How to Care Resources

Resources for carers

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:
  • About carers
  • Making a Complaint
  • New to caring
  • What is Advocacy?
  • Care coordination and case management
  • Carer Counselling Program 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 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

• Serivces Australia has information on young carer payments for people under 25
• Australian Government Carer Gateway has 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 for Young Carers. This includes support and carer stories, and a page on where to find young carer support services.
• Palliative Care Australia’s resource Journeys (1.83MB pdf).
• The MacMillan Cancer Support Group in the UK has produced a guide called Let’s talk about you: a guide for young people caring for someone with cancer (4.7MB pdf).

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, Caring at home - Information cards.
• 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. If you are not in Queensland there may be other support available and the list of equipment provided by Queensland Health can be a good way to see what might help.
• Palliative Care Western Australia, Palliative caring booklet (3.65MB 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 (319kb pdf). 
• Health Direct has a page on Medication Safety for Older People.

Issues in caring

• Australian Government Carer Gateway has webpages covering a range of topics including:
  • Talking with your employer
  • Working while caring
  • Talking with health professionals
  • Family meetings.
• Carers NSW have a 19-minute video, Caring for someone with a life-limiting illness.
• Canadian Virtual Hospice has information on What do I say?
• Relationships online can provide assistance with Family mediation and dispute resolution.
• Marie Curie Cancer support group of the 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: An aid for people seeing the palliative care team.

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 and help sheets that include some on Looking after families and carers (Taking a break; Taking care of yourself; Feelings; Men in a supporting role; Coping after the death of someone with dementia).
• 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:
  • At home
  • 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 (190kb 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.

Page created 11 August 2023