Erwin Mortier's mother's life changed overnight after being diagnosed with Alzheimer's disease. Here, Erwin shares the moving story of her deterioration and the loss of the happy years together his parents had envisioned when they retired.
My mother was not yet sixty when she was diagnosed with Alzheimer’s disease. The news came as a terrible blow, for all of us, but especially for my father. He had just retired at the time. He would spend time with his children and grandchildren, he and my mother would enjoy life and its pleasures without my dad having to wake up at half past five in the morning to catch the early train. We all felt they deserved it more than anyone. They had raised five children and given them opportunities they themselves had never had, and by nature they were generous and welcoming people. We rarely sat for dinner with just the seven us. There was always talk and laughter, the mundane blessing of human company. Mum and Dad were set for the splendid Indian summer of their lives, we thought, but it was not to be.
We also thought we were prepared for what would be coming our way, once the neurologist had given us her verdict. Mum’s mind would gradually deteriorate, her speech and memory would go, and not only her memory of language. She would also forget how to use cutlery, or the buttons and zips on her dresses, or how to tie her laces. And she would, eventually, forget everyone she knew.
When after four months her condition became more or less stable, we felt as if we had survived a shipwreck.
We were not prepared for what actually happened. The first few years the disease seemed to stick to the textbooks, but in the autumn of 2008 it suddenly struck with full force. Within four months our mum was reduced to a shadow of her former self - which is a euphemism. She didn't simply lose her speech, she was losing it by the bucket. Her memory wasn't fading, it was leaking away, day by day. She had to be fed, she had to wear nappies. She'd wake up at night and slept through the day. We were devastated - another euphemism. We were scared, angry, sad and desperate (and so was she, as she mirrored our emotions). We were grieving, even mourning her while she was still with us (but who was it, who was still with us?). When after four months her condition became more or less stable, we felt as if we had survived a shipwreck.
We have had episodes like this quite regularly since then, each time followed by calmer stretches, each of them leaving my mother a little more diminished. We celebrated her 72nd birthday last winter, at the home where's she staying now (she enjoyed the cake), and their fiftieth wedding anniversary (she slept through most of the party, in her wheelchair).
We will never get used to this terrible disease and what it is doing, but we're adjusting to it, and there are many friends around for comfort and support. My mother may have grown silent forever, but thanks to the great talent for friendship that once was hers, we can do something she herself is no longer capable of: to remember her, and the happiness she has created.
Erwin's book Stammered Songbook: A Mother's Book of Hours is published by Pushkin Press and is available on Amazon. You can also read an extract from the book here.