Deb Bunt reflects on the friendship she and Peter Berry, who is living with dementia, have

    Deb Bunt reflects on the friendship she and Peter Berry, who is living with dementia, have

    By Deb Bunt and Pete Berry. Published 2020-12-08

    BOLD-Living

    Peter’s life changes when, at the age of fifty, he is given a terminal diagnosis of early onset dementia. Since that day, he has learned to live with his very own ‘dementia monster’.


    “It’s very strange,” says Peter. “I have known you for over a year now and yet I don’t know you. I don’t really know anything about you. I’m sure you’ve told me, but I have no idea what you were like as a teenager, what it was like growing up, if your parents are alive, what your relationships have been like, what you did for a job; it’s like you’re a stranger. And yet, and yet… I feel very connected to you emotionally.”I sit and think this through. He’s right. It’s a very one-sided relationship in this respect. I know so much about Peter, about his father and his family, about his emotional state, his fears and his hopes and, of course, about his dementia. I too have shared with Peter some of my thoughts and emotions; it’s inevitable that, when two people spend so much of their time together cycling and writing, little pieces of their lives are going to be unwrapped, coyly, shyly perhaps, but unwrapped, nonetheless. During the time I have known Peter, I have become a grandmother, and that is a pretty major life event. Peter loves to see photos of the baby and has his own regrets that he will probably never get to share in the joy of being a grandparent; and yet, there are large moments in Peter’s day when he quite simply does not remember I am a grandmother.Friendship can be exposing and yet this exposure is just one way. So, whilst I know many of Peter’s stories and adventures and can probably now complete many of these anecdotes for him, such is the capacity of my memory, each time Peter and I meet, it’s as if I am a shadowy stranger, full of potential intrigue and mystery. And yet I am also so very familiar to him. I can’t imagine what that must be like and the thought makes me slightly uncomfortable, as it has only now dawned on me that this is the case.“What do you know about me?” I ask.He pauses. “You have… two sons, I think?”“Yes.”“I know Martin, of course, and I know he likes a bit of cake. Although I don’t know what he looks like until I see him.”There is a longer silence.“Erm, I know you like cycling!” He is trying to blag it now.I know that he knows me so well, and yet he does not know me at all.“I just have to use some instinct or my heart to know if I can trust people,” he says, “because I can’t base my feelings on facts anymore. And that makes some of us with dementia quite vulnerable emotionally, don’t you think?”When I wrote this section of the book, it was almost as an afterthought because I had a self-imposed deadline to meet. I wish now I had given the whole issue of friendship and dementia some more thought, that I had given myself more time to reflect on the enormity of Peter’s words, the impact they had on me and how they have shaped our friendship.Peter’s lack of memory means we can’t have that usual catch up that most friends do: how was your day yesterday? Did you solve that issue you were worried about? What did you watch on television?’ We can’t even have the banal ‘what did you have for breakfast?’ conversation because Peter will simply not know what he’d eaten and I don’t see the point of digging this unnecessary, unpleasant dementia hole for him from which he would have to extricate himself. So, by necessity, our friendship - and specifically his friendship towards me - is based on the here and now, his emotional instincts and responses. Some time ago, Peter told me a story about his father which had happened fifty years ago. When I expressed surprise at how vivid that story and its memories were, he thumped his chest and said, “I keep old memories, safe in the vault that not even dementia can unlock."I assume that this is how he functions with relationships and friendships. His sense of me, of who I am, is stored in his heart and whilst the finer details might not be accessible - my background, my parents, my relationships - the sense of who I am has been distilled from the murky liquid of his dementia. It is hoarded carefully and guarded zealously in his emotional safe and only Peter is the trustee of the key. Of course, this potentially makes it a one-sided friendship and yet - and heaven knows why - it is not. Throughout the book I stress that the relationship is one of mutual reciprocity, with Peter giving as much to me as I do to him. Of course, I have to repeat many things to Peter which he hears and processes only in that moment. So, when he asks if my parents are alive and I have told him dozens of times that they are not, does it matter that I have to tell him again? Probably not as much as it matters to Peter because on some deep, instinctual level, he must know he has asked me these questions but cannot remember having done so. I try not to think about how immensely frustrating this must be for him.I reflect on how emotionally vulnerable people with memory loss could be, how open to exploitation they might be and how utterly frightening it must be to live with this imbalance. And I think about our friendship and I hope - no, I know - that Peter feels safe and contained within its lopsided embrace. Peter says he feels our friendship as if it is ‘etched in his heart in bold letters’ and whilst he acknowledges that he is out of the loop for the minutiae of daily living, he has learned to deal with this. Peter knows the value of a friendship even if he does not know the layers of superficiality which encase it; he knows what nestles under those layers is something worth preserving. And is that not what’s important about friendship? That it means something? And no one will argue with Peter that our friendship does not mean something. And because I do remember what Peter says, I know enough about his routine to know that by the early evening he is generally tired of mind. I can visualise him at his home: there he sits, on the settee, with the wood burner blazing, accompanied on one side by a wistful sense of melancholia and on the other by his dementia monster trying to burrow deeper into his soul. This is usually when he sends me one of his thoughts. I jot them down; I don’t want them to disappear into the dementia hole to rot. Some time ago, I received this message:“Here I sit after a cycle ride on the sofa in silence next to my dementia monster. My escape was short but very fruitful. His and my silence is the proof of that. Acceptance and contentment are mine again.”One day last week, Peter and I cycled about 40 miles. We spent a large chunk of the day in each other’s company, we had two coffee stops and a light lunch and talked pretty well non-stop about everything and nothing. In the evening Peter texted me.“What have you been up to today, then?”I remembered his earlier message about his acceptance and contentment and I hoped he was content now because I felt sad for him that our day had been gobbled up by his ever-hungry monster.When I told him that we had been cycling, he sent little laughing emojis back to me and, in the way that Peter has of diffusing sadness with humour, he texted, “Well, I’m a knob.” “Your dementia is a knob,” I texted back feeling defensive for my friend. And then this he sent this, “But we had a good day, didn’t we? And I will continue to build castles out of the rubble of my dementia.” And, as ever, I am touched that I have managed to creep along the drawbridge and that there is a small space inside his castle for me. And there I will sit, with my back to the wall, hugging my knees. I am his friend and it doesn’t matter that he knows so little about me in his head because I know that Peter knows so much about me in his heart. As I sit, I know that Peter is gripping the key to the castle and to the vault; he will not relinquish it and I am safe in the knowledge that our friendship is being vigilantly guarded from the gnashing, chomping jaws of the dementia monster who insists on roaming the draughty castle rooms. The link to the Book Guild Publishing and Peter and Deb's book can be found hereSLOW PUNCTURE A4.jpg

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