I was recently contacted by Tania Buckley from access-care.co.uk asking if I would write an article about Peter for their website. When I chatted to Tania about possible ideas, I remembered something Peter had recently said to me. In his inimitable way, Peter compared living with his condition to wearing a "tatty coat of dementia".
I allowed myself a wry grin when I got off the phone with Tania and re-read her email and saw that she liked to be called Tatty. But I’m sure she knew what I meant!
Thank you, Access Care for a) giving me the opportunity to flex my literary muscles and b) for publicising our website, our books and our friends from AlzAuthors. Networking at its finest!
And if you don't want to click the hyperlink to get to the article, I have helpfully pasted it below. No excuses now...
THE TATTY COAT OF DEMENTIA
“It’s up to those who don’t have dementia to enter our world.” This is one of Peter’s favourite themes. Such is his profound impact on me, I can almost hear his voice as I sit at the computer.
So, what does Peter mean? What is his world like? And, most importantly, how do we enter it? Over the last few years, Peter has provided me with a couple of keys to unlock the door into his world: they are by no means master keys but with a bit of cutting and shaping they might unlock others’ doors.
“When we draw a picture for a four-year-old,” explains Peter, “we don’t draw the Ely Cathedral or Brunel’s bridge …no, we draw a stick mummy and daddy, a stick flower, maybe a stick dog. We get into the four-year old’s world. Now I’m not saying people with dementia are like four-year-olds but I am saying if we can adapt for children, why can’t we adapt for people with dementia?”
It’s true that Peter’s view of the world is obscured by blinkers, he can only see what’s immediately around him. He can’t look back or from side to side and he certainly can’t see too far ahead. His is a narrow “here and now” world. So why would we talk to him about things which he can’t see or about which he has no recollection? Why exclude him? Why, effectively, would we isolate him and push him into that lonely corner where cobwebs hang and ghouls prowl? It’s up to us to adapt and accommodate his lack of memory and to understand the inherent frustration he feels when he is pushed into the corner; it’s up to us to prevent this isolation. And it’s up to us - not only to avoid putting him in this lonely corner - but, if we do, to ensure that we don’t leave him there. In short: it’s up to us to present him with a world which we can all inhabit and in which - together - we can find the joy.
The master of the unexpected metaphor, Peter recently said that living with dementia is like wearing a tatty coat around the house. It’s comfortable and it doesn’t matter that it’s frayed and it has holes in it. But would he wear this coat when he goes out? Of course not. People would point and stare at him and he would be labelled - “there he goes, that’s the man with dementia, you know.”
“After all,” Peter tells me, “People with dementia don’t pretend to have dementia, they pretend NOT to have it”.
And so, when Peter does go out, that tatty coat is dropped disdainfully in a heap on the floor (actually, knowing Peter and his propensity for being neat and tidy, it’s probably hung up but you get the gist).
When Peter goes out, he drapes himself in cloth of gold, of glitter, with shimmering, sparkling sequins which glint when the light catches them. There he goes, that upright and proud man, in his special coat. Look at him: he doesn’t have dementia, you know. He walks on, nods at people whom he doesn’t recognise, jokes with others equally unknown, all of whom know him and make the erroneous assumption that this is reciprocated knowledge. It isn’t; this is the first time in Peter’s world that he is seeing many of these people. But remember, he is the consummate showman in the thespian’s magical coat. And we must all play our part in making the magic happen.
So, imagine you are walking alongside Peter - how DO you do enter his world? Here is one simple example: when you meet someone in the street, drop that person’s name into the conversation, contextualise things for Peter, ask that person if they are still cycling, working at the supermarket. His world is just a sketch, amorphous in form, grey in colour. To bring it to life, he needs us to create a solid shape, he needs us to fill in those colours. Enter his world. Surely, with a little bit of thought, it’s not that difficult. And I fully acknowledge there may be an element of tedium for us, having to repeat or summarise in order to facilitate this process but I would suggest it’s far more frustrating and damaging for Peter to be excluded than it is for us to repeat ourselves.
By entering Peter’s world, you will be encouraging him to wear the smart coat and helping to reduce his isolation. If you stop, the coat becomes tight, it begins to pinch. His fingers will edge around the collar to loosen it. Peter may not want to go home and put the tatty coat back on but he certainly needs to. Perhaps he even starts to yearn for that tatty coat. Maybe there is an uncomfortable familiarity in the frayed sleeves and the flakes of faded glitter which fall and swirl, ephemerally, to the floor.
I know I am using Peter’s well thought out metaphor and taking it to the extreme but the point I am making is the need for thought and inclusivity; for adaptation and understanding. Do not be deceived by his finery. Do not get swept along by the showman. Instead, enter his world because if you do that, you will help him find the colour and form, you will help him to open the box full of joy and memories and the tatty coat and its faded colours might even start to sparkle again.
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