Coffee with Mum, on Mother’s Day
- May 9
- 3 min read
Updated: May 10
My mum is 93. She has a laptop, an iPhone, social media accounts—and still drives the family RAV4. She’s sharp, independent, and generally well… unlike my husband, her son-in-law, who is living with young onset dementia.
We all live together, so the contrast is constant. It’s confronting. It’s impossible to ignore.
Mostly, Mum worries about me. She has a front row seat to this life, seeing me at my best, and at my worst, as I navigate being a full-time carer while trying to hold everything else together.
My mum is part of just a tiny fraction of her generation still with us. Her life spans the full arc of modern New Zealand - from hardship and war, to progress, longevity, and a far more connected world.
She’s seen systems change. Improve. Evolve. But she also sees where they haven’t.
New Zealand’s health and social systems have come a long way in her lifetime, but they still fail people with younger onset dementia, where support is delayed, age-inappropriate, and focused on decline and risk rather than enabling people diagnosed in their 40s and 50s to remain active, connected, and living full lives.
Witnessing struggle is not new to Mum. She spent much of her working life with organisations like Birthright and Muscular Dystrophy. She remembers the fights.
“I spent years battling a system that made people prove they were ‘disabled enough’ before they could get an electric wheelchair. What had to change was recognising that independence and dignity should come first—not last.”
She’s seen stigma shift too.
“Back when I was younger, people barely even said the word cancer. It was whispered and hidden. But from around the 1970s onwards, with awareness, screening, and better treatments, it became something we could talk about openly. Now it’s understood, supported. People and systems face it together.”
She goes on to talk more widely about other conditions.
“I remember when children with Down syndrome were kept out of sight, and families were left to cope alone. Over time, with advocacy and inclusion, that changed. Today there’s far more visibility, understanding, and support.”
She’s witnessed change happen before. Real change. Which is why this is so hard.
Because here we are, still in the dark ages when it comes to dementia. Especially younger onset.
She wonders how long it will take this time. And quietly, I think she wonders… will it come soon enough for my daughter .. my son-in-law … my family.
But Mum also says something else. Something she’s learned from a lifetime of pushing systems that didn’t work.
She says, “It often only takes one person to start pushing back—just one—to get something moving.”
And she’s seen that happen in this country before, like people who simply refused to accept what wasn’t right, and others followed.
She sees me now, walking a path not so different from her own—but this time it’s deeply personal. It started with me, just trying to make sense of our world, and then others found their way to us… and before long, we had something bigger than any one of us—the Young Onset Dementia Collective—growing, gathering strength, and carrying all of our stories forward together.
Advocating. Pushing. Determined to shift a system that doesn’t yet fit.
Not just for us. But for every family trying to navigate a dementia journey which the system still doesn’t fully understand.
This Mother’s Day, I’m reminded—change does come, often slowly and imperfectly, but it starts when someone is willing to speak up and keep going.
And maybe… that’s something I learned from her.
Happy Mother’s Day - not just for today, but for all the quiet, unseen days in between, because this journey doesn’t pause for a calendar, and every single day, every moment, truly counts.
Stand with us. Share the story. Be part of the change.
If this story resonates with you, you’re not alone—and neither are we. The realities of younger onset dementia are still too often unseen, misunderstood, or unsupported. But together, we can change that.
Explore our website for more lived experiences, access resources, and connect with a growing community of people and whānau navigating this journey. Connect with our social media platforms. Join us. Share your voice. Help build something better—for today, and for all the days that follow. JOIN THE COLLECTIVE
