A Daughter’s Story of Long-Term Care for Her Mother Who Lived and Died With Dementia: An Autoethnographic Account

Lynda C. Silva, Fielding's School of Human & Organizational Development

The purpose of this study was to investigate my experience as a daughter caring for a mother while we dealt with the insidious effects of dementia that caused changes in behavior, mental, and physical abilities for a period of approximately 20 years. A second purpose was to investigate how a difficult mother-daughter relationship affected the caregiving experience. This autoethnographic study would contribute stories that provide personal introspection to the literature surrounding the mother-daughter caregiving dyad and its effect on caregiving and the mother-daughter relationship. Aging mothers and adult daughters are unique in many ways, and the mother-daughter relationship could be said to epitomize intergenerational relationships in later life (Fingerman, 1995, 1996). For those daughters with the responsibility of caring for a mother with dementia, the unknown issues associated with the progressive disease and especially during the dying process can be a mystery, as in my case. My story tells of a burdened daughter who in the end, after years of tension, found peace in her relationship with her dying mother. My mother’s last gift to me was the gift of forgiveness.

Key Words: Caregiving, dementia, mother-daughter relationship, autoethnography