Six years ago, on 29 July - my brother Angelo’s birthday – my mother passed away at the age of 88, ending her 13-year battle with Alzheimer’s...a struggle I can only describe as torturous suffering that nobody should have to go through. A struggle characterized by profound fear, paranoia, loneliness and a deep sense of loss.
Over those 13 years my mother lost everything. She lost time, she lost her sense of self, she lost her precious memories. Friends and family – everyone she loved – just disappeared into ether, leaving her completely alone and surrounded by strangers. And us ‘strangers’who loved her, lost her too. Even though she was right there in front of us, looking like my mom, sounding like my mom, she was not my mom. I will never forget my brother telling me how he had buried his mother three years before her actual death. I felt the pain of his grief and my own confusion, because I hadn’t done that. Maybe because I was with her more often I still hung on to brief and fleeting glances of the mother I knew and loved. I still saw her, locked inside her breaking body, and I kept trying to reach her through music, her favourite food, telling her stories of her life and reminding her she was loved. But she never came back – not until the last three weeks of her life when her organs began shutting down and she was unable to speak. Then, her entire spirit was my mom again. She came back to say goodbye. She came back to tell me she loved me. She couldn’t say the words, but her love for me filled the space around us until she took her very last breath.
Alzheimer’s is a very personal issue that made me grow in ways I didn’t know I could, for 13 years, and it continues to affect me emotionally today. Perhaps more than ever. And as a writer, after Mom died, I experienced a growing and urgent need to tell her story and our experiences as a family, to perhaps help others who are going through the same thing we did, and ultimately to create more awareness of Alzheimer’s in this world. It’s something I believe with all of me that I am meant to do. To write a book that shows the ugly-beautiful experience of living with someone who suffers from Alzheimers, to raise awareness and funds for Alzheimers research in the future and to share Mom’s recipes with the world.
My mother was good at everything she did, but baking made her happy. It made her proud. Throughout my childhood, Mom’s distinguishing feature was her ability to produce a fluffy, towering Chiffon cake at every significant family event – her niece’s wedding, her brother’s funeral, her son’s confirmation, her own anniversary. And one of her deepest sadnesses happened when she could no longer remember how to make it. When she was no longer able to bake any more. When switching on an oven became dangerous to her and others, and the words in a recipe book turned into an unfamiliar foreign language.
Our family is just one of over 44 million other families in the world who endure the anguish of losing a mother, father, brother, sister or child – slowly and painfully – every single day for many years. Losing them over and over again, as they ‘come back’for a minute, an hour or a day, and then leave again. Until one day they are gone forever. Still there in form, still the same face, the same body, the same hands…but not the same person. Not any person. One day they don’t recognize you any more.
And then you start the strange and difficult process of mourning a mother who is still there. Still present in the world but not present in herself. Not present to me. My mother who forgot me. My mother who forgot herself. My brother let go three years before she died, while still taking care of her physical form with acceptance, kindness, generosity and love, but I lived in a place of purgatory…a place of waiting…until she took her last breath. I watched and waited. Helpless and hurting.
Writing this book – The Memory of Chiffon – is what I fully and absolutely believe I’m meant to be doing at this time in my life,and that the spirit of both my Mom and Dad will guide me through this. I believe in this so much that I have made it a life-changing commitment, giving up a lot of other projects in order to embark on this writing journey in 2018. But it’s going to take a village to raise this book ‘baby’of mine – and I won’t be able to do it alone and without the love of my family, friends and even complete strangers who love someone suffering with Alzheimer's.
Before I start this journey, I want to say thank you to my mother's friends and family for making her memories as wonderful and special as they were, when she had them. She lived for the people she loved. And even though I know she forgot the people, I believe she never forgot – or forgot to feel - that love.
With all mine, Elle