AS A humanist funeral celebrant, Nicci Gerrard writes without reference to God’s part in the story of dementia, but uses her skills as an investigative and literary journalist to turn a memoir of personal grief into a moving account of the different ways in which sufferers and their loved ones experience the relentless decline of memory, reason, and emotional connection.
Her father crumbled slowly into a shadow of his former self before being admitted to hospital for medical care. This presaged the final terrible months in which he lost the last fragments of self-awareness and the ability to communicate with those who loved him, and knew him best.
John’s Campaign, initiated by Nicci and a friend within weeks of his death, calls for greater compassion and understanding of the social aspect of care for the demented, and has revolutionised hospital practice up and down the country.
This book adds further insights, as it draws on stories of personal battles, told in the words of those intimately affected by the disease. Haunting, and at times harrowing, it portrays the profound sadness of sufferers’ withdrawal from the world, leaving behind questions about the mystery of the human mind, and the tragedy of personal erosion.
Gerrard weaves the denial, fear, shame, anger, and unfathomable emotions of dementia into a canvas stretched by art, literature, music, and medicine, but does not stitch into the picture religion. This is a pity, since the rituals of faith and support derived from a dementia-friendly church community can provide comfort right up to the end. It is a lacuna in an otherwise well researched and poetic book.
I would hesitate before recommending it to those at the start of the journey, because Gerrard does not gloss over the physical indignities or ethical challenges that are involved, so it might be daunting to read soon after diagnosis. But it chimes well with the experience of being further down the road — waiting for the inevitable conclusion, and wondering whether it will come with a bang, or whimper, or simply silently.
I pray for the last of these, because the childlike sweetness that comes in the final stages would be lost in a crisis. The “Do Not Resuscitate” on the hall table is my mother’s passport to the peace that passes all understanding.
The Revd Penny Seabrook is Vicar of All Saints’, Fulham, in London.
What Dementia Teaches Us About Love
Allen Lane £16.99
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