Parkinson’s is the second most common neurodegenerative condition after dementia and about 1 in 500 people in New Zealand have Parkinson’s.

Living and Caring

A new book has been written for people with Parkinson’s and the people who care for them. It draws on the personal experiences of over forty people living with Parkinson’s in the hope that sharing their journeys may help readers navigate theirs.

Living and Caring was co-authored by Ann Andrews and Jennifer Dann. Ann had Parkinson’s, and this was her final book to be written; she sadly passed away before it was published.

Jennifer interviewed the carers in this book. She is passionate about the work of unpaid carers having grown up seeing her mum care for her severely intellectually disabled sister.

Living and Caring is designed to be read once Parkinson’s has progressed to a point where the concept of ‘care’ needs to be considered in all its complexity. It offers readers the opportunity to share the experiences of both people with Parkinson’s and their family carers with a wide range of challenges, offering practical tips on how to continue living at home for as long as possible.

By covering the care partnership from both sides of the caring coin, readers can understand things from each other’s perspectives and hopefully work together on solutions that work for each unique relationship and situation.Carers were interviewed separately from the people with Parkinson’s and their quotes are anonymous so they could be totally frank about their feelings, struggles and insights. Because the progression of Parkinson’s varies so widely from person to person, the book is organised by subject so readers can dip into topics as they become relevant.

Q&A with Jennifer Dann, author of Living and Caring

What’s the book about?
It shares the experiences of over forty New Zealanders living with Parkinson’s and the family members who care for them in the hope it will help others.

Why did you write it?
My family friend Ann Andrews, who had Parkinson’s, asked me to help her research and co-author her third book on Parkinson’s. The Positively Parkinson’s author had reached the advanced stages of Parkinson’s where she needed to consider ‘care’ for herself. She was fearful of the prospect and wanted to explore what that involves in practical terms and how it changes the relationship between the person with Parkinson’s and the family members who care for them.

What experience do you bring to the book?
I didn’t know a lot about Parkinson’s when I started but I’m an experienced journalist and I was interested in hearing the stories of family carers. I know how hard their position can be after seeing my own Mum care for my severely intellectually disabled sister. I wanted to bear witness to their unseen, unpaid work and hoped that sharing their stories could help others in similar situations.

How did you research it?
Every Thursday after dropping my three children at school, I’d drive over to Ann’s apartment and pick her up. We’d go and interview couples all around Auckland from Albany to Manurewa. She’d interview the people with Parkinson’s and I’d interview the people who cared for them. We did the interviews in separate rooms and kept our findings anonymous so they could be completely honest about their experiences without hurting each other’s feelings. We also did interviews with people around New Zealand by email and phone.

What did you find out?
We found out that relationships do change as a result of one partner needing to care for the other. Couples with good communication fared better. We realised that caring is a partnership that goes two ways; it works best when both the carer and cared for listen and respond to each other’s needs.
We discovered that family carers do a huge amount of unseen work that can be exhausting and isolating. These unpaid workers need all the support they can get from extended family, friends, neighbours and the community to keep people in their own homes rather than institutional care. Anyone who knows people living with Parkinson’s can read this book to find out how they can help.

What most surprised you in your research?
Right from the first Parkinson’s Carers group meeting I went along to, I was surprised and touched by the amount of love and laughter I observed. Carers at these meetings obviously find huge strength in sharing details of their day-to-day reality with people who understand what they’re going through and offering each other practical advice and emotional support. I hoped to recreate that experience for readers of Living and Caring.

How did you write the book?
Unfortunately Ann died of cancer before we had time to write it together. We’d finished our research and despite her severe Parkinson’s tremor, Ann had managed to type four thousand words. When I went to say goodbye to her at Auckland’s Mercy Hospice she let me know she’d like me to finish it without her. Collating all our findings into a book covering the perspectives of both carers and cared for was a huge job which I did in my own time for Ann and all the people out there affected by Parkinson’s. I hope it will be a useful resource.

What does the book cover?
Living and Caring covers every aspect of living with Parkinson’s from diagnosis onwards, including practical issues like walking, dressing, eating, medication and therapy along with emotional issues like communication, relationships, intimacy, power and control. The book also covers the tougher problems that occur in the advanced stages of this progressive neurodegenerative disease such as falling, cognitive change, dementia and incontinence. It examines when a person with Parkinson’s might go ‘into care’ and covers support such as respite care and home help that can help family carers to keep their loved ones at home as long as possible.

Is some of the content confronting?
Sadly, some of this book’s content is confronting. A few of the stories Ann and I heard left us in tears and wondering if we could continue. That’s why we recommend readers only read as much as they need to know right now. Everyone’s different; some people like to know the worst ahead of time so they can plan for it. Others find that information too depressing and prefer to focus on the positive. Either approach is fine. Parkinson’s progresses very slowly over many years, so there’s plenty of time to dip in as and when you need. Each chapter finishes with a list of practical tips to help people cope with the situations they may well find themselves in.

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