Mind the Gap: The Dynamics and Work of Aging and Caring at Home

Abstract

In the United States, a growing proportion of the population is aged 65 and older. Associated with this demographic transition is a rise in the number of people who are aging with chronic disease. While there is a cultural ideal for older adults to remain in the community and out of institutional settings ("aging in place"), there is little recognition of the work and experience of trying to accomplish this. In the following papers, I draw on 12 months of ethnographic research in the Southwest US to describe the work of "aging in place." As a starting point, I use Medicare-funded home health care (HHC), which stands at the crossroads of acute-based institutional care and custodial, long-term care. In the first paper, using definitions of place from cultural geography, I explore the work of aging from the perspective of chronically ill older adult HHC users. I illustrate how bodies, practices, and places shift as processes of disease and medicalization inscribe them with risk, and the ways in which people accept, resist, and negotiate these changes. The second paper extends the work on audit culture to describe how Medicare's audit system has structured the organization and practice of HHC, and how this has reinforced the commodification of patients. I note how HHC nurses can draw on personal and professional logics in their documentation practices as a means of resisting rationalizing forces and opening up eligibility for care. The third paper uses case studies to push the literature on family caregiver burden to include the fraught, yet highly meaning-filled experience of caregiving. The cases show the difficulties and ambivalence in providing care to a chronically ill family member. Throughout these articles, underlying the tensions, uncertainties, and gaps I explore questions about what type of care is needed, who is worthy of care, and how responsibilities are distributed. I focus on how people's worlds and work are structured by larger scale social, cultural, and economic forces, and attend to the ways in which they reproduce, contend, and negotiate these forces from their unique positions, in effort to protect what they value.