Ageing is a project, a work of existential art, a story that one continues to write until one can write it no more – it does not end when one is diagnosed with Alzheimer’s by a doctor.
Peter Whitehouse said this, in his book The Myth of Alzheimer’s where he urges us to change the story of Azheimer’s, and reframe it as a process of the brain ageing, a natural process, and to try to approach it without judgement of how each person’s brain will age, and what this will mean for them.
I am so grateful for this book, and for being part of Living Words, where we are learning to step in at the point when a person can no longer write their own story, and write down their words as they tell us the story of themselves, and their experience. That we are story-tellers ourselves, and sensitive to the nuances of words and story, feels perfect for this work. To be able to put our skills and our belief in the power of words and story to such good use, to be useful in this way, is a very good feeling. What’s new to me as a writer, is to not be a writer for once. In the role of scribe, I am not in charge of the words or story – the person in front of me sets the scene, and chooses the words. It is so difficult not to edit, or correct… I focus on being a conduit, for my hands to capture the words as they come, faithfully
I appreciate so much about the training – the practise of mindfulness, of being in the present, open and without judgement; the practise of listening deeply, and how to sit with someone and be with them, open to whatever they are experiencing. Also the practise of kindness, which is the best of our human-ness, I think. Crucially, we are being mindful of boundaries, of how to be open and strong and fierce at the same time. How to come away from the care home, that other world, and though we are changed by it, and by our encounters with the people we have met and those we work with, and though we feel fiercely protective of them, how to leave them there until we return again.
It is so hard to leave them there. For days and days after my first visit, I carried with me the experience of A, her sadness and frustration at waiting for something she believed would never come. How she held my gaze, and sat with me wordlessly for a time. And M, who said they’d taken away her country from her. I am changed by these encounters, and it is too much to carry around all day, this knowledge of the process of ageing and how it is for these individuals we have met. And how it might be for us… because that is surely what we are all thinking, isn’t it? How to know this and not feel sad and frightened by it. In the rehearsal room reflection, we shared our questions and thoughts about the experience, and we talked about boundaries – how to be open and strong, and how to learn to close that openness, which is essential to the work, but only to the work. Susanna put it very clearly, how it’s all about the book we use to write the words in, the book with the yellow cover – we open the book to take down the words, the story, and then we draw a line under that story, until the next visit. And we close the book. We carry it with us, but we put it down and it remains closed. Until the next visit, which is tomorrow. I can’t wait.
Shazea Quraishi