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 first-hand 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.
About the author:
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 Co-Counselling 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.
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