What carers do

Monday 1 December, 2014

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On this page: Coordinate medical care | Provide practical support | Manage finances | Make legal arrangements | Offer emotional support | Key points


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.

Recognising carers

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:

  • recognition and respect
  • access to appropriate information that makes it easier to get support
  • economic security and the opportunity to participate in paid work
  • access to appropriate services
  • the skills to do their role and the opportunity to participate in formal education and training
  • improved wellbeing and health and the capacity to participate in community life.

Coordinate medical care

Working with the health care team

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.

Preparing for the doctor's appointment
Before the visit
  • Write a list of all the questions you both have so you don’t forget them during the actual appointment. Call Cancer Council 13 11 20 if you need information or help working out the questions to ask.
  • Do some research at the library or on the internet so you can ask informed questions. For suggestions, see about cancer and our checklist of questions.
  • Make a list of all the medications being taken, including complementary therapies. Note the dose and any side effects.
  • Check with the doctor’s receptionist about what you need to bring, e.g. test results, scans, blood tests.
  • Record any recent change in the person’s condition or symptoms.
  • Ask for a longer appointment if you have a lot of questions.
During the visit
  • Take notes or record the discussion with the doctor.
  • Write down any specific instructions.
  • Clarify anything you don’t understand.
  • Ask the doctor if they can give you printed material or tell you where to find further information.
After the visit
  • Review your notes.
  • Record the next appointment in a diary or calendar.
  • Call the doctor for test results, if appropriate.
  • Contact the doctor about changes in the condition or symptoms.
What to think about before visiting the doctor

A cancer diagnosis and treatment often means many medical appointments. Before visiting the doctor, take some time to prepare for the appointment.

  • What do we need to bring?
  • What changes can we expect?
  • Do we need a list of medications?
  • Do we need to ask for a longer appointment?
  • What do we need to ask about?
  • Is there any information we can read?
Health professionals you might see and their roles 
Health professional
Role
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
Occupational therapist
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
Managing medications

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.

  • What are the names of the drugs and what are they for?
  • How much should be given and when?
  • How should the drugs be given (with or without food, etc.)?
  • Is there anything, such as alcohol or driving, that should be avoided while taking the medications?
  • Do the drugs interact with other drugs or vitamin supplements?
  • Are there any possible side effects? What should I do if the person experiences side effects?
  • How long will the medications be needed?
  • What should I do if a dose is missed?
  • When is the use-by date?
  • How should the drugs be stored?
Keeping track of medictions

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.

Applying for a PBS Safety Net card

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.

Managing pain

The following strategies can help you work with the person you’re caring for to control their cancer pain:

  • Use a pain scale to help you understand the intensity of the pain, and the need for extra doses of pain medication.
  • Keep a diary of pain levels and symptoms. Let the health care team know how the medication is working and of any changes.
  • Try relieving pain and discomfort with hot water bottles, ice packs or gentle massage. For more information about massage you can do at home, see Massage and Cancer. To learn more about managing pain, see our overcoming cancer pain section.

Provide practical support

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.

Preparing food and drinks

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:

  • loss of appetite
  • nausea
  • fatigue and tiredness
  • mouth or throat sores
  • taste changes
  • constipation or diarrhoea.

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.

Helping with food
  • Offer the person’s favourite or well-tolerated foods often. You don’t have to follow a strict diet.
  • Try not to worry too much if the person you’re caring for refuses food you have prepared. While you may want them to eat well to stay strong during treatment, the side effects may have changed their taste and appetite.
  • Make meals a time when you can sit together and talk.
  • If the person you care for is losing weight or feels too nauseous to eat, talk to your doctor, dietitian or pharmacist about digestive aids or dietary supplements.
  • Follow good hygiene and food safety practices because treatment can weaken the body’s immune system. Wash your hands before preparing food and take special care when handling raw meat, fish and chicken.
  • Encourage the person you are caring for to ask their doctor for different nausea medications until they find one that works well.
  • Ask others to prepare meals.
Making the home safer
  • Rearrange furniture to make access easier, and remove loose rugs and other tripping hazards.
  • Talk to an occupational therapist about changes you can make or equipment you can hire or buy – for example, putting handrails on the stairs or in the bathroom, or using a chair in the shower.
  • Look after your back if you need to lift the person you’re caring for. Ask a nurse or physiotherapist to show you how to lift safely and about aids you can hire or buy.
  • Use a folder, expanding file or filing cabinet to organise bills, receipts and letters from health professionals. Although it might take a bit of time to set up, carers who have a system for paperwork say it reduces stress.
  • Get help with bathing, toileting and dressing. Some carers feel uncomfortable doing this care themselves, particularly for parents or adult children.
  • Organise help with housework through community services or ask family and friends for assistance.

Manage finances

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.

Financial payments

The Department of Human Services (Centrelink) supports carers financially through various schemes:

Carer Payment (adult and child)

For carers who provide full-time daily care in the home of the ill adult or child. This payment is income- and asset-tested.

Carer Allowance (adult and child)

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.

Carer Adjustment Payment

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.

Carer Supplement

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.

Financial services

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 fis.seminar.bookings@humanservices.gov.au.

Travel payments

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. 

  • Speak to a social worker to find out what you can apply for and how.
  • Visit humanservices.gov.au to check if you’re eligible for the carer payment or allowance.
  • Contact your local Carers Association on 1800 242 636 for help and information on financial assistance.
  • Cancer Council may also be able to provide some financial assistance. Call 13 11 20 for more details, and to request a copy of When cancer changes your financial plans.
  • Seek professional help, e.g. financial counsellor, to set up budgets and manage debt.
  • Find out if you or the person you are caring for are eligible to access superannuation early. Get financial advice as accessing this money may affect your retirement. 
Long-distance caring

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.

  • Create a support network of volunteer and paid care workers, service providers, relatives and friends to visit the person regularly. These people should be reliable in case of an accident or emergency.
  • Write a contact list of the health professionals who are looking after the person with cancer, and keep this list handy in case you need to contact them.
  • Use technology (such as email, blogging, text messaging, Skype, Facebook and video conferencing) to stay in touch.
  • Ask the person if their doctor will allow them to record consultations, so you can hear what was discussed.
  • Look for the best possible telephone (landline and/or mobile) plan to reduce your costs.
  • Create an Emergency Care Plan (see below) and give copies to the nominated carer and emergency contacts.

Make legal arrangements

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.

Appoint a substitute decision-maker

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.

Make an advance care directive (living will)

This document outlines the plan for future medical care of the person with cancer, taking into consideration their values and beliefs.

Prepare a will

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. 

Emergency Care Plan

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. 

Offer emotional support

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:

  • fear saying the wrong thing
  • don’t know what to say or how to respond
  • feel you shouldn’t talk about the cancer
  • don’t want to say something upsetting
  • feel you have to be supportive and strong for the person with cancer, and worry you could break down.

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.

Ways to be a good listener
  • Sit somewhere private where you will not be interrupted.
  • Signal that you are there for as long as needed, e.g. switch off your mobile phone.
  • Maintain eye contact.
  • Listen carefully to what may be behind the words. Try not to think about something else or plan what you will say next.
  • Ask open questions to help you understand how they are feeling.
  • Avoid interrupting or changing the subject.
  • Allow the person to be sad, upset or cry. You don’t have to keep them happy and in good spirits all the time.
  • Check your understanding of what they’ve said by repeating information or paraphrasing.
  • Wait to be asked before giving advice.
  • Respond to humour.
  • Avoid filling the gaps in conversation. Silence can allow you both some time to gather your thoughts.
Ways to resolve conflict
  • Let the person you are caring for know that you care about them and want to resolve your differences.
  • Try to stay calm and talk through the issues involved. Hear each other out and work towards making a decision together. Sometimes people disagree because there has been a misunderstanding.
  • Compare your expectations. For example, some people with advanced cancer choose to stop having treatment. You may find this difficult to accept if you feel they are giving up and you want them to keep trying different options.
  • Choose your battles – it may help to focus your energy on the issues that really matter.
  • Consider taking a break and organising another arrangement for care.
  • Ask your GP or medical team for a referral to a social worker, counsellor or psychologist who can help you resolve the conflict.
Conflict and disagreements

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.

Communicating with family and friends

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.

Tips
  • Explain to family and friends how you’ll keep them up to date. It’s okay to let them know that it is stressful and time-consuming responding to a range of inquiries.
  • Use technology such as group text messages or emails to keep others up to date. You may want to start an online diary, Facebook page or blog to coordinate offers of help.
  • Ask a family member or friend to keep others up to date.
  • Leave a message on your answering machine to cut down on the time needed to answer or return calls. You could say something like: “Bill is doing okay with the chemo. He’s mainly feeling tired. Thanks for your concern.”
  • Read Talking to Kids About Cancer, if children are involved.

Key points

  • Your caring role will depend on the needs of the person you are caring for and what you can do.
  • Carers often liaise with various health professionals. Some carers help the person with cancer prepare for medical appointments.
  • You might need to give medications to the person with cancer. Your doctor or pharmacist can give you advice about managing medications, or you can use a paper-based or electronic medicines list.
  • Preparing food and drinks can be an important part of someone’s care. To find out more call 13 11 20 or see our nutrition and cancer section.
  • You may need to make changes to your home to ensure it’s a safe environment.
  • Create a system to keep track of paperwork such as bills, receipts, test results, reports and letters.
  • You may be eligible for financial assistance through the Department of Human Services (Centrelink).
  • Carers often help manage finances. If you have an enduring power of attorney, you can act on the person’s behalf on all financial matters.
  • Consider using technology, such as blogging or social media, to update friends and family about the condition of the person with cancer. A friend or family member can also help with this.
  • It can be challenging if you don’t live close to the person with cancer, but there are ways that you can provide support from a distance. 

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.

Updated: 01 Dec, 2014