KymUnity Dementia Doula

03/08/2026

❤️❤️❤️

We are so excited for the official launch of Cake Tin Conversations today! Our flow on monthly program that follows on from our positive ageing gatherings.

We do hope you'll join us for a 2hr time out designed just for you, families (or chosen family) impacted by dementia.

Drop us an email if you'd like to register.

Email: [email protected]

or to register:
https://forms.gle/U4S8SP4XJ55ipRv8A

See you soon! Warm regards, The DDA team🍂

Better Together Music with Jenny

29/07/2026

There was a day I realised I couldn’t fix dementia.

Not because someone told me.

Because I finally ran out of things to try.

I had spent so much energy searching for answers. Hoping the next appointment, the next medication, the next strategy, or the next piece of advice would somehow bring the man I loved back to me.

I wanted to make things better.

I wanted to make life easier for Kym.

I wanted to stop the disease from taking another piece of him.

But dementia doesn’t work like that.

The day I stopped trying to fix it was the day I started truly being with him.

Instead of correcting, I comforted.

Instead of reminding, I reassured.

Instead of focusing on what we had lost, I looked for what we still had.

It wasn’t perfect.

There were plenty of days when I couldn’t do this. Days when I was exhausted, frustrated or heartbroken. Days when I corrected him, cried in the bathroom, or simply wished things were different.

But on the days I could let go of trying to fix dementia, we truly connected.

Some days that was a shared laugh.

A walk together.

Holding hands in silence.

A smile that needed no words.

I realised that my role wasn’t to cure dementia.

My role was to make sure Kym still felt safe, loved and valued, even on the days the world no longer made sense to him.

That didn’t make the sadness disappear.

It didn’t make the grief any lighter.

But it changed how we spent the time we had left together.

If you’re caring for someone living with dementia, please know this:

You are not expected to have all the answers.

You cannot fix dementia.

But every moment of kindness, patience and love you give still matters.

More than you will ever know.

❤️

Jenie

20/07/2026

One of the hardest things no one prepared me for wasn’t the caring.

It was becoming a carer before I was ready to stop being a wife.

There wasn’t a single day where everything changed. It happened quietly.

I found myself making more decisions.

Remembering the things he no longer could.

Explaining things to others.

Speaking on his behalf when he couldn’t find the words.

Somewhere along the way, I realised I was carrying responsibilities I never expected, while desperately trying to hold onto the relationship we had always known.

People often asked how Kym was doing.

Very few asked how we were doing as a family.

I don’t think they meant to overlook us. They simply couldn’t see what was happening behind our front door.

The hardest part wasn’t just losing pieces of the man I loved.

It was losing pieces of us.

The conversations that came naturally.

The plans for the future.

The partnership we had built together.

Yet even as those things changed, something beautiful remained.

We still laughed. One thing that got us through the tough days was our sense of humour, as a family we had to let go of what was so we could embrace what still is.

We still found comfort in holding hands.

We still had moments where love spoke louder than words ever could.

Dementia taught me that relationships don’t simply end.

They evolve.

If you’re walking this path, and you’re grieving someone who is still sitting beside you, please know your feelings are real.

This kind of grief has a name. It is called anticipatory grief.

And you don’t have to wait until someone dies before your heartbreak is acknowledged.

Your love is still real.

Your grief is real too.

❤️

Jenie

16/07/2026

Please see information below from Dementia Doulas on the Village where you can connect with services that support people living with dementia 💕

10/07/2026

Families are not visitors. They are partners in care.

When someone is living with dementia or another complex illness, families don’t suddenly stop knowing the person they love.

They know the little things that don’t appear in a medical record:
💜 What brings comfort.
💜 What causes distress.
💜 The routines that help.
💜 The music that makes them smile.
💜 The subtle changes that signal something isn’t quite right.

Families carry years—sometimes decades—of knowledge, love and lived experience.

As both a former carer and someone who now works in health, I’ve seen the difference it makes when families are genuinely welcomed as partners in care. Better communication. Greater trust. More person-centred decisions. Better outcomes for everyone.

A large part of my work is advocating for carers to have a voice. I work alongside health professionals to help ensure carers are recognised as valued partners in care—not because they know everything, but because they know the person. Their lived experience provides insights that no clinical assessment can fully capture.

Partnership doesn’t mean families make every decision, and it doesn’t mean a person’s rights or choices are overlooked. It means recognising that when the person wants their family involved—or when illness affects their ability to communicate or make decisions—the family can be an invaluable source of knowledge, advocacy and continuity.

When Kym was living with younger onset dementia, I wasn’t just his wife. I was the person who knew what made him feel safe, what gave him purpose, and how he communicated when words became difficult. That knowledge mattered.

Every family deserves to feel heard, respected and included.

Let’s move away from seeing families as visitors and towards recognising them as an essential part of the care team. Because the best care happens when we work together.

💜 Have you ever felt truly included—or left out—when supporting someone you love? I’d love to hear your experience.

13/06/2026

💜 Younger Onset Dementia Doesn’t Wait. Neither Should Research.

This cause is deeply personal to me and my family. My husband lived with younger onset dementia caused by a familial genetic mutation. Like many families affected by inherited forms of dementia, we experienced firsthand the heartbreak, uncertainty, and life-changing impact of this diagnosis.

When dementia affects someone under the age of 65, it doesn’t just affect the individual—it impacts partners, children, parents, friends, workplaces, and entire communities. It can interrupt careers, family life, financial security, and future plans in ways many people never imagine.

For families living with familial dementia, research offers something incredibly important: hope. Hope for better treatments, improved support, and one day, prevention for future generations who may be at risk.

Research is not just about finding a cure. It’s about helping families live better today while working towards a future where fewer people face this devastating disease.

If younger onset dementia has touched your life, or if you’d like to support research that could change the future for families like mine, please consider donating:

💜 Dementia Australia Research Foundation:
https://www.dementia.org.au/dementia-australia-research-foundation

Every contribution, no matter the size, helps advance vital research and brings us closer to answers.

I support dementia research because I’ve lived the reality of younger onset dementia, and I want future families to have more hope, more support, and more options than we did 💕

26/04/2026

Not long now until our Where Wildflowers Gather - High Tea fundraiser. ☕ If you are in or around the Goolwa SA area, we'd love to have you join us for a very special afternoon.

A beautiful way to spend Mother's Day weekend or to celebrate someone special. 🌷🌷🌷🌷

Tickets available:

https://manudelights.rezdy.com/756244/high-tea-with-australian-native-food-flavours

Manu Delights

25/04/2026

When behaviour changes, everything changes.

I remember the confusion when Kyms behaviours changed — the moments that felt confronting, the words that didn’t sound like the person I knew, and the quiet questioning of myself… am I getting this wrong? It took time to understand that these behaviours weren’t intentional — they were part of the illness. And that shift changed everything in how I showed up.

One of the hardest parts of caring for someone living with dementia
is not the memory loss people talk about…

It’s the changes you don’t expect.

The anger that comes out of nowhere.
The suspicion in their voice.
The repeated questions that wear you down.
The moments they look at you… and don’t quite know who you are.
The moments you see them struggling with the simplest things.

And suddenly, the person you’ve always known
responds in ways that feel unfamiliar, unpredictable, even hurtful.

This is where so many families struggle quietly.

Because you’re not just managing care —
you’re trying to make sense of behaviour that no longer makes sense.

You might find yourself thinking:
“Why are they doing this?”
“Is it something I’ve done?”
“Why can’t I reach them anymore?”
“Why didn’t I see this change coming”

But dementia changes the brain.
And when the brain changes, behaviour follows.

What looks like anger might be fear.
What feels like rejection might be confusion.
What seems like stubbornness might be a need for control in a world that no longer feels safe.

And knowing that… doesn’t make it easy.

It’s still exhausting.
It’s still emotional.
It still asks more of you than you ever expected to give.

There is no perfect way to respond.
Other than to be human.

Gentle ways.
Curious ways.
And sometimes… just getting through the moment is enough.

If you are navigating changed behaviours right now —
please know this:

You are not failing.
You are adapting to something incredibly complex.

And you don’t have to figure it out alone.

Because I’ve been there too.
And I know this — love doesn’t go away.
It just changes.

💛 Jenie
Dementia Doula
Walking beside families with lived wisdom and compassion.Register for the dementia doula programs link in my bio

30/03/2026

Today I did something a little different — I took a scenic flight over the beautiful Flinders Ranges.

As I looked out over the vast landscape, the colours of the earth, the winding ridges and endless horizon, a thought stayed with me the whole time… how often we live as though we have all the time in the world.

I often say to family & friends, Kym has taught me to do what matters now, don’t wait until you have the time, don’t think about how much money it will cost make memories now.

Time changes.
Moments change.
People we love change.

So many families say, “We thought we had more time.”

More time to visit.
More time to ask the questions.
More time to sit, hold hands, share stories, or simply be together.

But life gently reminds us that the moments we have today are the ones that matter most.

If there is something in your heart you’ve been meaning to do with someone you love — do it now.
Take the photo.
Ask the story.
Sit a little longer.
Say the words.

Because love doesn’t disappear when memory changes. It simply asks us to show up in the moments we have.

Today the Flinders Ranges reminded me just how precious those moments are.

🤍 Because I’ve been there too, and I know that love doesn’t go away — it just changes, and if everything changed tomorrow I have so many beautiful memories of time spent with the people I love ❤️
Jenie

27/02/2026

Permission.

If you are caring for someone living with dementia…

You have permission.

You have permission to feel tired.
Bone-deep tired.

You have permission to feel frustrated — even when you love them fiercely.

You have permission to miss who they used to be.
And to grieve that loss… even while they are still sitting in front of you.

You have permission to step outside and cry.
To lock yourself in the bathroom for five minutes.
To say “this is hard” without feeling disloyal.

You have permission to not get it right every time.
None of us do.

Dementia changes the brain.
It changes relationships.
It changes families.

And it does not mean you have to carry this alone.

If no one has told you lately — you are doing more than you think.
And it matters.

Because I’ve been there too.
And I know this — love doesn’t go away.
It just changes.

💛 Jenie
Dementia Doula