at me blankly. She really didn’t know what she wasn’t supposed to
tell him.

“About the cat dying! What are you thinking?”

That was the day. From one single second to the next, my life, my mom’s life, my dad’s life, my brothers’ lives, the lives of all of our friends and family, were altered profoundly. My mom had started the journey down the lonely, confusing road called Alzheimer’s disease.

I would spend the next two years in denial. I made excuses for both my parents over and over again as the memory thieves slowly stole things from right beneath our noses. I chalked the frequent lapses up to garden-variety old age and tried to leave it at that. My dad had had a stroke several years earlier, so we already knew he had severe memory and mobility issues, but my mom was the normal one. She was the glue that held everything together. She dedicated her days to looking after my dad, coordinating his appointments and doling out his medications. She looked after their house and their yard and their meals and all the driving. I desperately needed her to be okay and I was also too scared to think about what was happening.

I must have hoped if I ignored it enough, and wished it away often enough, my mom would start remembering again. But that’s not the way Alzheimer’s works. I have come to think of it as a cruel and haphazard sculptor. It chisels away at a person, one tiny piece at a time, exposing a mind to every form of loss and sadness. Uncovering every nerve and every bone and every vein. It doesn’t stop until it cuts away the last breath. We lived through a small stretch in which my mom knew she was forgetting things. It seemed only a matter of hours to me, but it was actually a short few months where she was aware of things going missing and time being lost and tasks being left undone. She admitted to me once or twice that she knew she was forgetting things. I will never forget her saying to me, “I know I can’t remember the way I used to, Jann. It could always be worse, you know. I hope you never let me become a filthy old lady.” Those words are stuck inside my heart like wet leaves in a gutter.

I have spent the last few years in various stages of grief and fear and frustration and anger. I’m not sure half the time if I am doing things right with my mom, or screwing things up, but I do know that none of that matters. What matters are the moments spent with the people you love. What matters is setting judgement and resentment aside so that tolerance and patience and kindness can move into your soul and live there in their forever home. Life is never dull. That’s what Mom always says. “Life may be hard, but it’s not dull . . .”

Mom’s journey, and my journey with her, is far from over and for that I am grateful. In these last eight years I have learned more about compassion and empathy and forgiveness than I ever thought possible. I’ve learned that something good can come from something bad: facing adversity can make you a much better version of yourself. I’ve learned that having a sense of humour is crucial in order to survive these trying days. I’ve also learned that feeding my mother, making her a great home-cooked meal, provides both of us with grace and solace and peace, that food is so important for our wellness and contentment. You can soothe pretty much any heartache with a loaf of bread and a hot bowl of soup!

And I’ve learned that writing it all down can save me, which is what I started doing when everything around me began to feel unsteady. Seeing what was happening in front of me on the page made it much less daunting. And sharing my thoughts and feelings on social media made all the difference. I guess I wanted to reach out and tell somebody, anybody, about what was happening to my family. I didn’t want to feel alone in a room with Alzheimer’s. I wanted to throw open every door and window and let the light in. I wanted to unload some of the burden of carrying my parents’ secrets. I wanted to rid myself of this weird shame I was feeling because they were forgetting themselves. I started feeling like I was being forgotten too, lost in this pile of nothingness. It all seemed like such a mess, and some days it still does. I was talking with a friend about how I was feeling a few months ago, and she described how she felt orphaned when she lost her parents even though she was a grown-up. I think that’s exactly how I feel, even though Mom is still here physically. I feel like an orphan.

It turned out that sending out an account of my daily adventures with my folks was life-changing. People started writing back, sharing their doubts and fears and frustrations with me. It changed everything in such a positive, wonderful way. I am so grateful to all of them—to all of you. It takes bravery to share your troubles. It takes grit and guts and gumption. Thank you for easing my troubles, for putting your wisdom and pain out there for everyone to benefit from. I can’t tell you how many hours I’ve spent propped up in my bed reading through the hundreds and hundreds of comments you’ve left on my Facebook pages. I’ve laughed out loud and cried quietly and I have to say, I feel much less alone for having reached out. Losing someone an inch at a time is extremely hard.

This book is a glimpse into my journey with memory loss but it’s also a journey that thousands and thousands of us are on with our mothers and fathers and sisters and brothers and husbands and wives and uncles and aunts and grandmothers and grandfathers and even children.

Alzheimer’s and dementia have always been there, but perhaps families in earlier generations absorbed their elderly folks into the fold of home more gracefully. Many of us these days don’t have the kind of lives or rooted family structures that enable us to cope with parents, or grandparents, who can’t manage on their own, and we have to find nursing homes for them. Some of these places are great, some not so good, some downright depressing and dehumanizing. It’s an agonizing decision and one that can be hard to live with. So far I’ve been lucky enough to have the means to keep Mom at home with me, and ways to meet the challenges that entails. The stories and the recipes in this book are what I have to share about how we’re managing—about the road my mom and all the people who love her are travelling. It was written with humility, and sadness, and fear, and panic, and joy.

What I’ve learned is that no matter what comes you’ve got to wrap yourself in all the goodness you can muster. That’s what my mom does every single day.

Last week as we were driving into town to buy a few groceries, she told me that she was eighty per cent happy. That made me laugh really hard. “Eighty per cent, Mom? Well, that’s way better than me!”

She told me that I would have to work on that . . .