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Caring When Curing is Not an Option
- Narrative Inquiry in Bioethics
- Johns Hopkins University Press
- Volume 10, Number 2, Summer 2020
- pp. 139-144
- 10.1353/nib.2020.0043
- Review
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Abstract:
These narratives provide intimate descriptions of the challenges, frustrations, and sometimes, the satisfaction of caring for a family member with dementia. They are presented by twelve individuals who want us to understand and possibly learn from their lived experiences. At the beginning of their journey, most describe a slow awareness that "something is seriously wrong." During the middle stage, their narratives are filled with examples of conflict and frustration as the authors try to respond with patience to behavior that "makes no sense." Finally, most learn to forgive themselves and accept 'the new normal' of this person, or their death. For some, the end of their journey is filled with regret and guilt, while others find acceptance and peace. We are privileged to be immersed in these stories, as such honest descriptions are rarely shared with 'outsiders.'