As the disease gradually took over their lives, they learned the hard way. Robin watched as his adventurous and independent wife slowly seemed to disappear. They went through discouragement and relentless pressure as Shoko’s personality changed and she lost her capacity in many areas of life – but not her constant affection and love. They experienced both frustration and support from the health and social care systems, along with love and practical help from family, and friends, and the carers who visited them..
This honest and hope-filled account, with its practical insights, suggestions for ways forward and advice on further resources, is a must-read for caregivers and for the friends and families of those affected by this mysterious disease. It shows how we can respond, not with fear and incomprehension but rather with heightened love and creative friendship.
Some Endorsements
‘Well researched and beautifully written … of significant value to the many who find themselves embarking, or continuing, on the journey that dementia demands.’
Phil Parker, Lead Nurse, National Prion Clinic, UCLH NHS Foundation Trust
‘A book that will make you both laugh and cry … a love story about how the real identity of the self retains its dignity and meaning.’
Robin and Ursula Weekes, Emmanuel Church, Wimbledon
‘A moving account of loneliness and loss, tempered by faith and love … raises a number of pertinent questions about future care that need urgent answers.’
Dr Tim Billington, former GP in Southampton
‘…written with such compassion, understanding, emotional intelligence and practical advice.’
Kim Smith, Dementia & End of Life Care Clinical lead, (Merton) Central London Community Healthcare NHS Trust
‘Really thoughtful and honest account of how it is to live with dementia. What comes through strongly is the need for appropriate support at the right time.’
Margaret Dangoor, trustee of the Centre for Ageing Better, Carers UK and Crossroads (Richmond and Kingston upon Thames), active in the dementia and carer community
‘I faced many of the challenges described here in my own life and can identify with so much in this honest, vivid and very personal account.’
Margaret Gould, former caregiver and advocate for those living with dementia
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