It was said of my namesake when he was the British Prime Minister that his besetting sin was that he believed in the innate goodness of humankind. It can be said of Malcolm Goldsmith in the writing of this book that his great virtue is his passionate belief in the innate goodness of God.
God is the umbilical cord which sustains every human being. God is there when all that seems left of a person is an empty shell, a caricature of what it means to be a person. For the author, this is not just faith in the face of evidence to the contrary. He has learned this from experience and from over forty years as an Anglican priest. He has stories of parishioners who at the point of death and in a near vegetative state respond to a prayer with an 'Amen' or with some other affirmative response. He has learned that in the transaction with a person with dementia he can meet God. "I believe that there is no-one of whom it can be said that the Spirit of God cannot penetrate their troubled mind".
It is upon such faith and experience that the pages of this book are written. Indeed we are privileged readers for there are not many people who write about both spirituality and dementia. Malcolm has researched, lectured and published on dementia for the past ten years or more and it is a testimony to his communication skills that he has been able to synthesise this with his understanding of spirituality and religion to give us this accessible practical guide.
Combining the academic and the practical, dementia insights and theological conviction, he explores the person-centred approach to dementia care and provides a resource for shameless plundering and referencing by carers and for those of us who have, or have had, relatives with dementia and who want to hang on to the person and address the person rather than the illness.
Malcolm meets the challenge of this head on. For him, the person with dementia remains a person up to the point of death. That person is sanctified ground, whether he or she is in hospital, in residential care, in church or at home, and however lost the former self seems to be. As carers we have to develop our personal resources to treat them as such.
This book has been salutary reading for me. My mother-in-law died recently with multi infarct dementia, after living with my wife and me for several months before being admitted to a Christian nursing home where she was well cared for. She died contented, with my wife by her bedside.
My own mother had Alzheimer's for more than ten years. For half this time she lived with my sister and her family but for more than six years the illness was chronic and precipitated a move to a nearby nursing home. My sister was the principal family carer and visited her almost every day. The toll on her was great, and to this day I believe that the worry contributed to her getting cancer and dying at the young age of fifty-nine. I realise now that the visits I made to my mother were sporadic, partly because I lived over three hundred miles away, but also because I no longer saw her as a person. Atrophied to the foetal position, she was incapable of sight recognition, of speech, of sensory perception and she depended totally on her carers for her every need. I could not see beyond the 'body, brain and breath'. On several occasions I was tempted to give her a big hug and a kiss and to place a pillow over her face with the words: "Good night, God bless, mum". I never did, but was appalled when summoned suddenly to her side in hospital when she was thought to be dying, to discover my sister trying to feed her to keep her alive and arranging that she be given antibiotics to fend off a 'flu virus.
Today I realise that my sister saw our mother as a person, whilst I saw her as a non-person, a mere shadow of someone who had died years before. Had I read this book then, I might have been able to see my mother as the person that she still was, and this would have enabled me to play my part more fully, visit her more often and also relieve the pressure on my sister.
This experience may be familiar to some of you. You too may think "If only . . .". But we cannot live in the past and one of the many strengths of this book is that it helps us deal with our guilt and with our weaknesses in the face of dementia. We learn that we too are loved by God in the same way as those with dementia.
The Psalmist asks "How can we sing the Lord's song in a strange land?". This is both the challenge and the opportunity for the carer, whether a relative or a professional and for the person with dementia. The book answers with a: "Try this". We are given a whole raft of ways to write a new song which gives dignity to all concerned. We learn about the positives of an early diagnosis, how to understand and communicate better with those who have dementia and how the churches can adapt and make accessible their message both to carers and to people with dementia. We are given prayers and reflections at the end of each chapter. The book is a mine of information and of practical suggestions - a must for every church congregation, residential home or family where there is dementia.
Over time churches have adapted to make provision for women, for people with different coloured skins, for those of different cultures and orientations. There is now legislation to make buildings accessible for those with physical disabilities, and every church must have a Handbook on Child Protection. Perhaps the time has now come for every church to have a book such as this in order that no-one, but no-one, is left alone and forsaken in that 'strange land' of dementia.
Of course this book is not prescriptive enough to write a definitive 'song'. But it does offer us many tunes which, if used, will give dignity to the increasing number of people, including ourselves, who have or who may develop some form of dementia.
It was Martin Luther King who wrote words which Malcolm could just as easily have written: "When our days become dreary with low hovering clouds and our nights become darker than a thousand midnights, let us remember that there is a great benign Power in the Universe whose name is God, who is able to make a way out of no way and transform dark yesterdays into light tomorrows".
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INTRODUCTION
How shall we sing the Lord's song in a strange land?
The purpose of this book is to affirm and facilitate an awareness that people with dementia are unconditionally held within the love of God, and that it is part of the calling of the church to minister to them with sensitivity and compassion.
It is written primarily for church leaders, be they lay or ordained, in the hope that it might encourage and support them in this difficult and demanding area of ministry. I hope that it will also be of support and encouragement to those who carry the burden of care, whether within a family or a professional capacity. Finally, if it can offer any words of hope to people with dementia themselves, then I shall be profoundly moved.
The text draws upon the insights and work of a great many people; that is quite deliberate. I want to demonstrate that there is now a large number of people who are committed to exploring and honouring the experience of dementia. It is an invisible community of care and concern, whose desire is to ease the pain and confusion that is invariably associated with dementia, and to offer greater understanding and encourage good practice in diagnosing, standing alongside and caring for people with dementia.
I have endeavoured to give full references, so that those who wish to might extend their reading and follow up particular points in greater detail. However, the text can be read straight through by ignoring the referencing system.
One of the problems that anyone faces when writing about dementia is the fact that we are focusing upon an illness or disability that can affect someone over a long period of time, for perhaps fifteen years or so although usually not so long as that. This time span covers the progress from normal health through until death. It is therefore very difficult when reading about someone with dementia to know just whereabouts on that time scale the person might be located. The early period may last for five years or more, during which time a relatively normal and reasonably independent life can be lived. Later periods however, will see the person severely cognitively impaired and needing a considerable amount of supportive care. So there is a sense in which to write about 'a person with dementia' can be a very loose and generalised thing to do, in reality, telling us very little. Added to this is the fact that no two people are the same, nor are their circumstances and patterns of relationships. Great care must therefore be taken and the limitations of language understood, accepted and allowed for.
In describing where we are in Dementia Care I often suggest that it is as though we are facing a vast ocean and we have only just begun to step into it and get our feet wet. It is my hope that this small book will give us the confidence to take another small step forward into the ocean of the unknown. Because I write from within the community of faith, I dare to believe that stepping out into the unknown is often a characteristic of discipleship:
keep me travelling along with you.
Words from a hymn by Sydney Carter, who was himself to travel into the strange land of dementia. I really do believe that our commitment to and care for people with dementia is one of the great tasks that is set before our churches today.
At around the same time that Dr Alois Alzheimer was challenging our understanding of people who were cognitively impaired, Dr Albert Schweitzer (1910) was challenging our understanding of God's presence in the world and his will for his church:
He comes to us as One unknown, without a name, as of old by the lakeside, He came to those who knew him not. He speaks to us the same word 'follow thou me!' and sets us to the tasks which He has to fulfil for our time. He commands. And to those who obey Him, whether they be wise or simple, He will reveal Himself in the toils, the conflict, the sufferings which they shall pass through in His fellowship, and, as an ineffable mystery, they shall learn in their own experience Who He Is . . .