Carers Week 2021 – Millions of Reasons to Care

“Carers are an essential part of our health system. They are the foundation of our aged, disability, palliative, and community care systems.”

Every year 2.65 million Australian carers perform 2.2 billion hours of unpaid care. There are many reasons why a person may become a carer – disability, mental illness, chronic conditions, terminal illness and ageing, just to name a few. We often never really stop to think why we have become a carer. The situation arises and we just jump in and do it because it’s family or friends and that’s what you do. Governments know this and they depend on it. You could even call it exploitation, if you like. It’s a very serious issue, though, if we are the foundation of our community care systems. That means we are essential workers. What happens when we can no longer perform this essential and foundational function?

Well, it will cost $77.9 billion every year to replace that unpaid work that we do.

These figures are quite astounding. What is even more astounding is that they do not even take covid into account. This means that currently the number of carers and the number of hours of unpaid work is probably much, much higher. Restrictions, lock downs and the suspension of disability and other support services has increased both the work and the stress levels of carers everywhere. The vaccination roll-out has also added another level of anxiety.

We were quite fortunate in that Dan’s service provider, Yellow Bridge, organised with Queensland Health to set up a vaccination hub for clients and support workers. The process was really easy to get Dan vaccinated. Unfortunately that has not been the case for others. Some parents have found it very difficult to access vaccination for their children with disabilities. 

It is often assumed that once a child or teenager reaches a certain age they are able to speak for themselves. However, if you are the carer for a young person with an intellectual impairment or who is non-verbal, you often need to make decisions and advocate on their behalf. I have often had someone from Centrelink or some other department ring up and ask to speak to Dan – obviously they have not read his file or they would know I am his nominee – and I have to explain that Dan is nonverbal and they need to speak to me. Fortunately I have never had any trouble. But just recently I read about one mother who was trying to book a vaccination for her non-verbal teenager. Even after explaining that her son was non-verbal, the operator insisted that she had to speak to her son to organise the booking. Seriously! The mother had just explained that her son was non-verbal. How did the operator think a conversation with a non-verbal teenager was going to go? It was clearly a case of a lack of disability training and a failure to recognise the vital role that parents play as both carers and advocates. It just adds layers of extra stress to a role that is already under-recognised and under-appreciated.  

Being a carer in these covid times brings additional responsibilities and anxieties as we strive to keep our vulnerable loved ones safe. We have some sad news this week. Paul’s mum, Joy, has been having chemotherapy treatment for pancreatic cancer. For a while chemo kept the cancer at bay. The first results looked quite promising. The cancer wasn’t growing and additional spots were not showing up elsewhere. Unfortunately we have now come to the end of the road. Joy’s diagnosis was always terminal. There was no cure. We knew that. The chemo would just buy her some time. But now the pancreatic cancer in her lungs is growing and there is nothing more they can do. Now it is just a matter of time. How long, we don’t know. But the approaching opening of borders, lifting of restrictions and move to the Living wth Covid phase brings additional anxiety and uncertainty. We are all vaccinated but we have friends who at this stage are still refusing to be vaccinated. Living in a small country town out west, they think they are safe.

Over the next weeks or however long we have, we will be gradually stepping in to become Joy’s carers, and we will be forced to make decisions. Decisions that some friends may not like. Chemotherapy and the cancer have left Joy’s immune system compromised. We have to do everything we can to protect the life she has left, even if that means turning away unvaccinated friends. It might even mean we will have to curtail our own social lives to protect Joy. We will have to be vigilant about where we go, who we see, and constantly assess our own health status. And this will be repeated by every carer of a vulnerable person.

Paralympian and disability advocate, Kurt Fearnley, has publicly pleaded for all eligible Australians to get vaccinated to protect the disabled community. People with disabilities often have other underlying conditions that can make them more vulnerable. Dan has quite robust health but other people with disabilities at Yellow Bridge and in the community are more vulnerable, so Dan is vaccinated not just to protect himself, but more importantly, to protect others. Many of those for whom we care, whether disabled, terminally ill, or elderly, are vulnerable, even when they are fully vaccinated because their immune systems are already compromised. One of the best ways you can support carers and the vulnerable is to be vaccinated. While it is not a %100 guarantee, it does reduce the risk to our loved ones.

At the beginning of the Corona Virus Pandemic it was frequently announced that “We are in this together.” We are still all in this together because life is lived in community. One day the pandemic will be in the past, but we will still be living life together and facing together other challenges that will come our way. Becoming a carer is one challenge that all of us may find ourselves facing at any time, but it is up to all of us to care for, protect and support each other.