Consumer stories: Andrea’s father

Transcript

My dad’s experience with healthcare has been over four years. He’s progressed from living in the community into a permanent residential aged care, and now he’s on his palliative care journey. I have supported him through that as his carer and worn multiple different roles as part of that caregiving responsibility.

So we were very fortunate in a way that we had been proactive with having an enduring power of attorney document, an advanced health directive, before my dad got sick. And because he was so unwell, and he went into a state of delirium for quite some time, the challenges for me were making healthcare decisions, lifelong decisions, care decisions, at the clinical recommendations of his doctors and allied health professionals, but also wanting to respect his wishes as well.

And having to make all of those decisions on my own was the most challenging part of it. But being a glass half full person, my father, even though he’s now in the palliative part of his healthcare journey, can reflect back and has actually acknowledged that all of the decisions I made have kept him well and healthy, and he’s right where he needs to be.

At that point, the key thing was how to navigate between all of the systems, so not realizing the blockages between community based care as a Gold Card holder, and then a completely different referral pathway to get an aged care assessment, respite, and aged care. If we would’ve known that back when we were doing our planning with EPOA and advanced health directive, it would’ve been an absolute game changer, because when you hit crisis and you know that you could’ve understood that, and if I could’ve educated myself and built my capacity as a carer to have some of those discussions with my dad, it would’ve made that part so much easier.

While the patient is at the first and foremost of the care that they’re delivering, carers, as that informal support network, are just as critical, and stopping and taking time to ask the carer if they’re okay, rather than just acknowledging what a great job they’re doing, can give carers that resilience and that ongoing strength and belief in themself to keep going.