Nula Suchet - The Longest Farewell: James, Dementia and Me

The Longest Farewell

To my darling James,
and to Bonnie and Phil The Trinity.

Seren is the book imprint of

Poetry Wales Press Ltd,

57 Nolton Street, Bridgend, Wales, CF31 3AE

www.serenbooks.com

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Nula Suchet, 2019

The rights of the above mentioned to be identified as the authors of this work have been asserted in accordance with the Copyright, Design and Patents Act.

ISBN: 9781781725184

Ebook: 9781781725191

A CIP record for this title is available from the British Library.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted at any time or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior permission of the copyright holder.

The publisher acknowledges the financial assistance of the Welsh Books Council.

Front cover image: James, before the onset of dementia, summer 1994

Back cover image: Trekking with John to Machu Picchu, spring 2018

Printed by Bell & Bain Ltd, Scotland

I loved you first: but afterwards your love

Outsoaring mine, sang such a loftier song

Christina Rosetti

My husband James is changing and I dont know why. Nor, if Im absolutely honest, do I want to think about it because if I do I start to feel scared.

Hes not himself.

I dont mean by that that hes feeling ill, its just that he is not on top of things, and that is uncharacteristic. He isnt organising his work desk or bothering to tidy away things in the kitchen, which hes always done before and, more unsettling, his personal hygiene has slipped. Im constantly making allowances: maybe its the odd-sock-wearing nutty professor coming out in him, a characteristic of the distracted creative hes a writer, after all. That must be why hes forgetting to clean his teeth.

Im doing my best to adapt to his strange moods and the odd things he does. I find myself brushing the starker facts under the carpet: hes stressed, theres too much on his plate, hes getting scatty in his old age.

But the thing is that James isnt very old: hes only fifty-seven. Surely he shouldnt be losing his keys and glasses quite so often, or leaving his favourite jacket and valuable wristwatch on a film shoot, or his passport on a plane? And why is he forgetting to return important work calls? That I find really worrying. Its not like him at all. He lives and breathes his work, hes in it day and night, often compulsively, writing screenplays and documentary scripts about the subjects closest to his heart. James has enormous empathy for the struggling man and especially likes stories about people who have overcome huge challenges. Im beginning to wonder: are we about to have challenges of our own to deal with?

But Im not going to think about anything like that, at least, not yet. Hes just stressed; its a phase well have to get through, thats all.

* * *

Its hard to tell when the first signs of Picks Disease, a particularly brutal form of dementia which affects the frontal lobes of the brain, started to show in James. But this is the beginning of what was to be the most terrifying and painful journey of both our lives. Its a condition that can affect men and women in their prime, like James, and there is no cure. Patients and their carers usually find themselves cast off by the medical profession Sorry, theres nothing more we can do for you and adrift on an increasingly turbulent sea. Thats how it was to be for us for eleven soul-destroying and utterly frightening years.

Just when things were becoming so bleak once James was living in a care home I found a friend whose wife Bonnie was in the same care home, also with early-onset dementia. John became my comfort, and for a couple of years there were four of us inextricably entwined in the strangest dance of love and care. It helped me so much to talk to someone who was experiencing so many of the same things.

At some point during Jamess life in the care home I wrote a memoir of what had been happening to us both, which came out in a torrent of words on the page. It was only later that I organised it and added a few short commentary paragraphs, tempered by the benefit of hindsight.

At the beginning I was full of incomprehension. How could this be happening to James, of all people? He had always been a brilliant man, talented and bright-eyed, with a wealth of emotional intelligence. How could this quicksilver, funny, logical and sensitive mind be attacked in this way?

* * *

James was born and brought up in Belfast in a very loving family. He passed his eleven plus and moved on to grammar school, and from there he went to London where he graduated with a degree in Economics and Politics from the London School of Economics. But he wanted a career in television as a cameraman.

As a young lad in the streets around the Falls Road, he had watched the BBC camera crews filming the Troubles in Belfast. It triggered in him a huge fascination with the whole process of telling a story to camera. After the LSE he got a job as a researcher with the BBC, before applying to train as a cameraman. He competed with over a thousand applicants and was thrilled when he was accepted for the prestigious course. He would go on to win many awards for his camera work, on programmes like Panorama, Z Cars, Play of the Week and on many documentaries, before graduating to writing and directing his own programmes.

For standing in your heart,

Is where I want to be, and long to be;

Ah, but I may as well try and catch the wind.

Donovan

James has lost all interest in cooking. I cant remember the last time he made one of his Indian curries. When hes not filming and Im working, he always does the food shopping and cooks the evening meal for my return. He spends hours choosing the spices to marinate the meat, and his food is beyond delicious.

Now it feels like an age since I last came back to a steamy kitchen, redolent with the smell of spice so warm and welcoming with Lucy and Spanny, our two dogs, milling around his feet while he moves happily about.

Kathleen, a local girl who comes in four hours a week to help with the housework, has noticed things are different with James.

I dont think James is himself. Theres something not right. Its not like him to leave all the dirty dishes piled up in the sink, she tells me worriedly. And hes leaving food uncovered. Not putting it away in the fridge anymore.

This is not James.

Around this time, I take James to the doctor. Hes been complaining of a pain down his left leg and is having difficulty passing water. This isnt the first time Ive tried to have it checked out but in both cases the tests have come back negative.

This doctor is a family friend. He listens as we tell him the symptoms, then concludes that its just a case of James being neurotic and possibly suffering from mild depression.

He gives his diagnosis, smiling. James, I can find nothing wrong with you. I suggest you get out of the house, stop writing and get into the real world. Get back to directing and mixing with people. Earn some money.

Im annoyed by the doctors unsympathetic attitude. But one thing is true, James hasnt been getting out, and all he seems to want to do is closet himself away to write. And never mind earning money James is no longer paying the bills. Hes leaving them unopened, not from any fear that we havent the money to pay them, but due to this new and growing incapacity that steals daily over his life.