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Accepted Paper:
"Its hard for me but that's nothing on what he goes through": care, Parkinson's disease, and the search for a good life
Narelle Warren
(Monash University)
Care, as much as it involves functional tasks, is grounded in and expressed through affective practices. As Parkinson's disease progresses, everyday care interactions become increasingly intimate. This paper discusses such changes, and how a sense of 'the good life' is maintained.
Paper long abstract:
Care in the context of Parkinson's disease (PD) is often provided by spouses or family members, either alone or in combination with formal (paid) care. At the policy and health services level, this care provision is often assumed to occur unproblematically, and is seen as being relatively static in nature within each of the three broad levels of PD progression (early-, mid- and late-stage). This stance, however, fails to recognise that neurodegeneration occurs incrementally, week-by-week and month-by-month. Care needs change dramatically in response to this subtle progression, and become increasingly intimate (or personal) over time. Based on ethnographic research in Australia, this paper explores the experiences of family carers of people with PD and focuses on the affective impacts of PD care provision. I start by considering the notion of care as an affective practice, based upon the spousal relationship and broader familial and social networks, which is constantly redefined through the (ongoing) integration of new knowledge into existing expressions of care. Care, for my participants, is both a moral obligation associated with the spousal relationship (cf. Mattingly, 2014) but also produces changes in the nature of the spousal relationship itself.