For anybody seeking guidance on how to care for someone with dementia, there is no better teacher than a dementia patient who retains enough self-awareness, and enough verbal acuity, to describe what it’s like to live with this disease. Fortunately for us all, Peter Berry— in partnership with his close friend, cycling/media partner, and writer Deb Bunt-- has been teaching us since his original diagnosis of early onset Alzheimer’s Disease (AD) ten years ago.
I can’t say enough good things about this book, which is the much-anticipated sequel to Slow Puncture. To be clear, Patching the Puncture is not a caregiver guide or manual. Told in the alternating voices of Peter and Deb, it ‘s an intimate memoir that is in equal measures moving and informative. This is the remarkable story of a duo that has cycled for thousands of miles through the UK to raise money for Alzheimer’s awareness, addressing the media, the House of Commons, and groups large and small in their mission. It is also a touching portrait of personal fulfillment: Their outreach efforts have given Peter a purpose in life and the stimulation and energy to slow the progression of his AD—while Deb, who struggled with a lack of confidence and self-esteem for many years, has thrived from their activities. It’s a story of mutual respect and support. The authors make a big point of differentiating between “support” (which allows the patient to retain independence) versus “care” (taking control of details and decisions away from the patient).
Their course has been a rough one to navigate, because dementia – like the wind and the tide – can shift without notice. And the journey is bittersweet because the “dementia monster” that haunts Peter can be beaten back but never vanquished. As sobering as this is, we readers can still celebrate Peter and Deb’s extraordinary achievements; and we can benefit from their invaluable lessons on how to engage and how not to engage with those living with dementia.
Patching the Puncture is the aptly titled follow up to Peter Berry and Deb Bunt’s first book, Slow Puncture. It follows Peter’s experience living with Alzheimer’s since the first book, the way he copes with the decline in his condition, his and Deb’s extraordinary work increasing dementia awareness and challenging stereotypes, as well as the strong bond of friendship and mutual reliance that has developed between them. I found Patching the Puncture educational, moving, thought provoking and often very funny. I would recommend both it and Slow Puncture to anyone whose life has been touched by dementia.