Your role as a carer

What carers do

Although every caring situation is different, the range of tasks involved can be grouped into 4 general areas. There may be other tasks involved depending on what the person you are caring for wants help with.

Medical care – attend medical appointments and treatment sessions; advocate for the person with cancer; help the person deal with symptoms, prescriptions and medicines; look after
paperwork on their behalf.

Practical support – provide transport to medical appointments; prepare meals; do shopping; look after the home; care for children, parents and pets; help with personal care (showering, dressing and toileting); arrange for aids and mobility equipment.

Emotional support – offer companionship and be a good listener; provide encouragement, comfort and understanding; arrange professional support if needed; talk about things other than cancer; keep family and friends updated.

Legal and financial matters – pay bills; investigate sources of financial support; arrange professional legal and financial advice; help the person plan for the future; help organise legal documents; talk about end-of-life plans and wishes.

For information about your rights as a carer:

Download our booklet ‘Cancer Care and Your Rights’

Download our booklet ‘Cancer, Work and You’

Providing medical care

Carers often help with medical care. Medical care should be based around the needs, preferences and values of the person with cancer, as well as your needs as the carer.

Talking to the health care team

As a carer, you are part of the health care team. One of your key roles is to help the person you care for communicate with their health care team and make decisions about their care. At times, you may also need to speak on behalf of the patient, if that is what the person you care for would like. The person you are caring for must give written consent before the health care team can talk with you about their care when they are not present. This consent should be included in their medical record.

Most cancer centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses and other health professionals. The MDT is there to support the person with cancer and their carers.

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 to answer your questions, such as a cancer care coordinator, can help you feel more comfortable.

Dealing with health professionals can be intimidating, especially if this is new for you. You may feel overwhelmed by all the new information or working out who to talk to about different issues. Having a regular general practitioner (GP) can help you and the person you are caring for find a way through the health care system and be a source of support.

Making the most of a medical appointment

Before the visit

• Ask the person if they want you to go to the appointment with them.
• Write a list of questions so you don’t both forget them during the appointment.
• Work out the most important questions to ask first, as time may be limited. Ask for a longer appointment if you have a lot of questions.
• Keep a record of all medicines the person is taking, including any vitamins, over-the-counter medicines and complementary therapies. Take it with you to the appointment to discuss with the health professional.
• Check with the receptionist that the health professional has received any test results. Ask for copies so you can take them to other appointments.
• Write down any recent changes in the person’s condition or symptoms so you can discuss these with the health professional.

During the visit

• Take notes or ask if you can record the discussion on your phone.
• Check anything you don’t understand. Write down any specific instructions.
• Check what changes you should watch out for and what to do if they happen.
• Ask who to contact about any changes or treatment side effects, including an after-hours contact number.
• Ask the health professional if they can give you printed material or tell you where to find more information.
• Look over your list of questions to check that they have all been answered.
• Ask about follow-up plans, test results, appointments and referrals.

After the visit

• Review your notes and discuss the visit with the person you are caring for. If you have any questions, call Cancer Council 13 11 20.
• Follow up about test results as agreed at the appointment.
• Record the next appointment in your phone or a diary.

Health professionals you may see

GP – assists with referrals and treatment decisions, and works in partnership with specialists to provide ongoing care

surgeon – surgically removes tumours and performs some biopsies; specialist cancer surgeons may be 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 or nurse practitioner – administers drugs and provides care, information and support throughout treatment; a nurse practitioner works in an advanced nursing role and may prescribe some medicines and tests

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

community nurse – visits you at home to supervise medical treatment, assesses your needs for supportive care, and liaises with your GP and MDT as required

dietitian – helps with nutrition concerns and recommends changes to diet during treatment  and recovery

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

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

speech pathologist – evaluates and treats communication, voice and swallowing difficulties during and after treatment

physiotherapist, exercise physiologist – helps with restoring movement and mobility during and after treatment, returning to daily activities, and improving fitness and wellbeing

occupational therapist – helps people with cancer, their carers and families, manage everyday activities during and after treatment by suggesting ways to adapt the living and working environment with aids, equipment or strategies

spiritual care – discusses spiritual matters and search for meaning, if appropriate; may arrange prayer services and other religious rituals

palliative care team – specialist doctors and nurses who work closely with the GP and cancer team to help control symptoms and maintain quality of life

Monitoring symptoms and side effects

Cancer itself can cause a range of symptoms, and cancer treatments often cause side effects. Some common symptoms and side effects include pain; fatigue; breathlessness; nausea and loss of appetite.

Carers often help the person they are caring for manage these issues. You can also call Cancer Council 13 11 20 to find out more about these and other common side effects experienced by people with cancer.

How long side effects last – 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 you are caring for to others. It’s also important to let the treatment team know about any symptoms or side effects – they will often be able to suggest medicines and other treatments that may help.

Late side effects – These are problems that develop months or years after treatment finishes. Talk to the person’s doctor about whether they are at risk of developing late side effects from treatment and the symptoms to watch out for. Ask the treatment team for a survivorship care plan to help guide you both through follow-up care.

Some cancer treatments increase the risk of getting an infection. If the person you are caring for has low immunity, you may need to ask family and friends with a cold, COVID-19, the flu or other contagious infections not to visit while they have symptoms.

When to see a doctor – The treatment team will let you both know of any side effects that need to be closely monitored and when to contact them. Issues that require urgent medical attention include:

• a temperature of 38°C or above
• chest pain or breathlessness
• severe nausea or vomiting that lasts more than a few hours
• redness or swelling around the site of an injection or wound
• confusion
• severe headache with a stiff neck
• chills with shaking or shivering
• severe abdominal (belly) pain, constipation or diarrhoea
• unusual bleeding or bruising, such as heavy nosebleeds, blood in the urine (wee) or black faeces (poo)
• not being able to control the bladder (incontinence) or having trouble passing urine and/or leg weakness
• burning or stinging feeling when urinating (weeing)
• rash or skin lesions
• any serious unexpected side effects or if the person suddenly gets a lot sicker.

Managing common symptoms and side effects

Pain 

• Support the person with cancer to use pain medicines appropriately. Immediate release medicines work quickly but for a few hours. Slow release medicines provide pain control for a longer period of time, often 12–24 hours.
• If the pain is hard to manage, when you give pain medicine keep a record of the dose and time so you can discuss this with the treatment team. 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 and the person you are caring for understand how strong the pain is and the need for extra doses of pain medicine.
• Try hot water bottles or heat packs (check the temperature first), ice packs or gentle massage to relieve pain and discomfort.
• Complementary therapies such as massage or meditation may help.

Download our booklet ‘Understanding Cancer Pain’

Listen to our podcast episode ‘Managing Cancer Pain’

Fatigue

• Help the person to set small, manageable goals for the day. Suggest they take regular breaks before they become too tired.
• Encourage the person to prioritise activities that they enjoy.
• 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 a physiotherapist for other suggestions.
• Help them set up a calm sleeping environment. Ensure the room is dark, quiet and a comfortable temperature. Soothing music or relaxation tracks help some people sleep.
• Investigate services that can help with household chores, cooking or gardening.

Download our fact sheet ‘Understanding Fatigue and Cancer’

Breathlessness

• Use a handheld fan to direct a 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.
• Set up a recliner chair to help the person sleep in a more upright position.
• Offer regular drinks throughout the day. Dehydration can contribute to breathlessness.
• Talk to the treatment team about breathing exercises, equipment and ways to manage breathlessness.
• Maintain a calm atmosphere, when possible, as anxiety can make breathlessness worse.
• Ask a doctor or GP about seeing a psychologist to help manage anxiety.
• Encourage them to try relaxation and meditation techniques to help reduce anxiety.

Listen to our podcast ‘Finding Calm During Cancer’

Nausea and loss of appetite

• Focus on creating a pleasant atmosphere for meals, sitting together and talking.
• Celebrate how much the person eats rather than comment on how much is not finished.
• 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 meal 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.
• Offer small meals or snacks every 2–3 hours during the day.
• Provide regular drinks to help the person avoid becoming dehydrated.
• If the person you care for is losing weight or feels too nauseated to eat, talk to their doctor. The person may need medicine changes or a review by a dietitian or pharmacist to arrange dietary supplements.

Download our booklet ‘Nutrition for People Living with Cancer’

Listen to our podcast episode ‘Appetite Loss and Nausea’

Managing medicines safely

The person with cancer may be taking several different medicines throughout the day. These may be non-prescription and/or prescription medicines. It is common for carers to provide help with medicines.

It is important to use medicines safely. Knowing the answers to the following questions can help save time and confusion. Ask the doctor or pharmacist:

• What is the name of each medicine and what is it for?
• How much should be given (the dose) and when?
• How should each medicine be given (e.g. with or without food)?
• Is there anything, such as alcohol or driving, that should be avoided while taking the medicine?
• Does the medicine interact with other prescription or over-the-counter medicines, vitamin supplements or complementary therapies?
• Are there any possible side effects?
• What should I do if the person has side effects?
• How long will the medicine 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 medicine be stored?
• What should I do with any unused medicine?

Let the person’s health care team know about any side effects. They may be able to adjust the dose or change the medicine.

I was actively involved with helping Mum use the oxygen machine, administering the liquid morphine for her when she was in pain, and making sure that she took the anti-anxiety medication.” LIBBY

Ways to manage medicines

It can be hard to remember what medicines you need to give to the person you are caring for. There are different ways to help ensure you give the correct dose at the right time.

Keep a medicines list – A medicines list can help you keep track of the person’s medicines, what each one is for and when it should be given. It can also help health professionals understand which ones are being used, which is important in an emergency. You can:

• create your own list on paper or online
• ask their doctor or pharmacist for a list
• download the MedicineWise app onto your tablet or smartphone to create a medicines list and set medicine reminders.

Get help from the pharmacist – The pharmacist can prepare a blister pack (e.g. Webster-pak), which arranges all the doses that need to be taken throughout the week. They may also sell containers you can use to organise pills by the day and time they should be taken. The pharmacist can keep prescriptions on file to make it easy to get repeats made up. As well as paper prescriptions, doctors can provide electronic prescriptions. If the person has a lot of electronic prescriptions, talk to the pharmacist about registering for an Active Script List –  visit digitalhealth.gov.au to learn more.

Track prescriptions – When you fill the last repeat of a prescription, make a note to see the person’s doctor for another prescription. This helps ensure you don’t run out of medicines, particularly after-hours.

Visit healthdirect to find information about specific medicines or call them on 1300 633 424 to talk to a pharmacist.

Organising paperwork

Many carers talk about how complicated and time-consuming paperwork can be. A social worker at the treatment centre can offer support with this part of your role. The following tips may also help:

• 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.
• Consider helping the person with cancer set up an online My Health Record. This stores their important health care information in one place and they can give permission for their health professionals to see it. If the person is not capable of making their own decisions, you may be able to apply to manage their account as the authorised representative.
• Consider using an app to store medical records on a smartphone or tablet. The Australian Government’s my health app can be connected to My Health Record.

Providing practical support

Carers often provide practical care. This can include cooking, doing household chores, driving the person to medical appointments, making the house safe, and helping with personal care.

But remember you don’t have to do it all – there are many support services that can help. The availability and wait times for services may vary depending on where you live, and some services will be free but others might have a cost. Talk to the treatment team about what support services are available or see below. You can also talk to family and friends about ways they can help.

Finding services that can help

• Carer Gateway provides information on local support services for carers and other support that may suit your needs – you can also call them on 1800 422 737.
• Your local council or social worker can put you in touch with services for help at home (such as house cleaning, meals or shopping).
• Get in touch with Cancer Council 13 11 20 or talk to the treatment team to find out how to get support.
• Social work services are also available through Services Australia.
• If the person you are caring for is 65 or over (50 and over for Aboriginal and Torres Strait
  Islander peoples), contact My Aged Care for an assessment or call them on 1800 200 422.

Preparing meals

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. If you are feeling unwell, ask a family member or friend to prepare meals instead.

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, focusing on their appetite can increase their anxiety, so gentle  encouragement is best.

Nausea and poor appetite can last for several months after treatment ends. Talk to the treatment team if you’re worried about weight loss. 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 may offer to prepare meals. Let them know what types of food to prepare, and why food safety is especially important now. Use online tools such as Meal Train and Gather My Crew to help coordinate meal giving.

Download our booklet ‘Nutrition for People Living with Cancer’

Download our fact sheet ‘Understanding Taste and Smell Changes’

Download our fact sheet ‘Mouth Health and Cancer Treatment’

Managing the home environment

If the person you are caring for becomes unwell or frail, you may need to help them make  changes to their home to make it safer for them to do everyday activities, care for themselves and prevent falls. This may include 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 may need and options to buy or rent. Examples include:

• hospital beds, pressure mattresses or lift chairs
• commodes, over toilet frames, bedpans and urine bottles
• bathing equipment, such as shower chairs or bath boards
• mobility equipment, such as 4-wheeled walkers, pick-up frames or walking sticks
• carts with wheels to carry things.

If the person you’re caring for needs help to get into or out of bed or a chair, ask a  physiotherapist to show you how to do so safely. They can suggest equipment or techniques to help the person move.

You may also have to take on other family responsibilities, or arrange for someone else to take them on. These may include caring for children and parents, housework, gardening, shopping or looking after pets.

Providing personal care

A person may need help with bathing, toileting and dressing while you are caring for them.  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 about exercises the person can use to strengthen pelvic floor muscles or about protective bed covers and pads. You can also visit the Continence Foundation of Australia or call their Helpline on 1800 33 00 66.

Some carers feel uncomfortable providing personal care, particularly for their parents or adult children. The person with cancer may also prefer that a professional helps with these tasks. To find out how to arrange visits from a professional, talk to a social worker on the treatment team or call Cancer Council 13 11 20. You can also review the person’s insurance policies to see if they provide any benefits that may help with home care services.

Often it was the little practical suggestions that were the most helpful – such as getting a foam wedge to help my husband sleep.”
ANNA

Long-distance caring

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 a social worker on the treatment team about arranging volunteer and paid care workers. Call Cancer Council 13 11 20 to find out what support is available in the person’s local area.
• Consider using websites such as Gather My Crew to coordinate offers of help.
• Keep an up-to-date contact list of the health professionals who are looking after the person with cancer.

Providing emotional support

An important part of the carer’s role can be to provide emotional support to the person with cancer. Your presence can help them feel less isolated and lets them know you care.

Sharing how you both feel

You might want to talk to the person about their cancer diagnosis and treatment, but not know how. This may be because you:

• fear saying the wrong thing or don’t want to say something upsetting
• feel you shouldn’t talk about the cancer
• don’t know what to say or how to respond
• 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. Other times 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.

Try not to change the subject if a conversation gets uncomfortable. Instead share how you feel and respect each other’s feelings. It’s natural to have disagreements from time to time,  especially when you’re both under stress. 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 dealing with cancer is difficult. 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 any advice.
• Try to not make comparisons with other people’s situations.
• Use humour to relieve tension, if appropriate.

Resolve conflict

• Let the other person know that you care about them and want to resolve your differences.
• Be honest about what you’re thinking and feeling.
• 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.
• Talk about 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.
• Discuss the situation with your GP or ask for a referral to a social worker, counsellor or
  psychologist who can help you manage the conflict.

Communicating with others

As the main carer, you’ll usually be the person family and friends contact for information. You may find it time-consuming and tiring keeping others up to date on the condition of the person with cancer. 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

• Leave a message on your voicemail giving a quick update. 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.
• Send text messages or emails to groups of people. 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, private Facebook or other social media group to share news and coordinate offers of help. You can set up a protected online group at Gather My Crew.
• Let family and friends know how you’ll keep them up to date. You may want to ask a family member or friend to take responsibility for keeping others up to date and acting as the main point of contact. If not, let people know the best times and days to contact you.
• If you need to explain the situation to children, see our information about talking to kids about cancer.

A lot of the difficulties of communicating with family and friends come about because of uncertainty and feeling uncomfortable.” ROB

Helping with legal and financial matters

Legal and financial challenges can add to the stress of being a carer. Getting professional help can take a great weight off your mind.

Financial concerns

Caring for someone with cancer can cause money worries. 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 medicines, tests, 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, see below, speak to a social worker on the treatment team or call Cancer Council 13 11 20. The person you are caring for may also be eligible for financial support.

Getting help with finances

Services Australia – This government agency offers a free, confidential Financial Information Service that provides information on financial matters. Visit Services Australia or call them
on 132 300.

Qualified professionals – Consider getting professional advice:

• Financial counsellors help people manage their personal budget and finances, including debt. To talk to a financial counsellor, visit the National Debt Helpline or call them on 1800 007 007. This is a free and confidential service.
• Financial advisers (also called financial planners) help people manage their assets and financial affairs, including superannuation. To find a financial adviser, visit moneysmart.gov.au. Financial advisers usually charge fees.

Finding financial support for carers

Centrelink benefits – Services Australia offers various payments. The Carer Payment is for carers who provide full-time daily care in the home of the sick person. The Carer Allowance is for carers who provide extra daily care. Centrelink benefits may be income and asset tested or have other eligibility requirements. For more information, visit Services Australia or phone them on 132 717 or ask a hospital social worker.

Hardship programs – Most utility providers offer payment options to customers who are having trouble paying bills. Credit providers also offer hardship variations to people having difficulty repaying loans and credit cards. For more information, talk to a hospital social worker or speak to a financial counsellor.

Travel payments – Every state and territory has a government scheme that provides financial help to people who need to travel long distances for specialist medical treatment that is not available in their local area. Many schemes also assist with the cost of accommodation. In some cases, financial assistance may also be available if a carer needs to travel with the patient to treatment. The eligibility rules are different for each state and territory. For South Australians, visit the Patient Assistance Transport Scheme (PATS), ask a hospital social worker for more details or call Cancer Council 13 11 20.

Taxi subsidy scheme – Your state or territory may have a scheme that subsidises taxi travel for people with disabilities and their carers. For more information, visit the Carer Gateway.

Superannuation – In very limited circumstances, you may be able to access your superannuation early, such as to pay for a dependant’s medical treatment or due to severe financial hardship. Keep in mind that accessing this money may have tax implications and could affect your retirement income and insurance policies. To find out more, visit the Australian Taxation Office, contact your super fund and seek professional advice.

Cancer Council – Depending on where you live and if you meet the eligibility criteria, Cancer Council may be able to provide some financial support or refer you to a qualified professional for free assistance – call 13 11 20 to find out more.

Download our booklet ‘Cancer and Your Finances’