A Carers Experience: 8 years, 18 months and 108 days

On the 5th December 2022 my Dear Dad passed away after a battle with Cancer. Dad has lived with us for 8 years, and it has been wonderful to be able to have him with us, and to care for him. It has meant in the later months and days we were able to give him what he wanted, which was to die at home with his loved ones.

But as the dust settles on the immediacy of his death, and celebration of his life, a cloud has started to lift, one that I didn’t even realise was there.

Dad moved in with us 8 years ago after it became apparent, he was not looking after himself, and a second pair of eyes (or more) was needed to check in on his mental health, make sure he was eating well and to keep him connected socially. When Dad first joined us, I had not considered that I was his carer, he was very self-reliant, could drive himself to appointments and shopping. In fact, I would have said he was helping us, he was able to baby sit the kids if Adam and I wanted to go out, he worked in our yard and helped where he could.

As I now reflect the caring role that Adam and I took on, it crept up on us slowly, we didn’t really notice the changes we were making to our lives. This role also meant that our lives where different, our small house in Sunnybank did not cope well with an extra person, an additional dog and a cat. So we needed to move, this was not part of our plan, and was a result of the caring role we had taken on. No regrets; we love our home, but it is a major example of the changes and adaptations we made in our lives.

Over time Dads mobility became challenged and elements of his independence were striped away. Not being able to drive was a major change, that had a significant impact on us as carers, having to make sure we got him to appointments, do his shopping and get him to social events.

When Dad was diagnosed with Cancer this was a big step up, and it was during COVID, between Adam and I we shared the load (if I counted the hours I think Adam did more). We needed to get Dad to daily radio therapy, and weekly chemotherapy, appointments with the oncologist and GP (a 2 hour round trip). It was a lot, but we both just kept going and did what we had to do over those 18 months of treatment.

We were both very fortunate to be in the position due to our flexible and understanding employers to provide in home palliative care for Dad. The last 108 days of palliative care were intense. It was both coming to the realisation that this was the end, and also knowing that we had to give him the best care we could. Making the last days the most comfortable and loving. So many times, I had to push the emotion of it aside to get through and do what was needed. It was exhausting and overwhelming.

At this stage I knew I was in the full caring role and it was clear to friends, work and the professionals helping us to get through.

But what I now realise is that caring role was over 8 years, 18 months and 108 days. It was much longer than I had thought, and that those around us had recognised.

During this past 8 years I have worked in a highly demanding role as a consultant, became a Partner at Deloitte and later a Managing Director at Accenture, building a successful career. Adam and I raised our 3 beautiful boys, and so much credit goes to him for supporting our family during this time. Adam and I have grown stronger together in our love for each other. Life did go on, and we actually excelled at it.

A few months after Dad passing there is something that has lifted in me, a weight I have been carrying has been lifted; being a carer is hard! It is undervalued, under appreciated by society and government and not at all recognised enough in terms of the contribution and financial saving carers provide, including the sacrifices they make.

In 2020 Carers Australia estimated that there are 2.8 million informal carers and 900,000 primary carers who spending an average of 35 hours a week providing care. The replacement cost of this care totals $51 billion and the opportunity cost for productivity is $15 billion. Based on my personal experience we bore significant direct financial costs as a family. Not to forget the biggest cost, the emotional, psychological, and personal costs we bore as carers.

Government must do more to support carers in their role and recognise their contribution. A few things I would like to see:

1.     Greater recognition of the important role carers play in the health and social support landscape

2.     Improvement in the use of technology to support carers in their role as advocates in the Multi-Disciplinary care Team

3.     Direct support and assistance for carers – the carers gateway is a good resource but does not suit everyone’s needs

We greatly appreciate and valued the support and assistance we received from the Metro South Health palliative care team and the palliative care blue care nurses. They provided not only guidance, education and 24hr support for the palliative care of Dad, they regularly checked on our mental health.  

The last 108 days of Dads life for us as cares was confronting but grounding. It was a privilege; not a chore. It has been an honor to be able to provide care at home care till the end; the way he wanted it.

I am proud of how we cared for Dad. But now my role is done, I feel a new energy and excitement about what I can do, given the cloud has lifted, exciting to imagine the possibilities. 

Thank you to Corin Moffatt Georgina Kilroy Aaron Hill Adam Triggs Stephanie Thomson Jessica Rozen Michael Brennan Shaun Chau Andrew Charlton Amit Singh for being the most amazing colleagues for helping me through those last few month. Team work makes the dream work!

#carers #carersaustralia #valuecarers #palliativecare #homecare