20 October 2017
National Carers Week—an opportunity to recognise and celebrate the outstanding contribution of Australia’s 2.7 million unpaid carers, who so often go unthanked. Carer Muriel Rogers shares her story.
For five years, my husband Ken had been battling with cancer. Following a brain tumour, meningitis, and finally mouth cancer, 18 months ago I took on the dual roles of carer and spouse.
I think that we were fortunate that Ken experienced a gradual decline. Unlike other relationships which may feel that a caring role is suddenly thrust upon them, Ken and I had plenty of time to prepare and adjust. We made a series of small changes so that our lives adapted, and crossed each hurdle as we got to it. Like my husband says, you’ve just got to go with the flow.
There are challenges and rewards that come with it. Particularly from a social standpoint, we’ve noticed the increased isolation. People tend to avoid us at gatherings for fear of saying the wrong thing. It’s a shame because we’re quite happy to answer questions if people are curious, and it’s an opportunity for people to educate themselves. Despite its prevalence, cancer is still a topic that is tip-toed around.
But from other perspectives, some of our negatives have been flipped on their heads. Ken has to be PEG fed, and we were anxious about how this would be interpreted by the grandkids. Much to our delight, even the youngest at just six years old wanted to help feed Pa through the tube, and it has brought us closer together.
Cancer Council SA social workers Joanna Lill and Michelle Ruchin, who work at Cancer Council Lodge—Flinders and Cancer Council Lodge—Greenhill respectively, provide psychosocial support for carers as well as those diagnosed with cancer.
One of the biggest challenges that we see carers face is dealing with the change in their relationship with the person they’re caring for. Particularly when it impacts one of the most fundamental relationships in their life, such as a parent or a spouse, it’s a lot to take in. The most important thing is to normalise talking about these scenarios. Commonly carers will elect to bring in certain external services, such as showering, to allow them to take a step back and focus on holding onto those more familiar relationships.
Between both Lodges, we have alternating weekly carers’ groups. Caring can be quite isolating, with the role often taking precedence over other relationships, and so having this peer support is so important. Our role is to facilitate the group dynamic, but it’s really about everyone having a safe space to talk about their frustrations, their challenges, and offer each other practical support from a place of shared experience. We really want carers to know that it’s okay to say that it’s hard, and it’s okay to be angry at cancer.
Caring for someone is a 24-hour responsibility, but that doesn’t mean that you can’t take care of yourself too. So often we will see carers who feel that they can’t take a break, or they experience guilt if they do. In truth, no one benefits if a carer burns out or wears themselves down, so self-care is a crucial part of a successful long-term care relationship.
Carers can get in touch with our range of support services via 13 11 20—or drop in to our weekly carers’ groups if they’re staying at the Lodges—to talk through their experience and learn practical some self-care tips.
A cancer diagnosis can have a widespread impact, which is why Cancer Council SA has a number of support services available to everyone impacted by cancer—whether you’ve been diagnosed yourself, or are a family member, loved one, or carer. This year, 6,470 people have received cancer-related information and support from a Cancer Council SA nurse on 13 11 20, 1,802 people have received free counselling sessions, and 30,522 nights of subsidised accommodation were provided to 8,979 guests at Cancer Council SA Lodges.