'Things we wish we knew when our dads were diagnosed with dementia in our early 20s.'

Both of us found out about our dads' dementia diagnosis when we were in our early twenties.

These were meant to be our years of reckless abandon, experimentation, and self-discovery. Yes, we did all of those things and more but every moment carried with it an unbearable weight of incommunicable grief. 

Who could we speak to? How would we navigate this?

Without our connection and close friendship, we would have suffered in silence. Together, we supported one another through the decline of the first men we ever loved due to early-onset dementia. Without each other, the journey seemed insurmountable.

When you mention the big D to those around you, there's a certain look people give – a furrowed brow with a heavy sigh. A mixture of sorrow, pity and empathy lingers in the air wrapped in the relic of a word that quite literally implies the descent into madness. 

The word "dementia" carries a weight that is hard to describe. It's not just a medical label but a seismic shift in how we view our loved ones and our future together. Accepting this diagnosis was a journey fraught with fear and uncertainty, but it also became a catalyst for profound personal growth and resilience.

Watch: A mother and son's journey with dementia. Post continues after video.

Over the years we built an armour of coping mechanisms, but it is the profound power of love, laughter and community that has transformed our relationships and sparked indescribable joy. 

Thinking back to the first diagnosis we remember the little things that caused annoyances — forgetfulness, moments of confusion, frustration, and fear. We wish we could rewind the clock and celebrate them because it was then that our dads still had so many pieces of themselves that we could connect with. 

As time went on, it was challenging to watch little pieces of their soul vanish as their identity shifted. They had guided us for so many years and we grieved the loss of that bond.

Steph with her dad, Ronnie, and Claudia with her dad, Graham. Image: Supplied.

One of the greatest revelations in this journey has been the power of having strong, resilient caregivers in the form of our mothers. They are not just caregivers — they are/were our dad's backup brains and sense of home. 

However, the burden they carry is immense. They navigate the isolation that often accompanies caregiving, the sense of losing a partner even as they physically remain beside them. With this, other family members, especially children start to develop a constant worry and anxiety for the mental health and well-being of our mums or anyone who is a sole caregiver for someone living with the disease.  

An essential lesson we've learned is not to shy away from seeking help. Don't put this off! Government assistance and professional caregivers have been invaluable in easing the burdens on caregivers and their families. 

It's a step that many delay out of fear, shame or denial, but embracing it has been a transformative experience. It has allowed everyone to enjoy the beautiful time we have with our dads and create meaningful memories that we will cherish forever. 

Our mothers are unsung superheroes. Their selflessness, resilience, and unwavering love form the backbone of our families. They embody what it means to love unconditionally, to accept flaws and embrace differences, and to stand strong in the face of adversity.

Claudia with her parents. Image: Supplied.

Another lesson we’ve learnt is to have a laugh! Through laughter, we've learned to embrace each stage of this journey. We've found humour in the strangeness of dementia, creating moments of joy amidst the challenges. We've learned patience, compassion, and the importance of removing shame and embarrassment from the equation. 

Try and embrace the change rather than hide from it — this was one piece of advice I (Claudia) gave to a friend whose dad is in an earlier stage of dementia than mine. We were talking and she was saying how embarrassed she felt when her friends would come over and he would constantly repeat himself, my dad used to be like this — always loved a good yarn. However, now he finds it much harder to find his words. I only wish he was still as talkative in his early stages, even if he was just repeating himself. 

For me, (Steph), record any and every moment of clarity on your phone. You’ll find that certain places, people and things spark this incredible yet fleeting spark of your loved one’s former self. They have stories to tell and more often than not, you’ve never heard them.

Steph and her family. Image: Supplied.

In each other, Steph and I have found a lifeline. Our shared experiences have created a bond that transcends words. We've discovered the importance of a support system, of friends and loved ones who stand by us through thick and thin. 

Our stories are not unique, yet they carry a message of hope and solidarity. To anyone navigating the tumultuous waters of early-onset dementia, know that you are not alone. Reach out, seek help, and embrace the love that surrounds you. Together, we can navigate this journey with resilience and grace.

On the 2nd of June 2024, in loving memory of Steph’s dad Ronnie, and to stand alongside Claudia’s dad, Graham, we will be doing the Memory Walk and Jog again to raise money for Dementia Australia.

This is a cause very close to our hearts, we want to raise money and awareness to shine a light on this disease and to support anyone who may feel alone. We’re on a mission to raise $15k and if we reach that, we’re committing to do the entire walk in our Jeffrey Campbell Litas! 

Read more insights, tips and lessons learned from Claudia and Steph here. You can also donate to their Memory Walk and Job fundraiser through this link.

Feature image: Supplied.