Upcoming webinar: Looking after yourself: when supporting someone with cancer
Every caring situation is different. What you are required to do will depend on the needs of the person you are caring for and what you are able to do. The level of care you provide may change over time. This section discusses a range of tasks that may or may not be part of your role as a carer.
Caring can be more than a one-person job. Family and friends are often willing to help, but don’t know how – consider telling them what you need help with. You can also access a range of support services.
The Australian Government has developed the National Carer Recognition Framework to acknowledge the valuable contribution of carers to the Australian community.
The framework is made up of the Carer Recognition Act 2010 (Commonwealth) and the National Carer Strategy 2011 (Commonwealth), and outlines six priorities to ensure that carers have rights and choices. Each state and territory government has also passed their own Acts and policies.
Carers should have:
Most cancer treatment centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses and allied health professionals including physiotherapists and dietitians. MDTs work together closely to manage the care of patients.
The team will discuss the needs of the person with cancer and recommend the best treatment. They may also refer the person to other specialists to ensure all aspects of their care are covered.
As a carer, you’re part of the health care team. You can work with the team to ensure you understand, and are included in, decisions about the care and treatment of the person you care for.
Dealing with health professionals can be intimidating, especially if it’s something new for you. You may feel overwhelmed with all the new and complex information or finding your way around a new clinic or treatment centre. Having one contact person in the multidisciplinary team, such as a cancer care coordinator, can help you feel more comfortable.
The person you are caring for needs to give written consent for the treatment team to talk with you about their care. This consent and your contact details should be formally recorded in their case file.
A cancer diagnosis and treatment often means many medical appointments. Before visiting the doctor, take some time to prepare for the appointment.
|General practitioner (GP)||responsible for general health and coordinates specialist treatment|
|Surgeon||operates to remove tumours|
|Medical oncologist||prescribes and coordinates the course of chemotherapy|
|Radiation oncologist||prescribes and coordinates the course of radiotherapy|
|Haematologist||diagnoses and treats diseases of the bone marrow, blood and lymphatic system|
|Nurses||provide support and help during all stages of treatment and administer chemotherapy|
|Nurse care coordinator
||provides care, information and support throughout treatment
|Palliative care specialist and nurse consultant||responsible for control of symptoms such as pain, nausea, depression and anxiety|
|Pharmacist||responsible for dispensing medication|
|Dietitian||supports and educates patients about nutrition and diet during treatment and recovery|
|Physiotherapist||helps with restoring movement and mobility, and preventing further injury|
||assesses changes needed to your home and recommends equipment|
|Pastoral care worker
||helps provide emotional and spiritual support|
Counsellor, psychologist, social worker
|provide emotional support and new ways to think about your situation and deal with difficulties|
The person with cancer may be taking non-prescription and prescription medications. Knowing the answers to the following questions can help save time and confusion.
The National Prescribing Service (known as NPS MedicineWise) can help you record information about medications in several ways.
Medicines list (paper) – Download from website or order a copy online.
Medicines eList – Create a list online and save as a PDF.
MedicineList+ smartphone app – Scan the barcode on the medicine packaging to add the medicines to the app, and set up personalised dosages and reminders.
Many medicines cost a lot more than the price they’re sold for. The Australian Government helps reduce the cost through the Pharmaceutical Benefits Scheme (PBS) and Safety Net card.
To apply for a PBS Safety Net card, you need to keep a record of what is spent on PBS medicines on a Prescription Record Form (available from pharmacists). If you always use the same pharmacist, you can ask them to keep a computer record instead. Once the threshold is reached, your pharmacist can give you a Safety Net card so your PBS medicines are less expensive or free for the rest of that calendar year. To find out more, call 1800 020 613 or go to pbs.gov.au.
The following strategies can help you work with the person you’re caring for to control their cancer pain:
Carers often provide practical care. This can include doing household chores, preparing meals and providing transport.
If the person you care for has difficulty moving around because of the cancer or its treatment, you may have to make some changes to their home environment.
You may notice the person you care for has appetite changes or difficulties chewing and swallowing. At times, they may not even be able to tolerate their favourite foods.
Treatments such as chemotherapy and radiotherapy can damage and kill cancer cells but also affect healthy cells. This may cause side effects such as:
Nausea and poor appetite can last for several months after treatment ends. A dietitian, doctor or nurse can provide advice on a suitable eating plan. The tips below will also help. For more practical suggestions on eating well during and after cancer treatment, call Cancer Council 13 11 20 or see our nutrition and cancer section.
Caring for someone with cancer can cause financial problems. There may be a drop in your household income if you or the person you are caring for need to reduce work hours or stop working. There may also be new expenses such as transport, medications, scans, tests and equipment.
The Department of Human Services (Centrelink) supports carers financially through various schemes:
For carers who provide full-time daily care in the home of the ill adult or child. This payment is income- and asset-tested.
For carers who provide a significant amount of assistance, either in their own home or in the home of the sick adult or child under 16. The allowance is not means-tested and can be paid even if you are working. A carer who receives the Carer Payment for a child, generally receives Carer Allowance automatically.
A one-off payment to help a family care for a child under 7 years of age who has had a sudden and severe illness. Must also receive Carer Allowance for the child.
An annual lump sum payment made to people receiving the Carer Allowance. An additional payment is made to those who qualify for a carer payment.
The Department of Human Services also offers a free, confidential Financial Information Service that provides education and information on financial issues. You can book a seminar on 136 357 or email firstname.lastname@example.org.
If the person with cancer travels for treatment that isn’t available in their local area, they may be entitled to partial reimbursement of travel costs from their state or territory government. Eligibility for these patient travel assistance schemes varies from state to state. Talk to your social worker or community health centre for more details, or call Cancer Council 13 11 20.
Living away from the person with cancer can be difficult. You may feel guilty for not being closer, and you may feel you are the last one to know about treatment and care. This can be frustrating when you want to stay involved.
However, there are many things you can do. Living away from the everyday care may give you a different perspective on the situation. This may help you solve problems or coordinate care more effectively.
There are several legal steps a person with cancer can take to ensure their wishes and future care plans are known and acted upon. These steps will help ease worry and stress if medical needs change. As a carer, you will need to be aware of these plans as you might be a part of them.
If the person with cancer becomes unable to make their own decisions, the substitute decision-maker will manage their financial and legal affairs while they are alive, and make decisions relating to their health and lifestyle.
This document outlines the plan for future medical care of the person with cancer, taking into consideration their values and beliefs.
This is a legal document that sets out who will receive the assets of the person with cancer after their death.
Contact Cancer Council’s pro bono service on 13 11 20 for assistance with preparing these documents.
Depending on which state or territory you live in, the document used to appoint a substitute decision-maker may have a different name, such as enduring power of attorney, enduring power of guardianship or appointment of enduring guardian.
An Emergency Care Plan is a document that provides direction and instructions to allow others to provide the care that you would usually provide.
Think about the best people to fulfil your carer’s role. Discuss the duties with them and ask for their commitment. Let the person you’re caring for know about the alternative arrangements. The Department of Health website has a sample Emergency Care Plan. Download a copy from health.gov.au or contact the Commonwealth Respite and Carelink Centre on 1800 052 222.
Carers often provide emotional support to the person with cancer. However, some carers find it can be challenging to talk to someone about their cancer diagnosis and treatment. This may be because you:
Not everyone finds talking about what is happening helpful, and it’s important to respect this. If you are caring for your partner, try to find ways to support each other. You can’t change the diagnosis, but listening to each other’s concerns can help.
During your role as a carer, there may be occasions when you don’t agree with the person you are caring for. It’s natural to have disagreements from time to time. Although dealing with conflict can be challenging, it can also bring you closer together and help you understand each other’s point of view.
Many carers say they find it time-consuming and tiring to keep family and friends up to date on the condition of the person with cancer. Some carers also find it stressful dealing with other people’s reactions to the updates.
Reviewed by: Maxine Rosenfield, Counsellor, Private Practice, NSW; Joan Bartlett, Consumer; Julie Butterfield, Consumer; Julie Hill, Telephone Support Group Coordinator, Cancer Council NSW; Anna Lovitt, Senior Social Worker – Oncology, W.P. Holman Clinic, TAS; Carolina Simpson, Policy and Development Officer, Carers NSW; and Helen Tayler, Social Worker/Counsellor, Cancer Counselling Service, Belconnen Community Health Centre, ACT. We would also like to thank the health professionals and consumers who have worked on previous editions of this title.