‘Why I encourage others to talk openly about death, dying and end-of-life issues’

In August a friend told me she was going to a ‘death café’ in Katoomba, New South Wales and asked if I was interested. I went to the café with her and felt immediately at home with kindred spirits, able to talk openly about death and dying, funerals and end-of-life issues that are often taboo subjects.

Years ago, my daughter – aged five at the time – was diagnosed with leukaemia and we were in great need of help with also having a four-year-old and a newborn. It seemed to me that Compassionate Communities, a whole of community approach to end of life care, offered help similar to what we received; help that took the burden off daily life.

When my daughter first became sick, we belonged to a church community. From the very time the diagnosis came through, the church community came together, under the direction of the minister and a few dear friends of mine, to organise support for us. One couple washed our baby’s nappies, others dropped off a meal to us every day for many weeks, there was babysitting and transport to the hospital when needed.

Our local pharmacist heard of our daughter’s diagnosis and always made himself available to talk, about chemotherapy, about the drugs that were used, and simply just to listen. I was put in touch with a grief counsellor, someone I would never have otherwise found, who supported me while I was processing the grief and many other issues that came with the diagnosis. I also heard about the home nursing service and enquired if they could come to our home to give our daughter some of her chemotherapy, saving us two trips to hospital a week. I would not have heard of any of these forms of assistance without informal conversations, with people such as those who comprise the network.

With our current ageing population and with families living further apart from each other due to travel or job requirements, people can be more isolated. In becoming involved with Compassionate Communities and the monthly meetings where we discuss end-of-life issues, I have rediscovered that I am comfortable in this milieu.

In the last 10 years I have worked in my own business as a spiritual counsellor and healer, reiki practitioner and teacher, meditation teacher and hypnotherapist. My personal spiritual beliefs draw on the wisdom of both Eastern and Western traditions, and I have always seen the end of life, and death, as a sacred final journey.

One of the greatest privileges of my life was to sit with my father as he approached the end of his life, and to sit vigil with him for the first night after he passed at home, a deeply personal and spiritual experience. While the years of my daughter’s illness were some of the most difficult in my life, I never felt more in Flow and connected to Spirit. It seemed inevitable that the work of a death doula would call me.

For me, the manner of our death is most important and that we are able to choose how we will spend our last years, months or days. When we can talk openly with our families about our deaths, especially as we age, we probably save ourselves, and them, a great deal of grief at the end of life. An advanced care plan or directive is one way to do that, conversations around the dinner table is another.

When my daughter was diagnosed with leukaemia for the second time, we had conversations around the dinner table about what would happen if she died. Our youngest child, then five, piped up and asked if he could have a particular toy he really liked if she died, which made it an easier, more open atmosphere.

We are all going to die, yet, it sometimes seems there is an unspoken idea that to die is to fail. I don’t believe this to be so and this is perhaps one of the biggest themes in the work that GroundSwell — a not-for-profit organisation trying to create social and cultural change about death and dying — does.

Modern medicine is keeping many more people alive for longer, some of whom don’t want to live so long because of the illnesses that come with ageing. It is not uncommon for the families of people who are dying to request that everything is done to keep a loved one alive and sometimes this can be against the wishes of the ill or aged person.

Death is the natural ending of life and is normal and this concept is encapsulated by the work the GroundSwell Project aims to achieve. They stress that when we can talk openly about death, we remove fear, we normalise it, we can prepare for it, we can do our own grieving for the end of our lives and help our families and friends to prepare as well.

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