Living with Alzheimers: A love story
Anna Chaplain, Wendy Gleadle, in Chipping Campden, Gloucestershire, recommends this book, published this year by Instant Apostle (Watford, 2020, ISBN 978-1-912726-19-6) and has reviewed it for the website of the Evangelical Alliance.
Have you ever wondered how people cope with living with dementia? This book is a poignant and truthful account of how Robin and his wife Shoko lived with her Alzheimer’s. As the title suggests, it truly is a love story.
Robin looks back over his marriage to Shoko, and describes with sensitivity how their relationship grew even deeper despite, and perhaps even because of, her Alzheimer’s. He gives a vivid and honest account of the countless challenges they had to face as her condition deteriorated and balances the anguish of the situation with their shared Christian faith. The book is written from such a personal viewpoint and lived experience that it is a more accessible read than a purely factual or medical account of Alzheimer’s would be. He has a natural and vivid style of writing which helps the reader understand the painful predicament in which they found themselves. The fact that it is such a personal memoir means he can offer really practical advice for anyone caring for someone with dementia.
The book opens with a fascinating insight into the cultural differences in a marriage between a British man and his Japanese wife. It proceeds to describe the confusion of the early progression of the disease, the increasing frustration of having to cope with her unpredictable behaviour, and the help they needed from family and friends. The contrast of her earlier adventurous life with the inevitable decline and loss of function makes at times for a painful read. But the main thread running through it all is the deep love Robin and Shoko shared with each other to the end. Robin concludes the book by providing an excellent list of resources which will help any readers who are also having to care for someone living with dementia.
The main accomplishment of the book is to look squarely at the question of whether the person with dementia retains their ‘inner self’, despite the growing agitation, aggression, anxiety and apathy. Notwithstanding his increasing sense of loss through her limited communication, he discovered his calling was to serve and love her. Robin kept close to Shoko’s ‘inner self’ by choosing not to disagree or argue, but to distract and divert her. He realised that it is in relationship that a person remains, and built a new relationship with her by agreeing with her, entering into her world, learning from her and encouraging old memories. This is expressed in two bitter-sweet extracts from his journal.
'Last night we looked at our wedding pictures. You were able to connect with them, which isn’t always the case. ‘Who is that person in white?’ you asked. "Oh, it’s me, and that is you. Can we stay together always?" You were so beautiful – my eyes devoured the pictures. And I thought, you are still beautiful and I love you more than ever' (p. 96).
'When inhibitions are reduced and there are few distractions our relationship becomes direct, there are no barriers. You express it in your words to me, or sometimes to others about me; still showing acts of caring. It’s very powerful, almost painful. Tonight you said, "Thank you, Lord, for giving such a good person to me"’ (p. 108).
Robin’s final thoughts on relationship turn to God.
'As people made by God, we are held in God’s memory. God does not let us go and therefore we continue to exist, even when we ourselves may have forgotten everything, including God. This sense of being held by God is also transmitted to us by God’s people as they maintain relationships of love and care with us' (p. 163).
This beautiful book is a treasure trove of wisdom and understanding about dementia. Anyone affected by dementia in their family should read it to gain insight on how to gain the support they need in order to cope with their own particular 'Alzheimer’s story'.
(This article was first published on the Evangelical Alliance’s website on Tuesday 18 August 2020).