When Ellen Agger’s mother was diagnosed with dementia in 1996, both of their lives were suddenly changed overnight.
Thrust into the caregiver role for her mother, Ellen spent the next year and a half swept up in the overwhelming ebbs and flows that come with caring for a parent. Time and time again she was called upon to make decisions on behalf of her mother — and time and time again she was expected to know the answers.
Unlike so many others, however, Ellen and her mother had spoken about their wishes for end of life. More than 10 years before her mother’s diagnosis, they worked on their living wills together and had conversations about their desires and wishes for end of life. These conversations, Ellen says, ultimately gave her direction as she made decisions on her mother's behalf.
The following excerpts were taken from a radio piece Ellen created for CBC Upfront called “Dementia Diary.” In her own raw and honest words, Agger remembers the final months of her mother’s life: the stress and emotional turmoil, the pain and relief of letting go, and being at peace with the decisions made.