Heartbreak and happiness: A day in the life of a carer

After her mum was diagnosed with dementia in 2020, Elissa Doherty had to make a choice. She shares the highs and lows of being a carer during the Covid-19 pandemic.

It was over fish and chips with my mum on a wintry night in 2020 that I knew something had to change.

Being during the Covid-19 pandemic, it wasn’t a typical family meal.

I was standing outside her aged care home, speaking to her on the phone while pressing an iPad up to the glass so she could see her grandchildren on FaceTime interstate.

I had dropped off her dinner at reception, eating mine on my lap in the cold.

These were the early, uncertain days of the pandemic.

Mum, 71, was diagnosed with dementia just weeks before Covid-19 struck.

She wasn’t safe living alone, so we had just moved her from her hometown of Adelaide to Victoria to be close to family.

Lockdowns and love

I had hoped to take her out of the care facility regularly but that plan was foiled by lockdowns.

For months she’d been living with strangers, confused and stripped of her independence, battling the twin demons of dementia and mental health issues.

Every time I visited her window it broke my heart, as the pandemic stole away precious moments together.

But that night was the final straw.

She repeatedly asked: ‘When am I coming home with you?’

In that moment, I decided it would be soon.

Throughout my career as a journalist I had interviewed extraordinary people taking on a caring role for family or friends.

But I never envisaged I would become one myself when single and working full time.

I gave notice at my St Kilda flat, found an empty and spacious Airbnb to rent for six months on Victoria’s Surf Coast and joined the ranks of more than 700,000 Victorian unpaid carers.

There were moments of sweetness and moments of struggle.

During rolling lockdowns, we watched fairy penguin parades online, walked on the beach, watched movies and spotted bunnies in the neighbourhood at sunset.

A balancing act

In time, we were granted a government-funded Home Care Package, which provided 15 to 20 hours a week of support workers.

But it barely scratched the surface, as Mum needed assistance with medication, meals, showering, personal hygiene, shopping and transport and couldn’t be left alone overnight.

I juggled much of this in between work, taking comfort in seeing her calm and, to some extent, content.

The biggest reward was seeing her come alive when services started returning.

A social support group run by Barwon Health in Anglesea was the highlight of her week and she relished the thrice-weekly bus rides down the Great Ocean Rd. I suspect she fancied one of the staff.

The power of companionship

Mum was like a new person, with a happy twinkle in her eye.

The companionship and structure were balms for her mental health issues and, in addition, we built up a team of sensitive, kind and funny support workers.

But I underestimated the emotional and physical toll it would take on me.

Mum needed regular trips to hospital for different ailments and falls, specialist appointments and therapy, and there were always new symptoms emerging.

When offices reopened, it was tricky to make the three-hour round trip to Melbourne for work.

Often at night, I lay in bed frozen, worried she would fall.

My anxiety levels rose, but I kept telling myself there were carers dealing with much higher needs.

And after my small glimpse into the world of caring, it was clear these people deserved more recognition and financial support.

Shining a light on the unpaid carer force

According to Carers Victoria, in 2020, the annual cost of replacing Australia’s unpaid carers was an estimated $77.9 billion.

Already, more than 1.6 million Australians are caring for someone living with dementia, and that is only going to rise with our ageing population.

Dementia Doulas International founder Wendy Hall says many people with the condition are still not getting the best, tailored support they need.

She set up her organisation in Australia in 2019 to advocate for sufferers and support families.

“Our role is totally dedicated to compassionate care at a leadership level, so it’s not just doing fun activities,” Wendy, a former nurse, says.

“It’s about that quality of life; it’s about that representation and advocacy, giving families a voice and enabling them to play a more active role in their loved ones’ care.”

The emotional toll of caring

Ultimately, I had to send Mum back to aged care as I became overwhelmed and unwell.

That broke my heart all over again.

I know I tried my best, with the help of some of the most compassionate people you will meet.

Organisations such as Carer Gateway proved invaluable, with free counselling and emergency support staff.

My only hope is future generations don’t have to suffer the indignity and distress of this insidious condition.

And that we can support more investment into keeping people at home for longer.

A brighter future for dementia care

Dementia Australia chief executive Maree McCabe says there are reasons for optimism about dementia in future.

Chief among them, Maree says, are new medications for people with early Alzheimer’s disease and mild cognitive impairment, fresh insights into risk reduction such as detecting changes to hearing and other lifestyle factors, and the development of tests to detect biomarkers in the blood.

“I think we’re getting closer than we’ve ever been to more effective treatments and ultimately to finding a cure,” she says.

“And that’s why research is so critical — we’re getting a much better understanding of risk reduction and there’s so much more that we can be doing to make a difference in this area.

“I think that it’s a time of hope for people.”

As for Mum, she’s now living in aged care in Western Australia, close to my brother, where she has regular family dinners — in person — with her grandchildren.

And that’s when her happy twinkle returns, even fleetingly.

For information and support, phone the National Dementia Helpline on 1800 100 500 or visit dementia.org.au

More on resilience and mental health:

Written by Elissa Doherty.