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    After the Rehearsal Living with Dementia: A Carer's Story
    After the Rehearsal Living with Dementia: A Carer's Story
    After the Rehearsal Living with Dementia: A Carer's Story
    Ebook131 pages1 hour

    After the Rehearsal Living with Dementia: A Carer's Story

    By Jill Grey

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    About this ebook

    At the heart of this book is a carer's story. However, it is much, much more than that. It is a book about being human, about the ups and downs of life, about loving, about trying to make sense and work out, and around the things that life throws at you how you have to find a way of living without ever forgetting your loved one. Beautifully written with love and confidence about a poignant time in the life of a family. The Struggle to retain the self of a beloved husband and father and the harsh reality of living with dementia is all too clear.
    LanguageEnglish
    PublisherM-Y Books ltd
    Release dateDec 1, 2014
    ISBN9781909908826
    After the Rehearsal Living with Dementia: A Carer's Story

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      After the Rehearsal Living with Dementia - Jill Grey

      Thoughts

      The Green Fields Beyond

      When the vicar visited me to discuss my husband’s forthcoming funeral he said, ‘Tell me about you and Chris; tell me something of your married life together.’

      I thought about it, had a ‘light-bulb’ moment and replied, ‘Well, Vicar, I can best describe our marriage in terms of the motto of the Royal Tank Regiment.’

      The vicar, not unnaturally, looked somewhat puzzled and asked me to explain.

      ‘Their regimental tie is made up of three bands of colour, brown, red and green. These three colours represent the Regiment’s motto which is, Through the mud and the blood to the green fields beyond.’

      ‘I still don’t quite understand.’

      ‘That’s pretty much how our marriage was, Vicar, not unlike most couples who have managed to stick it out together, for it’s not easy. We worked our way through the mud and the blood, the difficult times, and finally got to the green fields beyond. The trouble is, Chris and I didn’t have long in those green fields before it started raining.’

      The vicar quickly caught up with my metaphor and his face changed from appreciating the joke to understanding its sadness.

      I have called this collection of stories After the Rehearsal because, on reflection, I realise that the first forty years of our marriage was the rehearsal for what was to follow, the main event: the following eight years of Chris’s extraordinary illness.

      I am writing this account for a particular group of people: people who suspect there is something going on with a family member or a good friend that is rather strange, unusual, out of character. I am writing it to tell what happened to Chris and me; how I found ways of coping with it, with the stony, twisting and turning path we found ourselves on when Chris, at sixty-four, was finally diagnosed with dementia.

      Dementia is assumed to be the unfortunate result of us living too long. I have learned this is not necessarily so. Dementia, in its different forms, is an illness, a disease, not of the heart or the kidneys or the liver. It is a disease of the brain. There are several variations of the disease: vascular dementia, which is what Chris was diagnosed with; Alzheimer’s disease, which is the most common, and there are other variations, such as Lewy bodies and frontal lobe dementia. In recent times a great deal has been written about this brain disease but it is either discussed in papers by eminent professors, self-help books by skilled professionals or autobiographies from celebrities, who, thanks to them, have made the word ‘dementia’ almost as sayable as that dreaded word, ‘cancer’. I hope the stories in this collection might give some support, reassurance or resolve to those who have discovered that they too are walking this stony path.

      My husband, an otherwise fit and healthy man, started with the disease when he was about sixty-two. To some this is regarded as quite young but there are those in their fifties who have it and I know of one lady in her forties who, for a long time, was looked after by her elderly mother. It is important to stress, however, that the effect of this illness is pretty devastating no matter how old its victim. As at May 2014, all the diagnosing is done in the National Health department of our society but afterwards the patient is referred to as the ‘service user’ because they are then in the hands of Social Services, funded not nationally but locally, by local councils.

      There are many questions the person (wife, husband, son, daughter) now described as the ‘main carer’ has to face and then to answer. All these questions must be thought through and sensibly dealt with while that carer is coping, hour by hour and then year by year, with someone to whom they are emotionally tied.

      You have to deal with all the paperwork, not least the requirement to get power of attorney while the sick person can understand and still manage physically to sign the document; the same applies in the writing of wills. There are forms to be filled in regarding attendance allowance, possible carer’s allowance and possible changes to the council tax. These essential pieces of bureaucracy sometimes have to be addressed when the person being ‘cared for’ is in complete denial that anything is wrong with them at all. It is extremely difficult. And at the same time, as the carer, you are beginning to experience a long period of private grief that has no immediate end in sight.

      Chris, even in this early stage, could no longer remember how to sign his name. I had to write it to as near a likeness as I could and then he would copy it perfectly well on to whichever document we were dealing with. This usually had to be performed in front of other people and it was a very painful thing to cope with. Having previously explained and discussed the matter with Chris and having reassured him that all was well, I behaved as though this was a perfectly normal thing to do, then dared them, with a look, to remark on it. It usually worked but it was deeply upsetting for me.

      It occurred to me that Chris’s and my experience could be put to good use. I can show, in bite-sized stories, how I tried to cope with problems as they emerged. I will simply describe how it was, not through the eyes of others whose journey may be different, but how it was for Chris and me. For although it is different for everyone, many events are similar and it’s amazing how reassuring it can be to hear oneself saying, ‘It’s just like that for us!’

      Perhaps someone reading this will relate to something I’ve written and realise they are not alone or maybe a carer will learn that it is OK to accept help, that no one is judging them. It is all right to feel angry, guilty and even bereaved. I hope too that someone who has never personally come across the disease of dementia might read the odd story and have their eyes opened as to the nature of the illness.

      I have chosen to write our story in the form of individual ‘snapshots, or ‘moments in time’ for two reasons. Firstly, as a single story, I think you would get very bored with my describing the constant day-to-day difficulties of caring for my husband and secondly, and more importantly, for those finding themselves in a similar caring role, the idea of settling down to an entire book is pretty much pie-in-the-sky. These individual stories, however, describe events in a way that will allow you to read them (and possibly even identify with them) when you get a break.

      I don’t write about Chris in the latter part of his illness, when he became dependent on round-the-clock care. In thinking about how to put this book together it was very important for me to retain a sense of who he was. I hope I have struck the right balance between sharing some useful experiences with the reader as well as maintaining the dignity of the man I married.

      I’ve tried to keep our story fairly light or you could be in danger of wanting to stick pins in your eyes and that wouldn’t do. The first three stories are about events that happened earlier on in our lives but they are here to give a flavour of who we were and they each have their own significance. Two of them are written in the third person where ‘I’ became ‘she’. I’ve wondered about that and have concluded that those occasions, for different reasons, are so powerful in my memory I wanted to describe them as if they happened to someone else and then, like gazing at a precious picture, I can stand back and enjoy them.

      Scattered among the stories are five short poems. ‘A Small Irony’ and ‘Remembrance’ arrived as a result of muddled thoughts, scribbled down at the end of the final day when staying with my son, Christopher, before returning home the following morning to gather up my husband after his first session of respite care. The following days and weeks, when I had the opportunity, found me working on not one poem but two. ‘A Small Irony’ expresses my anger and frustration but ‘Remembrance’ became the trigger for the sadness I felt. ‘Blue Tunics’ is self-explanatory and heartfelt, ‘Tomorrow’ expresses my fear of my changed future and ‘New Moon’ is simply true. I returned home from that unexpected holiday and found myself gazing up at that same moon, now full. It gave me pause for thoughts I then transcribed in to this poem.

      Below, I have included a résumé of Chris’s life. I have been guilty of wanting to bawl at this person or that person, ‘He was a real bloke once, you know, and a man to be proud of!’ Any of you in a similar situation will know exactly what I mean and, to me, it was vital that I, family, friends, anyone having dealings with him, should remember the person who owned that body before the illness set in.

      Christopher John Grey was born in the village of Upwey, near Weymouth, Dorset, in 1935. He passed the scholarship for the Grammar School and at the age of 12, after further exams and interviews, was invited as a scholarship boy, with a bursary, to board at Eton College, Windsor. Once at this historically upper-class school, he initially found it difficult to integrate but he found himself at ease and connected with other pupils once he was on the sports field.

      At eighteen he entered National Service. He was commissioned, after a fairly hair-raising officer training course where one trainee committed suicide and another shot himself in the foot

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