volunteer

Almost every week for more than five months Lee visited Kristy at her home. Lee is a volunteer biographer, and together they travelled through Kristy’s early childhood, first dates, weird and wonderful happenings and everything in between, compiling a record of Kristy’s life for her three young children.

After receiving a diagnosis of advanced breast cancer at the age of 39, Kristy said, “We got busy making memories with the time I have left. Suddenly it was imperative that my children remember me, that they know how much I love them and about the wonderful life I have lived, and am still living. I planned to squeeze everything I could from my life and ensure my remaining time was spent wisely, making memories with those in my life who mattered the most. This left little time for the burdensome task of recording my life story. Enter Eastern Palliative Care, and Lee, my biography fairy godmother.”

Lee Ewing is one of 94 biographers who offer their time to volunteer with Eastern Palliative Care, a community palliative care organisation which supports people living with terminal illness across Melbourne’s eastern region.

By May 2018, the volunteers of this service will have helped 1,000 people to tell their stories – a significant milestone given that the stories can be 300 pages and take up to a year to complete.

While EPC offers a wide range of specialist, free palliative care services, its biography program was set up in 2005 as a therapeutic tool to address issues such as anxiety, depression and a sense of helplessness noticed in some people with terminal illness. In helping people to reminisce and tell their story in their own words, it provides a creative and productive focus and allows them to reconnect with the essence of who they are, which has not changed simply because they are dying.

Most people tell their volunteer biographer at the first visit that they don’t have much to tell, or that their story isn’t very interesting. Yet, once the process has started, every story that emerges is fascinating and the richness of life shines through – there have been stories of prisoners of war, of migration to Australia, of success and hardship, of love and abuse, and of generosity. Biography also has a host of unexpected benefits: one volunteer has helped a client find her mother’s grave overseas – her mother died when the client was 12 and she was never told about it or where her mother was buried. Another biographer suggested that a client use his original birth name on his story after it had been changed by a regime in an act of cultural cleansing years earlier, giving him back his identity and reducing him to tears of joy when he saw the final book cover.

Many choose to revisit painful memories or share secrets with their biographer which they do not want recorded in the final version of their story. Comments such as, “I don’t want this included but I just needed to tell someone” are commonplace. All of this can contribute to a more peaceful and accepting death.

Biography also allows people to leave a legacy for family and friends; a means of leaving messages, beliefs, philosophies, instructions and family history. Storytelling has always been a universal tool used to maintain people’s heritage, to hand over important traditions, advice and rituals.

volunteer

“Suddenly it was imperative that my children remember me, that they know how much I love them and about the wonderful life I have lived, and am still living.” Kristy, who was diagnosed with advanced breast cancer at age 39, with her volunteer biographer, Lee.

The telling of stories can take many forms. Volunteers have worked with people unable to speak, using a light-writer, computers or a family member as interpreter. There is also a Children’s Picture Book Biography service, which helps people to leave a permanent reminder for children of who they were and how much they loved them. It allows the dying parent to parent even beyond their death, and most clients leave very personal messages and advice behind for their children. The picture books give children something tangible from their parent or grandparent that they can hold, or take to bed and put under their pillow, or show their friends.

Working on his biography with the help of volunteer Margaret Scheltinga, 39-year-old Dion said, “It was really good that the palliative care team offered me biography because I was trying to have a crack at it myself to give my kids an outlook, but I didn’t know where to start or finish. Actually, I still don’t know where to start or finish – that’s why Margaret’s great. I can just waffle, get side-tracked and stuck on a certain stage in my life and she can put it into the right context. It is awesome to be able to get my story out there and pass it on to my kids. Other things have come with the biography; a kids’ book which will be perfect for my four-year-old, and I’ve written stuff for my eldest daughter for certain days and stages in her life, so she has something she can look back on that’s her own. She asked me to do it – I’ve written congratulations for finishing high school, getting married, uni graduation, and it will be polished nicely at the end.”

volunteer

“When I have finished working with a client, I always have a ritual to formally let go of that client,” says Monica Addington (right) with fellow biographers, Jamie and Julia.

Volunteering in this industry is not easy, but it is rewarding. The more than 180 volunteers working in different roles with EPC range from 22 to 84 years of age, come from very different walks of life, and have different reasons for choosing to volunteer in this space, where not many people want to be. But they all say that they get more than they give. EPC has extensive structures in place for training, supporting, mentoring and debriefing its volunteers, as the bond that is formed between the volunteer and client will end with the ultimate ending – death.

“When I have finished working with a client, I always have a ritual to formally let go of that client,” says Monica Addington. “It is as simple as making a nice pot of tea and sitting with a fine china teacup in the garden and enjoying nature whilst recalling the client; being grateful for the opportunity of working with them and letting them go. I also do this little ritual when I have heard a client has died.”

For biographer Brian Tait, “I think the most important thing is to keep perspective. Pursuing interests (work and otherwise) outside of the biography work helps me a lot. The other thing to keep reminding yourself is that the work we do can be uplifting. It is easy to fall into the trap of thinking the work we do is about dying and death. It is actually about living and talking about lives well lived.”

Speaking about Lee’s assistance with her biography, Kristy said, “Lee took my hand and we set off together on a fun and illuminating journey of life. I’m a little sad that we are reaching the end of my life story, as I will miss meeting with Lee and listening to her lovely giggle and gentle questions. Questions which encourage memories and tales from long ago to flow to the surface and wind their way into a beautiful piece of written art for myself and my family. I cannot thank Lee or Eastern Palliative Care enough for this priceless gift.”

Kristy died on the 9 January 2018 but received her completed biography and children’s picture book before she died. Dion died on 5 March 2018 without seeing his completed biography, though what he wanted to pass on was published and given to his family.

Penelope Di Sario is Coordinator of Volunteers & Fundraising Coordinator at Eastern Palliative Care.

Eastern Palliative Care runs the largest volunteer biography program of its kind in Australia and due to its successful client outcomes trains both local and overseas organisations on setting up their own service.

For its 1,000th biography milestone in May 2018, EPC plans to host an event during National Volunteer Week (May 21-27) and National Palliative Care Week (May 20-26) to celebrate the incredible contribution its volunteers have made to the lives of 1,000 people and their families and friends, and to raise public awareness that palliative care is not just about nursing and medicine, which of course are vital, but that there are a range of services which can help people nearing the end of their life.

As a not-for-profit with DGR status, EPC is seeking support to help build the biography program into the future. For further information, please contact Peita Carroll, Manager HR & Communications, on 1300 130 813.

Penelope Di Sario is Coordinator of Volunteers & Fundraising Coordinator at Eastern Palliative Care.