Carer Booklet – A comprehensive resource
In partnership with PCA and PCWA, PCNSW is pleased to launch its new Carer Booklet. This is a comprehensive resource for carers that you can download from our website.
Caring for someone as they approach the end of their life can be both rewarding and demanding. For some carers it proves to be a privilege, strengthening relationships and giving them precious time and memories that they otherwise would not have had, for others it can be difficult and exhausting, and the role may not be a feasible one.
The booklet also explains the role of palliative care, and seeks to address the myths and misunderstandings that are commonly held.
It is hoped that this book will help to explain what caring involves so you are better equipped to make informed decisions which reflect your personal needs and circumstances. Rather than giving detailed medical or nursing information, it presents options to consider and references a range of services and supports that might be helpful.
7 Tips for Strengthening your Advance Care Plan
Advance Care Planning Australia have some advice for people putting in place an advance care plan.
You can also contact them on 1300 208 582, Mon – Fri (AEST) if you would like free advance care planning advice.
Study suggests that granting small wishes to people in end-of-life care can improve family and staff member experiences.
Read the Reuters article here!
Timothy Ihrig on Dying Well
Clinicians are trained to treat illness within the terms of disease. On the other hand, palliative care aims to treat it within the terms of being human and there’s strong evidence to support that this approach extends, and improves the quality of, life. Here’s Timothy Ihrig discussing this within the context of the US healthcare system.
Atul Gawande on Living a Good Life Approaching Death
American surgeon, writer and public health researcher Atul Gawande says we need to rethink the way we practice medicine for people in declining health; with a stronger focus on living well at end of life.
The National Register of Palliative Care Consumers and Carers
Partnership between palliative care consumers and non-consumers is integral to effective leadership in public policy. We know that the lived experience of consumers and carers provides enormous value to end of life services and that consumers should be actively encouraged into an alliance with healthcare workers. Where do we start? Palliative Care Australia developed a platform last year for just this purpose and we’d like to remind you of it! The National Register of Palliative Care Consumers and Carers is just such a resource to help bridge the gap. Sign up through the link below:
University of New England’s Caring for Carers Study
Caring for Carers: Predictors of Carer Burden in Carers of Parkinson’s Disease Patients is a study investigating factors which predict carer burden and carer quality of life in carers of people with Parkinson’s Disease, with a specific focus on the impact of cognitive impairment on quality of life and relationship functioning (where carers are also partners/spouses). The findings will be used to highlight the specific support needs of carers, to enable them to sustainably support their relatives and loved ones.
Participation involves completing an anonymous online questionnaire, which includes standardised measures of cognitive impairment, carer burden, quality of life and psychological distress and takes approximately 25 minutes.
If you have any questions, please contact Dr Clara Murray at email@example.com
This project has been approved by the Human Research Ethics Committee of the University of New England.
We Need a Heroic Narrative for Death
In the spirit of celebrating this recent addition to our Families and Carers section, the team at Palliative Care NSW thought we’d share this TED X talk by American journalist and author, Amanda Bennett. Here, Amanda provides moving insights into caring for her husband at end of life, and the endurance it took to live abundantly in those final years. Amanda reflects on the narrative around death, describing the cancer battle as a hero’s, and calls for clinicians, carers and families to embrace another narrative: of letting go heroically.