Rachel Manners is a speciality doctor in hospital based complex continuing care in Edinburgh. She is a particular interest in end of life care and in complex dementia care. Her twitter handle is @RachelMannes1 (due to an unfortunate spelling incident that she cannot figure out how to fix!).
Journeying beyond questions of how and why disease happen; to considering what they truly mean in the lives of individuals is one of the great challenges of clinical practice. Dementia brings out this challenge particularly strongly given the questions it raises about not only what it means to think and remember, but what it means to be. That is it to say, it forces the practitioner to consider what it truly means to be a person. For those of us who work with and for those who live with dementia (or experience it in our personal lives) these are important questions. My own practice in recent years has led me to wonder not only what I have to offer people with dementia, but also to begin to consider what they have to teach and offer me .
Thinking about these ideas, I came to the book ‘Memory’s last breath: field notes on my dementia’ to help me develop my understanding. This is the autoethnographic study of Gerda Saunders’ journey with and into dementia. It leads the reader into an academic and personal thesis of what it can be like to live with a disease which has the potential to change who you are – or at least, how you think. Saunders uses her own academic background as a Professor of Gender Studies to provide a unique insight into the experience of being diagnosed and living with dementia – in her case vascular dementia. She considers her own life history from her childhood experiences in apartheid South Africa to her working life and motherhood in Utah, and the many loving relationships she has developed through this life. Alongside this she presents her own exploration of the neurological and psychological literature on dementia. She intersperses this with field notes documenting the at experiences of life with memory loss, and how she experiences and understands these problems in the context of the life and relationships she describes.
As a reader I particularly enjoyed the ways in which Saunders centres her writing around her own fascinating life, providing both a more interesting story and an important insight into the ways in which a diagnosis of dementia affects not just individuals but the families and communities we all create around us. She considers what it means to have dementia, and documents her life with it. In her last chapter she considers her future, and particularly the end of her life. She considers the prospect of assisted suicide when her dementia is very advanced. This is a challenging concept for many of us who care for those with advanced dementia. Despite this, the questions she asks those who love her to consider in assessing whether it is her time to die are full of insight. ‘Do I wake up most days feeling joyful and excited?… Do I look forward to more things than I dread?’ These provide a framework for understanding life with advanced dementia that goes beyond cognitive ability and intellect and takes us closer to an individualised idea of what it means to be a person.
Saunders presents challenges to me as a doctor about the personhood of both my patients and my potential future self. I am left with a positive desire to seek more understanding – what does the expression of personhood look like in those whose advanced dementia means it is harder for them to communicate their ideas? What does it mean to live a life full of joy when memory is breathing its last? The kindness and love my patients show me every day suggests this is possible. This book has given me more questions than it has answers, but in so doing, I think it fulfils an important purpose.