Caring for someone with advanced cancer

You may be reading this because you are caring for someone with advanced cancer. What this means for you will vary depending on the situation. Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful.

For more on this, see Caring for someone with cancer

Learn more about:


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


Carers as part of the team

Family and carers play a key role in palliative care and are considered part of the team. As a carer, you can work with the palliative care team to ensure you understand, and are included in, decisions about the care and treatment of the person you care for.

You will need the written consent of the person you are caring for before the team can talk with you about their care when they are not present. This consent and your contact details should be formally recorded in the individual’s case file.

The goal of palliative care is to improve quality of life not only for the person with cancer, but also for their family and carers. The palliative care team will assess your needs and identify services that can support you in your caring role. It is important that you know who to contact for help and support in an emergency or after hours.

Carers can sometimes feel they are at risk of losing their identity as partner, child, sibling or friend to their caring role. Accepting help from the palliative care team can mean you can spend more quality time with the person you’re caring for.

Information for carers

  • See Facing end of life for ways you can provide practical and emotional support for a person nearing the end of their life.
  • Palliative Care Australia provides fact sheets and videos for carers. Topics include the role of palliative care, managing symptoms, and caring for yourself. Visit palliativecare.org.au/im-a-carer.
  • Use the Carer Gateway’s “Find a service” search function to locate home help, transport and respite care, as well as counselling and support groups near you.

Respite (short-term) care

Caring can be a very difficult role that can challenge your own physical and emotional wellbeing. Respite care is available to give you a break. It can sometimes be given in your 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).

Respite care can be for a couple of hours, overnight or for several days. You can use respite care for any reason, such as looking after your own health, visiting friends or other family members, or catching up on some much needed sleep at home.

Some carers avoid using respite care because they feel guilty or concerned about leaving the person they are caring for. However, it is important to look after your own health – by taking a break, you will probably find that you can continue your caring role more effectively.

It’s a good idea to start looking into respite services before you actually need them. Talk to your doctor or the palliative care team about what services are available and how you can access them. Commonwealth Respite and Carelink Centres can also provide information on local carer support services, respite options and other support that may suit your needs. Call 1800 052 222 during business hours or call 1800 059 059 for emergency respite support outside business hours.

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


Counselling and support

Carers often experience a range of conflicting emotions. Talking confidentially with a counsellor or social worker may help you work through your worries and concerns, learn communication strategies, and come to terms with changes in your life.

If the person you are caring for is nearing the end of life, the palliative care team will provide the support you need to help you understand what is happening and what happens next. This may include discussions about feelings of loss and grief, now and in the future.

It is not unusual for carers to experience depression and/or anxiety. If you feel you are getting depressed or overly anxious, talk to your GP or another health professional. For more information about practical and financial support see Seeking support.

Grief counselling and information – You and your family may be eligible for grief and bereavement counselling provided through the palliative care team. For more on this, see Understanding grief or visit palliativecare.org.au.

Cancer Council telephone support group – Cancer Council offers a national telephone support group for carers. It runs twice a month. For more information about how you can speak with other people in a carer role, call 13 11 20.

Carers Australia programs – The National Carer Counselling Program provides short-term counselling. The Carers Associations in each state and territory also run local support groups. For more information, visit carersaustralia.com.au or call 1800 242 636.

Young Carers – Find age-appropriate information for young carers at Young Carers Network, or call 1800 242 636. You can also call your nearest Commonwealth Respite and Carelink Centre on 1800 052 222 to find out about respite services for carers under 25.

        — Janine

Click on the icon below to download a PDF booklet on palliative care.


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 May 2019
View who reviewed this content
View our editorial policy

Support services

Coping with cancer?
Speak to a health professional or to someone who has been there, or find a support group or forum

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

Looking for transport, accommodation or home help?
Practical advice and support during and after treatment

Cancer information

Key questions about advanced cancer
Answers to questions people may have when they are first told they have advanced cancer

End of life
Information for people who have been told that the end of life is near

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

SHARE
TOP BACK TO TOP