An Auckland woman who cared for her terminally-ill husband has written a book to help guide and support other so-called “accidental” carers.
Ros Capper from Devonport on the North Shore cared for her husband Mike Capper for three years while he died from cancer.
While she was helped along the way by friends, family and medical professionals, Ros said there was a lack of focus on carers like her.
“I was looking around for a doorway that said ‘carers this way’ and I never saw one,” she said.
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After Mike died, about two years ago, Ros said she started asking questions about the support for carers.
She joined the University of Auckland’s Te Arai Palliative Care and End of Life Research Group as a co-researcher.
The group supported Ros to write her book, The Accidental Carer, which is described as a practical guide for those offering palliative care at home for a loved one.
It features the stories of five people, including Ros, as they undergo the emotional and physical challenges of giving palliative care to a loved one at home.
Ros believed the guide was the first of its kind, and she wanted all those giving palliative care at home to read the book and reach out for support.
“I hope they access what others have learnt because it’s very hard and it can be very challenging to have someone dying in your home, losing 20kg no matter what you do and dealing with grief as well,” she said.
“It will go pear-shaped, that’s for sure.”
The book also included practical ideas for people in the community to help those who are sick and to support the carers.
“People are uneasy around illness and they don’t want to get it wrong – the result can be isolation both for the ill person and the carer.”
Ros said when Mike was really ill, she asked her friends to come around once a fortnight and cook a meal using donated ingredients. Other friends took Mike to appointments or sat with him while he listened to his favourite music, opera.
The drawings of granddaughter Minna, then aged four, were also a good reminder to live in the moment and feature in the book, she said.
Ros has also set up a website, accidentalcarer.com, which she hopes will encourage the sharing of knowledge and support.
Little packs, knitted by her neighbour, would be given out by Devonport pharmacists to families who had someone receiving palliative care. The packs included a card and the website address.
The Accidental Carer will be launched in Devonport Library on Thursday from 6.30pm. The book will be available from the website or Paradox Books in Devonport.
The Ministry of Health’s Review of Adult Palliative Care Services, launched recently at Hospice North Shore, identified the need to grow the capability of informal carers in communities as a key priority.
The review recommended improving support for those caring for loved ones, including training and providing respite care, and making better use of technology.
It also wanted work to be done across Government to consider financial and work-related barriers to informal care, such as helping people remained employed while caregiving through flexible hours, extra leave or job security provisions.