First, came the missing house keys… then, remembering telephone numbers became a struggle.
Then the same questions asked over and over again, with the embarrassed half-smile trying to mask what she couldn’t remember. Then a few years later, the struggle to recognize the street she was on, and where she was supposed to go, and who we were.
“She” was my Aunt Alya, my Mom’s elder sister, and my second Mom. She was diagnosed with Alzheimer’s in the last five years of her life. When I think of her, I think of a presence in my life as powerful and pervasive as it was understated. She was a huge influence on me in many ways, some of which I am only beginning to understand. She was an artist, a perfectionist, an avid shopper for beautiful things, and she could spend hours roaming through the stores, selecting just the right, most perfect piece for her collection.
Even though she never gave me actual lessons on how to bake or decorate cakes, she and my mom are always with me whenever I fiddle around with my culinary concoctions, particularly my imperfect cakes. Or maybe she did teach me, in a way. For as long as I can recall, every birthday of mine was marked by a uniquely decorated cake. Mom would bake the cakes, and my Aunt would come over and start with the frosting, to spin out a birthday treat that would rival any bakery in town. I would sit there, watching her transform the cake as part of my pre-birthday party ritual.
She was there the day I was born, and continued to be a part of the most significant and mundane moments of my life.
But what happens when the person we’ve known as a huge fixture in our lives no longer remembers our name? When we can’t get through to them because they simply can’t seem to process what we’re saying? Where do all the life long memories and moments we shared go? What about the part of our being that was forged by them? Where does that fit now that they are no longer who they were? So many questions remain unanswered.
It’s funny how memories become a part of who we are.
There is, incidentally, a direct link between my Aunt’s story and me finding my way back to painting. As my aunt’s symptoms were becoming more distinct, I started to become curious about how the brain functions, and wondered about my own health.
One day, I came across a site called Lumosity.com and took a standard test online that touched on lifestyle, exercise, diet and hobbies. I realised that I had a long way to go to ensure that my lifestyle was conducive to maintaining a healthier brain. As a result, I made a resolution that the first thing I would do was go back to painting in the New Year, and the rest is history. It was the best decision I had ever made. Painting revived me and helped fill a huge hole in my being where a great deal of sadness and emotion lay fettered, waiting for a way out. For me, painting became the way.
My only regret is that my Aunt never saw any of my paintings.
Losing my Aunt over and over again left me with an overwhelming pain and sadness. One of the things that helped me cope was seeking a way to turn painful memories into joyful ones. My family had little to no support in Jordan for coping with my Aunt’s illness. It was overwhelming and draining. Life might have been so much more manageable had there been a place where we could turn to for advice, information and help with finding adequate services. In other words, an equivalent of the Alzheimer’s Society here in Canada.
Wherever we are on this earth, we need more services to support families living with dementia. We must continue the research to figure out how to avoid and/or cure this horrific disease. And our loved ones afflicted with this disease deserve to be cared for with compassion, and to live in dignity for the rest of their lives.
So now, each spring, just before my Aunt’s birthday in April, our home swells up with chatter and laughter of friends. I start to plan for this event weeks in advance, and I feel a sense of anticipation, excitement and joy as I think of all the cakes I will lovingly adorn so that they will be enjoyed by friends and family.
What better way to remember a loved one than to bring people together to generate joy, knowing full well that every penny donated will go to support those still living with dementia?
I feel privileged to be in a position to do my part, no matter how small it is. I feel incredibly honoured to have friends and family who will support my efforts. May all your lives be filled with joyful moments that become the sweetest of memories. Here are some of mine from last night’s fundraiser.
Thank you to all our friends for making this labour of love even sweeter.
[A few notes on the cake decorations: I would like to thank a talented and generous artist, Julia Usher, for sharing her creations through social media in the most accessible way I have ever seen anyone teach. Thank you, Julia, for being so generous with your amazing skills and techniques. While I can’t come close to your level of perfection, I am grateful for all the inspiration. Here’s just one of her videos: https://youtu.be/koREaymLUFo, and her Facebook page]. Photo credits: so grateful to my friends for their photography skills: MJ Lafleur Nelly Almeida Cyrine Hashash