Walking the unknown road: Jessie’s journey as a dementia carer

My name is Jessie Halls, and I am a proud member of the Don’t Dementia It! support group at the Kyabram Community and Learning Centre. This is my story as a wife, a carer, and now, a dementia advocate. 

Please remember, this is my personal experience. Everyone’s journey with dementia is different, and what I experienced may not reflect what you or your loved one might go through.

Being a carer for a loved one with dementia is like stepping into unfamiliar terrain. It changes your life overnight. You find yourself asking: Where to now? How do I navigate what’s coming? What help is out there for me and for them?

The truth is, the road is unknown. It’s physically exhausting, emotionally draining, and deeply isolating. While you try to keep life “normal,” you’re constantly adjusting, sometimes daily; to new challenges.

Eleven years ago, my husband Quentin was diagnosed with tonsil and throat cancer. After radiation and chemotherapy, he went into remission. But after years of hospital visits, surgeries, and setbacks, something else surfaced... something we didn’t expect.

Nine years ago, Quentin was diagnosed with early onset Alzheimer’s disease at just 62 years old. It began after shoulder surgery, when he experienced hallucinations, confusion, and memory loss. After countless tests and assessments, doctors confirmed our worst fears: dementia.

In the early years, medication seemed to help. Quentin was still active, gardening, brewing beer, fixing things around the house. Friends and family thought he was “fine.” They’d talk to him about the past, and because his long-term memory was intact, they couldn’t see what I saw every day: the repeated questions, the short-term memory loss, the confusion.

I often doubted myself, even doubted the doctors. But slowly, the changes became undeniable. Objects were misplaced in odd places, shoes in the fridge, the fan dismantled and scattered on the floor. Hours were spent searching for his wallet, only to find it hidden under ripped carpet.

As the disease progressed, paranoia set in. Accusations. Hurtful words. Mood swings that left me walking on eggshells. Quentin grew stronger physically while I felt weaker emotionally. I became the carer, the housekeeper, the cook, the nurse, the driver, and most of all, “the watcher.”

Every outing meant carefully watching for signs of agitation, finding ways to redirect his attention, bribing with ice cream just to keep the peace. Many afternoons, I chased him down the road because he no longer recognised our home and insisted on “going home.” Ambulances and police became part of our reality.

The locks on our doors and gates were meant to keep him safe, but in truth, I too felt locked inside - a prisoner of a disease that was slowly taking both of us.

Eventually, Quentin’s wandering became too dangerous. He escaped over fences, past gates, down roads. I couldn’t keep him safe anymore, no matter how hard I tried. Exhaustion, fear, and grief consumed me. I was losing the man I loved, and at times, I felt like I was losing myself.

The turning point came when Quentin was admitted to Bendigo Hospital after another escape. After weeks of monitoring, his doctors told me the decision I dreaded but knew was right: Quentin needed full-time care, for his safety, and for mine.

Since December, Quentin has been living at Warramunda, a local aged care facility. He still knows me, greets me with a smile and a kiss when I visit every second day. Sometimes, he still tries to escape, that’s Quentin. And although I leave with tears in my eyes, I know he is in the best place for him.

Caring for Quentin took a heavy toll on me. Sleepless nights, constant vigilance, and the silence of friends drifting away left me isolated and exhausted. Carer burnout is real. With dementia comes not only the depression of the person living with it, but often the carer too.

There were days I felt like a stranger in my own life. Days I questioned: Who am I now, beyond this role of carer? Grief was constant, grieving for the man I once knew, and for the life we had planned together.

But I found light in the darkness through the Don’t Dementia It! support group in Kyabram. This group became my lifeline. They didn’t judge. They understood. They helped me see I wasn’t alone, and slowly, I began to rebuild my confidence and find my voice again.

Through the Kyabram Community and Learning Centre Inc and being connected to the Don’t Dementia Support Group and Dementia Voice’s Alliance, I enrolled in Learn Local short courses, upskilled myself, and grew so much in confidence and as a person.  Today, I am proud to give back as a Dementia Advocate, supporting other carers’ and people living with Dementia who are walking their own unknown journey.

If you take anything away from my story, let it be this: Talk about dementia. Accept the help that is out there. Don’t hide away or feel ashamed.

Every journey is different, but no one should have to travel it alone. Community support is the key, not just for the person with dementia, but for the carer too.

I’m still Jessie. I’m still Quentin’s wife. And though dementia has changed our lives, I have found strength in sharing, in connecting, and in continuing to care, with love.

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