I thought I had posted this waaaaay back in October and just found it in the drafts. I wrote this a few weeks out from the 2017 Northwest Narrative Medicine Conference . To the extent that I am still thinking about these themes and still talking with the conference organizers about what happens next, it may still be worth posting the links and my reflections on caregivers.
There were many prompts to thinking about the experiences and stories of caregivers. Keynote speaker Marcy Cottrell Houle spoke about the need to be an informed advocate for parents who, as they age, may face medical crises in which care providers lack expertise in gerontology. Stereotypes about old age can impose a familiar, but potentially inaccurate narrative, on a set of symptoms and this can interfere with giving appropriate healthcare. Houle’s book (written with physician Elizabeth Eckstrom), The Gift of Caring, makes the case that seniors need “comprehensive, person-centered care” and her presentation demonstrated the power of at least two kinds of narratives to bring this about. The book tells Houle’s own narrative, in tandem with medical information, as a way of educating and advocating for better care for elderly patients. Houle also encouraged us to have parents or other elders in our lives complete a document, endorsed by a primary care physician, that describes the person’s baseline functioning. In an emergency, health care providers unfamiliar with the patient as an individual would see this as an authoritative “narrative” in the voice of medicine that could counteract stereotypical assumptions about old age. The power of hearing the distinctive voice and identity of “the elderly” also came through in poems Kim Stafford read, one about his aunt and one about his mother’s passing.
A scene from Brianna Barrett‘s play After This Episode brought home the ways in which the experience of cancer is different not only for young adults undergoing treatment but also for young adult siblings and friends who provide support and care. Rebecca Harrison also read a narrative about her experience as a physician supporting her brother through his treatment and untimely death from a form of brain cancer. The unexpected caregiving trajectory was also a theme in April Brenneman‘s story about how she came to narrative medicine through writing and artistic expression around her premature daughter’s birth and her son’s cancer treatment. The second night of the conference included live performances of storytelling set to music, including Lois Leveen’s poem, “I have Friends.” I took from the poem how varied are the experiences of cancer and the decisions we make about how to respond, how our lives are affected by cancer among those we know and love, and the significance of friends as givers of comfort, care, and remembrance.
Finally, the conference included writing workshops throughout the weekend, and I was moved by a statement in the concluding session by one of my fellow conference participants spoke about how the conference had encouraged her to value the stories that came from her experience as a mother. I have heard people say, and seen bloggers write, that they are “just a mom,” as though that was not an interesting or authoritative position from which to speak, write, create, or argue.
I’ve only scratched the surface of the conference, haven’t even commented on the amazing Bryce Olson or Josephine Ensign (future posts!). One lasting take away will be a determination to continue to think about caregiver narratives in this expanded sense that includes different relationships and kinds of care, the tension between expected and unexpected caregiver narratives, and the power of story for personal and public advocacy.