At 66, Roh had just retired and moved into a new apartment. She had big plans to socialise more, travel, and spend time with her grandkids – but dementia took all of that away.
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Roh’s worst nightmare was losing her independence – and maybe that’s why this loving, hard-working mum and grandma ignored her dementia symptoms for so long. “I think she knew something was wrong with her memory, but didn’t want to talk about. She hated the idea of needing to be cared for,” says Roh’s eldest daughter Paris.
Some of our most remarkable researchers are starting to unlock new treatment possibilities to improve the lives of people with dementia – and they need your support to make the next big breakthrough.
Roh worked hard to make ends meet. She loved being a mum and cooking delicious food to share with her extended family.
“Mum was very welcoming,” says Paris. “She was a lighthearted, outgoing person and loved to dance and have fun. What she valued most of all was being with her family.”
At age 66, Roh had just retired and was excited to spend more time with her family, but her daughters noticed a shift in her behaviour.
At first it was little things. Mum couldn’t work out how to use her mobile phone. She used to be a really fast walker and over time started walking really slow. Then she forgot how to get to her hairdressing salon and wouldn’t show for catch-ups.
- Arezo, Roh’s youngest daughter
Roh had recently suffered a marriage breakdown: her daughters thought the memory loss and confusion could be due to depression. They helped Roh move into a new apartment to get a fresh start.
“When we’d visit, we noticed Mum was storing clothes and jewellery in the kitchen cupboards,” says Arezo. “She’d tell us her neighbours upstairs were holding big parties - but the loud noise was her own TV on full blast.”
Roh’s daughters took her to a psychologist, who was very concerned. She gave them a referral to a psychiatrist and after an assessment and brain scan, Roh was diagnosed initially with Lewy body disease, but it was later confirmed to be Alzheimer’s disease.
At first, I was in denial. I didn’t want to know what would happen to Mum down the track. It was so traumatic.
Despite countless life-saving breakthroughs in the 21st Century, no effective treatment exists yet to stop dementia. It is still the leading cause of death for women in this country.
“Mum’s decline was so rapid,” says Paris. “Suddenly she didn’t know where to put toilet paper. And when she looked at her reflection in the mirror, she’d talk to herself or laugh as though chatting to a friend.”
Roh just wasn’t coping. The sisters made a tough decision to move her into aged care, where she could get round-the-clock support.
“Mum felt abandoned. She was angry. She’d raised us and cared for us – and now she thought we were just throwing her in there,” says Paris.
People still say to us: ‘Is your mum getting better?’. We have to explain that dementia isn’t something you can get better from.
Then the COVID-19 pandemic hit, and Roh’s family could not see her. When they finally did, they faced their biggest shock yet:
“Mum had declined even more and stopped walking and talking altogether,” says Arezo. “We never even got to hear Mum say the words ‘I don’t know who you are’ – it was just silence from then on.”
We need to move much faster to pursue promising research leads and stop families from losing loved ones to dementia. We don’t want Roh’s children and grandchildren to have to live with the threat of dementia their whole lives.
While much has been achieved, with your support, we need to do more to ensure the brightest minds have the funds required to achieve further research outcomes.
Dementia Australia-funded researchers are at the forefront of ground-breaking work to halt this growing health crisis. Through our annual Dementia Grants Program, we can ensure the country’s most talented early carer dementia researchers get the funding they need, so there is no delay in unlocking new treatment possibilities.
But they can’t do it without you.
Please send your tax-deductible gift today.