ABSTRACT
This chapter gives some idea of the demands and routines that fill the lives of carers with profoundly disabled children. It then presents the experience of several parent-carers and illustrates some of the many facets of caring for profoundly disabled people. The demands on carers differ one to another, and each day in the life of each carer is different. Heather describes her two profoundly disabled grandchildren and takes us through 24 hours in her life as primary carer. Although each of their stories is unique, each includes many features that characterise the lives of people who care for highly dependent children: the routines and arrangements, demands and impositions, anxieties and frustrations, the tiredness and 'never-endingness' of care, along with the surprises, satisfactions, rewards and joys. Many aspects of carer's lives are not at all complex; they are uncomplicated and welcome, as with pleasure derived from seeing a loved one taking her first unassisted steps, or simply, seeing her smile.
