Most people with cancer have a partner, family member or close friend who help them with their needs. Informal caregivers represent a large and growing group who play an important role in providing care to people in need. They are vital for the wellbeing of a cancer patient providing assistance in managing medications, symptom management, personal care, social and emotional support and transportation.
While caregivers provide important practical and emotional support for people living with cancer, many receive limited support themselves. Providing care can have a negative impact on carers’ health, and experiences such as fatigue, exhaustion, loneliness, anxiety, and financial hardship. While at times caregiving can be a rewarding experience, it is common for carers to feel a range of emotions, with some describing it as an emotional rollercoaster.
In Australia, rural and regional populations are more likely to experience disadvantage when faced with a cancer diagnosis. Geographical isolation, greater distance to healthcare services, limited transportation options, all contribute to poorer rural cancer outcomes. Carers in rural and regional areas experience greater isolation and fewer supports than carers in major urban centres.
Based on research*, Cancer Council in collaboration with Swinburne University of Technology and Peter MacCallum Cancer Centre have developed a series of videos to offer support and information for those who are caring for someone with cancer. Carers in these videos are from regional and metropolitan areas in Victoria, speaking about their personal experiences of providing care for a loved one with cancer, from diagnosis to bereavement. In these videos, carers talk about what hurdles they faced, what they learnt along the way, and what advice they would offer to other carers.
A series of healthcare professional videos were also developed, allowing cancer care specialists to provide practical tips, guidance and advice to carers.
We are extremely grateful to all of the carers and healthcare professionals for their valuable contributions to this research project.
Videos from carers
When cancer first came into our lives
When you hear a loved one has been diagnosed with cancer a rush of different emotions wash over you. Shock, anxiousness and loneliness are all common experiences. Cancer can impact many areas of your life, but there’s support out there for you.
Getting through treatment
Receiving a cancer diagnosis can be overwhelming. It can help to ask questions, share your worries and thoughts with professionals, and to talk things through and reach out to those close to you. Nobody has all the answers, but sharing experiences can help
Preparing for treatment
Every cancer treatment experience is different. Finding a balance can be challenging, but it’s important to ensure you’re taking time to look after yourself. Keeping a medication or treatment journal, setting alarms and reminders for medication times, and looking to those around you for support are all great tips to help stay on top of treatments.
Caring for yourself
A diagnosis does not define a life. While every cancer experience is different, it’s important to try and take time for yourself and the things you enjoy doing. Find a schedule or routine that maintains as much ‘normalcy’ as possible and don’t be afraid to accept help from those around you.
Impact of caring on your relationship
Experiences of care-giving can vary. Sometimes care-giving can lead to changes in relationships and the roles within families, and loss of independence can take an emotional toll. However, for some it may also bring relationships closer together.
Caring is about support. Ensuring some ‘normalcy’ for both you and the person you’re caring for can be helpful. Accepting change, support and information can allow you to enjoy the simple things when possible, benefiting you and all those around you.
Some carers may manage finances for the person they’re caring for, but this doesn’t mean taking on the costs themselves. Discuss finances early on with the person you’re caring for and make a plan for how things will be paid. Check if you qualify for support through your employer or local council, and ask healthcare professionals about financial assistance where possible.
Information for carers
Talking to other carers and seeking support from a Social Worker can help provide useful tips and information for you as a carer and support you to navigate your day-to-day tasks. It’s also important to take time for yourself and seek wellness services and support where you can.
The importance of support
While being a carer is about support, finding support for yourself is just as important. Seek and accept help from your community, share your thoughts and feelings with those close to you and reach out to local cancer support groups where you can. While every carer’s experience is different, you’re not in it alone.
Understanding your loved one
Open communication, asking frequent questions and listening to your loved one can positively impact how you and the person you are caring for feel. Being unwell can be confronting, so understanding the person you’re caring for and how you can best support them can be helpful for you both
Bereavement – Leanne’s story
Leanne shares her story and tips from caring for her mother.
Bereavement – Robert's story
Robert shares his story and advice from caring for his partner.
Bereavement – Elle’s story
Elle shares her story caring for her father and sister.
Diagnosis of a loved one with cancer
A cancer diagnosis is life-changing and can be an overwhelming and difficult time. Take the time to listen, be present and gather as much information as you can. Use information from trusted sources and talk to your healthcare professionals about what resources are available. Through it all, remember that your well-being is just as important as the person you’re caring for.
Going through treatment for cancer
The treatment phase can be difficult for both the patient and the caregiver and feelings of helplessness are common. Ask your loved one how you can support them and establish open and clear communication. Be an advocate for them and voice any concerns or questions to healthcare professionals where you can, as well as seeking out support groups. Try and enjoy your regular activities & routine where possible.
Empowering yourself in your role as a caregiver
Listening, understanding what the person you are caring for really wants, and being an advocate are all ways to empower yourself as a caregiver. Talk to other carers and support groups and don’t be afraid to ask questions. Knowing what you can and can’t achieve as a caregiver will also help provide a sense of empowerment through your experience.
Managing wellbeing and mental health
As a carer, it’s important to spend time reflecting on your own health and wellbeing. Taking downtime for yourself and accepting support when it’s offered can help you to manage your own wellbeing.
Dealing with end-of-life care
The hardest part of end-of-life care can be accepting that survival is no longer likely, but this can also open up an honest conversation with your loved one about what they want and how they are feeling. Understanding your loved one’s preferences around end-of-life and seeking support from your palliative care team and GP can help during this time. Most importantly, enjoy the time you have together and seek out any support you may need.
Dealing with the death of your loved one from cancer
Moving forward doesn’t mean forgetting. Letting go and re-adjusting feels different for everyone and takes time. Continue to seek support from your community palliative care team, but most importantly be kind to yourself.
Continuing your life after losing a loved one to cancer
Transitioning out of care-giving can be difficult. Allow yourself to feel. Feelings of sadness, anger and guilt are all normal. Try to get out, talk to people and engage in activities that bring you enjoyment.
Financial support and government benefits
As a carer you do not need it do it alone. Ask about financial assistance and resources, connect with organisations and professionals who can assist you, and reach out when you need help. Most importantly, accept help when it’s offered.
This project was made possible through a Cancer Australia Supporting people with cancer Grant Initiative, funded by the Australian Government.
Perera, S, O’Callaghan, C, Ugalde, A, Santin, O, Beer, C, Prue, G, Lane, K, Hanna, G, Schofield, P, (2021) Codesigning a supportive online resource for Australian cancer carers: a thematic analysis of informal carers' and healthcare professionals' perspectives about carers' responsibilities and content needs