Until there's a cure ... there's care

By Stephen Alomes

Kate at computerBrian was the last to go. He too died from motor neurone disease – that is the disease whereby the neurons stop working and cannot convey messages to the muscles, even while the brain generally remains as sharp as ever. Brian and Carmel, charming and thoughtful people, had come from Queensland some time ago.

Now our ‘MND lunch group’ has only the partners left after Brian departed; he was older, lasting two years more than the average, around five years. The sufferers have gone, no longer suffering. Leo, the Telstra engineer was a strong man who experienced physical weakening and death. My partner Kate, a researcher, and Lyn, a teacher, could no longer talk to us via their text to speech software. The indefatigable Lyn, speaking through her machine, sought to educate staff and others in the nursing home place where she spent her last years. Geoff the jurist went too. So did Irene, who joked that when so many different helpers came to shower her she might as well have been in a glass cage at the shopping mall. 

Our group evolved after an excellent ‘living with MND’ workshop run by the MND Association of Victoria. Through it, we met the most wonderful people, as if the disease had somehow targeted the best and most interesting.

Kate and I had good professional support from the MND clinic at Calvary Health Care Bethlehem, the MND association, our local community health centre, Mercy Palliative Care, which provided ongoing as well as more difficult stages support, and Carers Victoria.

However, that was not enough. We are people who live in a society, not just patients and carers. Brian knew about the numbers and about organising, which led to our lunch group. Brian and Carmel also set up support through family as well as support services.

However, Kate and I also needed an everyday support group, which we created with friends. We set up our own support group, using the practical advice in the American book, 'Sharing the Care', although avoiding its semi-military titles for co-ordinators. When I needed a break, our friends came and enjoyed time with Kate, who later only chose to go when she could neither communicate nor move.

Facing the need for carer support, some people proudly fly the flag of family ‘duty’ – ‘It is all up to me’. Unfortunately, especially women. However, if carers are to have a life there needs to be more than that.

While over 700,000 Victorians are carers, it is not just secret women’s business, an extension of the nurturing, female side, carried out by mothers and daughters, although more of the burden does fall on them. Nor is it just ‘secret family business’.

Still today, there are varying systems of support for carers, and the financial support is poor.

Fortunately, like Brian and Carmel, we had resources and time, which many carers do not.

Australia needs more formal recognition of carers, those with family members facing terminal disease, and also those with ongoing problems, whether the product of accident or disability, of specific illness or of decline with age.

Australia today has millions of unpaid or poorly supported carers, some of them children and young people in their 20s, caring for siblings, parents, partners and friends. Today, we need to further enhance formal and informal support for carers and for setting up care networks. Once, support might have come from the street, the suburb, or the parish church, as well as the family. Today those local and immediate supports have weakened.

The needs of carers must be addressed as well as the focus on the individual and on the contract which shapes the new NDIS, the National Disability Support Scheme, and the continuing debates around the country on palliative care and assisted dying.

As systems now put aside narrow interpretations of privacy laws when families are consulted over ongoing health issues, we need to make some changes. We need a return to our social values and focus on the group, rather than just the individual in the era of the contract state. Fortunately, while Kate and I have always supported voluntary assisted departure, the broader definition of palliative care involves both palliation through an illness to allow the sick and their friends and families to live a life, as well as the last stages.

Brian was a brave man who was knocked over by a twisted bowel, and did not have to endure the totally disabling final stages of MND. In his necessarily black humour, which we all acquired, it may have been, in a way, a better result. He was almost OK when we lunched a few weeks before.

Not everyone has the skills that we shared with Brian and Carmel, who would join me in endorsing a more systematic government approach to supporting carers and to facilitating support networks.

While Victoria has improved carer support, and we await the government’s carer statement this year, we need a lot more. Even the economics are simple. Carers save governments billions but the absence of support also takes many of them out of the workforce. We desperately need improved support for carers and for providing facilitators to help people set up support networks.

Goodbye Brian, goodbye friends. We’ll lunch again and Carmel, Vin, Chris, Maureen and I, and sometimes Bryan and Colleen, will drink a toast to you and to Irene, Leo, Lyn, Geoff, Mike, Steve and Kate, and to improved support for carers across Victoria and Australia.

* Stephen Alomes is an Adjunct Professor in the Centre for Global Research, RMIT University. His story of Kate Jones is at https://www.theage.com.au/national/versatile-researcher-revealed-the--personal-stress-of-politicians-work-20150514-gh1up9.html

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