Death in Very Old Age: A Personal Journey of Caregiving

A personal journey of caregiving for a very old family member during dying and death is described, revealing the inner struggle experienced by all caregivers, lay and professional, between the needs to support both the living and the dying of the terminally ill person.

Abstract

This paper describes a personal journey of caregiving for a very old family member during dying and death. The phenomenology of caregiving reveals the inner struggle experienced by all caregivers, lay and professional, between the needs to support both the living and the dying of the terminally ill person. The lived experience unfolds in phases of caregiving that support a stage theory of development in professionals' work with dying persons. The concept of presencing or connecting is a vital component of terminal care and has implications for occupational therapy practice. Occupational therapists can use their knowledge and understanding of occupation to bring about connecting in the dying experience. The contributions of all participants in the dying experience--family caregivers, the dying person, and health professionals--are important as sources of mutual support in the work of dying.