Joanna Lillian Brown

Joanna Lillian Brown was in her late 30's when she became the hospice care coordinator, and a primary caregiver, for her 97-year old grandmother. When speaking with dozens of family members, work associates, and friends, she was surprised to learn that no one she knew had been with someone at the time of a loved one's death. During the final three months of her grandmother's life, she kept a journal of her thoughts and fears, as well as notes about special moments shared with her grandmother and family members. The experience of being with her grandmother at the time of her death was a deeply spiritual experience that removed her fear of death. Eight years later, she and her spouse bought a home four houses away from her elderly parents to provide them with daily support. She was a primary caregiver for her father during the last two years of his life and was with him as he died. Again, the process of journal writing provided a path for reflection and comfort during the challenges of caring for a loved one. Following her father's death, she provided daily visits to her mother, enabling her to stay in her home for another five years, until she had a stroke. For the last eighteen months of her mother's life, she provided direct care to her mother in a nursing home every evening, where she learned about the problems inherent in even excellent nursing care facilities. She was with her mother when she died at 4:00 am on May 7, 2008. Following her mother's death, Joanna reviewed her journals from prior years and began to wonder if her reflections could benefit someone who had not yet been a caregiver. A supportive writing coach encouraged her to continue writing, and the book Caring for Dying Loved Ones: A Helpful Guide for Families and Friends was written within a period of 20 months, based on journal entries, stories contributed by personal friends, and additional research. Joanna Lillian Brown also provided hospice care to her earliest childhood friend, who died at the age of 54 from pancreatic cancer. She has been a caregiver or hospice caregiver to several members of the Unitarian Universalist Society of Northampton and Florence, Massachusetts, where she and her spouse, Jo Lower, have been members for 20 years. She has written and given eulogies for her mother, her father, and three close friends, as well as designing and participating in memorial services. Throughout her years of caregiving, Joanna Lillian Brown has worked full time in the fields of alumni relations and development.

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After Caregiving
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