You may be reading this section because you are caring for someone with advanced cancer. Being a carer can be stressful and cause you much anxiety. Try to look after yourself – give yourself some time out and share your worries and concerns with somebody neutral, such as a counsellor or your doctor.
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. You will need the written consent of the person you are caring for before the team can talk with you about their care. 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 not only for the person with cancer, but also for the family and carers. Carers can sometimes feel they are at risk of losing their identity as partner, child, sibling or friend to their caring role. Accepting help can mean you can spend more quality time with the person you're caring for.
For more information about caring for someone with a life-limiting illness, visit Palliative Care Australia at palliativecare.org.au or see Caring for Someone with Cancer.
There are a range of support services to help you manage throughout the illness and in bereavement. Support services such as Meals on Wheels, home help or visiting nurses can help you in your caring role.
There are also many groups and organisations that can provide you with information and support, such as Carers Australia, the national body representing carers in Australia. Carers Australia works with the Carers Associations in each of the states and territories. Phone 1800 242 636 or visit carersaustralia.com.au for more information and resources.
Caring can be a very difficult role and can challenge your own wellbeing. Respite care (short term care) is available to give you a break. 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).
Respite care can be for a couple of hours, overnight or for several days. You can access respite care for any reason, such as looking after your own health, visiting friends or other family members, or catching up on some much needed sleep at home.
Some carers avoid using respite care because they feel guilty or concerned about leaving the person they are caring for. However, it is important to look after your own health – by taking a break, you will probably find that you can continue your caring role more effectively.
You may be able to access respite care through the Commonwealth Home Support Programme. Start by contacting My Aged Care (visit myagedcare.gov.au or call 1800 200 422) or speak to your doctor or the palliative care team. It's best to make contact early on so you can find out what services are available and how you can access them. You can also contact a Commonwealth Respite and Carelink Centre for information on local carer support services and respite options. Call 1800 052 222 during business hours or call 1800 059 059 for emergency respite support outside business hours.
Some respite care services are subsidised by the government (you may have to contribute to the cost of the care); others are funded privately (you meet the cost yourself). The fees will depend on the care provider, how long the care is for, and the type of care required.
Use the Carer Gateway's " Find a service" search function to locate home help, transport and respite care, as well as counselling and support groups near you.
Counselling and support
Carers often experience a range of conflicting emotions. Talking confidentially with a counsellor or social worker may help you work through your worries and concerns, learn communication strategies, and come to terms with changes in your life. Carers can also be prone to depression and anxiety. If you feel you are getting depressed or overly anxious, talk to your GP or another health professional.
Grief counselling and information
You and your family may be eligible for grief and bereavement counselling provided through the palliative care team. For more information about understanding grief, visit Palliative Care Australia or see Understanding Grief.
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, call 13 11 20.
Carers Australia programs
The National Carer Counselling Program provides short-term counselling. The Carers Associations in each state and territory also run local support groups. For more information, visit carersaustralia.com.au or call 1800 242 636.
Young Carers Respite and Information Services Program
Visit youngcarers.net.au or call 1800 242 636 for age-appropriate information. You can also call 1800 052 222 to find out about respite, practical help and social activities for carers under 25.
"The social worker helped Brian and me talk about difficult and confronting issues, and she helped the children understand what was happening. The respite care was also a welcome relief and helped me remain strong." – Janine
Expert content reviewers:
Dr Jan Maree Davis, Area Director, Palliative Care Services, South Eastern Sydney Local Health District Southern Sector, and Conjoint Lecturer, University of New South Wales, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Julie Butterfield, Consumer; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Amanda Maple, 13 11 20 Consultant, Cancer Council SA; Eileen McNally, Palliative Care Psychosocial Lead, Canberra Hospital, ACT; Patricia Pannell, Clinical Nurse, Central Adelaide Palliative Care Service, SA.