Illness is seen as a solitary affair. We see chronically ill people as leaving the world of ordinary human society and moving alone into the impersonal world of medical science and the health bureaucracy. From being agents they become patients.
That is indeed the way in which many people experience illness. But it is a mark of failure. Illness is more properly all about relationships. And its negotiation involves testing changes in relationships both at a personal level and with institutions. The key to these changes is the readiness to relinquish control when required.
These reflections are prompted by the fate of the Medicare co-payment and by a recent book about dealing with Alzheimers. The former was killed because it was seen as an altogether naked attempt by the Government to control health expenditure without any concern for people and their relationships.
In the book Fraying: Mum, memory loss, the medical maze and me, Michele Gierck writes of her mother Jean who lived independently but increasingly displayed signs of memory loss. She describes how she accompanied Jean along her journey, facilitating the myriad relationships involved in reaching appointments, insurance, bill paying, receiving tradies, speaking with nurses and doctors, accessing council services, and adjusting home living. These labours enable Jean to continue living at home, but threaten her daughter’s own independent living. .
The title of the book – Fraying – describes accurately what happens to Jean as she loses her memory. Past relationships and events become haphazardly present, but recent events and people are blurred. The threads remain but work loose as the weave disintegrates and loses its pattern. Fraying is all about losing the ability to control a life of daily relationships and about accepting or rejecting a measure of dependence.
But Michele’s response to her mother’s illness also involves fraying. Her work, and periodically severe back pain, make her care for her mother demanding, particularly as she enters the detail of Jean’s financial responsibilities and medical care. To line up people to take her mother to appointments or to discover that Jean or clinics have cancelled some appointments and that she is waiting to be taken to non-existent appointments, creates constant pressure. The threads of life balance are stretched. So are the threads of the relationship between mother and daughter as they transfer to the other the role of carer and cared for. Both must yield control of their lives and enter a