The cruel reality of loving someone with Dementia

Fifteen years ago today my grandmother died from dementia.

But in truth, she was gone long before she took her final breath.

For six years, dementia slowly stole her memories, unravelled her identity, and dimmed the spirit that once defined her.

It was a cruel, long, sad demise.

Granny had been an iron-willed woman, as quick-witted as she was fierce.

This was a woman who once berated me as a little girl for asking her why she always made Popsy - her beloved husband - help her make their bed each morning.

“And why on earth wouldn’t I? He sleeps in it too doesn’t he? What a ridiculous question”.

Granny was proudly feminist before we even knew what it was.

I cannot imagine the anguish she felt as dementia started to take hold.

Especially in the early years when she’d just started to become forgetful, and before the full onslaught of this debilitating disease took all of her cognitive functions.

A forgotten sentence here. A repeated story there. A slow mental decline, and then her mobility started to fail. Granny had the energy of an ox - often dragging us grandkids out of bed early on the weekend for a trip to the markets. Losing her ability to walk would have been mental torture for her.

Eventually she stopped eating, and passed away at 80 surrounded by her husband, children, and many of her grandchildren.

My grandfather ‘Popsy’, her loyal companion and tireless cheerleader, was never the same.

And in a cruel twist, he too developed dementia before he died in 2016.

Pospy’s death was not as protracted but watching him slowly losing joy in the things he once adored – like studying the Herald Sun’s racing guide every single morning – was just as heartbreaking.

Sadly, my story is not rare.

Last week it was revealed that dementia has become the number one killer of Australians today, surpassing heart disease.

Right now, about 430, 000 Australians live with dementia.

But the ripple effects reach much further—around 1.7 million people are directly involved in caring for loved ones with the condition.

In the Northern Territory, around 1800 people are currently diagnosed, but the rates could be much higher as numbers are likely underreported - especially amongst our First Nation population and in some ethnic communities where stigma and cultural misunderstanding often obscure the true picture.

This lack of awareness and underreporting only serves to delay support, making the journey harder for everyone, and ultimately having a profound and serious economic impact on Australia.

And if a cure isn’t found, nearly one million Australians will be living with dementia by 2054.

Until then, the most powerful steps we can take as a society are to keep the conversation about dementia alive, raise awareness of its impacts and possible prevention, and continue pressing funding bodies to make the investments this issue deserves.

Finally - the dementia narrative often fails to recognise the crucial role carers play, and the unrelenting mental load they themselves carry.

These selfless carers absolutely deserve to be recognised for doing this heavy lifting.

Because being a carer isn’t just about answering the repetitive questions every single day.

It’s about living in constant vigilance - making sure they don’t wander off in the middle of the night, forget to turn off the stove, or mistakenly take a tumble at the wrong turn.

It’s about providing love, patience, and purpose to someone whose memories have vanished, but who still deserves a life of dignity.

And it’s about doing all this while quietly grieving the person you once knew … even as they sit right in front of you.

For more information go to Home | Dementia Australia

The cruel reality of loving someone with Dementia

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