Caring for someone with cancer

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’

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.

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.

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

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’

This section describes some of the emotions commonly experienced by carers. There is no right or wrong way to feel. Although everyone is different, many carers find it reassuring to know that their feelings are a normal reaction to the demands of the role.

Fear and anxiety

Cancer treatments and outcomes have greatly improved in recent years, but caring for someone with cancer can still be frightening and overwhelming. It’s natural to worry about the treatment, side effects, test results and the long-term outcome, as well as the impact that the diagnosis will have on your family, work and other responsibilities.

Stress

Looking after someone with cancer can be stressful. It’s common for carers to say they feel out of control or under extreme pressure. If stress is ongoing, it can affect the way you react to people around you, and could lead to exhaustion and burnout. Symptoms of stress include:

Physical – trouble sleeping, headaches, tense muscles, high blood pressure, upset stomach, changes in appetite and heart palpitations, as well as feeling generally tired and unwell.

Emotional – feeling overwhelmed or drained, being irritable or moody, feeling agitated, having racing thoughts and losing confidence in yourself.

Anger and frustration

Feeling angry or frustrated can happen for many reasons, including:

• having to be the carer and take on extra responsibilities
• navigating a complex and confusing health care system
• believing that family and friends could do more to help
• having short-term and long-term plans disrupted
• a shift in the nature of your relationship
• not sleeping well
• having little or no time for activities you used to enjoy
• dealing with the emotions of the person with cancer
• trying to juggle caring with other family responsibilities or paid work
• feeling that the person you’re caring for does not seem to really appreciate the hard work and sacrifices you’re making.

Guilt

Guilt is one of the most common emotions that carers experience. Some carers have said they feel guilty about:

• feeling angry and resentful
• taking a break from caring (or even just wanting to)
• being well, while the person they are caring for is sick
• not being able to make the person better (even though this is unrealistic)
• saying or doing the wrong thing at the wrong time
• having to care for someone they do not really like
• not doing enough or feeling they aren’t doing a perfect job as a carer.

Loneliness

It is easy to become isolated or feel lonely as a carer. You may feel too busy or guilty to socialise or maintain contact with friends and family. People may visit you less often because they think you have too much to do or they don’t know what to say. Or they may not be able to visit because of COVID-19. Some people are uncomfortable being around someone who is ill. Maybe you did a lot of activities with the person who has cancer and you miss this special time. Even if you have many people to support you, you can still feel alone and isolated. You may feel that no-one quite understands what you are going through. This is a common reaction. Joining a support group may help.

Depression

Feeling down or sad after someone you love is diagnosed with cancer is common. It’s a natural response to loss and disappointment, and usually lasts a short time without severely affecting your life.

If you have continued feelings of sadness for several weeks, have trouble getting up in the morning, and have lost interest and pleasure in activities you used to enjoy, you may be experiencing depression. Research shows that depression is common among carers. There are  a number of ways to manage depression. Talk to your health care team about your options and visit Beyond Blue for more information.

Loss and grief

Many people associate loss and grief with dying. But feelings of loss and grief can also happen when you are caring for someone diagnosed with cancer. It’s natural to stop enjoying your regular activities or miss activities you can no longer do, such as work, exercise, socialising or volunteering. It is normal to feel grief both for the “normal” you have lost and the need to adjust to a “new normal”.

As a carer, you may feel that your relationship with the person you are caring for has changed. Changes in roles and taking on new responsibilities can cause stress between you and the person you’re caring for.

Finding ways to cope

Caring for someone with cancer is not always easy or satisfying. It may feel hard to find the time or energy to look after your own wellbeing. The simple strategies described below may help you cope and feel more in control.

Clear your mind – Relaxation and meditation techniques can help carers maintain their energy levels and improve their quality of life. Listen to our relaxation and meditation podcast Finding Calm During Cancer. You could also try a local yoga or tai chi class.

Connect with others – You can share your thoughts and experiences with other carers through support groups. This can be by phone, in person or online.

Be kind to yourself – No-one is a “perfect” carer. It is often a demanding role and everyone has bad days. Try to avoid using the words “should” or “must” and accept that you are doing the best you can. Acknowledging the benefits you get from caring may help you feel better.

Seek support – If at any stage you feel overwhelmed, speak to your GP, as counselling or medicine – even for a short time – may help. You may be referred to a psychologist. Beyond Blue has information about coping with depression and anxiety. You can also call Lifeline on 13 11 14 for crisis support at any time of the day or night. Some people find online programs or smartphone apps helpful in managing depression and anxiety.

Draw on spirituality – Some people find meaning and comfort in spiritual practices, such as prayer, meditation or quiet contemplation. It can be challenging when someone you care for is diagnosed with cancer, and it may help to talk about your feelings with a spiritual care practitioner, religious leader or counsellor.

Find out what to expect – It may help to learn more about the cancer and treatment options. Going with the person to medical appointments can give you a better understanding of what to expect and how to plan for any changes.

Deal with uncertainty – When the person you care for is having treatment, life may seem less predictable and it may be hard to plan ahead. Carers often find this uncertainty stressful and feel that their life is in limbo. You may find it easier to cope if you focus on those things you can control right now. Letting go of what you cannot control leaves you with more energy and mental capacity.

Get creative – If you are having trouble expressing how you are feeling, you could try writing a journal or you may prefer to keep an art journal of sketches and notes. Looking back through journal entries can give some perspective – you may see that some days are better than others.

"You don’t know if you’re making the right decisions at the time, but down the track, you can look back and know that you did what you could.” ROSS

It can be difficult to ask for and accept assistance, but if you seem to be coping, others may not realise you need help. Family and friends may be waiting for you to ask because they don’t know how to offer help or fear they will be intruding or disturbing you. Let them know their support is appreciated and that they’re not interfering.

Sharing the caring role – Asking for help is not a sign of failure; it may allow you to spend more time with the person you’re caring for or to take a break. Many carers say they feel  overburdened and resentful. Sharing the caring role with other people can ensure that the person with cancer gets the necessary support they need without overloading you.

How to share tasks – You may want to hold a meeting to work out how everyone can help and then prepare a roster. Or you could share a list of tasks through a website such as Gather My Crew. This lets family and friends know exactly what help you need and when you would like it. It means others don’t have to guess what they can do to help. Tasks that can be done by or shared with others include:

• household chores such as cooking, cleaning, laundry, ironing, shopping, gardening, mowing the lawn or looking after pets
• driving the person with cancer to appointments and/or attending appointments with them
• picking up children from school or other activities
• keeping others updated
• staying with the person you care for while you take a break.

"I decided I had to swim daily. I had a roster of friends who looked after my wife for an hour every morning.” ROB

Respite care lets carers have a break. You may feel you need respite care for a couple of hours, overnight or for several days. You can use respite care for any reason, such as visiting friends or family members, catching up on sleep, or attending an event such as a wedding.

Why – Some carers don’t arrange respite care because they feel guilty or concerned about leaving the person they are caring for. But by taking a break, you will probably find that you can continue your caring role with more energy and enthusiasm. It also gives the person you are caring for an opportunity to interact with other people.

Where – Respite care can sometimes be given at home, or the person you are caring for may be admitted to a respite care centre, residential aged care facility or, in some cases, a hospital or palliative care unit (hospice).

How – It’s a good idea to start looking into respite care before you need it. Talk to your doctor or social worker about what services are available where you live and how you can access them. Carer Gateway provides information on respite options, including emergency respite. For more information, visit the Carer Gateway or call them on 1800 422 737.

Cost – You may have to pay part or all of the cost of respite care. Fees will depend on the care provider, whether the care is subsidised by the government, how long the care is for, and the type of care required.

"The social worker helped my husband and me talk about difficult and confronting issues. The respite care was also a welcome relief and helped me remain strong.” JANINE

Many carers also work. Your caring duties and your job may both be important and necessary parts of your life. But it may be difficult to balance the demands of caring, family and work.

Caring can impact your job in various ways. It may affect your work hours, what you can  achieve at work, how much time off you need, your concentration, and your emotional and physical wellbeing. Your decision to continue working will probably depend on several things, including:

• how unwell the person with cancer is
• what your caring and work duties involve
• your family situation
• the amount of help available from family and friends or respite care
• your finances and whether you need to earn an income
• your leave entitlements
• whether the need for care is likely to be temporary or long term
• what will give you peace of mind.

Before changing your working arrangements, talk with your employer, an Employee Assistance Program (EAP) counsellor, family or friends. You may be able to rearrange your working hours, take carer’s leave or make other flexible working arrangements. You can ask the health care team for a letter of support for your workplace. To find out more about working while caring, visit the Carer Gateway.

Depending on where you live, Cancer Council may be able to connect you with a human resources (HR) professional or employment lawyer to provide information and advice about how to manage your work and caring responsibilities. Call Cancer Council 13 11 20 to find out more.

Download our ‘Cancer, Work & You’ booklet

Download our ‘Cancer Care and Your Rights’ booklet

Looking after your health can help you cope with the demands of caring, and provide better care for longer. People with cancer often need support for a long time, so it’s important to find ways to support your wellbeing.

Eat healthy meals and snacks – If the person has long treatment sessions or appointments, or is in hospital, you may need to bring healthy foods and drinks from home. Avoid snacks that are high in added fats, sugars and salt, such as chips, biscuits and chocolate.

Stay in touch with friends and family – Maintaining relationships can help you feel connected to others, reduce stress and provide an opportunity to talk about topics aside from your role as a carer.

Be active for 30 minutes each day – Research shows that regular physical activity can help with feelings of anger, stress, anxiety and depression. It can also help boost your energy levels and improve sleep. If you can leave the house, a walk, run or swim may help. A stationary exercise bike, a yoga/meditation mat or an online program can allow you to exercise at home. Doing any physical activity is better than none. Even a brisk walk around the block offers benefits.

Organise your time – Use your phone or a diary to help you keep track of appointments, and prioritise your tasks and activities.

Get enough sleep and rest – Tiredness and exhaustion often make everything seem harder. If your sleep is disrupted by your caring responsibilities, try to grab a few minutes’ rest  throughout the day whenever the opportunity comes up

Have regular check-ups – It’s important to maintain regular visits to your GP, dentist, optometrist and other health professionals. See your GP if you notice changes in your sleep patterns, weight or mood. Take part in any cancer screening programs you’re eligible for.

Take time for yourself – Make time each day to do a hobby or activity that you find enjoyable and relaxing. Respite care is available for short or longer periods and may give you the break you need. Don’t underestimate the emotional impact of supporting someone through cancer – you need to look after your own health if you’re going to give support.

Avoid using alcohol, cigarettes or vapes to relax – These may seem to help for a short time,  but they contribute to other problems. If you smoke or vape, call the Quitline on 13 7848 for advice and support tailored to your situation. Talk to your GP if you need support managing your anxiety.

Many people find it challenging when the need for care finishes. You could feel a bit lost or no longer needed. If the person has recovered, they may appear to have forgotten how much you did. This can be hurtful, but they probably don’t realise how you’re feeling.

How the person may feel – You may be surprised that the person who had cancer does not  seem happy or relieved that they have been given good news. The end of treatment can be a difficult time emotionally, and cancer survivors sometimes experience depression as they adjust to the “new normal”. It is important to communicate openly about how you are both feeling.

Take the time you need – You may expect that you’ll slip back into day-to-day life as it was before you took on the caring role, but this may not be straightforward. You might feel you are still waiting for the next setback. Your life may also have changed. Going back to work or resuming other responsibilities can be overwhelming. Do things at your own pace and give yourself time to adjust. You might be able to return to work part time or take on fewer responsibilities.

Share your feelings – Talking about your feelings with someone you trust can help. Studies  show that caring often brings changes in life philosophy and relationships, and personal growth. Many people find these changes rewarding, but it’s not always positive. You may need time to reflect on what has happened and what it has meant to you.

If the person you are caring for has been diagnosed with advanced cancer, the caring role may be different. See the Caring for someone with advanced cancer section.

Caring for someone with cancer can affect relationships in many ways:

• you might have to take on new responsibilities that mean you reverse your usual roles
• the person you are caring for may feel like they have lost their independence or that you are being overprotective
• you might be worried about talking about your needs when the other person is going through cancer treatment
• you may avoid sharing your feelings because you don’t want to overwhelm the other person when they have enough to worry about
• you might need to re-evaluate your priorities and set new goals
• you might feel lonely if friends and family aren’t as supportive as you would like
• you may feel too tired to socialise or enjoy your usual activities.

Ways to manage changes

• Talk about the changes to avoid misunderstandings. Discuss ways to meet each other’s needs.
• Allow time to get used to the changes, particularly if roles have reversed.
• Set boundaries to maintain independence and allow both of you to feel in control.
• Give the person you’re caring for the chance to do things for themselves.
• If you and the person you’re caring for find it difficult to discuss your different needs without becoming defensive, consider seeing a social worker, counsellor or psychologist. They can suggest ways to approach these conversations.
• Contact a local community group or carers’ support group, visit our Online Community, listen to our ‘Family Dynamics and Cancer’ podcast episode or call Cancer Council 13 11 20.

If you are caring for a partner, you may find your sexual relationship is affected. The changes will differ depending on the type of cancer, the treatment and its side effects.

Having cancer can affect physical intimacy in different ways:

• Tiredness can make people lose interest in sexual activities during and after treatment. This is called a lowered libido.
• Cancer treatments, medicines and pain can also reduce libido and may affect someone’s physical ability to have sex.
• A person’s body image may change during and after treatment, making them feel self-conscious and embarrassed.
• The person with cancer may be feeling sensitive and sore, and may not want to be touched.
• The emotional strain of cancer or caring may preoccupy you and cause you to lose interest in sex.
• Many people worry that physical intimacy might be painful.
• You might find it hard to switch between the roles of carer and lover.
• You might feel guilty if your partner is unable or unwilling to be sexually active and you still want a sexual relationship.

How to manage sexual changes

• Talk openly with your partner about how you’re feeling – communication is an important sexual tool. Sharing your concerns will help you explore new ways to be intimate.
• Being open about your sexual needs can help you find ways to manage them. If you keep quiet and withdraw, your partner may misinterpret your actions and think they’re no longer desirable.
• Try other forms of intimacy such as touching, holding, hugging and massaging. Physical contact that doesn’t lead to sexual activity can still be comforting.
• Spend time together doing other things you both enjoy. This way sex isn’t the only way that you show your affection and intimacy.
• Tell your partner you care. Your partner may need reassurance that you love them and find them attractive despite the changes from their illness.
• Have your partner show you any body changes before sexual activity. Looking at and touching these areas may help both of you get more comfortable with the changes.
• Keep an open mind about ways to give and receive sexual pleasure, especially if your usual sexual activities are now uncomfortable or not possible. Try different lubricants or sexual aids.
• Take things slowly and  spend time getting used to being naked together again.
• Be patient. You may find that any awkwardness will improve with time and practice.
• Talk to a counsellor who specialises in helping couples with intimacy and sexual issues. An
  occupational therapist on the treatment team can suggest practical strategies for positioning and fatigue management.

Download our ‘Sexuality, Intimacy and Cancer’ booklet

Listen to our ‘Sex and Cancer’ podcast episode

Although all carers have the same rights, regardless of sexuality or gender, LGBTQI+ carers may face specific challenges. They may worry about health professionals or the person’s family or friends accepting them, or wonder if support services are LGBTQI+ friendly. Talk to your GP about local services that can help. You can also contact Qlife, a national counselling and referral service for LGBTQI people. Visit at Qlife or call them on 1800 184 527.

Download our booklet ‘LGBTQI+ People and Cancer’ 

Some people’s cancer may be at a late stage when they are first diagnosed. For others, the cancer may have spread or come back (recurred) after treatment. Advanced cancer means the cancer is unlikely to be cured, but it can often be controlled for months or, sometimes, years.

Changes to the caring role

Some people live with advanced cancer as a chronic illness for a long time, so there may not be much difference in your caring role immediately. Other people may feel very unwell, so your responsibilities as a carer are likely to increase and may become more complex almost overnight. This may give you little time to adjust to the new situation.

How you might feel – Caring for someone with advanced cancer can feel overwhelming. You may be trying to support the person, while coming to terms with the diagnosis yourself. You may be experiencing a range of strong emotions such as denial, fear, anger, sadness and grief. A diagnosis of advanced cancer also means living with uncertainty about what lies ahead, and this can be challenging.

Family and friends – As well as having to manage your own emotions, you may also have to tell other family members and friends. This can be time-consuming and difficult, and their reactions may add to your distress. Use text messages, email, blogs or social media, or write one letter and send copies to people. If you need support, talk to your GP or a hospital social worker, or call Cancer Council 13 11 20.

After a diagnosis of advanced cancer, some people want to know how long they have left to live. Others prefer not to know. It’s a very personal decision.

If the person you are caring for prefers not to know, you may still want some idea of what to expect. This can help you understand what is happening and prepare for the changes. You can ask the person if they will give their treatment team permission to speak to you alone.

The health professionals may give you a general idea of the person’s life expectancy. This is known as the prognosis and it is likely to sound a bit vague.

They will probably talk about the time in terms of days, days to weeks, weeks to months, or months to years. The actual time could be shorter or longer, because each individual responds differently to treatment.

What palliative care is – Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as comfortably as possible. The goal of palliative care is to improve quality of life for both the person with cancer, and their family and carers.

Palliative care doesn’t mean giving up hope. It is not just for end-of-life care – it may be beneficial for people at any stage of advanced cancer.

Palliative care services – The palliative care team will help identify services that can offer emotional and practical support to you in your caring role. These may include:

• relief of the person’s symptoms (e.g. pain, breathlessness, nausea)
• help organising equipment for home (e.g. mobility aids, special beds)
• help with discussions about sensitive issues and suitable care options
• links to other services such as home help and financial support
• support for people to meet cultural obligations
• counselling, grief and bereavement support
• support for emotional, social and spiritual concerns
• referrals to respite care services.

If the person chooses not to have active treatment for the cancer, palliative care can help ensure any symptoms are well controlled and the person is comfortable. The palliative care team can help you understand what is happening and what happens next.

"Our cancer care team talked about how palliative care could make my husband’s life easier and more meaningful. I found it so useful to know that help was available when I needed it.” ANNA

How palliative care works

When to start – Palliative care is useful at all stages of advanced cancer and can be given alongside active treatment for cancer. Connecting with the palliative care team early on can help improve quality of life.

Who provides care – Palliative care may be led by a GP, nurse practitioner or community nurse or, if the person’s needs are complex, by a specialist palliative care team.

Where care is provided – The palliative care team will work with you and the person you are caring for to plan the best place for care. This may be at home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (hospice).

Your role – Carers are considered part of the palliative care team. With the agreement of the person being cared for, the palliative care team will include you in decisions about their care and treatment.

Accepting help – If you have been providing most of the person’s care, it can be difficult to let other people take over some tasks. As the caring demands are likely to keep increasing as the cancer progresses, accepting help can mean you can spend more quality time with the person you’re caring for.

Although carers may need support at any stage of cancer, their responsibilities usually increase if the disease progresses. Below are some common issues you may face as you care for someone with advanced cancer, the people who can help and where you can find more information. Your hospital or treatment centre may also host workshops or discussions about cancer, treatments and side effects.

Support with medical care

Making treatment decisions – It can be confronting for the person to work out whether to keep having treatment for the cancer. This decision is theirs alone, but they are likely to discuss it with you. If you are the person’s substitute decision-maker, you may feel a heavy responsibility when making this decision for them. Who can help? palliative care team; cancer specialists; GP; social worker.

Managing symptoms – You may find that symptoms such as pain become more complex to manage, especially as the person is likely to experience several symptoms at the same time. Early medical attention can provide relief and make symptoms easier to manage. Who can help? palliative care specialist; pain specialist; cancer specialists; GP; community nurse; physiotherapist; occupational therapist; exercise physiologist; after hours GP.

Practical support

Setting up the home – To make it easier and safer to care for someone at home, you may need to make some changes (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower chair, bedpans, walker, hoists to help lift the person, hospital bed). Talk to your health care team to see if there is any financial support you may be able to get for home modifications.  Who can help? occupational therapist; physiotherapist; Home Modification Information Clearinghouse.

Preparing food and drink – It can be challenging to prepare food and drink for a person with advanced cancer, especially if they find it hard to swallow or have lost their appetite. Try not to force them to eat or drink. In the late stages, it is natural to have little appetite, but this can be distressing for carers. Who can help? dietitian; speech pathologist.

Providing personal care – You may have to: help the person get in and out of bed, shower or wash their hair; give them a sponge bath; help them on and off the toilet or commode; help them use a urine bottle or bedpan; and help them to wipe themselves. Ask an occupational therapist or physiotherapist about suitable equipment and how to support the person’s movement safely and correctly. You may need someone else to help you. Who can help? occupational therapist; physiotherapist; palliative care team; community care workers; Carer Gateway 1800 422 737;
My Aged Care 1800 200 422.

Coping with the extra workload – You may find it difficult to manage extra tasks, especially if you have other responsibilities such as a job or looking after children, or if you have your own health issues. Talk with family and friends about ways they can help. Who can I help?
Carer Gateway 1800 422 737; My Aged Care 1800 200 422; social worker.

Emotional support

Dealing with emotions – A diagnosis of advanced cancer can be distressing for all involved,  and it is common to experience grief, anxiety and depression. Seek professional help if these emotions are making it hard for you to function or enjoy some aspects of life. Who can help? GP or palliative care team; social worker; psychologist, counsellor or psychiatrist; support groups; Cancer Council
13 11 20; Carer Gateway Counselling Service 1800 422 737; Beyond Blue 1300 22 4636;
Lifeline 13 11 14; church or religious group.

Communicating with family and friends – The carer is often the main point of contact for family and friends. It can be challenging to cope with people’s reactions when you are struggling with your own. Giving constant updates as the disease progresses can also be draining and time-consuming. It is important to make sure children in your family are included and supported in discussions about advanced cancer and end-of-life issues. Who can help?  social worker; Cancer Council 13 11 20; family members or friends who can share updates; social media apps to connect with family and friends.

Maintaining hope – The carer can have an important role in helping the person with cancer maintain hope. As the disease progresses, the things the person hopes for may change. For example, they may hope to visit special places or spend time with family and friends. Who can help? social worker; psychologist or counsellor; spiritual care practitioner (pastoral carer); religious leader; family and friends.

Exploring the meaning of the person’s life – This may be a time when the person wants to reflect on their life and make sense of their experience. They may appreciate help recording their memories and insights in some way. Some people also want to explore spirituality, even if they have never been religious. Who can help? social worker; psychologist or counsellor (ask the treatment team or GP for a referral); spiritual care practitioner (pastoral carer, may be available at your treatment centre); religious leader.

Support with legal and financial matters

Organising finances – You may need to find additional financial support and possibly help the person you are caring for access their superannuation and insurance. Seek professional advice before changing any financial arrangements. Who can help? social worker; financial counsellor or financial adviser; National Debt Helpline 1800 007 007; Services Australia  Financial Information Service 132 300; Cancer Council 13 11 20.

Making legal arrangements – If the person hasn’t already done so, it is important to make  sure their wishes for the future have been documented. This can include preparing a will, appointing a substitute decision-maker and preparing an advance care directive. Who can help? social worker; National Advance Care Planning Support Service 1300 208 582; lawyer (contact your state or territory Law Society); Community Legal Centres; Cancer Council 13 11 20.

Advance care planning is when a person thinks about their future health care and discusses  their preferences with their carer, family, friends and health care team. This may take several discussions and can involve:

• talking with the person with cancer about what is important to them for quality of life and  what matters most when making treatment decisions
• discussing the treatments the person with cancer may or may not want
• preparing legal documents, including appointing a substitute decision-maker and making an advance care directive.

Studies show that families of people who have done advance care planning feel less anxiety  and stress when asked to make important health decisions for others.

Starting the conversation – Although advance care planning is often done when people are first diagnosed with cancer, it can be started at any time, whether the person is healthy or ill. Discussing the person’s wishes does not mean they have given up hope or will die soon – their needs may change over time and it is a good idea to regularly review the plan.

If you need some tips on starting the conversation, you might like to use one of Palliative Care Australia’s discussion starters or Advance Care Planning Australia’s conversation starters.

How you might feel – It can be confronting as a carer if the person you are caring for decides they do not want any more treatment for the cancer. On the other hand, you may worry about the impact on their quality of life if they decide to keep pursuing treatment, even if it may not benefit them. You may find it helpful to talk to the palliative care team about how you are feeling.

Different laws

Each state and territory has different laws about what capacity means, making advance care directives and appointing substitute decision-makers. To find out more, talk to a lawyer, visit Advance Care Planning Australia or call them on 1300 208 582.

When preparing legal documents, it is important to seek legal advice. Cancer Council may be able to connect the person you are caring for with a lawyer. Call 13 11 20 to find out more.

Download our fact sheet ‘Getting your affairs in order’

If the person hasn’t already done so, now is a good time to appoint a substitute decision-maker, make an advance care directive and prepare a will. These legal documents ensure that the person’s wishes are recorded.

For these documents to be legally binding, the person needs to have decision-making capacity at the time of making the document. In general, this means the person can understand and remember information about the available choices, understand the consequences of their decisions, and communicate their decisions. For more information, talk to your lawyer and doctor, or visit End of Life Law in Australia.

Appointing a substitute decision-maker

The person with cancer can appoint someone to make medical decisions on their behalf if they become too unwell (lose capacity) to make their own decisions. This person is called a substitute decision-maker, and they may be a person’s spouse or family member, or someone else the person trusts. Depending on your state or territory, the documents used to appoint a substitute decision-maker may be called by different names, such as enduring power of attorney or appointment of enduring guardian. If the person has not appointed a substitute decision-maker, the law in each state or territory outlines who may make medical treatment decisions on their behalf. This is usually someone close to them, such as a spouse or partner, family member or close friend. If you are unsure if you have the right to make treatment decisions on the person’s behalf, talk to the treatment team or a lawyer.

Making an advance care directive

An advance care directive is a written record of a person’s values and preferences for any future medical care. It is ideal if the advance care directive can be as detailed as possible so that their preferences are clear. An advance care directive is legally binding and can be used by doctors, family members and carers to guide their decision-making. Depending on where you live, the advance care directive may be called an advance health directive, advance personal plan or similar.

Once the document has been signed, dated and witnessed, the person you are caring for may ask you to share copies with the substitute decision-maker (if that is not you) and the treatment team, so it can be placed on their medical record. A copy can also be saved to the person’s My Health Record. You may also want to take witnessed copies with you to appointments.

Preparing a will

A will is a legal document that sets out what a person wants to happen to their assets after they die. These assets, called an estate, may include a house, land, savings or investments. A will can also record the person’s wishes regarding who will look after their children (guardianship).

Many people want to make a will or update the one they have as their situation changes. Some carers choose to make or update their own will at the same time as the person with advanced cancer. This can help to make it feel like a normal, everyday process.

Making a will is not difficult, but it needs to be prepared and written in the right way to be legally valid. It is best to ask a lawyer to advise you or contact the Public Trustee in your state or territory.

Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor.

At the time of the last review of this information (November 2023), VAD laws have commenced operation in all states of Australia. VAD remains illegal in the Australian Capital Territory and Northern Territory, although the laws are under review. For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia website.

VAD may be an option for some people who meet all the strict conditions and follow certain steps as required by the laws in their state.

“Voluntary” means that it is the choice of the unwell person to end their life. You cannot ask for VAD on their behalf or pressure them to ask for it; only they can ask for it and they must have decision-making capacity.

You may have a range of emotional responses if the person you are caring for chooses to investigate VAD. You may find it confronting if they choose to proceed with VAD, and it is important that you look after your own emotional wellbeing.

The person may also ask you to be present when they end their life, and it is important to think about how you might feel. It is your choice whether to be involved in the VAD process. You may find it helpful to get support from your GP or a counsellor.

For more details, visit the Health Department website in your state.

It can be confronting to talk about death and dying, but it is important to discuss the options for where the person may want to die and to understand their wishes. As the carer, your wishes also need to be considered. Talking about the options early, while the person is still well, can help avoid rushed decision-making, distress, and regrets or feelings of guilt later.

Many people say that they would like to die at home. Carers may want to respect the person’s wishes, but may feel worried because they don’t know what to expect. Although dying is a natural process, few people have experience or knowledge of looking after someone who is dying.

Dying at home is possible with planning and support. Finding out more about the support available from the palliative care team and other services may help you feel more comfortable. It can be helpful to have a backup plan ready in case the person’s medical needs increase and they need to move to a palliative care unit or hospital near the end.

Not everyone wants to die at home, and some people change their minds as their illness progresses or their medical needs increase. People may choose to receive end-of-life care in a hospital, palliative care unit (hospice) or residential aged care facility. Some carers feel guilty about handing over the everyday care to others, but it can allow you to spend more time just being together. If you wish, you can assist the staff with physical tasks.

Download our ‘Facing End of Life’ booklet

If an illness is ongoing or causing uncomfortable symptoms, some people may become distressed. This may be because they feel particularly ill, or scared or guilty about the strain they are putting on others. Some people become distressed because symptoms such as pain, nausea or breathlessness are not well controlled. Others may experience emotional distress, anxiety or depression. If the person you are caring for is becoming distressed, encourage them to discuss how they’re feeling with a doctor or counsellor.

Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to the health care team about any emotional or physical symptoms that are causing the person with cancer distress, and find ways to make their final days more comfortable.

If you urgently need somebody to talk to because the person you are caring for is in emotional distress, call Lifeline on 13 11 14 at any time.

A life-limiting illness offers you the opportunity to say goodbye. You can encourage the person with advanced cancer to share their feelings, and you can share your own in return. It is understandable that you might not know what to say or worry about saying the wrong thing.  Ask the person if they would like to talk about how they are feeling. This can give you an idea of whether they are ready to talk about the situation – they may be avoiding the topic for fear of upsetting you.

Some people who are dying refuse to acknowledge it or may seem to be in denial. This may be the way they cope with the unknown or it might be because they prefer to focus on the present moment. If you find their response upsetting, it may help to share how you feel with a social worker on the treatment team or call Cancer Council 13 11 20.

You can ask the person with advanced cancer if they want to visit a special place, see particular family or friends, contact someone they’ve lost touch with, or see a spiritual care practitioner. They may also appreciate help creating a legacy, such as documenting their life in some way, creating a memory box of keepsakes, or writing letters to family and friends. You can help the person with all these tasks. They are all part of the process of saying goodbye, for all of you.

The person with advanced cancer may find comfort in planning their own funeral so that family and friends don’t have to guess what they would have wanted. If you find it confronting to be involved in the planning, family and friends may be able to help or talk to a spiritual care practitioner, funeral celebrant or end-of-life doula for assistance.

"I would find myself rehearsing the eulogy in the shower and then feel guilty. Talking to others at my support group helped me realise my thinking was normal.” JULIE

Some carers experience anticipatory or pre-loss grief. This is the grief you feel when you are expecting the death of someone close to you.

You may also feel anticipatory grief if the person you are caring for undergoes a change such as long periods of confusion or reduced consciousness. Although they are still physically present, you may feel as though you have somehow already lost the person that you love. This form of grief is a natural reaction to a very difficult situation.

You may feel sad, down and depressed or become anxious and concerned for your family member or friend. Or you may find yourself preparing for the loss and beginning to think about what life might be like once they are gone. It is common to have thoughts such as: “How will it be when they are not here? How will I cope on my own?” This doesn’t mean you are a bad or uncaring person. These responses and thoughts are natural.

There is also the grief for a life not led, and the loss of the future you may have imagined or hoped for with that person, and that things have not worked out as you had planned.

The response you have when someone dies is called grief. Coping with grief doesn’t mean getting over the person’s death. It’s about finding ways to live with the loss. The sorrow may never go away completely, but most people gradually adapt.

Even when a death is expected, it may still feel like a great shock, and it doesn’t necessarily make the loss of the person easier to cope with once they have died. Sometimes the experience of anticipating the death and spending a lot of time caring for the person strengthens your relationship with the person, which can also increase your grief.

After the person dies, you may feel a range of emotions, including:

• numbness and shock, or a sense of disbelief, even if you thought you were prepared for the loss
• sadness
• anger towards the doctors or the hospital, your god or the person who died
• relief that the person is no longer in pain
• guilt that you feel relieved to be free of the burden of caring and can now make plans for your future
• pride in how you supported someone as they were dying
• questioning whether there were things that you or the treatment team could have done differently to prolong life or make things better for the person
• regret about things you did or didn’t do, about not being there at the time of death, or about how you are feeling
• anxiety about the future – what you will do or how you will manage.

All these reactions are common. These emotions may come and go and change over time. Be kind to yourself. You do not need to rush to make decisions about your life.

There is no right or wrong way to grieve and everyone mourns in their own way. If your grief seems overwhelming, you can reach out to your GP, a bereavement counsellor on the palliative care team, or call Cancer Council 13 11 20. Support groups or bereavement counselling can help you get through tough times.

"At times the sadness and pain I feel is all consuming and hard to  bear, while at other times these feelings are just in the background of my day-to-day activities.” ANNE

Download our ‘Facing End of Life’ booklet

Download our ‘Understanding Grief’ booklet