Caring for someone with advanced cancer

Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful.

Carers as part of the team

Family and carers play a key role in palliative care and are considered part of the team. As a carer, you can work with the palliative care team to ensure you understand, and are included in, decisions about the care and treatment of the person you care for. The person you are caring for must give written consent before the palliative care team can talk with you about their care when they are not present. This consent and your contact details should be formally recorded in the individual’s case file.

The goal of palliative care is to improve quality of life for both the person with cancer, and their family and carers. The palliative care team will help identify services that can offer emotional and practical support to you in your caring role. Ask your health care team who to contact in an emergency or after hours.

Carers can sometimes feel they are at risk of losing their identity as partner, child, sibling or friend to their caring role. They may also feel overwhelmed as they juggle work, their family and the person they are caring for. Accepting help from the palliative care team can mean you can spend more quality time with the person you’re caring for.

Where carers can find support

As a carer you may need support at any stage of cancer, but your responsibilities usually increase if the disease progresses. You may need help managing symptoms, providing personal care, preparing food and organising finances.

• Download our Caring for Someone with Cancer, Living with Advanced Cancer and Facing End of Life booklets.
• Find fact sheets and videos for carers on the Palliative Care Australia website. Topics include what is palliative care, managing symptoms, and caring for yourself.
• Find information on home help, transport and respite care, as well as counselling and support groups near you, from Carer Gateway. Call 1800 422 737 or visit carergateway.gov.au.
• Listen to The Thing About Advanced Cancer podcast episodes for carers.
• Call Cancer Council 13 11 20 for more information.

Respite (short-term) care

Caring can be demanding and can affect your own physical and emotional wellbeing. Respite care lets carers have a break. Some carers don’t arrange respite care because they feel guilty or concerned about leaving the person they are caring for. But by taking a break, you will probably find that you can continue your caring role with more energy and enthusiasm.

You may feel you need respite care for a couple of hours, overnight or for several days. You can use respite care for any reason, such as looking after your own health, visiting friends or other family members, or catching up on sleep. It can sometimes be given in your home, or the person you are caring for may be admitted to a respite care centre, residential aged care facility or, in some cases, a hospital or palliative care unit (hospice).

It’s a good idea to start looking into respite services before you actually need them. Talk to your doctor, social worker or the palliative care team about what services are available and how you can access them. Carer Gateway also provides information on local carer support services, respite options and other support that may suit your needs. What respite care is available can vary depending on where you live. For more information and to organise emergency respite, visit carergateway.gov.au or call 1800 422 737.

You may have to pay part or all of the cost of respite care. The fees will depend on the care provider, whether it is subsidised by the government, how long the care is for, and the type of care required.

Counselling and support

Carers often have a range of emotions. Talking to a counsellor or social worker may help you work through your worries and concerns, learn ways to communicate, and cope with changes in your life.

If the person you are caring for is nearing the end of life, the palliative care team can help you understand what is happening and what happens next. This may include discussions about feelings of loss and grief, now and in the future. Some carers may experience depression and/or anxiety (see page 35). If you feel you are getting depressed or overly anxious, talk to your GP or another health professional. For information about practical and financial support.

Carer Gateway – This service can connect you with carer services in your area. You can also talk to the Carer Gateway Counselling Service about your concerns and how you feel about your carer role. Carer Gateway can also put you in touch with other carers in your area or you can join an online carer forum. For more information, call
1800 422 737 or visit carergateway.gov.au.

Grief counselling and information – You and your family may be eligible for grief and bereavement counselling provided through the palliative care team. Visit palliativecare.org.au.

Cancer Council telephone support group – Cancer Council offers a national telephone support group for carers. It runs twice a month. For more information about how you can speak with other people in a carer role or for support in your local community, call 13 11 20.

Young Carers – For age-appropriate information, visit The Young Carers Network. To find respite services for carers under 25, call Carer Gateway on 1800 422 737.