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Creating meaning through storytelling at end of life

Caregivers can celebrate life with hospice patients through storytelling

By Terre Mirsch

After experiencing a childhood of poverty and hopelessness, John vowed his own family would never experience hunger or lack for anything. His shame prevented him from sharing his childhood story with others. After a life time of working 16 hours a day 7 days a week, he looked forward to retirement as an opportunity to make up for lost time with family and friends. When his diagnosis of advanced colon cancer shattered his retirement dreams, he was overcome with despair and regrets. His daughter, Bonnie, was bitter and resentful that she would need to take time away from her own family to care for him when, indeed, he had not been there for her. In the telling of his life story, John was able to express his love for Bonnie as well as his regrets, while asking for forgiveness. Bonnie was not only able to forgive him, she now understood and admired his resilience and determination. This deeper insight helped her to see the characteristics of strength and fortitude that had been passed on to her. The remaining time that John and Bonnie had together became an opportunity to love, share, and more deeply understand each other.

Betty was a dedicated mother and avid cook, ensuring that a warm meal was on the table every evening as Nancy was growing up. Nancy had always intended to learn about her mother’s passion for cooking but her busy life always seemed to get in the way. Taking the time to ask about favorite recipes as her mother became ill, gave way to learning more about her family history and heritage. Nancy heard stories of joy and love, as well as hardship, that she had never known. After her mother’s death, she began to incorporate these recipes into family and holiday meals, providing opportunity for remembrance while honoring her mother.

For someone facing life-limiting illness, looking back on life provides an opportunity to create meaning and legacy. In the telling of their unique story, they are able acknowledge life accomplishments and the value they contributed to the world and to others. This is an important aspect of life closure and saying good-bye.

For caregivers, hearing a loved one’s story may provide opportunity for understanding and enlightenment. Learning of history and traditions may bring comfort and meaning follow loss. Too often, in the midst of our focus on the tasks of caregiving, we may forget to find time for meaningful conversation and dialogue.

You may have heard the recording of Frank Lilley interviewing his stepfather, David Plant, last week on NPR’s Morning Edition. Through a partnership with hospice and palliative care organizations, StoryCorps Legacy provides people with life threatening conditions and their families the opportunity to record, preserve, and share their stories. Those who may not have access to the StoryCorps Legacy program can still elicit the gift of story and create lasting memories. Stories can be preserved through conversations, in writing, or through video or audio recordings.

Storytelling may not come naturally to your loved one and, as caregivers, we may not know what to ask or how to start the conversation. Asking basic questions about childhood, education, marriage, or career may get the dialogue started. Inquiring about favorite foods, hobbies, movies, books, or music may bring some surprises that can be incorporated into caregiving and quality time together.

These conversations may lead to more reflective questions including:

  • “What are you most thankful for?”
  • “What are you most proud of?”
  • “How would you describe yourself?”
  • “What would you like others to know and remember about you?”, or
  • “What, if anything, would you have done differently?”

Storytelling is one of the oldest healing arts, creating opportunity for reconciliation, rapport, and inspiration. The telling of the story creates memories that honor legacy and facilitate healing.

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