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Films capture the experience of caring for someone who is terminally ill

Carers who share their personal experiences in the films are Brendan Moran, Pat Dart, Ann Anderson and Peter Dawson.

An organisation focussed on the wellbeing of people who care for someone at the end of their life has launched three short films to shed light on this experience.

The films, titled Conversations, feature personal insights from four Canberra residents, which are presented under the themes of honesty and openness, care and support, and planning and preparation.

LifeCircle Australia CEO Melissa Reader says the films were made to capture the lived experience of people undertaking the main caring role, rather than the people who were facing death or dying. She says the preparedness of the person caring, their personal capacity, and the support available to them provided the greatest opportunity to change the experience of dying.

“What we are constantly hearing — and I know personally because I cared for someone very close to me – is that it is really the hardest work ever,” she says.

“It is not a job spec you would take on, given the emotional complexity and physical demands of the work. It is very, very difficult but it is also transformative and a life changing experience. People reflect on their lives quite differently having cared for someone at the end of life.”

She said LifeCircle wanted to capture the lived experience of this caring role so that people about to take it on could understand it – and plan for it – better.

She said it was a role typically taken on “organically”, growing subtly over time as needs increase, rather than a clear decision in a specific moment.

“They might be helping mum cook a few more meals, or shop and then there are more medical interventions. The role subtly changes and becomes a caring role. It can be [triggered by] a crisis health event, but more often or not it is organic.”

As a result, people caring for a loved one who is dying don’t necessarily see themselves as being carers; “They are wife or daughter or son and they do what they think needs to be done”.

They may miss valuable resources and support that are designed for carers, more generally.

“We try to not use the word carers because that seems another domain. There is a lot of work done for carers in the community but not someone caring for someone at the end of life. Where we see the gap is the role of caring for someone who is dying.

She says Conversations – which can be seen online – will encourage a “circle of care” to be built around the person caring, as the personal stories reveal the range of support that is needed from family, friends and the broader community.

The concept of a circle of care mirrors the compassionate community philosophy that Palliative Care Australia and Groundswell showcased at the recent Compassionate Communities Symposium. At the Symposium, one of the world’s leading experts on building compassionate communities, Dr Julian Abel, provided an insight into the “life-enhancing and nourishing” impact they can have on carers, patients and community members. Dr Abel co-authored a guide to help communities develop support networks at the end of life and described the circle of networks around people and their carers when someone is ill or facing a life-limiting illness.

Ultimately Melissa felt the idea of the ‘circle of care’ was important in trying to increase the number of people who were able to die at home when that was their preference.

“Seventy percent of us say we want to die at home and we want our family and friends and services wrapped around that. But less than 15% get that wish fulfilled. It is the capacity of the person caring, the decisions they make, and the way they engage with others around them, that ultimately makes it happen.”

She says the series was called Conversations because of the power they have.

“Conversations can be really powerful catalysts to help you recognise what’s ahead, gracefully accept that, and to help you understand what the care wishes might be for the person [who is dying],” she says.

“We need to be able to talk about death and dying more openly.”

Calvary Health Care, Clare Holland House and Palliative Care ACT provided support in creating the films, which were funded by the Snow Foundation.

Learn more about LifeCircle at http://lifecircle.org.au/


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