“Life with Dementia isn’t over - it’s just a little different”, these are the wise words from the fabulous Peter Berry. Peter was diagnosed at the age of 50 with early onset Alzheimer’s. Previously the owner of a thriving timber business, Peter was suddenly unable to work or run the business.
“I have always had a passion for cycling and now that I cannot work, I have more time to cycle. So, there you are - Despite dementia stripping me of so many things, that’s me taking back from dementia. It’s not a one-way street after all.”
After the diagnosis Peter focused on his main passion for cycling, he uses this passion to raise awareness of the condition, particularly for younger people and set up a wonderful website www.peter-berry.com to help inspire others.
Peter, accompanied by his incredibly supportive friend Deb, are a part of AlzAuthors through the writing of their books, "Slow Puncture” and “Walk With Me” with the shared vision of lifting the silence and stigma of Alzheimer’s and other forms of dementia. Both of these insightful books can be purchased here.
We are incredibly grateful to have the opportunity to share this beautifully written blog by Deb. We are sure that you will enjoy reading this personal and insightful blog just as much as we have in the office!
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.
Here's how Access Care can Help: For Those Who Don't have a ‘Deb’
If you don't have the fortune of having a Deb by your side, a Live-in Carer can help fill that gap and make a significant difference in the lives of those living with dementia.
Much like Deb, our home carers offer empathy, commitment and can greatly enhance the quality of life for those affected by dementia, enabling them to continue living in the familiarity of their own home and helping to pursue their passion’s.
We might not be able to offer you a Deb, however, we do have a Silvija, Freda and a Jackie who share the same heartwarming understanding of the world their clients live in.