Terminally ill parents tell their life stories
BETTER SOUND 2020 | Categories: 3.2 Health, 3.4 Social & Culture
FAMILY AUDIOBOOK is an opportunity for palliative care patients with young children to tell their life stories – authentic, in their own words, in their own voice; to share the path they have taken, their memories and dreams in an audiobook. The professionally produced audio biography is lovingly mixed with music and sounds, even silence.
The idea to enable terminally ill mothers and fathers with young children to tell their life stories and provide them with a professionally produced and designed audiobook came to Judith Grümmer (founder of Family Audiobook) when her own children were very young. As a medical journalist, she had specialized in palliative care topics, and worked on the fundamental issues of life and death. As a radio journalist, she has always been convinced of the elementary power of the human voice as the mirror of the soul.
The mother’s voice is the first thing an unborn child hears. Its ear is the sensory organ that first perceives the outside world whilst still in the womb. And we know that the human voice is as unique as a fingerprint. However, it is also the first memory the bereaved forget or can no longer visualize (auditize) when a loved one has died. Since 2004, Judith Grümmer has been creating family audiobooks preserving the voice of the loved one in full authenticity: people tell their life story in their own words. They evoke a plethora of emotions: Happiness and Sadness. Things familiar and things never mentioned. Stories worth knowing and worth living for. Clarifying and comforting. Intimate and discreet.
Family audiobooks for terminally ill young mothers and fathers have been Judith’s special focus since 2017. Financed by donations, scientifically supported by the University Hospital Bonn, supported by the German Society for Palliative Medicine, she initiated the project, and, since 2019, became managing director of the family audiobook gGmbH, officially registered as an NGO. She and her very small team of collaborators (trained by Judith) are creating audio biographies as a cost-free addition to the medical therapy of palliative patients with small children.
These audiobooks need to be free of charge to the families, simply because these families already shoulder high illness-related financial burdens. However, creating an audio-biography of the highest quality is costly: it is technically complex, with a sizable investment of time, setting a high professional standard, both in a technical sense as well as that of the care-capabilities of the interviewer. With the help of a small grant and donations we can equip early orphaned children with a lifeline to their parents in the spirit of solidarity and care.
The first phase of the University-lead pilot study showed that there is a great need for audio-biographical support work for young palliative care patients. Patients experience the sharing their life story as power- mobilizing and inspirational. Terminally ill young mothers and fathers are relieved to be able to leave their children their legacy – an audiobook as a companion beyond their own death. The goal of the audio-biography project is to provide a unique gift for the children, preventing or alleviating post-traumatic stress disorders resulting from their early illness and loss experience. The project is the only one of its kind on the globe.