A mother’s legacy lives on following dementia diagnosis

When Miriam’s mother was diagnosed with dementia, she had to quickly learn how to navigate a complex healthcare system, manage family dynamics and balance caring duties with paid work.

Her role as daughter grew into that of carer – a term she struggled to embrace.

“I thought: ‘Am I a carer? Can I do this?’. I have four children and I have grandchildren – I know how to be loving, gentle, caring, considerate,” she said.

“So can I apply that to my mum and show her, respectfully, how I can care for her? My answer was yes.”

Miriam, who now works as a Dementia Australia Family and Community Coordinator, shared her story of caring on the Hold the Moment podcast where she described that period of her life as a ‘very trying time’.

Sharing the caring load

She realised that if she and her family were to manage caring for their mum, they needed to share the load.

“I knew that one of the family members might be really good at doing the budgeting side for Mum,” she said. “Another person might enjoy walks with Mum. Someone might be interested in helping out with the medications and those sorts of things.

“We all have a role to play.”

Reliving past trauma

An added complexity was that Miriam’s mother was part of the Stolen Generations and, as her condition progressed, her childhood memories started to seep into her daily experiences and she started to relive past traumas.

One particularly frightening instance happened when Miriam’s mum was in hospital following a fall and began to become agitated, urging Miriam to run.

“I realised Mum was reliving when she was stolen when she was four years old,” Miriam said. “I think being in a hospital setting because it's an institution may have triggered Mum.”

A mother’s legacy

Despite the challenges and heartbreak, Miriam said the knowledge and wisdom her mother had passed down to her children and grandchildren provided guidance during such a difficult time.

“It’s what she taught us – strong morals and ethics provide a path for the decisions you make in your life,” Miriam said.

“The knowledge she had and the experiences she gave me along the way is what I'm going to use in my everyday life, and that includes my work life too.”

Miriam now works as a Family and Community Coordinator for Dementia Australia where her personal experience and professional skills help her to support other families going through what she and her family did.

“My priority is working with Aboriginal and Torres Strait Islander people,” Miriam said. “I love being out in the community, speaking to people and listening.

“I remember being in that situation and I know how challenging it was every day, every minute, every second of the day and it consumes you as a carer.”

Getting support

You can listen to Miriam’s episode, titled ‘From carer to mentor’, on Dementia Australia’s podcast Hold the Moment which is available on the website or wherever you get your podcasts.

You can find more information about caring for someone living with dementia, on the Family, Friends and Carers page on our website.

For free and confidential support, advice and expert information you can call the National Dementia Helpline.  

The National Dementia Helpline operates 24 hours a day, seven days a week, 365 days a year on 1800 100 500.