Information for carers

Thursday 1 December, 2016

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On this page: Emotional concerns | Practical concerns | Physical concerns | Isabella's story

Caring for a person with advanced cancer can feel overwhelming at first. The future may be uncertain and you may feel that everything is out of control. You may both be trying to come to terms with the diagnosis and experiencing a range of strong emotions, such as fear, anger, sadness and grief.

Some people live with advanced cancer for years, and their needs will change as the disease progresses. The demands on you as a carer might increase, and will include physical, emotional and financial changes. You may have many questions and concerns – for example, will they be in pain, will they become depressed, or will they die.

As well as having to manage your emotions, you may also have to tell other family and friends. This can be time-consuming and difficult. If you need advice or support, contact your GP, hospital social worker, a palliative care service, a support group, hospital nurses, your oncologist or Cancer Council 13 11 20.

For more information about the practical and emotional aspects of caring, see Caring for Someone with Cancer or call Cancer Council 13 11 20.

"At first, I didn’t ask for help, because I didn’t want to bother anyone. I see caring as my duty; I have to do it. I now realise people genuinely want to help. They need my help to show them how." – Judy

Emotional concerns

Feelings of loss

You may grieve about how things used to be with the person you are caring for, or for your loss of time and ability to enjoy life as you used to. You may be starting to grieve the expected death of the person you are caring for. This is called anticipatory grief. Your emotions can cycle from feeling very caring and protective to feelings of anger and resentment about what you have lost or may lose.

Everyone deals with loss in their own way, but there are ways to feel more in control.

  • Acknowledge your grief. It is alright to cry or feel angry at times.
  • Ask family and friends for practical and emotional support.
  • Call Cancer Council 13 11 20 for information about coping with loss and grief.

Providing ongoing care and support can be challenging, and some carers become depressed. If you find that you are not feeling any pleasure, that you are stressed, irritable or emotional almost all the time, or that you cannot sleep or have lost your appetite, talk to your doctor. You may be referred to counselling or prescribed medicines, if appropriate for your situation.

People with advanced cancer can also become depressed. If you notice any of the symptoms mentioned above, suggest they see a counsellor or doctor. The beyondblue guide for carers includes information for carers of people living with depression.

Managing uncertainty

Many carers, and people with cancer, struggle with uncertainty after the diagnosis. Your plans may change or have to be put on hold if the future is unknown. You may want to delay making any major changes or big decisions for a while. The anxiety will come and go, but it can help to learn ways of dealing with it.

Focus on what you can do

Think about what has helped you cope with previous difficult times.

Read about what to expect

Information can help you understand what to expect, and plan for any changes. This may make you feel more in control.

Speak to your doctor or health professional

If at any stage you feel that you are not coping, they can refer you to a counsellor and prescribe short-term medicine if needed.

Join a support group

Face-to-face, internet and telephone support groups are available. These are groups of people in a similar situation that meet regularly to share their experiences. There are groups for people with cancer and their carer/s or groups just for carers. See details on how to access the different types of support groups.

Try relaxation strategies

Your local community health centre or council may run relaxation, yoga or tai chi classes. Regular exercise, adequate sleep and a healthy diet can also help.

Talking about death and dying

When cancer is advanced, family and friends may wonder if the person will die. This can be a frightening thought, and one that is often mixed with other feelings, such as anger, sadness or guilt.

Although most people are not comfortable talking openly about death and dying, it’s an important topic and an opportunity to discuss practical issues such as place of death. Sometimes, knowing the person’s wishes can help you avoid regret or feelings of guilt later on. Palliative Care Australia’s Dying to Talk discussion starter can help you start a conversation.

Changes to relationships

For many carers, a diagnosis of advanced cancer can affect the established roles within a family, friendship or relationship. These changes may last for only a short time or be longer-lasting.

Cancer can strengthen a relationship or strain it. Try to be open and honest about your concerns. Before beginning a conversation, work out if it is a good time to talk. If you find it difficult to start this discussion or feel the person with cancer is avoiding the conversation, you could suggest you both talk with a counsellor.

You may find yourself thinking about how you will manage if the person with cancer dies. This is natural, but try not to exclude them from everyday events and decisions. If people with cancer are physically able, they often prefer, or even need, to take on daily activities to help maintain their sense of independence. They don’t have to, and often don’t wish to, feel helpless.

How to find a counsellor
  • Ask your GP for a referral to a counsellor, social worker or psychologist. The Better Access initiative allows GPs to refer people to psychologists or social workers for several free sessions. You could also see a private counsellor or psychologist for a fee.
  • Call the National Carer Counselling Program on 1800 242 636. This offers short-term counselling and is run by your local Carers Association. You can also call Cancer Council 13 11 20 – our oncology nurses can put you in touch with a counsellor who has oncology-related experience.

Practical concerns

Work and income

You may need time off work to attend medical appointments or to care for the person with cancer. Explain your situation to your employer. Most employers appreciate honesty and will try to accommodate your needs. Check your entitlements because you may be eligible for time off. Some employers will let you take annual leave, long service leave or leave without pay.

You may be eligible for a carer payment from the government if you provide constant care for the person with cancer (whether or not you work outside the home). To find out more, visit the Department of Human Services website.

Speak to your hospital social worker about other sources of financial assistance. You may be eligible to access Cancer Council’s Legal and Financial Referral Service. Cancer Council also has free resources about your rights in regard to care and work.

Accepting help

Not all your family and friends will know how to respond and provide support – some may not know what to do or even avoid contacting you at first. They may want to avoid thinking about their own death or be afraid of saying the wrong thing, so instead say nothing. This doesn’t necessarily mean family and friends don’t care; they may be having trouble coping with the diagnosis.

The box opposite lists various ways that family, friends, work colleagues and neighbours can help.

Practical ideas for carers
  • Use group text messages, email, and other social media platforms or record a message on an answering machine to let people know what is happening. This avoids having to repeat information.
  • Ask someone to take on the role of information provider. Make sure this person has the latest information.
  • Place a message on the door when it is a good time for visitors.
  • Turn off the phone and have a rest when the person with cancer is resting.
  • Take time out. There will be times when you feel exhausted or overwhelmed. This is normal. Sit outside, or go for a walk or a drive.
  • Chat to people you trust about what is happening. It helps them understand what you are going through and helps you release any concerns or stresses you have.
  • Involve friends and family – try not to do everything yourself. Sometimes people need to be told specifically what they can do, for example, providing a meal or picking up the kids from school.
  • Keep all information about the person you’re caring for in one place. This could include emergency contacts, details of advance care planning documents and a list of medicines.
  • Be realistic about how much you can do, as doing too much may affect how well you cope. Do more of what is important and less of what isn’t.
  • Use Carer Gateway’s ‘Find a service’ search function to locate home help, transport, counselling and support groups near you.
  • Connect with someone who has had a similar experience. Call Cancer Council 13 11 20 for more information.

Physical concerns

Providing physical care is a challenge for many carers. For example, if the person you’re looking after needs help to get out of bed, you will need to learn how to move them safely. Ask the palliative care nurse, doctor or physiotherapist to show you the safest way to do this, as it’s easy to injure your back.

If you need extra help and support providing care, talk to your doctor about services you can access. Home nursing services and a palliative care team can provide professional help at home. The My Aged Care website lists available services and explains how to arrange access. Call 1800 200 422.

You may want to consider accessing respite care to give you a break. This may be for a few hours or days or for longer periods, depending on your needs, the needs of the person with cancer, and what services are available in your area. Respite care can happen in your home or at facilities such as an overnight respite cottage, a day centre or residential care facility. You may be able to access respite through the Commonwealth Home Support Programme. Start by contacting My Aged Care or speak to your doctor.

Isabella’s story

"My husband, Louis, and I were very anxious when he was diagnosed with cancer.

"I took on the tasks at home that Louis was unable to do – such as lawn mowing and feeding the animals. I also arranged appointments and checked details with the treating team. I was grateful I could contact the cancer care coordinator

at the radiotherapy centre when I had questions or when I was finding it difficult to cope.

"I joined a tai chi class organised through the Carers Association and also attended their support workshops and relaxation sessions. I found the encouragement from other carers gave me the confidence boost I needed.

"The support of the hospital social worker was invaluable and reduced many of the day-to-day tasks and concerns I had, and allowed Louis and I to spend more quality time together."

Tell your cancer story.

For more information and insights, listen to The Thing About Advanced Cancer  podcast, produced by Cancer Council and hosted by Julie McCrossin, to help you navigate through these challenging times as a carer. 

Expert content reviewers:

Dr Maria Ftanou, Lead Clinical Psychologist, Peter MacCallum Cancer Centre and Research Fellow, Melbourne School of Population and Global Health, University of Melbourne, VIC; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Alison Hocking, President-Elect, Oncology Social Work Australia, VIC; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Prof Liz Lobb, Professor of Palliative Care (Allied Health), Calvary Health Care, Kogarah, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Hamish Park, Consumer.

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