Life with Dad: Caring for my father after his dementia diagnosis

Dominique O’Leary, Chief Operations Officer at CareerHub, shares her experience as a carer for her father, Noel, who was diagnosed with vascular dementia in 2020.

Growing up, Dominique saw her dad as her hero. A plumber by trade, Noel was known for his warmth, sense of humour, and social nature. Whether cracking jokes or enjoying his hobbies like fishing and golf, he was everyone’s friend. But when he was diagnosed with dementia, the roles began to reverse, and Dominique faced the heartbreaking reality of caring for him.

Although Dominique had suspected her dad might be living with dementia, hearing the official diagnosis was still a shock. "The grief continued during his decline, knowing dementia is terminal," she says. Dominique and her mother tried to keep Noel in good spirits, using humour to ease his worry. Sometimes, she’d have to leave the room to cry, but she focused on finding ways to connect with him.

As his condition progressed, Noel struggled with eating, so Dominique would sometimes play the spoons – something simple but deeply meaningful for them both. "It was something so simple, but it really connected us," she recalls. They also sang his favorite songs and performed silly dances to make him smile. They’d never say goodbye when leaving, only “I’ll be back,” imitating Arnold Schwarzenegger, a small way to maintain their bond.

In caring for her father, Dominique knew how important it was to help him maintain his sense of self. Noel had always taken pride in wearing crisp, colorful shirts, and even when he moved into aged care, Dominique and her mother continued to wash and iron them as he once did. "It meant so much to help him retain his wonderful character and dignity," she says. Admitting him to aged care was one of the hardest decisions Dominique faced, but she quickly learned that the journey didn’t end there.

Managing her dad’s care in the facility, advocating for his needs, and staying on top of his health became critical. Dominique educated herself about dementia through research and courses with Dementia Australia, equipping her with the knowledge to anticipate the challenges of each stage. "This knowledge helped me stay one step ahead of the stages of dementia," she explains. She was determined to maintain her father-daughter relationship and ensure his connection with loved ones remained strong.

To keep their bond alive, Dominique created a life story book filled with stories, photos, and memories of Noel’s life. His siblings contributed stories, and even as he became less verbal, the book sparked reactions, such as smiles or brief comments, keeping their connection intact. "I’d bring in a new story every time I visited, and it was something for him to look forward to," she shares. This book also served as a valuable tool for family and friends to engage with Noel, especially when they weren’t sure what to say.

Dominique emphasises the importance of seeing people with dementia as full humans with their own stories and dignity. "People with dementia need to be seen as full humans with their own stories and dignity," she says. Being a carer often means sacrificing your own life to advocate for their rights, comfort, and well-being. For Dominique, caring for Noel was a privilege – he had raised and loved her, and now it was her turn to give back.

She encourages others caring for loved ones with dementia to create a life story book as a way to strengthen the person’s sense of self and maintain a meaningful connection. Dominique firmly believes that despite the challenges of dementia, quality of life is found in these moments of connection, which last long after they’re gone. "I really disagree when people say there’s limited quality of life for someone with advanced dementia," she says. "Quality of life is reaching in and connecting with someone you love."

Now a Dementia Australia Dementia Advocate and Peer Leader, Dominique continues to share her story to help others in her father's name.

For more information or support, contact the National Dementia Helpline at 1800 100 500 or visit dementia.org.au.