Your role as a carer

As a carer, you’re part of the health care team. Your role is to work with the team to ensure that you understand, and are included in, decisions about the care and treatment of the person you care for. This may sometimes mean speaking on behalf of the person you care for.

Before the visit

• Write a list of the questions you both have so you don’t forget them during the actual appointment.
• Work out your most pressing questions as time may be limited. Ask for a longer appointment if you have a lot of questions.
• Do some research so you can ask informed questions.
• Keep a record of the medicines the person is taking, including any vitamins and complementary therapies. Note the dose and any side effects.
• Check with the receptionist that the health professional has received results for scans, blood tests and other tests.
• Record any recent changes in the person’s condition or symptoms so you can tell the health professional about them.

During the visit

• Take notes or ask the health professional if you can record the discussion (many mobile phones have a recording function).
• Write down any specific instructions.
• Check who to contact if you are worried about any changes and ask for an after-hours number.
• Clarify anything you don’t understand.
• Ask the health professional if they can give you printed material or tell you where to find more information.
• Check what changes in the person’s physical condition you should watch out for and what to do about them.
• Look over the list of questions you brought along to check that they have all been answered.

After the visit

• Review your notes.
• Discuss the visit with the person you are caring for. If you have any questions, call Cancer Council 13 11 20.
• Call the health professional for test results, if appropriate.
• Record the next appointment in a diary or calendar.
• Contact the health professional about changes or side effects.

The MDT is there to support the person with cancer and their carers. Dealing with health professionals can be intimidating, especially if it’s something new for you. You may feel overwhelmed by all the new information or working out who to talk to about different issues. Try keeping a notebook to record which members of the MDT are responsible for what area of care. You might need to make the initial contact with them if it doesn’t happen automatically. Having a key contact person in the MDT, such as a cancer care coordinator, can help you feel more  comfortable.

Health professionals you might see

general practitioner (GP) – assists with treatment decisions and works with specialists to provide ongoing care

surgeon – surgically removes tumours and performs some biopsies; specialist cancer surgeons are called surgical oncologists

medical oncologist – treats cancer with drug therapies such as chemotherapy, targeted therapy and immunotherapy (systemic treatment)

radiation oncologist – treats cancer by prescribing and overseeing a course of radiation therapy

haematologist – diagnoses and treats diseases of the bone marrow, blood and lymphatic system; prescribes chemotherapy and other drug therapies

nurse – administers drugs and provides care, information and support throughout treatment

cancer care coordinator – coordinates care, liaises with other members of the MDT, and supports the family throughout treatment; care may also be coordinated by a clinical nurse consultant (CNC) or clinical nurse specialist (CNS)

dietitian – recommends an eating plan to follow during treatment and recovery

social worker – links people with cancer and carers to support services and helps with emotional, practical or financial issues

counsellor, psychologist, psychiatrist – help people with cancer and their carers and families manage their emotional response during diagnosis and treatment

speech pathologist – helps with communication and swallowing problems

occupational therapist – assists in adapting the living and working environment to help the person with cancer resume their usual activities after treatment

physiotherapist – helps with restoring movement and mobility after treatment and preventing further injury

spiritual care practitioner (pastoral care) – discusses any spiritual matters and search for meaning, if appropriate; may arrange services and other  religious rituals

Many carers talk about how complicated and time-consuming paperwork can be. The social worker at the treatment centre can offer support with this aspect of your role.

The following tips may be helpful:

• Set up a system for organising paperwork to reduce stress. Use a folder, expanding file or filing cabinet to organise bills, receipts and letters from health professionals.
• Keep a record of all treatments and test results, and take it with you to appointments.
• Create an online My Health Record for the person with cancer. The My Health Record means the person’s important health care information is in one place and can be seen by their health professionals with their permission. If the person is not capable of making their own decisions, you can apply to manage their account. You will be known as the authorised representative.
• Download an app from the App Store or Google Play to store medical records on a tablet or smartphone. Some of these apps can be connected to My Health Record.

The person with cancer may be taking non-prescription and prescription medicines. 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 much will the medicines cost?
• How should the drugs be given (e.g. with or without food)?
• Is there anything, such as alcohol or driving, that should be avoided while taking the medicines?
• Do the drugs interact with other drugs or vitamin supplements or any other over-the-counter medicines?
• Are there any possible side effects? What should I do if the person experiences side effects?
• How long will the medicines be needed? Will the dose be reviewed?
• What should I do if a dose is missed?
• When is the use-by date, and where is it on the medicine packaging?
• How should the drugs be stored?

Get help from the pharmacist – The pharmacist can provide a list of all the person’s medicines and when they should be taken, or they can prepare a blister pack (e.g. Webster-pak), which arranges all the doses that need to be taken throughout the week. The pharmacist can also keep prescriptions on file to make it easy to get repeats made up.

Keep a medicines list – A medicines list can help you keep track of any medicines. It can also help health professionals understand which ones are being used, which is especially important in an emergency. You can create your own list or download the MedicineWise app from the App Store or Google Play onto your tablet or smartphone. You scan the barcode on the packaging to add a medicine to the app, record dosages and set reminders for when to give each medicine at the right time.

Visit healthdirect.gov.au/medicines or call Medicines Line on 1300 633 424 to find out more about medicines.

The Australian Government subsidises the cost of many prescription medicines through the Pharmaceutical Benefits Scheme (PBS). Once a certain amount has been spent on medicines during the calendar year (the threshold amount), the person can apply for a PBS Safety Net card.

You can track what the person you are caring for spends on PBS medicines on a Prescription Record Form (available from pharmacists). If they use the same pharmacist, you can ask the pharmacist to keep a computer record instead. Once the threshold amount has been reached, the pharmacist can give the person a Safety Net card and the PBS medicines will then be cheaper or free for the rest of that year. To find out more, call 132 290 or visit Services Australia.

Cancer itself can cause a range of symptoms, and cancer treatments often cause side effects. Some common symptoms and side effects include:

• pain
• nausea, vomiting and loss of appetite
• breathlessness
• fatigue.

Some side effects go away quickly; others can take weeks, months or even years to improve. Some side effects may be permanent. A person’s body will cope with the treatment and recovery in its own way. It is important not to compare the person to others. It’s also important to let the treatment team know of symptoms and side effects – they will often be able to suggest medicines and other treatments that can help.

Some people experience late side effects. These are problems that develop months or years after treatment finishes. They may result from scarring to parts of the body or damage to internal organs. Talk to your doctor about whether the person is at risk of developing late effects from treatment.

The treatment team will let you know the side effects that need to be closely monitored and when you need to contact them. Issues that require urgent medical attention include:

• a temperature of 38°C or above
• chest pain or shortness of breath
• persistent or severe nausea or vomiting
• redness or swelling around the site of an injection
• confusion
• severe headache with a stiff neck
• chills with shaking or shivering
• severe abdominal pain, constipation or diarrhoea
• unusual bleeding (e.g. nose bleeding for over 30 minutes)
• incontinence or trouble passing urine and/or leg weakness
• any serious unexpected side effects or sudden deterioration in the person’s health.

Pain

• Encourage the person to take medicine as prescribed to keep on top of the pain. Contact their treatment team if the pain is hard to manage. It may take time to find the right pain medicine.
• Always talk to the doctor before stopping or changing the dose.
• Use a pain scale or pain diary to help you understand the intensity of the pain and the need for extra doses.
• Try relieving pain and discomfort with hot water bottles or heat packs (check the temperature first), ice packs or gentle massage.
• Understand the different roles of long-acting and short-acting pain medicines and support the person with cancer to use them appropriately.

Download our booklet ‘Understanding Cancer Pain’

Nausea and loss of appetite

• Encourage the person you are caring for to ask their doctor for different anti-nausea medicines until they find one that works well for them.
• Offer the person their favourite or well-tolerated foods often. Most people don’t need a strict diet during cancer treatment, though you should follow the advice of the health professionals.
• Provide nutritious snacks and drinks throughout the day.
• Focus on creating a pleasant atmosphere for meals and sitting together and talking.
• Celebrate the small amounts the person eats rather than how much is not finished.
• Offer small, simple meals.
• If the person you care for is losing weight or feels too nauseous to eat, talk to their doctor to identify the cause. The person may need medicine changes or a review by a dietitian or pharmacist to arrange dietary supplements.
• Find an accredited practicing dietitian at Dietitians Australia.

Breathlessness

• Use a handheld fan to direct a cool stream of air across the person’s face.
• Place a pillow on a table so the person can lean forward with an arm crossed over the pillow – this allows their breathing muscles to relax.
• Maintain a calm atmosphere where possible as anxiety can make breathlessness worse.
• Play a relaxation recording to help the person control anxiety that contributes to breathlessness. Listen to Cancer Council’s Mindful Mediation and Relaxation recordings, these are also available as CDs. Call Cancer Council 13 11 20 to order your free copies. You can also ask a doctor or GP about seeing a psychologist to help manage anxiety.
• Talk to the treatment team about breathing exercises, equipment and treatments to manage breathlessness.
• Set up a recliner chair to help the person sleep in a more upright position

Fatigue

• Help the person to set small, manageable goals for the day, and suggest they take regular breaks before they become too tired.
• Encourage the person to say no to activities they really don’t feel like doing.
• Find ways for the person to do some gentle physical activity every day – research shows that exercise can reduce fatigue. Talk to the treatment team about what sort of exercise would be suitable. This may include walking or strength-training exercises. See an exercise physiologist or physiotherapist for other suggestions.
• Establish a regular bedtime routine and set up a calm sleeping environment. Ensure the room is dark, quiet and a comfortable temperature. Soothing music helps some people drift off.

Treatment can weaken the body’s immune system, so it is important to follow good hygiene and food safety practices. Wash your hands with soap and water before preparing food, and take special care when handling raw meat, fish and chicken.

You may notice the person you care for is experiencing changes in appetite or difficulties chewing and swallowing. They may feel nauseated (with or without vomiting), or they may have mouth or throat sores that make it painful to eat. Cancer treatment can also change the taste and smell of food.

At times, the person may not be able to eat even their favourite foods. While you may want them to eat well during treatment, focusing on their appetite can increase their anxiety, so gentle encouragement is best. Talk to the treatment team if you’re worried about weight loss.

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 and medicines that can help manage side effects such as nausea or sores in the mouth.

Family and friends often offer to help by preparing meals. Let them know what types of food to prepare, and why hygiene and food safety are especially important at this time. Use online tools such as mealtrain.com and candoapp.com.au to help coordinate meal giving.

Download our booklet ‘Nutrition for People Living with Cancer’

Download our fact sheet ‘Understanding Taste and Smell Changes’

If the person you are caring for becomes unwell or frail during treatment, you may need to make some changes to their home to make it safer for them to do everyday activities such as self care and to prevent falls. This may include small adjustments such as moving furniture to make access easier, removing loose rugs and other tripping hazards, putting handrails on the stairs or in the bathroom, or putting a chair in the shower.

Talk to the occupational therapist or physiotherapist on the treatment team about aids or equipment you can buy or rent. For example:

• bed or chairs
• commodes, bedpans and urinals
• bathing equipment
• mobility equipment such as four-wheeled walkers, pick-up frames or walking sticks
• cart with wheels to carry things.

If you need to lift the person you’re caring for, or help them get into or out of bed or a chair, ask a physiotherapist to show you how to do so safely.  They can suggest equipment you can use to make lifting easier.

You can ask family and friends for help with housework or arrange help through community services. This will free up time for you to spend on caring or other responsibilities. Talk to the social worker on the treatment team or get in touch with Cancer Council 13 11 20 to find out how to access this support.

Social work services are also available through Services Australia. If the person you are caring for is 65 or over, visit My Aged Care or call them on 1800 200 422 for an assessment.

A person may need help with bathing, toileting and dressing at various times during and after the course of treatment. There are aids or equipment available to make bathing and going to the toilet easier.

If treatment means the person has trouble with incontinence (accidental loss of urine or faeces), talk to a continence nurse or physiotherapist for exercises to strengthen pelvic floor muscles or about protective bed covers and pads. You can also call the National Continence Helpline on 1800 33 00 66 or visit health.gov.au/health-topics/bladder-and-bowel.

Some carers feel uncomfortable providing personal care themselves, particularly for their parents or adult children. Or the person with cancer may prefer that a professional assists with daily personal tasks. To find out how to arrange visits from care workers to help with these tasks, talk to the social worker on your treatment team or call Cancer Council 13 11 20.

Some people live away from the person with cancer. You may feel guilty for not being closer, and you may feel you are the last one to know about treatment and care.

Living away from the everyday care may give you a different perspective on the situation. In some cases, this could help you solve problems or  coordinate care more effectively. If you want to stay involved, there are many things you can do.

If someone else is the primary carer, ask what you can do to support them.

• Create a local support network. You could start by connecting with relatives and friends who can visit the person regularly. You can also talk to the
  hospital social worker about arranging volunteer and paid care workers, or call Cancer Council 13 11 20 to find out what support is available in the person’s local area.
• Consider using websites such as gathermycrew.org.au to coordinate offers of help.
• Keep an up-to-date contact list of the health care team members who are looking after the person with cancer.
• Use technology to stay in touch. Options to consider include email, blogging, text messaging, Skype, Facebook and video conferencing apps such as Zoom.
• Ask the person if their health professional will allow them to record consultations so you can hear what was discussed, or join the consult by telephone.
• Research telephone (landline and mobile) and internet plans with different providers to reduce costs.
• Set aside money so you are prepared if you have to travel suddenly.
• Create an emergency care plan and give copies to the carer and emergency contacts you have nominated.

Caring for someone with cancer can cause financial concerns. There may be a drop in your household income if you or the person you are caring for needs to reduce work hours or stop working. There may also be new expenses such as transport, medicines, scans and tests. Treatment may mean you need to buy or rent equipment and aids.

You may be able to get government benefits and payments and other financial support to help with these costs. For more information, read the box opposite, speak to a social worker or visit carergateway.gov.au/financial-help.

The government agency Services Australia offers a free, confidential Financial Information Service that provides education and information on financial matters. Call 132 300 to find out more.

Getting advice from a professional can help. Options include:

• Financial planner – help people manage their assets, including superannuation. To find a planner, visit fpa.com.au/find-a-planner.
• Financial counsellor – can help set up a budget and manage debt. The National Debt Helpline can help you find a financial counsellor. Call 1800 007 007 or visit ndh.org.au.

Cancer Council SA may be able to provide some financial assistance and you may be eligible for financial advice through our Legal and Financial Referral Service – call 13 11 20 to find out more.

Finding financial support for carers

Centrelink benefits – Services Australia offers various payments for carers. The Carer Payment is for carers who provide fulltime daily care in the home of the sick person. This payment is income- and asset-tested. The Carer Allowance is for carers who provide extra daily care. There is an income test but no asset test. Visit servicesaustralia.gov.au.

Travel payments – Every state and territory has a government scheme that provides financial help to people who need to travel long distances to access specialist medical treatment that is not available in their local area. Many of these schemes include accommodation. In some cases, financial assistance may also be available if a carer needs to travel with the patient to treatment. Eligibility for these patient assistance travel schemes (PATS)
varies from state to state. Ask your social worker for more details, or call Cancer Council 13 11 20.

Superannuation – You or the person you are caring for may be able to access superannuation early. Keep in mind that accessing this money may have
tax implications and could affect your retirement income and insurance policies.

NDIS – The National Disability Insurance Scheme (NDIS) provides Australians aged under 65 who have a permanent and significant disability with funding for support and services. Call 1800 800 110 or visit ndis.gov.au.

GP management plan – People diagnosed with cancer may be eligible to claim through Medicare for up to five allied health service appointments a year, including with a psychologist, physiotherapist, occupational therapist or dietitian. Ask the GP for more information.

Hardship programs – Most electricity, gas, water or phone providers offer flexible payment options to customers who are having trouble paying their bills. Check whether the person’s providers have hardship programs.

Download our ‘Cancer and Your Finances’ booklet’

A cancer diagnosis can make it difficult to talk about the future, especially if you’re feeling optimistic or are uncertain about the possible outcomes of treatment. It is never too early to think about how you will manage if the situation changes. Knowing plans are in place can help ease worries, give you a sense of control and allow you both to focus more fully on the present.

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, then give them and your doctors a copy of the plan. Let the person you’re caring for know about the alternative arrangements. It is a good idea to carry a carer emergency card in your wallet. This tells people that you are a carer and who to contact in an emergency.

To download a sample emergency care plan and carer emergency card, visit carergateway.gov.au. To get a printed copy of the plan and card, call 1800 422 737.

Advance care planning

It can be a good idea for a person to plan for their future medical treatment and care, and to discuss their preferences and values with family, friends and the health care team. This process is called advance care planning and can involve preparing various legal documents.

As the main carer, you’ll usually be the person family and friends contact for information. You may find keeping others up to date on the condition of the person with cancer time-consuming and tiring. Some carers find it stressful dealing with other people’s reactions to the latest news. It’s also important to ask the person you are caring for how much information they would like you to share.

Ways to keep family and friends up to date include:

• Leave a message on your answering machine. You could say something like: “Bill is doing okay with the chemo. He’s mainly feeling tired. Thanks for your concern.” This will cut down on the time needed to answer or return calls.
• Use technology such as text messages or emails to send group messages. You may want to include a statement such as: “We are not able to reply to everyone individually, but we are reading your messages and appreciate your support.”
• Start an online diary, blog, or Facebook group or other social media group to share news and coordinate offers of help. You can set up a protected online community at gathermycrew.org.au.
• Let family and friends know how you’ll keep them up to date. You may want to ask a family member or friend to update others.
• If you need to explain the situation to children, download our ‘Talking to Kids About Cancer’ booklet.

An important part of the carer’s role can be to provide emotional support to the person with cancer. You might want to talk to them about their cancer diagnosis and treatment, but not know how. 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 become emotional.

It’s likely the person you’re caring for will experience a range of strong emotions. It can help to ask if they would like to talk. Sometimes they might talk openly about how they’re feeling. Or they may prefer not to share their thoughts, and it’s important to respect this. They may also try to hide their feelings because they don’t want to upset you.

It’s natural to have disagreements from time to time, especially when you’re both under stress. Try to understand how a cancer diagnosis can affect how a person feels and behaves. Although dealing with conflict can be hard, it can also bring you closer together and help you understand each other’s point of view.

While you may be the main source of emotional support, you can encourage the person you’re caring for to speak to family members, friends or health professionals who can provide emotional support in different but valuable ways.

Ways to communicate

Be a good listener

• Sit somewhere private where you will not be interrupted.
• Make it clear 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.
• Acknowledge that this is a difficult time. Ask open questions to help you understand how the other person is feeling.
• Avoid interrupting or changing the subject.
• Allow the person to be sad, upset or cry. You don’t have to keep them happy all the time.
• Check your understanding of what they’ve said by repeating information or paraphrasing.
• Wait to be asked before giving advice.
• Use humour to relieve tension.

Resolve conflict

• Let the other person know that you care about them and want to resolve your differences.
• Try to talk through the issues calmly. Hear each other out and work towards a solution, rather than seeing the other person as the problem.
• Compare your expectations. For example, some people with advanced cancer choose to stop having treatment. You may find this hard to accept if you  feel they are giving up and you want them to try other options.
• Choose your battles – it may help to focus your energy on the issues that really matter.
• If a discussion becomes heated, take a break and talk later when you are both calmer.
• Arrange for others to take on the caring role for a short time.
• Ask your GP or treatment team for a referral to a social worker, counsellor or psychologist who can help you manage the conflict.