Ros Capper wished there was a handbook when she found herself in the role of caring for her terminally-ill husband for three years. So, in a bid to guide and support others in that situation, she penned her own.
The Accidental Carer was published last year as a result of Ros' experience caring for husband Mike while he had cancer.
"It's accidental because no one plans to be a carer I wouldn't think," explains Ros. "I noticed all the written material out there was not written by people who had done it, it's written by professionals who have watched someone do it."
After being delivered the news that Mike was terminally-ill, the couple went home with a lot of questions.
"One of our questions was: if it's a shortened life, and we don't know how short, how do we make the most of now?"
One way to do that was by having their then four-year-old granddaughter Minna stay overnight each week.
"She taught us a lot about staying with the 'now', just by being a four-year-old and, often if I was thinking about the past or the future, not in a helpful way, Minna would come up with a 'Knock-knock joke."
They also prioritised what really mattered to them, while creating happy memories, based on favourite things and people.
But Ros was noticing the lack of help for carers like herself.
"Approximately 25,000 new people each year are going to be carers. Mine was palliative care which, by its nature, is temporary but a lot of people are having their lives hugely impacted all the time.
"When your family member is given an end of life diagnosis, you're starting from scratch and this was unexpected to me, as it is to most people, so you're starting an enquiry really to find out what this is about and how can I engage with it well? And, of course, our medical system is set up for the person who is unwell."
She began taking notes and was introduced to a research team at the University of Auckland, who were impressed by her writing and asked how they could help.
She subsequently joined their Te Arai Palliative Care and End of Life Research Group as a co-researcher and the group supported Ros to write her practical guide. It was presented at an international palliative care conference in Madrid, followed by Ottawa and quickly gathered momentum.
The book, 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. Written in accessible English, it also includes 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."
One of her key learnings was reaching out for support and being specific about the kind of help needed.
As a result, friends would cook meals, others took Mike to appointments or sat with him while he listened to his favourite opera music.
"Sometimes they were people to call on for conversations that matter. I did get tired and overwhelmed over the three years so gradually, it came to me to reach our more and more."
Towards the end, Ros says she and Mike fell in love again.
"Mike wasn't sleeping so well – well we both weren't – so round about 5.30am, I'd be sitting by his bed and the birds would be starting for the day and we began to reminisce about the good times we had. As these best times came to mind, we did fall in love again, which is wonderful."