This series of blogs bring to knowledge paper 4 an autoethnographic study. The study aimed to explore the meaning of supporting a loved one with MND to die.
Harris, D.A. Jack, K. and Wibberley, C. (2019) Making her end of life her own: further reflections on supporting a loved one with motor neurone disease. International Journal of Palliative Care Nursing, Vol 25, No.6, 284-292 https://doi.org/10.12968/ijpn.2019.25.6.284
Early in my postgraduate studies, I discussed with the academic staff how my previously published, descriptive personal reflections could be developed. We agreed that Paper 2 could be further developed to extend the literature by exploring the meaning of supporting a loved one dying with MND. Bochner and Ellis (2016: 68) suggested:
Sooner or later, life brings each of us unanticipated and unwanted darkness, sadness, frustration, and loss. These moments leave their mark on us. One could say our bodies are tattooed by them, though not by choice. Heidegger (1962) referred to such moments as ‘simplifying' insofar as they make us aware of what is extraneous and peripheral and the possibilities that exist to dedicate one's life to what is definitively essential. Neither Heidegger nor anyone else can tell you what is truly important for your life.
Being a professional family carer means that there was no avoiding my knowledge of the disease’s progression or the treatments, and this contributed significantly to my anxiety. Returning to my previously published work (Paper 2), I revisited reflections that had been painful. They took me back to the family home, to images of my mother lying in bed, locked in her body, unable to move and communicate, and to the sadness in her eyes which caused me both physical and emotional pain. The experiences left their mark on all my family. I consider it essential to present my personal and professional experiences of supporting my mother to die, for two reasons: firstly, to find release from past experiences and, secondly, given the limited autoethnographic studies on prolonged death and family loss, to have a positive impact on care provision in the future.
Being a professional carer means that there was no avoiding my knowledge of the disease’s progression or the treatments, and this contributed significantly to my anxiety. In Paper 4, I have used autoethnographic stories to explore my struggles to support my mother to die in the way she wished and ensure that she was consulted in all end of care decisions. In the process of being a daughter and a healthcare professional in the MND c