Support for carers
Although carers may need support at any stage of cancer, their responsibilities usually increase if the disease progresses.
Following are common issues you may face as you care for someone with advanced cancer, people who can help and where to find more information.
Learn more about:
- Making treatment decisions
- Managing symptoms
- Setting up the home
- Preparing food and drink
- Providing personal care
- Coping with the increased workload
- Organising finances
- Making legal arrangements
- Dealing with the emotional impact
- Communicating with family and friends
- Exploring the meaning of the person’s life
- Maintaining hope
It can be confronting and confusing for the person to work out whether to keep having active treatment for the cancer. This decision is theirs alone, but they are likely to discuss it with you. If you are the person’s substitute decision-maker, you may feel a heavy responsibility when making this decision for them.
Who can help – Palliative care team, cancer specialists, GP, social worker
You may find that symptoms such as pain become more complex to manage, especially as the person is likely to experience a number of symptoms at the same time. Early medical attention can provide relief and make symptoms easier to manage.
Who can help – Palliative care specialist, palliative care nurse practitioner, pain specialist, cancer specialists, GP, community nurse, physiotherapist, exercise physiologist
Setting up the home
To make it easier and safer to care for someone at home, you may need to make some changes (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bedpans, walker, harness for helping to lift the person, hospital bed).
Who can help – Occupational therapist, physiotherapist
Preparing food and drink
It can be challenging to prepare food and drink for a person with advanced cancer, especially if they find it hard to swallow or have lost their appetite. In the very late stages, it is natural to have little appetite so they shouldn’t be forced to eat or drink, but this can be distressing for carers.
Who can help – dietitian, speech pathologist
What to read – Nutrition and cancer
Providing personal care
If the person becomes weak or unwell, they may need help with showering and toileting. If they are unable to get out of bed, they may need sponge baths and assistance to use a bedpan or urinal bottle.
Who can help – Community care workers, or visit My Aged Care on 1800 200 422
Coping with the increased workload
You may find it difficult to manage the extra tasks, especially if you have other responsibilities such as a job or looking after children, or if you have your own health issues.
You may need to find additional financial support and possibly access superannuation and insurance. Seek professional advice before changing any financial arrangements.
Who can help – Social worker, Cancer Council Financial Referral Service on 13 11 20, financial counsellor, financial adviser
Making legal arrangements
If the person hasn’t already done so, it is important to make sure their wishes for the future have been documented. This can include preparing a will, appointing a substitute decision-maker and preparing an advance care directive.
Dealing with the emotional impact
A diagnosis of advanced cancer can be distressing for all involved, and it is common to experience grief, anxiety and depression. Seek professional help if these emotions are making it hard to function or enjoy some aspects of life.
Communicating with family and friends
The carer is often the main point of contact for family and friends. It can be challenging to cope with people’s reactions when you are struggling with your own. Giving constant updates as the disease progresses can also be draining and time-consuming.
Who can help – Social worker, Cancer Council 13 11 20, particular family members or friends who can relay updates, social networking websites to connect with family and friends online
What to read – Talking to kids about cancer
Exploring the meaning of the person’s life
This may be a time when the person wants to reflect on their life and make sense of their experience. They may appreciate help recording their memories and insights in some way. Some people also want to explore spirituality, even if they have never been religious.
Who can help – Social worker, psychologist or counsellor (ask your treatment team or GP for a referral), spiritual care practitioner (also called a pastoral carer, usually available through your treatment centre), religious leader
What to listen to – Listen to our podcast series for people affected by cancer and advanced cancer
The carer can have an important role in helping the person with cancer maintain hope. As the disease progresses, the things the person hopes for may change. For example, they may hope to visit special places or spend time with family and friends.
Who can help – Social worker, psychologist or counsellor, spiritual care practitioner (pastoral carer), family and friends
What to listen to – Listen to our podcast The Role of Hope and Purpose in Advanced Cancer
Download a PDF booklet on this topic.
Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Mary Bairstow, Senior Social Worker, Cancer Centre, Fiona Stanley Hospital, WA; Anne Booms, Nurse Practitioner – Supportive and Palliative Care, Icon Cancer Centre Midland, WA; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Care, Mercy Hospice, Calvary Mater Newcastle, NSW; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Louise Good, Cancer Nurse Consultant, WA; Verity Jausnik, Senior Policy Officer, Carers Australia; David Larkin, Cancer Supportive Care Manager, Canberra Region Cancer Centre, Canberra Hospital and Health Service, ACT; Kate Martin, Consumer; John McMath, Consumer; Simone Noelker, Physiotherapist and Wellness Centre Coordinator, Ballarat Regional Integrated Cancer Centre, VIC; Tara Redemski, Senior Physiotherapist – Cancer Care, Gold Coast University Hospital, QLD; Dean Rowe, Consumer; Chris Sibthorpe, 13 11 20 Consultant, Cancer Council Queensland.
View the Cancer Council NSW editorial policy.