CHOICE IS BIGGER THAN ‘CHICKEN OR BEEF’? Your Say

In this new column, we give readers an opportunity to talk about an issue that matters to them. For Autumn, it’s carer and carer advocate George Helon from Toowoomba, Queensland.

For the past 11 years, I’ve been the full-time primary carer of my ailing mother, who has Lewy Body Dementia (LBD) and is in declining physical health, with severe mobility issues, chronic health conditions and numerous ailments.

I’ve also got my own set of health issues, including a rare genetic disorder, a brain tumour, spinal tumour, mental health issues and I’m close to profoundly deaf.

I receive a Disability Support Pension (DSP) and also receive a Carer Allowance – which is $144.80 a fortnight to look after mum. That works out to about 43 cents an hour.

Every fortnight I find myself having to contribute more and more from my very limited savings and constantly bite into my DSP for mum’s proper upkeep and special needs.

And I’m not the only one in this boat. According to Carers Australia, some 623,742 Australian carers receive a Carer Allowance ($10.34 a day, $72.40 a week, $144.80 a fortnight) and 300,121 receive a Carer Payment ($73.32 a day, $513.25 a week, $1026.50 a fortnight).

To look at it another way, those who receive a Carer Allowance get just 8.91 per cent of the national minimum wage (as set in June 2022) for working four times as much as a paid support worker.

Over the decades, no government has faced the reality of the personal sacrifices and price we pay as carers head-on – the actual human cost – but they’re happy to have us quietly working away in the background for next to nothing, saving them billions of dollars in unpaid care while we suffer physically, mentally, emotionally and financially. Each year, in fact, unpaid informal/primary carers across Australia save the government more than $77.9 billion. And yet we are among the most disadvantaged and vulnerable in the country, living way below the poverty line.

So I acted. Last year, I raised a petition calling on the Prime Minister and the Federal Government to “recognise and care for carers, especially those only in receipt of a Carer Allowance who need immediate, realistic and proper financial recognition”. I’m calling on all Australians to sign the petition – not just those of us who are already carers, because some day, you might find yourself either needing care or becoming a carer yourself.

To join the 14,000-plus people who’ve already signed, go to change.org/ CarersAustraliaPetition. ACG

Death. Dying. Deceased. Dead. There you have it. You just read the four “Ds” and … you’re still alive!

So why is it that the “D” words create such a visceral response for so many of us? And often get met with responses like, “It won’t happen to me,” “Let’s talk about it later” and “Oh, I know I need to talk about it, but just not now.”

However, by deflecting these important discussions, we have, in fact, let one of life’s opportunities (notice I used the word “life”) fly out the window.

Finding Meaning

In his internationally acclaimed book, Being Mortal: Medicine and What Matters in the End, American surgeon Atul Gawande describes how we should be given the opportunity to live a meaningful life, one with purpose. And it’s only by thinking about one’s own mortality, what’s important, and who and what matters most, that we can appreciate the benefits of talking openly about dying, death, rituals, ceremony and what we want to do with our bodies when we die.

It can help to talk to experts to explore this more. End-of-life doulas (think of them as a kind of midwife for the dying), along with others who work in palliative care and endof-life, offer a space for people to explore these important issues.

Being Prepared

Benjamin Franklin was right when he (reputedly) said that “in this world, nothing is certain except death and taxes”. Despite longer life expectancies – largely due to advances in medical technology – as mere mortals, death is one thing that we can’t change. The truth is that 100 per cent of us are going to die, irrespective of whether we openly talk about death and dying or not.

We are confronted daily in the news by death and dying. And we don’t die from it. But when we have to face the reality of our own mortality – or that of someone we care about – our fragility around talking about death can leave us feeling vulnerable, exposed and fragile. But it doesn’t have to. The benefits of talking about death and dying are literally life-liberating. So, let’s explore some of the reasons why we all should be engaging in more regular discussions about dying.

Let Your Wishes Be Known

What music do you want played at your funeral? Or would you prefer silence? I have created a list of my favourite songs on Spotify which I’ve called “Living Wake”. My partner knows these songs are important to me and that they can be played softly and intermittently as I am dying, or at an informal gathering of family and friends after I die.

Create The Right Setting To Talk

One of the best ways to make talking about death and dying more open and relaxed is over drink and food, which will help the conversation to flow.

What we need to do is shift the paradigm from being one of fear of the unknown and being unprepared to one that allows for better preparation for the inevitable. By doing this, you get to take control –whether that be through conversations, documentation or both. Put you own affairs in order (e.g., through an Advance Care Directive, Enduring Power of Attorneys for personal/health and finances; and a will) so that your wishes are known and the important people in your life don’t have to guess what you want.

Knowledge is power. Knowing more about death and dying gives you a little more control over death – which, frankly, is something that we don’t have much control over at all. And, importantly, it gives us the ability to make informed choices.

Don’t let your discomfort in talking about death becomes another person’s burden. Tell the important people in your life what you want – and don’t want. One of the challenges our families or our decision-makers have to bear when we can no longer communicate our end-of-life wishes or when we’ve died, is the absence of these conversations.

So, share what you have done to prepare. Show your loved ones where all your documents are stored and how to access them (passwords, filing cabinet keys etc). Otherwise, all the good work you’ve done in preparing for your end-of-life will have gone to waste.

Tell your family why some life-limiting treatments are acceptable or not acceptable. Talk about what you want your funeral to look like. Are there any rituals or ceremonies that you would like to experience before you die, like a living wake (you can learn more about what these are here: willed.com.au/ guides/living-wake), or your favourite songs being played while you’re dying.

Talk about what you want to happen after you die – do you want a flame or water cremation (also known as alkaline hydrolysis), a traditional burial or a natural burial (being buried without a coffin)?

This is the concept that the late Jon Underwood hit on in 2011 when he set up what has become the international social franchise called Death Cafe (deathcafe.com) – described as a place where “people, often strangers, gather to eat cake, drink tea and discuss death”.

Having run many of these discussions – both in person and virtually – I have found that strangers become uniquely “connected” when they are provided with the opportunity to talk about their experiences, to ask their questions, or to just listen and learn from others. These gatherings are free and have no agenda (the topic is always around death, dying, grief and loss) and they promote a more comfortable, death-literate society. You can use the same concept to talk about these issues with the important people in your life in the comfort of your own home. So have the conversations and take control of your life – and death – and all things in between. It’s a gift to yourself. And to those you love. ACG