A blog by Deb #PeterBerry#Living with Dementia #re-assessing illness#livinginthemoment
Peter was diagnosed with early onset dementia at the age of 50. He’s now 54.
I met Peter in June last year and have cycled many hundreds of miles through Suffolk with him. He has been an enabler for me and opened a whole new world of cycling. I missed his last challenge (as we only moved to Suffolk in June) and so I am supporting him during this one and I feel privileged to be part of his “four counties” endeavour. Being part of the planning and training for this event has been demonstrable proof that, as Peter constantly says, “ life isn’t over for those living with dementia, it’s just a little different and that amazing things can be achieved.” I am supporting Peter because I have been humbled by his eternal optimism, determination and sheer bloody mindedness and want to be there with him as he cycles on his penny farthing through the four counties and to see others with terminal illnesses and life changing conditions pick up his baton and join him on this enterprise. Most of all I want to be part of this challenge so I can watch as he spreads his pleasure in cycling across the counties and inspires others to have a go.
Whilst out cycling last year, I hit a kerb, flew off my bike, landed on my shoulder and broke my clavicle and scapula. For those unacquainted with anatomy, suffice to say that these things are not part of my bike.
Five months on, my bone is still broken and I’m about to embark on surgery to rectify the problem. This will mean a further period of prolonged inactivity and on missing out on planned cycling activities.
Now, I don’t understand the concept of waiting or of thinking things through or even of careful and informed planning. My impulsivity has been both my making and my downfall. So, the last few months have been hell for me. This has been a chastening experience. Of course, I am depressed even though I’m almost adult enough to hide it (I’d be lying if I said I was totally adult enough). I’m horrible to live with. When I’m out, I see other cyclists on their bikes and I scowl. Short of wishing them actual bodily harm, I hate their enjoyment because it feels as if they have stolen my enjoyment. If I were still five years old, I would be stamping my feet and saying ‘it’s not fair.’ I would, in short, be petulance personified.
Peter tells me I will get better, that I will go cycling again and that all will be well. And in all probability, this is true. My shoulder will be healed by a skilled orthopaedic surgeon and I will be nursed back into good health and all that will be left is the tiniest of scars and a small protuberance of bone. So, I will never have a career as a swimwear model – and at the age of 57 I can resign myself to this - because I will be healed. In two months, I will be cycling, running and swimming. Two months!! That’s all. Yet as I heal, a little more of Peter’s brain might have died. As I heal, Peter might have edged a little closer to face his dementia monster. I chide myself for wallowing in my self-indulgent depression.
When we meet for coffee, Peter, inevitably, has a smile and a positive word and it’s very difficult to be grumpy with him. I ask him how he feels.
“Well, here’s the thing,” he says. That’s one of Peter’s favourite phrases and generally precedes something which will blow me away.
“Lots of things are being removed from me. Not just my ability to remember but I feel as if more and more of me being an adult is being taken away. Sometimes I feel like a child. When we go out, Teresa chooses my food - the menu overwhelms me. Teresa leaves me notes, cut the chicken, turn the oven on, put the chicken in the oven. Do the hoovering, do the dusting. She’s not nagging me at all, she has to write it all down for me, bless her, but I feel more and more of me is being taken away.”
He pauses. I know there is more coming. The Peter Berry sense of theatre has not been eroded yet. A drum roll would most assuredly not be out of place now.
“That’s why I’m making the decision against having the next brain scan.”
Of course, he must hang onto some decision-making capacity because I can see he is in danger of becoming as infantilised as he has described to me. But nonetheless I am sad, for him and for Teresa that they are faced with this terrible choice. I wonder what I would do in his position.
With my shoulder I actively want to see the x-rays and scans, I want to see the broken bone because I know it will be fixed. Part of me enjoys the special and sympathetic reactions I get from people when I force them to see my “sticky uppy bone”, as Peter calls it (there is a piece of bone poking through my shoulder which, I must confess, most of Suffolk has been forced to look at with perplexingly differing degrees of gratitude!)
In the same way as Peter would rather not tell people he is living with dementia, he also has no desire to see his broken mind. As I flaunt my temporary disability, Peter conceals his from others and now, it would seem, from himself. He does not want to see the black parts of his brain which are dying off and to know that he’s edging closer to dementia’s next evil chapter and its inevitable conclusion. The juxtaposition between our attitudes and ailments is stark.
He says, “There’s no point worrying about the future. I won’t be part of anyone’s future,” and it is said without a shred of self-pity. Peter has looked at self-pity, the same self-pity that I lug about with me all day, and booted it contemptuously into touch.
When I look up, he is tackling his mountain of cakes and coffee (sometimes he forgets what he has ordered and just has cakes stacked up in front of him like shots of vodka in a bar) and I can see he has already moved on. He is just living for this moment, for the sweetness of the cakes and the buzz of the caffeine (and, unless I am deluded, for the pleasure of the company) and I admire him for this and tell myself to clamber out of my pit of self-indulgence.
So, you see, Peter has bestowed on me a wonderful gift and taught me a valuable lesson. He has taught me to try to live for the moment. And what a gift this is.
Of course, I find this hard to do. I am always searching for something, don’t misconstrue me, I am content, I am fortunate, but I always wonder if there is more to life than I have or perhaps tragedy is just around the corner, waiting to trip me up. The single, special moment which Peter, through his dementia, is forced to live for has always eluded me.
As I reflect on my life, I get the sense that I have been waiting for someone to tell me this, live for the moment, someone who is living proof that this is the only way to live. I have been enlightened by Peter; he has provided me with this unexpected gift. It might not be beautifully packaged with a bow or ribbons and it might not be extravagantly presented to me or have a cute kitten gift card attached to it and, indeed, he might not even know that he has given me this, but, to me and for my sticky uppy bone it is a gift and the timing is perfect.
Living for the moment and living in the moment is like the gingerbread man which Peter has devoured. There is a sweetness to it; it is pure and simple, unadorned by anything extraneous other than the smattering of smarties for buttons and the icing for a smile. And now I want to learn to live like this.
I look at Peter who is wiping his mouth after finally having ploughed his way through his mountain of sugary treats and I know that he’s already forgotten our conversation and, even though I thank him for the gift, he has no recollection of what that gift was but still, being Peter, being the glass half full character that he is, he smiles and tells me I am most welcome.