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So many questions, so many choices – but there’s one very few of us can answer for sure

The acceptance of voluntary assisted dying laws across the nation has not made the choice any easier when it comes to the “long kiss goodbye,” writes Rebecca Levingston

Aug 02, 2023, updated Aug 02, 2023
Aged care advocate Everald Compton wants to see more choice for dementia patients and their families. (Image: ABC, Tony Briscoe)

Aged care advocate Everald Compton wants to see more choice for dementia patients and their families. (Image: ABC, Tony Briscoe)

Talkback radio is a tricky beast.

Everyday I turn on the microphone and try to ask questions that connect.

Why don’t people pick up their dog poo?
How many hours a day do you spend looking at your phone? What happened to America? Which bin do you put your pizza box in? How much is too much to spend on the Olympics? Have you seen the Barbie movie?

In fact I asked the Prime Minister that last question recently and for the record he hasn’t been to the movies since he moved into the Lodge, however he does want to watch Barbie. Matildas qualification pending…

A few days ago I asked a talkback question that made the phones ring hot with emotion.

Should voluntary assisted dying be available to people who have dementia?

It was raised by my favourite 92 year old friend Everald Compton. Elder of the Uniting Church, founder of National Seniors and enthusiastic drinker of whiskey.

He has more energy, curiosity and determination than most people half his age. Me included. Everald campaigned strongly for the introduction of Voluntary Assisted Dying in Queensland. Having seen it successfully pass, he now he has a new ambition.

VAD for people with dementia.

Under the current laws in Queensland, access is limited.

“There has to be a clause that a person has the right to bail out at the last minute,” Everald explained.

“The problem is, if I get dementia they can’t ask me.”

Everald thinks VAD laws should operate like an advanced health directive.

“If they fill out a clear directive to family, that should be honoured even if they get dementia.”

To be clear, Everald fully endorses living a long and fruitful life. Full of kindness and decency. But too many of his friends are facing distress in their final years.

“A lot of people with dementia are dying terrible deaths.”

So when I asked my listeners if they had a view on VAD laws, the response was immediate.

From people who’ve cared for loved ones.
A palliative care nurse.
Aged care workers.
Sons, daughters.
Baby boomers and beyond.

Mandy called the talkback line on the verge of tears.

“Two weeks ago my mother died of Alzheimer’s,” she said gently.

“There’s a significant gap in the system.”

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For seven years, Mandy said her mother existed. It was not the life she would’ve wanted.

“There was nothing that we could do.”

Sandy called in next. She worked in palliative care for 13 years and then moved into aged care and described dementia as heartbreaking.

Her own mother now has the disease and she’s hopeful a review of VAD laws might broaden access to end of life care.

Sandy told me she regularly cared for residents who spoke with brutal honesty during moments of lucidity.

“I’m tired, I’ve had enough… I’m ready to go.”

Everald pointed out the growing number of Australians with Alzheimer’s.

According to the Australian Institute of Health and Welfare, more than 400,000 Australians were living with dementia in 2022. The silver tsunami where not everyone finds a silver lining.

In 2024 the VAD legislation will be reviewed in Queensland. And Everald plans to campaign strongly for people with dementia to be given a choice about death. It will not sit well with some people of faith. Or with those who don’t endorse the euthanasia laws all states in Australia have now adopted.

My studio phonelines kept lighting up with a flurry of text messages from people endorsing the conversation. Sensitive, complex and confronting for some.

Rod texted to say he thinks our attitude to death needs to change.

Claude texted that he supported a dementia clause in VAD laws.

“So many of my 60 plus friends would agree,” he wrote.

The stories of people who’ve watched their parents melt away can make you cry. The mother or father they knew and loved slowly disappeared. Guilt and love collide inside an unfamiliar home. Recognition gone. Care unconditional. Sadness unbearable.

So I wonder about a generation of Baby boomers, the sandwich generation, who’ve had so much choice in their lives. Work, wealth, housing and health – when it comes to the final choice. What will they choose? What choices do they want? And who decides on the options?

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