Paper short abstract:

Exploring caringscapes and how couples where one is diagnosed with young onset Parkinson's navigate multiple future ways of life to ensure a shared narrative. This paper argues that both time and spaces require continued renegotiation to create carescapes, which rely predominantly on the carer.

Paper long abstract:

Due to the unpredictable prognosis of YOPD, multiple 'caringscapes of alternative future ways of life' (Bowlby, 2012) are required to ensure a shared narrative. A sense of temporality becomes apparent through a chronic illness diagnosis and may need to be managed to cope with the illness and emotions. In interviews with those diagnosed with YOPD, several interlocutors suggest they occupy a liminal space to manage the relationship with their body and others. This paper argues that as those diagnosed push the future away, carers are thrust into the future. It is, therefore, often partners tasked with maintaining carescapes to ensure the continuity of a shared narrative. Although anticipating futures is collaborative, much of this work is done by partners due to the biological imperatives thrust upon those with YOPD and interpretations and anticipations of futures rest on uncertainty regarding the prognosis of YOPD.

Relying upon prognosis to create carescapes now and for the future revolves around expectation. However, a YOPD prognosis is unpredictable and may not happen linearly. With this comes a shifting of time and space, a precarious carescape. In this sense, carer and cared for live in prognosis, anticipating and acting upon what might not happen. Therefore, the performance of informal care may require the anticipation of multiple futures of care, but also to act upon these imagined futures of care in the present. This is complicated by shared pasts, previous and existing carescapes for children, or elderly parents, along with the realities of gender.