Caring for someone with advanced cancer

Caring for someone with advanced cancer can bring a sense of satisfaction, but it can also be challenging and stressful. As a carer your responsibilities usually increase as the disease progresses. Over time, you may need to help more with managing symptoms, providing personal care, preparing food and organising finances.

It’s important to look after your own physical and emotional wellbeing. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your doctor, or call Cancer Connect on 13 11 20. A wide range of support is available to help you with various practical and emotional needs.

Carers as part of the team

Family and carers play a key role in palliative care and are considered part of the team. You can work with the palliative care team to understand, and be included in, decisions about care and treatment. The person you care for must give written consent (permission) for their doctors to talk with you about their care when they are not present. This consent and your contact details should be formally recorded (written) in the person’s medical records case file. Also ask your healthcare team who you can contact in an emergency or after hours.

Palliative care aims to improve quality of life for both the person with cancer, and their family and carers. The palliative care team can suggest services to support you in your caring role. Carers can sometimes feel they are 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 spend more quality time with the person you’re caring for.

Respite (short-term) care

Caring can be demanding and may affect your physical and emotional wellbeing. Respite care lets someone else take over caring for a while, so you can have a break. Some carers feel guilty or worried about leaving the person they are caring for. But by taking a break, you may be able to continue your caring role with more energy and enthusiasm.

You may want respite care for a couple of hours, overnight or several days. You can use respite care for any reason – perhaps to look after your own health, visit friends or family, or catch up on sleep. It can sometimes be given in your home, or the person may go to a respite care centre or residential aged care facility. Hospital and palliative care units (hospices) do not usually take people for respite care.

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.

It’s a good idea to find out about respite services before you actually need them. Talk to your doctor, social worker or the palliative care team about available services and how to access them. The Carer Gateway also has 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 information and to organise respite, call 1800 422 737.

Counselling and support

Carers often feel a range of emotions and it’s normal for these to change often. Talking to a counsellor, psychologist or social worker may help you work through your worries and concerns, learn new ways to communicate, and cope with changes in your life.

Many cancer support groups and cancer education programs are open to carers as well as to people with cancer. Support groups and programs offer the chance to share experiences and ways of coping.

If the person you are caring for is nearing the end of their 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. If you feel you are getting depressed or overly anxious, talk to your GP, another health professional or call Cancer Connect on 13 11 20. You may be eligible for grief and bereavement counselling through the palliative care team. Learn more about the practical, financial and emotional support available.

Palliative care for young people

Palliative care for babies, children and teenagers focuses on maintaining the child’s quality of life by managing their physical, emotional, cultural, social and spiritual needs, and supporting the family.

Palliative care for young people is provided by health professionals who specialise in the care of children (paediatrics), as well as palliative care experts. It considers the young person’s stage of development, their understanding of their illness and their ability to make decisions.

Most children’s hospitals have specialist paediatric palliative care teams. Family are considered part of the palliative care team. Depending on needs and availability, palliative care may be at home, in hospital or in a children’s palliative care unit.

See Seeking support for organisations that specifically support young people with cancer and their families by providing palliative care, financial assistance, counselling, resources and respite care.

The hospital social worker can also provide support and share useful networks in your local community. For more support and information, call Cancer Connect on 13 11 20.