Living with Alzheimer's - a Love Story
Updated: Jul 22
Published in January 2020 by Instant Apostle; ISBN 9781912726196. Available here .
Or you can request it from your local bookshop.
When my wife, Shoko, was diagnosed with Alzheimer's, in January 2012, we had no clue about what lay ahead. A few years later, when the disease actually took over our lives, we learned the hard way. We went through a lot of discouragement and relentless pressure. Shoko’s personality changed and she lost her capacity in many areas of life. She died in 2018, from heart failure.
What kept us going were the love and practical help of family and friends, and the remarkable friendship and support of the carers who visited us, backed up by health and social care professionals.
Even more remarkable was my growing awareness of Shoko’s constant affection and love, despite the decline in her mental ability. It was a deeply spiritual journey.
This is our story: we know that each person’s experience of Alzheimer’s (or other forms of dementia) is different. But there are common questions. What can you do to help the person you are caring for and sustain yourself? What resources are available? That is what we began to discover.
The book is written for other caregivers, families and friends, sharing the same pain and pressure, as well as the hope and resources.
Attitudes are changing. But fear and incomprehension are still the most common responses to Alzheimer’s. It truly is a fearsome and mysterious disease. But perhaps we can learn how to respond with love and more understanding.
Here are three areas of focus for this website:
The book is written for other caregivers, families and friends, sharing the same pain and pressure, as well as the hope and resources. You can read about some responses here.
We want to join with others to find ways that churches and community groups can better respond to dementia – those that are living with it, those caring for others, all of us who want to be more engaged. Read here about workshops and an on-going support and resource group.
We also want to see changes to social care. All agree that radical change is needed: there are different perspectives and a vigorous debate. One key area, from our experience, is to provide personal, targeted support for caregivers. See some comments in Changing the system and building your support team here and Person-centred care: models that work here. What are your ideas?