The Accidental Carer: A Practical Guide Through Uncertainty by Palliative Home Carers
THERE is no right or wrong way to care for someone given an end-of-life or uncertain diagnosis, but this common experience can be steeped in such mystery people simply don't know how to cope. After caring for her beloved husband Mike, pioneering Aucklander Ros Capper has taken her first-hand experience and turned it into a roadmap for others, with the publication of her book, The Accidental Carer. Palliative care is care that gives comfort - it does not cure. If the person you are caring for has an illness with an uncertain future, you may be called a 'palliative carer' by those in the medical system and likely, feel woefully underprepared. When her husband was diagnosed with cancer, Ros spent three years caring for him, supported by friends, family and health professionals. It was only after Mike died that she realised how little firsthand guidance was available to her and others. So, being the philanthropic and intrepid woman that she is, Ros decided to write a book and create a website resource www.accidentalcarer.com, to help fill the void and support others. "Ros is a remarkable woman. Most of us after going through a journey like hers would not have the energy or commitment to create a resource for the benefit of others. But she has, for which I am extremely grateful, as I am sure you will be too. It has truly been a privilege for our team to support her and this project," said Professor Merryn Gott Director, Te Arai Palliative Care and End of Life Research Group, University of Auckland. "The lack of information written by home-based palliative carers intrigued me. What I at first thought was a gap I soon realised was a chasm, hidden in plain sight." Ros became a co-researcher with the University of Auckland Te Arai Palliative Care and End of Life Research group, who gave their full support to the research and writing of The Accidental Carer. Ros said, "So as far as I am aware, this guide, designed to shine a light on the choices made by palliative carers at home, is the first of its kind in New Zealand. To everyone who reads this guide, I genuinely hope it inspires you to do your best - that is all we as carers can do. "Just as importantly, I hope it encourages you to reach out for help - palliative care is not something to do alone at home." The Accidental Carer features the stories of five family groups of home-based palliative carers (including Ros), whose stories offer comfort to others as they undergo emotional and physical challenges. The potential for burn out is high, as carers experience a mother-load of uncertainty, grief and exhaustion. Families in this book also share the gifts they found amidst these. "Sharing stories is an age-old way of making meaning, being inspired and strengthening our spirits to carry on," said Ros. With a clear and kind voice, The Accidental Carer gives practical advice on all aspects of end of life management ranging from medical appointments and communication to building a support network, novel ways to enlist support and learn resilience.
"Ros is a remarkable woman. Most of us after going through a journey like hers would not have the energy or commitment to create a resource for the benefit of others. But she has, for which I am extremely grateful, as I am sure you will be too. It has truly been a privilege for our team to support her and this project," said Professor Merryn Gott Director, Te Arai Palliative Care and End of Life Research Group, University of Auckland; "This book is a real treasure. It is practical, written with a wonderful light-heartedness in succinct short chapters and gives practical examples.This truly is a manual for caregiving coming from a place of experience, not a place of theory I love four year old Minnas' gorgeous illustrations in the book, created from her 'being a grand- daughter" experience." - Liese Groot-Alberts, Grief therapist and international palliative care educator; "Ros Capper is one of those pragmatic people who brings clarity to what is blindingly obvious. So, when you read her book The Accidental Carer, I bet you'll say, "oh yeah, that makes perfect sense; why didn't I think of it?" Well, the answer to that is you didn't think of it because your world has suddenly been turned upside down! You've become an 'accidental carer' to your loved one, who has just received a shock diagnosis and faces an uncertain future. Looking after someone who has been given an end of life diagnosis is a journey in stages and Ros Capper has been there, having cared for her beloved, now late husband Mike. Invaluable and practical, Ros's guide will be by your side throughout; helping and supporting you as you care for your loved one. Her guide offers countless practical tips, including: how to build a 'home team' to support you; where to go to get financial help; planning for the future. And then there's those conversations about dying; the hard stuff that Ros's book not only makes easier, but emotionally and practically fulfilling." - Al Morrison, State Services Commissioner
Ros Capper was born and educated in Wellington, and now lives in Auckland. She relishes social change initiatives and her early career experiences include: New Mother Support Groups, the Tall Poppies (now integrated into Thought Partners), the Natural Step, and CoCounselling International. Ros has returned to her vocational roots after realising home-based palliative carers and their support people are seeking hand-on practical information by those who have lived this experience. Ros was a palliative carer for her husband Mike in their home, where she explored innovative ways of attracting support. She would like to invite others similarly experienced to share their learnings on the website designed to accompany her book, so that they may be supported and empowered.
FOREWORD Section 1. INTRODUCTION Section 2. MANAGING THE MEDICAL SIDE OF THINGS Section 3. HOW A HOME-CARE HOME MAY BE DIFFERENT Section 4. PRIORITIES GUIDE DECISIONS Section 5. THE HOME TEAM Section 6. CREATIVE GIFTS Section 7. THE CHOICE TO SUSTAIN YOURSELF Section 8. 'AND NOW WHAT?' Section 9. CHOICES Section 10. SACRED MYSTERIES HEARTFELT ACKNOWLEDGMENTS