My ambition in life was to become a published author, but this never came to fruition. Instead, I lived in London for years, working with families and young people involved in the criminal justice system. The work was tough, and I was jaded, some might say cynical. My husband, Martin, was becoming equally weary with the whole process. We made an impulsive decision to take early retirement and we left London for a small town in Suffolk. We had no plans as to what we would do, and we had no links in Suffolk. My retirement world completely changed the day I met Peter Berry.
Suffolk-born Peter was diagnosed with young onset dementia aged 50. He had lost his timber business, he’d lost his driving licence, he was losing his autonomy: bit by bit, his world was being chipped away by Alzheimer’s disease. He and his wife, Teresa, were struggling to make sense of it all.
A chance encounter and new friendship
A chance meeting with Peter in our local cycle shop changed both of our worlds. To keep myself fit, I had always been a runner and a swimmer, but Peter, an avid cyclist, ignited a passion for cycling in me. We began to cycle together, and a friendship quickly formed.
I soon became aware that Peter’s attitude to his dementia was one of defiance. He told me that, after a period of depression and two suicide attempts, he had vowed to make the most of his time. He used his passion for cycling to raise funds for, and awareness of, young onset dementia. Peter’s activities included cycling from Aberystwyth to Aldeburgh on a road bike and cycling 300 miles across four counties on his penny farthing – an amazing achievement.
Preserving Peter’s words and memories
Although Peter was involved in a number of fundraising and awareness raising activities, he could not remember anything that he had done in any detail. His actions were, in his words, “Written in sand and needed to be set in stone.” So, it was left to me, aspiring author that I was, to do just that and the result, ‘Slow puncture, living well with dementia’ was published in September 2020. The themes in the book include friendship, shifting perspectives and renewed hope, not just for Peter but for others. We have recently published a second book, ‘Walk with me: musings through the dementia fog’ which is a compilation of Peter’s thoughts and poetry.
Although these books are about Peter, he will never read them due to his severe memory loss. As soon as he reads one sentence and moves onto the next, the first sentence unravels and quickly disappears. The fact that Peter cannot read the books demonstrates the trust he has in me to relay his story. I believe that it is the enduring power of friendship which has instilled that trust.
A mutual and valued friendship
Peter cannot remember much about me, yet he feels the emotional bond of our friendship in his heart. I know a lot about Peter and yet, despite this apparent disparity, ours is not a one-sided friendship. There is a mutual reciprocity in our relationship. And our friendship has not only enabled me to achieve my life’s ambition to be published but has given me so much more. I now appreciate the key things in life – I try to live and enjoy the moment, I have found a new perspective and I will be forever grateful for this.
Raising awareness of young onset dementia
Our friendship has meant that Peter entrusted me with the key to his life and his feelings. By doing this he is still able to protect his wife Teresa, who is often ‘dementia’ed’ out. Without our friendship, Peter’s story would not be known. The story of a man from a village in rural Suffolk is being heard across the world. We have had podcasts made about us, articles written about us, and we have been on the radio and local television to share our story. We give talks to libraries, bookshops, financial institutions and social workers: the mission is to get the message out there about dementia and, particularly, to raise awareness of young onset dementia.
Peter says in his own inimitable way, that he stores our friendship in, “the vault in my heart which not even dementia can unlock.” Our friendship, quirky though it might be, was formed through a dementia diagnosis but it has grown into something very special and something which transcends the darkness of dementia.
Some strategies that facilitate our cycling
Whilst reiterating that our cycling relationship functions on reciprocal support – I can neither mend a puncture nor read a map, nor indeed have any desire to do so (Peter is a master of both of these things), there are some things which I do to ensure our cycling experience goes smoothly and without undue stress:
Keep things uncomplicated – On our café stops, I ask Peter questions which allow him choice but in a structured way. I know that Peter drinks coffee in the morning and tea in the afternoon and so might ask him what type of coffee/tea he wants. That still enables Peter to choose but does not overwhelm him.
Pre-empt potential difficulties – I know that after twenty plus miles, Peter will be hungry, even if he does not know it, because he might be slightly shaky. I ensure we stop for something to eat or make sure one of us carries jelly babies. Again, this is about knowing your friend/relative’s patterns and making sure you adapt to suit them.
Keep consistent – Peter and I try to meet at the same place for our cycle rides.
Leave clear instructions – If we do meet somewhere different, I text Peter our meeting point in case he forgets mid-journey and then it’s on his phone for him to refer to.
Share information – Peter texts me as he leaves home so that I can keep track of his timing and so I’m not left waiting around because that riles me and no one wants to cycle with an irritated friend!
Trust – Finally, and this involves huge trust, Peter and I take turns in paying for our food and I keep track of whose turn it is. This means Peter is an equal partner in our outings, all I do is act as his external memory.
These are simple techniques which make our rides smoother and trouble-free. They work well for us. These strategies have evolved as our friendship has developed. I’d encourage others to find similar techniques which work for them.
Photo – Teresa (left), Peter (centre), Deb (right)
Further information about Peter Berry can be found here and on his website.
Stories of people living with young onset
Read more stories of people who are living with a diagnosis of young onset dementia