Carers and caring at the end of life
A blog post written by Dr Jennifer Tieman, CareSearch Director, Discipline Palliative and Supportive Services, Flinders University
In May 2014, Carers Australia published a discussion paper, Dying at home: Preferences and roles for unpaid carers. It seems fitting that during National Carers Week we recognise the contribution that carers make to people who are dying. Most people wish to be cared for and die at home with the people they love and in familiar surroundings. Remaining at home is made much more likely where there is someone, or a group of people, who is willing to provide care and support for the dying person. Family, friends, work colleagues and neighbours all have taken on a caring role.
We know that good communication, planning and knowledge are all critical to enable carers to provide care but carers also need to receive emotional and physical support to be able to continue caring. Carers have highlighted they need three types of support: instrumental (practical assistance), emotional (relieving the care burden and allowing family carers to maintain own activities) and information (frequent information about prognosis and expected complications).
So how can we help carers? There are three simple things that we can all do:
- Recognise the carer
We often don’t acknowledge the caring work that friends or work colleagues are providing. Simply asking how things are going and then listening can help. We can also offer to help in practical ways such as helping with the washing, picking up the kids from school, preparing a meal. Carers can also be included in social activities where possible as well.
- Share quality information
Many people are not aware of resources and information that are available that could help. If you are going to suggest a resource make sure that it is trustworthy and good quality. Some useful resources for someone caring for a person needing palliative care include:
- Become part of a death literate community
One day we will all die. Accepting death as part of life makes it easier for us to be able to talk with people caring for someone approaching the end of their life. It also helps us to build communities that are able to support families and carers. There are a number of initiatives that can help you become more death aware.
- The GroundSwell Project: This not for profit organisation uses arts and health programs to create social and cultural change about death and dying. They lead Dying to Know Day and Compassionate Communities in Australia.
- Dying2Learn: This Massive Open Online Course or MOOC explores social and physical issues around death and dying, and looks at how concepts and representations of death have changed over time.
Carers are an important part of our community. We need to recognise and acknowledge the contribution they make. We also need to remember that we will all die. So we need to acknowledge that one day we may be called upon to help care for a family member or friend.
About National Carers Week
National Carers Week (15-21 October) is about recognising and celebrating the outstanding contribution unpaid carers make to our nation. Anyone at any time can become a carer. National Carers Week is an opportunity to educate and raise awareness among all Australians about the diversity of carers and their caring roles. National Carers Week is asking Australians to take a minute and say thank you!
Dr Jennifer Tieman, CareSearch Director, Discipline Palliative and Supportive Services, Flinders University