How do I Provide Care for my Family and Community?

Caring for our family and elders and our community on their journey to finishing up is an important role for many Aboriginal and Torres Strait Islander people. Like everything else in our lives, everything works better when we come together! There is strength in numbers. The time spent together during this journey bonds us and is an important time to address our concerns and worries.

There is useful information about caring for your loved ones and community while they are on their palliative care journey. There is information on support that carers can need as well.

Information on Providing Care

• 'Caring for your mob at the end of their life' (1.3MB pdf), from the Australian Government Department of Health. 
• A guide to care for those with a terminal condition: Honouring the choices of Aboriginal and Torres Strait Islander people in the ACT community (751kb pdf) (from ACT Health but relevant to all).
• CareSearch provides several resources for carers to help them to care for their loved-ones.
  • How to Care
  • Practical Caring Resources which includes:
    • Services and Support
    • Managing Medicines
    • Transport
• Resources for Aboriginal and Torres Strait Islander Carers from Carers Australia
• What do I do when someone dies? from Aboriginal Funerals

Support for Carers

• Coping with Sorrow, Loss and Grief: A self-help resource to help Aboriginal and Torres Strait Islander people trying to cope with sorrow, loss and grief (1.05MB pdf) from Lifeline Information Services
• Grieving Aboriginal Way booklet (2.74MB pdf) was developed by Indigenous Psychological Services for Aboriginal and Torres Strait Islander people to raise awareness about grief. It has also been adapted into a Grieving the Aboriginal way fact sheet (90kb pdf) by the Tasmanian Department of Health.
• Grief and Loss: Help for Aboriginal people going through Grief (519kb pdf) from the Aboriginal Health Council of South Australia
• Rising spirits: Grief and Loss is a website from the Aboriginal Health Council of South Australia is an information resource for the Aboriginal community
• Staying Strong Stories booklet (2.38MB pdf) provides Aboriginal people with support and guidance for dealing with life challenges
• Watch a 5 minute video by Beyond Blue called Stories for Keeping Strong.
• The following leaflets are available from the Indigenous Substance Misuse Health Promotions Unit of Aboriginal Drug and Alcohol Council (SA)
  • Sorry Business Grief and Loss (1.44MB pdf)
  • Telling your story - Getting over grief (1.09MB pdf)
  • What do we tell the children? When someone dies (1.05MB pdf)

• They told us in the city hospital that there was nothing more they could do. We wanted to bring him home and they transferred him to the local hospital… I took him home for about three months with help from palliative nurses… they gave me a bed in the hospital in the room with him so in the last—you know, we’d been together—43 years we were,

  A family member’s story of caring. From Managing Two Worlds Together: Study 3 - The Experiences of Patients and Their Carers (902kb pdf).
  Source:  Kelly J, Dwyer J, Mackean T, Willis E, O’Donnell K, Battersby M, et al. Managing Two Worlds Together: Study 3 - The Experiences of Patients and Their Carers (902kb pdf). Melbourne: The Lowitja Institute; 2011. Page 35.

• I got a lot of help up here with palliative care and all of that, which I didn’t know about

  A carer in a rural area recalls palliative care assistance provided by local Aboriginal Health Services and Community Health services. From Managing Two Worlds Together: Study 3 - The Experiences of Patients and Their Carers (902kb pdf).
  Source: Kelly J, Dwyer J, Mackean T, Willis E, O’Donnell K, Battersby M, et al. Managing Two Worlds Together: Study 3 - The Experiences of Patients and Their Carers (902kb pdf). Melbourne: The Lowitja Institute; 2011. Page 30.

• Mary was offered further chemotherapy treatment but she stated that she wanted to discuss the issues with her family at home. It was important that the family hear the story themselves. A teleconference was arranged and an interpreter was booked. The teleconference included family and clinic staff back at her community as well as Palliative Care team members... During the teleconference Mary’s prognosis, disease progress and treatment options were carefully explained to the family. It was stated that the treatment would not eliminate the disease but would possibly slow down the progress. Mary and her family decided that she did not want to have any more chemotherapy treatment. She said that she was homesick and wanted to return home to be with her family. It was agreed that arrangements be made for Mary to travel home as soon as possible... Mary made it home and passed away peacefully surrounded by family and community members 2 weeks later.

  Clinical Nurse Manager of Hospice and Palliative Care Case Story of 'Mary' from the CareSearch Nurses Hub News November 2016 (193kb pdf).
  Source: Murphy S. CareSearch Nurses Hub News: Case Story (193kb pdf). 2016 Nov.

Next: Where Can I Find Help?

Last updated 24 March 2017