Caring for someone with advanced cancer

You may be reading this because you are caring for someone with advanced cancer. Being a carer can be stressful and cause you much anxiety. Try to look after yourself – give yourself some time out and share your worries and concerns with somebody neutral, such as a counsellor or your doctor.

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

There are a range of support services to help you manage throughout the illness and in bereavement. Support services such as Meals on Wheels, home help or visiting nurses can help you in your caring role.

There are also many groups and organisations that can provide you with information and support, such as Carers Australia, the national body representing carers in Australia. Carers Australia works with the Carers Associations in each of the states and territories. Call 1800 242 636 or visit Carers Australia for more information and resources.

For more information about caring for someone with a life-limiting illness, visit Palliative Care Australia, or see Caring for someone with advanced cancer.

Respite (short-term) care

Caring can be a very difficult role and can challenge your own 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 access 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.

You may be able to access respite care through the Commonwealth Home Support Programme. Start by contacting My Aged Care (Call 1800 200 422) or speak to your doctor or the palliative care team. It’s best to make contact early on so you can find out what services are available and how you can access them.

You can also contact a Commonwealth Respite and Carelink Centre for information on local carer support services and respite options. Call 1800 052 222 during business hours or call 1800 059 059 for emergency respite support outside business hours.

Some respite care services are subsidised by the government (you may have to contribute to the cost of the care); others are funded privately (you meet the cost yourself). The fees will depend on the care provider, how long the care is for, and the type of care required.

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. .

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. Carers can also be prone to depression and anxiety. If you feel you are getting depressed or overly anxious, talk to your GP or another health professional.

  • Grief counselling and information – You and your family may be eligible for grief and bereavement counselling provided through the palliative care team. For more information about understanding grief, visit Palliative Care Australia, or download the Understanding Grief booklet from this page.
  • 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 Respite and Information Services Program – Visit youngcarers.net.au or call 1800 242 636 for age-appropriate information. You can also call 1800 052 222 to find out about respite, practical help and social activities for carers under 25.

   − Janine


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


    Understanding Palliative Care

  • 735 kB

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 April 2017
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