Caring for Someone with Cancer - Easy Read
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You are a carer, or caregiver, if you provide ongoing unpaid care and support to a person who needs this assistance because of a disease such as cancer, a disability, mental illness or because they are ageing. 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.
Becoming a carer can be sudden or it may be a gradual process. You may provide care for a short time or over months or years. Care may be needed for a few hours a week or on a 24-hour basis, and the level of care you provide may change over time.
Carers in Australia
About 11% of Australians are unpaid carers who provide care to someone with a disability or illness. 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 education
- access to appropriate services
- acknowledgement as individuals with their own needs
- recognition as partners with other care providers.
Looking after yourself
You may still be adjusting to the news that someone you know has cancer and that you could become their carer. It’s natural to be worried about the demands that come with a caring role and the impact this might have on your life.
This may be the first time you consider what it means to be a carer. Take your time. If you or your family have any questions, call us on 13 11 20. Join our online discussion forum to connect with others who have a similar experience, or listen to our podcast episodes for carers, family and friends for support.
You may find it helpful to watch our Australian Carers Talk video series, where carers speak about their personal experiences of providing care for a loved one with cancer, from diagnosis to bereavement, including what hurdles they faced, what they learnt along the way, and what advice they would offer to others.
Support services and resources for carers
Legal and financial information
What carers do
Every caring situation is different. What you need to do will vary and will usually change over time. It often involves a wide range of tasks and sometimes means that you need to learn new skills.
- Advocate for the person with cancer
- Work with the health care team
- Monitor and report symptoms and treatment side effects
- Keep records of appointments, test results and treatments
- Navigate the health care system, and Medicare and Centrelink payments
- Manage and give medicines.
- Look after the home, keeping it safe and comfortable
- Manage family responsibilities, such as caring for children or parents
- Provide transport to treatment
- Help with personal care
- Encourage exercise
- Prepare meals
- Do shopping
- Look after pets.
- Help the person see a lawyer to make legal arrangements for the future, such as a will and advance care directive
- Ensure advance care directives are uploaded online and take witnessed copies with you to appointments
- Arrange for the person to get professional advice to help them manage the financial impact of cancer
- Talk about end-of-life plans.
- Offer companionship
- Be an active non-judgemental listener
- Provide encouragement, comfort and understanding
- Arrange professional support if needed
- Keep family and friends up to date
- Negotiate care and responsibilities with others
- Talk about other things aside from cancer.
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.
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 medical file, along with copies of any substitute decision-maker or advance care directive documents.
Making the most of a medical appointment
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 and ask where you can 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.
- 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.
Understanding the MDT
Most cancer treatment centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses, and allied health professionals such as physiotherapists, dietitians, social workers and psychologists. The members of the MDT will work together to manage the care of the person with cancer and recommend the best treatment. They may also refer the person to other specialists.
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.
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, which 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.
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?
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, 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.
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.
Applying for a PBS Safety Net card
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, which is 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.
Monitoring symptoms and side effects
Cancer itself can cause a range of symptoms, and cancer treatments often cause side effects. Some side effects go away quickly or after a few weeks, while others may be permanent. 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.
A person’s body will cope with treatment and recovery in its own way. 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 side effects need to be closely monitored. 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
- 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.
Managing common symptoms and side effects
- 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.
- Listen to our 'Managing Cancer Pain' podcast episode.
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.
- Offer small, simple meals. 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.
- If the person you care for is losing weight or feels too nauseous to eat, talk to their doctor to identify the cause.
- Get support from an accredited practicing dietitian.
- 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.
- Help the person relax to control anxiety that contributes to breathlessness. You can also ask a doctor or GP about seeing a psychologist.
- 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.
- 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. See an exercise physiologist or physiotherapist for 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.
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 care team members who are looking after the person with cancer.
- Use technology such as email, texts, Skype 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 telephone.
- 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.
Carers often provide practical care. This can include preparing meals, doing household chores and providing transport. If the person you care for has difficulty moving around because of the cancer or treatment side effects, you may have to make some changes to the home.
Treatment can weaken the body’s immune system, so it is important to follow good hygiene and food safety practices. You may notice the person you care for is experiencing changes in appetite or difficulties chewing and swallowing. They may feel nauseated, 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. If family and friends offer to help by preparing meals, let them know what type of food to prepare.
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.
Managing the home environment
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. This may include small adjustments such as moving furniture to make access easier, putting handrails on the stairs or putting a chair in the shower.
Talk to the occupational therapist on the treatment team about aids or equipment you can buy or rent. 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. Social work services are also available through Services Australia. If the person you are caring for is 65 or over, contact My Aged Care for an assessment.
Providing personal care
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.
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 on 13 11 20.
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.
Getting advice from a professional can help. You may wish to speak to a:
Financial support for carers
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 answering machine about the situation. 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. 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.
Planning for the future
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.
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.
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.
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.
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 advice.
- Use humour to relieve tension.
Ways to 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.
- 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.
Caring for Someone with Cancer
Download our Caring for Someone with Cancer booklet to learn moreDownload now
Caring for Someone with Cancer (Plain English)
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Expert content reviewers:
Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Mary Bairstow, Senior Social Worker, Cancer Centre, Fiona Stanley Hospital, WA; Anne Booms, Nurse Practitioner – Supportive and Palliative Care, Icon Cancer Centre Midland, WA; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Care, Mercy Hospice, Calvary Mater Newcastle, NSW; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Louise Good, Cancer Nurse Consultant, WA; Verity Jausnik, Senior Policy Officer, Carers Australia; David Larkin, Cancer Supportive Care Manager, Canberra Region Cancer Centre, Canberra Hospital and Health Service, ACT; Kate Martin, Consumer; John McMath, Consumer; Simone Noelker, Physiotherapist and Wellness Centre Coordinator, Ballarat Regional Integrated Cancer Centre, VIC; Tara Redemski, Senior Physiotherapist – Cancer Care, Gold Coast University Hospital, QLD; Dean Rowe, Consumer; Chris Sibthorpe, 13 11 20 Consultant, Cancer Council Queensland.
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The information on this webpage was adapted from Caring for Someone with Cancer - A guide for family and friends who provide care and support (2020 edition). This webpage was last updated in November 2021.