Peter Kaye - Balls in a Sandwich

Balls in a Sandwich

Peter Kaye

Copyright 2017 Peter Kaye

Robert Frost quote taken from Poetry of Robert Frost by Robert Frost published by Jonathan Cape. Reproduced by permission of The Random House Group Ltd

The moral right of the author has been asserted.

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Sam, Ian, Joe and Katie

and all those who give over their lives

to care for others

The last time I saw you you were in the care home. You were squashed uncomfortably into the concertinaed folds of a mechanical bed. You were only part there. You barely recognised me and were unable to converse about the strange and wonderful repetitions that ran through your mind as we used to. You said you had not had lunch - they said you had - I think you must have refused it. You were tired and sleepy but you were hungry. I stood at the top of your bed next to your soft face with sore lips. I diligently placed tiny chopped up pieces of prawn into your mouth and you obediently and hungrily accepted them. Then tiny pieces of strawberry, which you would chew uncomfortably, swallow and then gently open your mouth to receive the next miniature morsel. You were palpably uncomfortable so I followed your instructions to manoeuvre that mechanical bed into a new position. You wanted to lie back and I was very scared that you would choke in your altered position but you were very insistent. You slept. I left you.

Mary with love

Cover illustration : Bet (2017) by Mary Trapp. Gouache and graphite on wood (61 x 44 cm)

Copyright @ 2017 Mary Trapp

www.marytrapp.co.uk

My thanks to all my family, friends and members of the medical and support teams who have enabled me to reflect, to write and to find laughter once again.

Peter Kaye 2017

This is the day I begin to write. This is the day when I test my courage and inner strength. Part of my soul yearns to be free of the turmoil of the last couple of years; to escape the carers so-called selfless role; to banish medical terms of motor neurone disease and frontotemporal dementia to the trash bin of human frailty and to salvage what is left of my life. There has to be more than self-pity and endless blubbering tears. I have survived my first Christmas without my Bet; I have cooked Christmas lunch for what remains of my lovely family; I have forced myself to become the last minute addition to other family gatherings and, more than that, I have summoned all the brio and bravado I could muster and told everyone that I would now write a book.

Im not sure of my motives. Im no longer sure of anything in life apart from the certainty that one day it will end. Writing may prove therapeutic; cathartic is a good word which well-meaning friends have added to this scenario. It may, however, just condemn me to flounder even longer in this nightmare existence. It will certainly mean that I have to delve deeply into memories and these are not always the happiest of reflections. It may enable me to recapture times before dementia stole Bet the lovely girl who had been my best friend for 56 years. It may even air brush the images of a beautiful, respected body wrecked by a disease for which there is yet no effective treatment or cure.

And you the reader? How should you react? Maybe it is reassuring to know that others have faced the same uncertainties and fears that now are frightening you? Hardly comforting, I know, but sometimes it can be of help just to step off from the carers constant treadmill and even a brief glimpse of a life beyond can offer hope. If you are now reading this book you will know that I have survived and been able to create something tangible, and hopefully worthwhile. You may not, of course be a carer. You may have opened this book because of its title. In which case I hope you are not too disappointed!

Now I have to complete this task. There can be no excuse. I do have the title. And you must admit that it does have rather a catchy lilt.

I want your balls in a sandwich were the last intelligible words that Bet uttered to me. I wish I could say that they were delivered with a hint of lust with just an intimation that our life together had been fun and fulfilled. No. It was delivered with the same degree of venom and hatred that had epitomised our last two years together. That vindictiveness that is so often a result of dementia; that acrimony that the medics will re-assure you is always directed at the one who is most loved; that constant hostility that becomes almost impossible to endure.

Survival dictates that one must search out the positives in life; that one should find humour in the darkest of situations. So please read on.

This book is based on my rough notes written from September 2015 when Bet finally went into permanent residential care. They were scribbled freely on train journeys or whilst waiting for my dinner to cook. I felt the need to voice my feelings and my fears. I am not sure, at that stage, that I ever considered that they would form the basis for a book.

Perhaps a brief geographical synopsis of our lives together may help you weave through my ramblings