How to Care Resources

Caring for someone with palliative care needs can be overwhelming and stressful. Access to information you can trust is important. In the following we list a number of resources that you might find helpful.

Who is a carer?

• CarerHelp has information sheets and resources for different stages of the caring pathway and a Learning Module.
• From the Australian Government Carer Gateway:
  • Advocating for someone
  • Care coordination and case management
  • First 5 – a checklist for new carers
  • Making a complaint
  • Who are carers?
  • Carer Gateway Counselling Service Freecall 1800 422 737, or go to the webpage and Request a Callback and they will ring you.
• Carers Australia (Victoria) have a series of publications, brochures and flyers for carers.
• Cancer Council NSW has a webpage and booklet on Providing practical support.
• GatherMyCrew is a free to use online tool to assist you coordinate help from family, friends, and neighbours.
• The UK website Healthtalk has a section on Caring for someone with a terminal illness. There are also pages on:
  • Impact of caring and terminal illness on family and friends
  • Messages to other carers.

Young carers

• Australian Government Carer Gateway you can find information on Studying while caring.
• Beyond Blue and Headspace have information and help for young people as well.
• ReachOut.com is a website with tips for all kinds for young carers.
• Carers Australia has a separate website the Young Carers Network. This includes support and carer stories, and a page on where to find young carer support services and Financial support.
• Palliative Care Australia’s resource Journeys (1.83MB pdf).

Being part of the care team

• CarerHelp has information sheets and resources for different stages of the caring pathway.
• Carer Gateway is an Australian Government program providing free services and support for carers.
• Carers Australia supports carers with information on palliative and end-of-life care and for each state and territory services and supports for carers.

Practical caring

• Adelaide Hills Community Health Service a booklet on Diet and nutrition in palliative care (344kb pdf).
• Better Health channel, Victoria. Providing practical end of life and palliative care at home.
• CarerHelp has a factsheet on Injections and syringe drivers (368kb pdf).
• Gippsland Region palliative care consortium, Carers Safety and information kit.
• Grampians region Palliative Care Consortium Practical caring videos.
• Marie Curie, UK, Being cared for at home. This booklet contains practical tips from moving someone in bed, helping someone to stand from a chair, through to eating and drinking
• Medical Aids Subsidy Scheme of Queensland provides assistance with equipment for palliative care in the home, ask your palliative care team about this program.
• Medication safety for older people page from Healthdirect
• Palliative Caring Booklets:
  • Australian Capital Territory
  • New South Wales (2.65MB pdf)
  • South Australia (4.47MB pdf)
  • Tasmania
  • Victoria
  • Western Australia (2.11MB pdf)
• Palliative Care South East has a Carers toolkit with practical information on providing care and looking after yourself.
• Palliative Care Victoria has produced a guide on supporting people who need palliative care (280kb pdf)
• Queensland Metro North Health has a video on providing mouth care (scroll to the end of page)
• Services Australia has information on young carer payments for people under 25

Issues in caring

• Australian Government Carer Gateway has webpages covering a range of topics including:
  • Talking with your employer
  • Working while caring
  • Talking with professionals
  • Family meetings.
• Carers NSW has a 19-minute video, Caring for someone with a life-limiting illness.
• Canadian Virtual Hospice has information on What do I say?
• Family Relationships Online provides information about a range of services to assist families in managing relationship issues.
• Marie Curie (UK) has webpages on providing emotional support for someone with a terminal illness. Although meant for health professionals these pages can help you to understand that it is normal to have strong emotional feelings such as anger and sadness even when you are well supported.
• The Cancer Council NSW website has webpages on Support for carers including guidance on care issues and practice.
• The NSW Government has produced a booklet to assist carers in that state: Walking with carers in NSW (1.63MB pdf).
• Information can also be found on the Better Health channel on Family conflict. This is not specific to palliative care but has useful information.
• The Good Life, Good Death, Good Grief website (UK) has a brochure on communication with information to help those close to someone old or ill (3.27MB pdf).
• Palliative Care Australia has a useful booklet called Asking questions can help: A conversation checklist for people and families living with terminal illness.
• The Queensland University of Technology has booklets on things you might like to discuss with the palliative care team when your child is diagnosed and about care at the end of life.
• Violet provides information and support to help people caring for someone in the last stage of life navigate the journey and the grief and loss that accompanies it.
• Better Health Channel provides information on emotional, spiritual and cultural care in palliative care.
• The I Am Living Plan for the care of a loved one page has information for carers on navigating the emotional journey of caring.

Looking after yourself

• CarerHelp has information and resources including Being a carer (344kb pdf).
• The Australian Government Carer Gateway provide resources and respite support for carers and a Carer Counselling Program Freecall 1800 422 737.
• Cancer Council Australia has a support service for patients and carers.
• The Cancer Council NSW has a page on Common reactions of carers.
• From the Australian Government Carer Gateway: Looking after yourself.
• The Carers NSW website has information for carers on palliative care.
• Carers Australia lists for each state and territory services and supports for carers.
• Dementia Australia has a support service for patients and carers.
• The Healthtalk website (UK) has information on Ways of coping and finding solace and information on Caring for someone with a terminal illness.

Managing Daily Life

• CarerHelp has information and resources including Being a carer (344kb pdf) and a series of Learning modules covering key topics across the caring pathway.
• Cancer Council NSW has information on Support for carers including Setting up the Home and Coping with the increased workload.
• From the Australian Government Carer Gateway: Contact the Carer gateway on 1800 422 737 if you need to arrange respite care:
  • What is respite.
• Carers South Australia has information about emergency respite.
• The Australian Government has a Commonwealth Home Support Program that includes respite services.
• The Australian Government works to support carers of people with a disability or severe medical condition, or frail aged, through programs and services, and benefits and payments for carers.

Supporting carers

• Cancer Council NSW, Long-distance caring.
• Dementia Australia: Tips for caring from a Distance (158kb pdf).
• Macmillan Cancer Support has information on Being there for someone with cancer.
• Canadian Virtual Hospice has a webpage with Tips for Visiting.
• Palliative Care Australia How Can I support my friend/family member?

What to say

• Canadian Virtual Hospice has information on What do I say?
• Canteen has a guide to supporting your friend when someone in their family has cancer.
• The Macmillan Cancer Support (UK) website has a section on Talking about cancer which provides information on talking and listening, how to talk and what you can do to help.
• Palliative Care Australia has an article on What to say when someone is dying; tips from a master in her field.