In 2000 my grandmother went to the local grocery shop and tried to buy milk with Spanish pesetas. Spain had long since embraced the euro and besides, we lived in rural Ulster, not the Costa del Sol. At the time we laughed. It was a funny incident and not so far removed from my grandmother’s slightly eccentric personality to be unbelievable. Later, there would be other incidents: forgotten errands, confused telephone calls, the day she tried to get into a stranger’s car, each incident more serious and sobering than the last until the day my grandmother hid herself in the spare bedroom, terrified by the stranger in her living room; a man she’d been married to for more than 40 years. Watching my grandmother succumb to dementia was an extremely formative experience for me. It’s a journey many of my friends have also taken recently as we watch our parents and grandparents develop an illness which will soon affect one in three people over 65.
Nana, as we continue to call her, was an amazing pianist, a blistering conversationalist and friend to everyone she met. She was known locally for her warmth and her impeccable style. In the days running up to her funeral, many strangers shook my hand, and repeated the mantra, “your grandmother was a real lady”. Dementia swept through Nana like a plague leaving her incapable of playing the piano or forming coherent words, pathetically thin with a wardrobe reduced to nightdresses and comfortable slippers and, most upsetting of all, occasionally afraid of her own family members. Dignity became a major priority for our family. Dementia had taken so much from my grandmother and we worked hard, with fantastic support from friends and professional carers, to help Nana retain her beautiful personality for as long as possible.
We sang to Nana, read to her, continued to talk with her even when conversation seemed to be pointless and, right up to the end, tried to ensure her room was decorated and she was dressed with some of the style which had so typified her pre-dementia life. It wasn’t an easy journey. It destroyed us a little when she could no longer play the piano; broke our hearts when her impeccably set hair became thin and ill-inclined to curl. In 2007 after a long battle my grandmother passed away, greatly diminished in almost every sense, yet still, as I held her hand, during the final hours, very much the same person I’d loved and looked up to for my entire life. In the last few days we sang to her and, still enamoured with the music which had sountracked her entire life, she did her best to sing back.
Within the next 10 years there will be more than a million people in Britain living with dementia. Each day, in my job co-ordinating community art projects at the Ulster Hall, Belfast, I have the privilege of working with older people, many of whom are living with dementia, or have a loved one living with dementia. Some are afraid, some are in denial, many are confused or reluctant to share their story for fear of being institutionalised and separated from their partners. All of them are still the same people they were before dementia took hold. All of them deserve the opportunity to live with dignity and as much normality as possible during their sojourn with this illness.
When I came to write my first novel, Malcolm Orange Disappears, I knew it was going to feature older people and their stories. I've always been surrounded by older people and, as a writer, felt it a privilege to sit beneath the weight of their wisdom and the incredible stories most have accumulated during lives well-lived. My novel is set in a retirement village. During the course of the novel each of the older people who live in the retirement chalets is given an opportunity to share their story. Though the tone of the book sits comfortably within the scope of magic realism, and I've yet to meet an older person displaying any of the actual superpowers embodied by the elderly residents of the Baptist Retirement Village, most of my characters are based loosely on older people I've come across during the last few years. Their stories have inspired and challenged me, often humbling me over my own fearfulness.
Ageing is not an easy process to navigate and I wanted to take an honest look at some of the many ways old age can feel like a loss. My characters are losing their sight, movement and hearing, their libido and self-confidence, their memories and ability to communicate with the people they love. One character is described as exhibiting the early symptoms of dementia. All are struggling to make sense of the way in which age is beginning to limit their everyday lives. However, Malcolm Orange is not a sobering novel. It's more of a raucous celebration and a challenge to embrace hardcore living. During the last few years of my grandmother's life there were many moments when we laughed hard and long at recollected stories and even the absurdity of our present situation. This novel builds upon that sentiment. It finds ways to laugh in the face of loss, to celebrate the characters' lives no matter how greatly reduced, and to show how they are still capable of contributing to community and enjoying life despite its limitations. These are not people reduced by age. They are people coping, caring and living with reckless enthusiasm, despite life's limitations.
Dementia is a serious illness. It impacts deeply upon both those who develop it and their loved ones. Over the coming years it will have wide repercussions for our health service as it seeks to manage what some are calling a dementia epidemic. However, in the midst of the statistics and associated fear-mongering it’s important to remember that people with dementia are still people. Not only do they have rich and vibrant pasts, they also have serious living left to do. I’m passionate about honouring our older people not just so we can preserve some kind of wisdom legacy, but also so we might develop creative and compassionate ways to see them living out their own peculiar sense of normal for as long as possible.
Malcolm Orange Disappears
Quirky, entertaining and set in a Technicolor world of magical realism, Malcolm Orange Disappears (Liberties Press, €13.99) is the highly original debut by Jan Carson. Hailed by writer Ian Sansom as "the best debut novel I've read in years", it's the tale of the heartbreakingly resilient Malcolm Orange. Struggling to cope with his dysfunctional family and a nomadic childhood spent travelling the highways of America in the back of an ancient Volvo station wagon, Malcolm and his family eventually move into Chalet 13, a retirement village on the outskirts of Portland, Oregon. They become the youngest residents on a cul-de-sac of elderly individuals and couples, each with their own story of love and loss to share. When Malcolm finds himself covered in tiny, rapidly enlarging holes, he comes to the conclusion that he is literally disappearing. He embarks upon a touchingly hilarious adventure to find the antidote to his problem before he disappears completely.
Carson is a community arts development officer in the Ulster Hall, Belfast, where she runs a monthly literary event, showcasing authors such as Jennifer Johnston and Glenn Patterson. Malcolm Orange Disappears is launched on Wednesday, June 4th at 6.30pm in the Ulster Hall, by TS Eliot prizewinning poet Sinéad Morrissey, and in the Irish Writers Centre, Dublin, on June 19th, at 6.30pm. Both are open to the public.
