Support for carers

It can be confronting for the person to work out whether to keep having 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 several symptoms at the same time. Early medical attention can provide relief and make symptoms easier to manage.

Who can help

• palliative care team
• pain specialist
• cancer specialists
• GP
• community nurse
• physiotherapist
• occupational therapist
• exercise physiologist
• after hours GP

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 chair, bedpans, walker, hoists to help lift the person, hospital bed). Talk to your health care team to see if there is any financial support you may be able to get for home modifications. 

Who can help

• occupational therapist
• physiotherapist
• Home Modification Information Clearinghouse

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. Try not to force them to eat or drink. In the late stages, it is natural to have little appetite, but this can be distressing for carers.

Who can help

• dietitian
• speech pathologist

You may have to:

• help the person get in and out of bed
• shower or wash their hair
• give them a sponge bath
• help them on and off the toilet or commode
• help them use a urine bottle or bedpan
• help them to wipe themselves. 

Ask an occupational therapist or physiotherapist about suitable equipment and how to support the person’s movement safely and correctly. You may need someone else to help you.

Who can help

• occupational therapist
• physiotherapist
• palliative care team
• community care workers
• Carer Gateway on 1800 422 737
• My Aged Care on 1800 200 422

You may find it difficult to manage extra tasks, especially if you have other responsibilities such as a job or looking after children, or if you have your own health issues. Talk with family and friends about ways they can help.

Who can help

• Carer Gateway on 1800 422 737
• My Aged Care on 1800 200 422
• social worker

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 for you to function or enjoy some aspects of life.

Who can help

• GP or palliative care team
• social worker
• psychologist, counsellor or psychiatrist
• support groups such as Cancer Council's Online Community
• Cancer Connect on 13 11 20
• Carer Gateway Counselling Service on 1800 422 737
• Beyond Blue on 1300 224 636
• Lifeline on 13 11 14
• church or religious group

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.

It is important to make sure children in your family are included and supported in discussions about advanced cancer and end-of-life issues.

Who can help

• social worker
• Cancer Connect on 13 11 20
• family members or friends who can share updates
• social media apps to connect with family and friends

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)
• religious leader
• family and friends

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 the treatment team or GP for a referral)
• spiritual care practitioner (pastoral carer, may be available at your treatment centre)
• religious leader

You may need to find additional financial support and possibly help the person you are caring for access their superannuation and insurance. Seek professional advice before changing any financial arrangements.

See Helping with legal and financial matters and Cancer and your finances.

Who can help

• social worker
• financial counsellor or financial adviser
• National Debt Helpline on 1800 007 007
• Services Australia Financial Information Service on 132 300
• Cancer Connect on 13 11 20

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.

Who can help

• social worker
• National Advance Care Planning Support Service on 1300 208 582
• lawyer (contact your state or territory law society)
• Community Legal Centres
• Cancer Connect on 13 11 20