Robin, did you ever think you would be a published author?
I have written several books about Asian culture and religion. But this is a very different area and I never expected to write on this topic.
Living with Alzheimer’s deals with a very personal and challenging issue – what were the challenges in recording your and Shoko’s story?
I wanted to share our story as openly and honestly as possible, hoping that it could be helpful to others. I needed to remember and describe actual incidents and conversations as graphically as I could. I had been keeping a journal for several months before Shoko died, and that was valuable.
My family told me that I needed to express my emotions and feelings, which I tried to do. It’s quite difficult to convey the sense of bewilderment and sometimes hopelessness that you feel when caring for a person living with Alzheimer’s, without appearing negative or self-pitying. And I also wanted to share the real joys and hopes of this experience.
Has writing the book been helpful for you personally?
Some people said, ‘It must have been therapeutic for you.’ That wasn’t why I wanted to write. I genuinely hoped that I could write to help others, in some way. But in fact it was very satisfying to look back and remember so much of our life together and the intense experience of the final two years.
Are there one or two key things that you hope readers will take away from Living with Alzheimer’s?
Firstly, Alzheimer’s, and other forms of dementia, are fearsome and distressing. But we don’t need to be afraid. The most important thing is to go on relating with love, attention and natural warmth to the person(s) affected by it, whether we know them well or are meeting them more casually.
Secondly, we need to be intentional in supporting friends or family members who are caring for somebody living with dementia. A smile, enquiring how they are doing (and meaning it), visiting or phoning, practical help – these are invaluable. Friends don’t always find it easy. But they don’t give up or stay away.
And thirdly, the current systems of health and social care need to change. I have included reflections on this in the book.
What would you say to someone who has suddenly found themselves in your and Shoko’s situation?
Begin building your support team. You can’t do this on your own and the person living with Alzheimer’s also needs to have people with whom they can relate with confidence and ease, so that they are not completely dependent on you. Begin working on this at once, even before you think you need it, as it takes time.
The support team includes family, friends and professional help (both medical and social care). Among the professionals, try to find somebody that you can talk to openly about what is happening to you now, what you can expect In the future and how you can respond. It isn’t easy to find that person, but it is worth it. The temptation is either to ignore what is happening and hope it will somehow go away, or to become very worried and fall into despair.
Did you get input from friends and family for the book, or was it something you felt best to work on alone?
I wrote it on my own but consulted family and friends, especially my daughter and son who were closely involved (from abroad) in caring for their mother. They all gave invaluable feedback and advice.
Did your faith influence your writing?
My faith was deeply challenged by the experience of Alzheimer’s. I needed, and received, a lot of support from my church’s vicar as well as from other close friends who supported us with prayer and practical help.
I shared a bit of this in the book, while also trying to write for anybody, whatever their faith convictions.
How did you find the publication process?
Finding a publisher was difficult if not impossible! I considered self publication but felt that the support of a publisher would be valuable.
I was fortunate that Instant Apostle told me from the beginning that they would consider my MS if I was unable to find another publisher. When they took it on I found their support really professional and valuable. The editor’s advice was not immediately appreciated! But it proved to be right and the MS was undoubtedly strengthened by it. It was good to work together. The rest of the team worked smoothly on the cover and design, blurb, publicity, social media and dealings with bookshops and online distributors, always consulting and keeping me informed.
So it has been a positive experience.
What one piece of advice would you want to give to a new writer?
Think about what you want to express and then go for it. Find at least one person who will give you honest feedback and with whom you can bounce ideas and drafts.
What are you working on now?
My aim in writing this book was to create awareness and if possible help to provide support for those going through the same experience, whether caregivers, family or friends. So I am continuing to work on that by relating to organisations working in this area and by organising seminars in churches and other community groups.
As part of this I have developed a website (https://www.livingwithalzheimers.life) and am trying to communicate through Twitter – quite a new experience.
Later I may be able to return to writing on Asian culture.
Finally, what is your favourite book and why?
Too many to choose one today! Different kinds from heavier to very light.