Support for carers

Although carers may have similar responsibilities and need support at any stage of cancer, their workload usually intensifies if the disease progresses. Most people with life-limiting cancer spend almost all their last year at home, and their carers need additional support with many aspects of the role.

Below we outline common issues you may face as you care for someone with advanced cancer, and list who can help and where to find more information.

     – Read Ross’s story

Learn more about:


Listen to podcasts on Cancer Affects the Carer Too and How to Help Someone with Cancer


Making treatment decisions

It can be confronting and confusing for the person to work out whether to keep pursuing active treatments 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 in making this decision for them.

Who can help – Palliative care team, cancer specialists, GP, social worker

What to readLiving with Advanced Cancer, Understanding Palliative Care, Cancer Care and Your Rights 


Managing symptoms

You may find that symptoms such as pain become more complex to manage, especially because the person is likely to experience a number of symptoms at the same time. However, early medical attention can provide relief and make symptoms easier to manage.

Who can help – Palliative care specialist, palliative care nurse, pain specialist, cancer specialists, GP, community nurse, physiotherapist

What to read – Living with Advanced Cancer, Facing End of Life, Overcoming Cancer Pain


Setting up the home

To make it easier and safer to care for the person at home, you may need to modify the environment (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bed pans, walker, harness for helping to lift the person, hospital bed).

Who can help – Occupational therapist


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. In the very late stages, it is natural to have little appetite so they shouldn’t be forced to eat or drink, but this can be distressing for carers.

Who can help – Occupational therapist

What to readNutrition and Cancer


Providing personal care

If the person becomes weak or unwell, they may need assistance with showering and toileting. If they are unable to get out of bed, they may need sponge baths and help to use a bed pan or urinal bottle. Some carers prefer to provide this support themselves and just need some guidance from a health professional. Other carers feel uncomfortable doing this personal care and prefer to have it given by someone else.

Who can help – Community care workers (ask your treatment team or GP for a referral, or contact My Aged Care on 1800 200 422)


Coping with the increased workload

You may find it difficult to manage all the extra tasks involved in caring for someone with advanced cancer, especially if you have other responsibilities such as paid work or parenting, or if you have your own health issues. There are a range of services available to support you in your caring role.

Who can help – Social worker, Cancer Council 13 11 20, My Aged Care (1800 200 422), home help provided by local councils or aged care services, Commonwealth Respite and Carelink Centres, volunteers, family and friends


Organising finances

You may need to manage the financial impact of advanced cancer. This can include finding additional financial support and possibly accessing superannuation and insurance. Seek professional advice before changing any financial arrangements.

Who can help – Social worker, Cancer Council Financial Referral Service on 13 11 20, financial counsellor, financial adviser

What to readCancer and Your Finances



Dealing with the emotional impact

A diagnosis of advanced cancer can be distressing for all who are involved, and it is not unusual to experience grief and symptoms of anxiety and depression. Although strong emotions are natural at this time, seek professional help if they are interfering with the ability to function or enjoy some aspects of life.

Who can help – GP, social worker, psychologist, counsellor or psychiatrist, support groups, Cancer Council 13 11 20, National Carer Counselling Program 1800 242 636, beyondblue 1300 22 4636, Lifeline 13 11 14

What to readEmotional support, How you will feel, Emotions and Cancer, Understanding Grief


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.

Who can help – Social worker, Cancer Council 13 11 20, particular family members or friends who can relay updates, social media platforms such as Facebook

What to readTalking to Kids About Cancer


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 your treatment team or GP for a referral), spiritual care practitioner (also called a pastoral carer, usually available through your treatment centre), religious leader


Maintaining hope

The carer can have an important role in helping the person with cancer find reasons to be hopeful. It is possible to be realistic while still maintaining 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), family and friends


Click on the icon below to download a PDF booklet on caring for someone with cancer


Printed copies are available for free - Call 13 11 20 to order

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.


This information was last reviewed in September 2017
View who reviewed this content
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Support services

Support for carers
Cancer Council NSW offers carers support online, over the phone and in person and can link you to our practical support services

Need legal and financial assistance?
Pro bono services, financial and legal assistance, and no interest loans

Cancer information

Advanced cancer
Information about cancer that has spread or come back

Emotions and cancer
Suggestions for coping with the diagnosis and treatment, as well as how to get support

View our publications
Guides and fact sheets for people with cancer, their families and friends

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