Caring for Someone with Cancer - Easy Read
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You're a carer if you provide ongoing unpaid care and support to a person who needs help because of an illness, disability or ageing. Becoming a carer can happen without warning or develop over time.
There are many different types of caring situations:
- you may be a partner, family member, child, friend or neighbour
- you might not see yourself as a carer, but as someone simply helping out a person in need
- you may feel that caring is part of your relationship with the person affected, or you may feel pressured to be a carer out of a sense of duty
- care may be needed for a few hours a week or on a 24-hour basis, and this may change over time
- you may provide care for a short time (days to weeks) or long term (months to years).
Carers in Australia
About 12% of Australians provide care to someone with a long-term illness, disability or ageing. This does not include people who are employed to look after someone.
The Carer Recognition Act 2010 (Commonwealth) states that carers should have:
- the same rights as other Australians
- recognition and respect
- support to enjoy good health and social wellbeing
- economic security and the opportunity to do paid work and seek an education
- access to appropriate services
- acknowledgement as individuals with their own needs
- recognition as partners with other care providers.
All state or territory governments have also passed their own Acts and policies to recognise carers.
Support services and resources for carers
- Call your local council, talk to your palliative care team or call Cancer Council 13 11 20
- Carer Gateway
- My Aged Care
- Talk to your palliative care team and/or health fund
Legal and financial information
Palliative and respite care
What carers do
Although every caring situation is different, the range of tasks involved can be grouped into four general areas. There may be other tasks involved depending on what the person you are caring for wants help with.
For information about your rights as a carer, see Cancer care and your rights and Cancer, work and you.
- 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
- 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
- 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
Providing medical care
Carers often help with medical care, which 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 (their written consent is required).
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. Learn more about your health care team.
Try keeping a notebook to record which members of the MDT are responsible for what area of care. 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. 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 the questions you both have so you don’t 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 the 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 the test results as agreed at the appointment.
- Record the next appointment in a diary or calendar.
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.
Some side effects go away quickly; others can take weeks, months or even years to improve. Some side effects may be permanent. It is important not to compare the person you are caring for to others.
Late side effects 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, and see Living well after cancer.
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.
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
- 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
- rash or skin lesions
- any serious unexpected side effects or if the person suddenly gets a lot sicker.
Managing common symptoms and side effects
- 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.
- See Understanding cancer pain and listen to our “Managing Cancer Pain” podcast episode.
- 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 – talk to the treatment team about what sort of exercise would be suitable.
- Help them set up a calm sleeping environment.
- Investigate services that can help with household chores, cooking or gardening.
- See our Understanding fatigue and cancer fact sheet.
- 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 Finding Calm During Cancer podcast.
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.
- See Nutrition and listen to our “Appetite Loss and Nausea” podcast episode.
The person with cancer may be taking several different non-prescription and prescription medicines throughout the day.
It is common for carers to provide help with medicines, and important to use medicines safely. Knowing the answers to the following questions can help save time and confusion:
- What is the names of each medicine and what is it for?
- How much should be given (the dose) and when?
- 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 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 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 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.
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.gov.au/medicines to find information about specific medicines or call 1300 MEDICINE (1300 633 424) to talk to a pharmacist.
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 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.
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. You can also talk to family and friends about ways they can help.
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. Let them know what types of food to prepare, and why food safety is especially important now. Use online tools such as mealtrain.com and gathermycrew.org.au to help coordinate meal giving.
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.
See our Nutrition, Understanding taste and smell changes and Mouth health.
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 (see previous page) 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 call the National Continence 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.
If you live away from the person with cancer and 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.
- Connect with relatives and friends who can visit the person regularly, or talk to the hospital social worker about arranging volunteer and paid care workers.
- Keep an up-to-date contact list of the health professionals who are looking after the person with cancer.
- Use technology such as email, text messages, video calls and social media to stay in touch.
- 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 phone.
- 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.
An important part of the carer’s role can be to provide emotional support. You might want to talk to the person with cancer about their diagnosis and treatment, but not know how.
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.
Try not to change the subject if a conversation gets uncomfortable, and instead share how you feel. 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.
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 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 any advice.
- Try not to make comparisons with other people's situations.
- Use humour to relieve tension, if appropriate.
Ways to 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.
- 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.
Communicating with others
You’ll usually be the person family and friends contact for information. You may find keeping others up-to-date time-consuming, tiring and stressful. Try:
- Leaving a message on your voicemail giving a quick update. This will cut down on the time needed to answer or return calls.
- Using 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'.
- Starting an online diary, blog, social media group or use an online tool to share news and coordinate offers of help.
- Asking a family member or friend to update others, or letting people know the best times of days to contact you. Talking to kids about cancer is also important.
You should also understand how much information the person you are caring for would like you to share, and respect their wishes.
Legal and financial matters
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.
Getting advice from a professional can help. You may wish to speak to a:
Financial support for carers
Planning for the future
A cancer diagnosis can make it difficult to talk about the future. 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.
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. An emergency care plan is a document that provides direction and instructions to allow others to provide the care that you would usually provide.
Caring for Someone with Cancer (Plain English)
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Expert content reviewers:
Dr Alison White, Palliative Medicine Specialist, Royal Perth Hospital, WA; Tracey Bilson, Consumer; Louise Dillon, Consumer; Louise Durham, Nurse Practitioner, Palliative Care Outpatients, Princess Alexandra Hospital, QLD; Katrina Elias, Carers Program, South Western Sydney Local Health District, NSW Health, NSW; Jessica Elliott, Social Worker, Youth Cancer Services, Crown Princess Mary Cancer Centre, Westmead Hospital, NSW; Brendan Myhill, Social Worker and Bereavement Research Officer, Concord Repatriation General Hospital, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Olivia Palac, Acting Assistant Director, Occupational Therapy, Gold Coast University Hospital, QLD; Nicole Rampton, Advanced Occupational Therapist, Cancer Services, Gold Coast University Hospital, QLD; Shirley Roberts, Nurse Consultant, Medical Oncology, Northern Adelaide Cancer Centre, SA; Dr Elysia Thornton-Benko, Specialist General Practitioner, and UNSW Research Fellow, NSW; Kathleen Wilkins, Consumer; Helen Zahra, Carers Program, South Western Sydney Local Health District, NSW Health, NSW
Page last updated:
The information on this webpage was adapted from Caring for Someone with Cancer - A guide for family and friends who provide care and support (2023 edition). This webpage was last updated in December 2023.