Deb Bunt has written two books about her best friend, Peter Berry, who was diagnosed at the age of 50 with early onset Alzheimer’s. During Dementia Action Week, she explains how the friendship has changed both our lives
When my husband, Martin, and I took early retirement and moved to rural Suffolk I hoped my world would change for the better. My job in London was systematically draining me of empathy, emotion and energy. Maybe the gentler pace of life would give me time to write my best seller! A chance meeting with Peter Berry in our local cycle shop in Saxmundham was the surprising catalyst to that change.
Suffolk born Peter (57) was diagnosed with early onset dementia, aged 50. He’d lost his timber business, his driving licence and was losing his autonomy.
Bit by bit, dementia was chipping away his world. Peter, a keen cyclist, ignited a dormant passion for cycling in me. We began to cycle together, and a friendship formed. Although Peter was involved in several fundraising and awareness raising events, he couldn’t remember anything he’d done in any detail. As he himself told me, his words and actions were “written in sand and needed to be set in stone”. So, it was left to me, aspiring author that I was, to do just this and the result, “Slow Puncture, Living Well with Dementia” was published in September 2020 by The Book Guild.
The themes in the book include friendship, shifting perspectives and renewed hope, not just for Peter but for others. Whilst this is a book about Peter, his severe memory loss means he’ll never read it. This alone demonstrates the trust he has in me to relay his story and I believe it is the enduring power of our friendship which has inculcated that trust.
Not only has our friendship enabled Peter to entrust me with the key to his life and his feelings but, by doing this he’s still able to protect his wife, Teresa, who is often ‘dementia’d’ out. Without our friendship, Peter’s story would not be known. The story of a man from a village in rural Suffolk is beginning to be heard across the world. An American organisation, AlzAuthors, who curate the best books and resources on dementia, has added our books on their website (oh yes, we have another book now!).
We have had podcasts made about us, articles written about us and have been on the radio and local television to share our story. Our mission remains to disseminate the message about dementia and, particularly, to raise awareness of young dementia.
In “Slow Puncture”, I expressed my belief that dementia was something exclusive to old people, an inevitable part of ageing. When I met Peter for the first time and realised that he just looked ‘normal’, I was flummoxed. I wrote: “What did I expect? A wild-eyed man with flowing unruly grey locks, dribbling and drooling into his bib, arms akimbo, running semi-naked, like a parody of King Lear…”
I’m embarrassed when I look back on my naivety. I’m glad to say that Peter has challenged my stereotypical assumptions and booted them unceremoniously into the Suffolk woodlands.
One way Peter learned to cope with the encroaching footsteps of dementia was to create a “dementia monster” – it’s an “ugly little fellow” who is left sitting on the sofa “twiddling its thumbs” when Peter goes out cycling. By externalising his dementia and giving it an identity of his choosing, Peter has taken charge.
Peter has taught me so much, not only about dementia, but about myself. Most of all, Peter has taught me the value of a true friendship, unadulterated by the superficial frills of trivia. This is because, despite the fact we spend an inordinate amount of time in each other’s company, Peter knows very little about me: not because he’s not interested but because he simply can’t remember. But, as Peter says in his own inimitable way, he stores our friendship in the “vault in his heart which not even dementia can unlock”.
This friendship – quirky perhaps, unconventional maybe, unexpected definitely – was formed through a dementia diagnosis but has grown into something very special, something which transcends the darkness of dementia. And Peter’s dementia monster – against whom he battles daily and from whom he likes to take – has handed me a very special gift. Ours was a serendipitous coming together because now I really am an author.
“Slow Puncture, Living Well with Dementia”, and Walk With Me: Musings Through The Dementia Fog, both by Peter Berry & Deb Bunt, can be found on Amazon. Peter’s latest challenge is to abseil down The Orbital Tower on June 25, 2022 to raise money for Alzheimer’s Research UK. If you want to add to his JustGiving Page, click here. Dementia Action Week runs until May 22, 2022.
Featured image: Deb Bunt and Peter Berry