Taking its title from neurologist Dr Oliver Sacks’ collection of intriguing case studies, The Man Who Mistook His Wife for a Hat, Dasha Kiper’s Travellers to Unimaginable Lands, casts a similarly astute and humane eye over the lives of people impacted by neurological illness. Kiper’s book focuses on those directly affected by dementia; an ever-growing community now numbering 55 million worldwide. Like Dr Sacks, her experience – as live-in carer for a Holocaust survivor with Alzheimer’s disease then as an advocate and counsellor for caregivers – has deeply informed the ideas presented in the book.
Each chapter opens with an engaging personal story. Honestly and without judgment, Kiper presents people struggling to connect and interact meaningfully because dementia is driving them apart. Those living or working with someone who has a dementia will instantly recognise many of these scenarios and appreciate the deep respect and unflinching candour with which Kiper analyses the impact on a relationship.
We are introduced to a husband whose sudden religious piety is driving his wife up the walls, a daughter whose mother’s lifelong stubbornness is exacerbated by her dementia diagnosis and a son whose father refuses to see him as a fully grown adult and mocks his inadequacies.
Unlike Sacks, Kiper has chosen not to focus upon the patients. Her book centres on the problems that caregivers routinely face. She draws upon her own experience, fascinating psychological experiments, philosophy, neurology and even literature to show how a caregiver’s supposedly “healthy brain” will struggle to adapt or understand the complexities of a brain impaired by dementia. The science sits easily next to the stories, making for a surprisingly engaging read.
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In the US, where Kiper is based, more than 16 million caregivers, many of whom are family members, provide $16 billion worth of unpaid care. The statistics in the UK and Ireland read similarly. Many caregivers find their finances, physical and mental health adversely impacted by their responsibilities. Whilst they often choose to care for a loved one it can be a thankless and draining experience.
What marks Travellers to Unimaginable Lands as a unique and essential read is the neurological insight which Kiper includes alongside her case studies
Of late there has been a number of wonderful books exploring the carer’s perspective, casting much-needed light on both the joys and difficult realities of looking after a person who has dementia. Recently, I’ve read and enjoyed some painfully honest accounts including The Reluctant Carer, which was anonymously written, and Pope Lonergan’s hilarious and poignant I’ll Die After Bingo. It is vital that caregivers see their experiences accurately and respectfully portrayed. It helps reveal their immense social contribution and, in an ideal world, should inform the policymakers when it comes to providing meaningful support.
What marks Travellers to Unimaginable Lands as a unique and essential read is the neurological insight which Kiper includes alongside her case studies. Though explaining the science doesn’t necessarily make the caring experience more bearable, understanding why caregivers fall into unhelpful patterns of thinking can help to alleviate blame and guilt. It’s fairly common to hear long-term carers of those with dementia expressing disappointment in themselves. Though they understand that their loved one’s brain has been irreparably damaged, they sometimes continue to expect impossible standards of cognition and behaviour.
In theory a wife might understand why her husband is more likely to repeat the same story ad nauseam since his dementia diagnosis. In practice, it’s difficult to maintain interest when she’s heard the story 50 times. Similarly, a daughter whose mother no longer recognises her, may understand that her brain is neurologically impaired and yet still lose her temper or become emotional when the same woman calls her by the wrong name.
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Kiper’s book is quick to acknowledge that caring is difficult. She admits losing her temper. She shares a story from Sacks’s book showing that even he occasionally made mistakes when it came to caring for those with dementia. On first reading, I questioned the point of this book. There are no easy answers or quick fixes. There are no solutions to the problems posed by dementia. Kiper’s basic theme, expanded to explore various specific scenarios, is the hypothesis that the healthy brain of a caregiver is incapable of fully adapting to the proclivities and nuances of a dementia brain.
I was intrigued by this idea. I was also left a little cold. There is little here to offer a carer whose daily existence is an ongoing struggle not to lose patience or hope. Gradually, I began to realise that this somewhat bleak science is actually Kiper’s gift to the weary caregiver. There is no such thing as a perfect carer. Everyone struggles. Everyone will, from time to time, fail. The caregiver can’t be blamed for this. It is just the way the human brain is wired. Kiper’s book insists that caregivers go a bit easier on themselves.