Seeking support

When you are referred to palliative care or while you are having palliative care, you may have a range of emotions. Many people feel shocked, fearful, sad, anxious or angry. Others feel relief or a sense of inner peace.

Some people have ongoing depression after receiving a diagnosis of advanced cancer. Signs of depression include trouble thinking clearly or losing interest in things you used to enjoy. If you think you may be depressed, it is important to talk to your doctor, as counselling and medicines can help. The organisation beyondblue has information about coping with depression and anxiety. Go to beyondblue or call 1300 22 4636 to order a fact sheet.

You may find that while some people you know are supportive, others may avoid you or not know what to say. This can be difficult, and you could feel lonely, rejected, isolated or upset. At some point, you may need to leave work, hand in your driver’s licence or give up other activities that are important to you. These changes can cause further sadness or stress.

It will probably help to talk about the different feelings you have. Your partner, family members and close friends can be a good source of support, or you might prefer to talk to:

• members of your palliative care or treatment team
• a counsellor, social worker or psychologist
• your religious leader or spiritual adviser
• a telephone support group or peer support program
• Cancer Council 13 11 20.

For many people, an illness can be a financial strain. This may be caused by extra out-of-pocket costs or from loss of income. For example, if you need to stay at home more, household bills may increase, and you may buy more prepackaged meals to save your time and energy for other tasks. You may need to pay for child care, transport, medicines and equipment.

If you live alone and have limited support from family or friends, you may need to pay for private services, such as nursing, cleaning or shopping. Investigate your options ahead of time so you know what assistance is available.

These extra costs can cause you and your family a lot of stress:

• Ask your social worker about any financial or practical assistance available to you or your carer, and apply for it as soon as possible. You may be eligible for assistance from the government, volunteer bodies, church groups or your local council.
• Call the National Debt Helpline on 1800 007 007 for free, confidential and independent financial counselling.
• Your local Cancer Council may be able to organise legal and financial advice. Contact Cancer Council 13 11 20 to find out what services are available in your area and whether you are eligible for this assistance.
• Talk to your superannuation fund about applying for an early release of your superannuation savings on the grounds of severe financial hardship or terminal illness.
• See Cancer Council’s booklet Cancer and Your Finances for more detailed information.

Here are some of the different kinds of government assistance you can access:

• Sickness Allowance − For people who have a job and temporarily cannot work because of an illness. It is income and assets tested.
• Disability Support Pension − For people who are unable to work for two years or more because of a physical, intellectual or psychiatric impairment. It is income and assets tested.
• Carer Allowance − For carers who provide a significant amount of assistance, either in their own home or in the home of the person they are caring for. It is not income and assets tested, so you may be eligible even if you are working or receiving another type of pension. However, both the carer and care recipient have to meet other eligibility requirements.
• Carer Payment − For carers who provide constant care in the home of the person they are caring for. It is income and assets tested.

For more information, call the Department of Human Services (Centrelink) on 132 717, visit humanservices.gov.au or speak to your social worker.

• Equipment and aids – Talk to your palliative care team about equipment and aids that will help you remain independent. Independent Living Centres Australia offers advice on a range of products and services to help with aspects of day-to-day living, including mobility, sleeping, eating and transport (call 1300 885 886).
• Home help and transport – Contact your local council, your palliative care team or Cancer Council 13 11 20 to find out if you can get help with housework, meals or transport.

Here are some other key services that may help:

• My Aged Care – An Australian Government site with information about care options, available services including the Commonwealth Home Support Program, respite care, assessment and eligibility. Call 1800 200 422.
• Carer Gateway – An Australian Government service providing practical information and resources for carers, information about respite care, and links with local support services. Call 1800 422 737.
• Commonwealth Respite and Carelink Centres – Provide free, confidential information about carer respite and other services. Call 1800 052 222 to talk to an adviser.
• Palliative Care Australia – This national peak body and its state and territory member organisations work to raise awareness of palliative and end-of-life care, and to improve the understanding and availability of services across Australia. It also provides information for people living with a life-limiting illness and their families, carersand health professionals. Visit palliativecare.org.au to download resources and find links to state and territory organisations. You can also call the head office on 02 6232 0700.