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Telling tales about dementia: experiences of caring

Telling tales about dementia: experiences of caring

Whitman, Lucy, 1954-

30 carers of different ages, backgrounds and circumstances share their experiences of looking after a parent, partner or friend with dementia. Their stories reveal that the quality of diagnosis, treatment and care in the UK is, in many cases, unsatisfactory

Book. English.
Published London: Jessica Kingsley, 2010
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Details

Statement of responsibility: edited by Lucy Whitman ; foreword by Joanna Trollope
ISBN: 1843109417, 9781843109419
Note: Includes bibliographical references.
Note: Book Prescription Scheme: Dementia.
Note: Books on Prescription: Dementia.
Physical Description: 222 p. : ports. ; 23 cm.
Subject: Dementia Patients Care.; Caregivers' writings.
Added Entry: Books on Prescription : Dementia.; Book Prescription Scheme : Dementia.

Contents

  1. Foreword.
  2. Preface.
  3. Acknowledgements.
  4. Introduction.
  5. Section 1
  6. Living with Loss.
  7. 1. A Big Enough Supply of Love.
  8. Maria Jastrzebska.
  9. 2. We Don't Know What is Going Through Her Mind.
  10. Jennifer Davies.
  11. 3. The Departing Light.
  12. Jim Swift.
  13. 4. Walking on Thin Ice.
  14. Rachael Dixey.
  15. 5. The Most Difficult Decision of My Life.
  16. Debbie Jackson.
  17. 6. We Learn to Enter Her World.
  18. U Hla Htay.
  19. 7. Half a World Away.
  20. Anna Young.
  21. 8.Have You Seen My Pat? Pat Hill.
  22. 9. Feisty Love.
  23. Maria Smith.
  24. 10. Glimpses of Glory on a Long Dark Road.
  25. Helen Robinson.
  26. 11. Our Mum Had To Be The Man of The House.
  27. The Malik Family.
  28. 12. On The Contrary.
  29. Lucy Whitman.
  30. 13. Family Matters.
  31. Ian McQueen.
  32. 14. Back and Forth.
  33. Geraldine McCarthy.
  34. 15. A Very Important Moustache.
  35. Steve Jeffery.
  36. Section 2
  37. Despatches from the Battlefield.
  38. 16. This Has Gone Beyond My Mother.
  39. Marylyn Duncan.
  40. 17. Rage, Rage.
  41. Jenny Thomas.
  42. 18. Forever in My Thoughts.
  43. Rosie Smith.
  44. 19. A Sister's Story.
  45. Peggy Fray.
  46. 20. Surely the World has Changed.
  47. Roger Newman.
  48. 21. Look Back in Anger.
  49. Shirley Nurock.
  50. 22. Cracks in the System.
  51. Pat Brown.
  52. 23. Strained to the Limit.
  53. Andra Houchen.
  54. 24. Break on Through to the Other Side.
  55. Louisa Houchen.
  56. 25. Rocking the Boat.
  57. Sheena Sanderson.
  58. 26. The Significant Other.
  59. Brian Baylis.
  60. 27. An Instruction Manual for Keeping Your Mind.
  61. Gail Chester.
  62. Section 3
  63. Keeping In Touch, Letting Go.
  64. 28. When Words Fail.
  65. Barbara Pointon.
  66. 29. The End of The Story.
  67. Tim Dartington.
  68. 30. State of Grace.
  69. Rosemary Clarke.
  70. Glossary.
  71. Recommended Reading.
  72. Helpful Organisations.
  73. The Contributors.
  74. What is for dementia?

Author note

Lucy Whitman is a writer, editor and trainer, and a former teacher in further education. She cared for her mother who had dementia, and this inspired her first anthology, Telling Tales About Dementia: Experiences of Caring, a collection of person accounts by people who have looked after someone with dementia. Her new anthology, People with Dementia Speak Out, a collection of personal accounts by people who have a diagnosis of dementia, will be published by Jessica Kingsley Publishers in 2015. Lucy has worked extensively with family carers, and writes regularly for the Journal of Dementia Care. She works as Community Engagement Officer for Healthwatch Enfield.

Reviews

There is much to be learned from these thirty moving and beautifully written stories of carers looking after people they love and who have dementia. The accounts are all very different and each has something special to tell us about the centrality of relationships and life histories in understanding and caring for anyone.||This is a powerful collection of first hand accounts by 30 people who have cared for a person with dementia... The contributors are commendably diverse in terms of ethnicity, age, gender and sexuality. They include spouses, children, siblings and friends of the person they care for... Carers of people with dementia are the main audience for this book, and they will find much to identify with and much to support them... It is equally important that professionals read this kind of book, and not just those with a specialist knowledge of dementia, as one of the key messages is a failure to recognise and understand dementia. Taken together these short stories are probably more effective than a shelf full of dementia strategies and books about person-centred care.||As a practitioner in dementia support, I found this book inspiring. With dementia rising up the healthcare agenda and the government's dementia strategy acknowledging the scale of future needs, it is important to listen to the voice of people living with dementia in service planning.||These powerful stories should be read by everyone involved in health and social care, from commissioners designing services to those giving direct care and support. I hope they will also be read by those who have had no previous contact with dementia, to help combat the stigma it still carries through lack of public awareness... The accounts are moving, engrossing, sprinkled with quirky humour, and truthful. There is both warm praise and angry criticism of services. I hope the book will play its part alongside the National Dementia Strategy to help eradicate some of the glaring bad practice it highlights... Vivid personalities shine through, reminding us that every person with dementia, every carer and every caring relationship, is different and individual, therefore services need to be sensitive, personal and flexible.||Every one of these stories is a jewel-house of observation, dedication and feeling. Every one can and should be used to teach us as individuals and in reflective groups - be we informal (family) carers or professionals... This is a wonderful book which we must be thankful for and make good use of.||Telling Tales About Dementia: Experiences of Caring offers experiences from some thirty care givers from different backgrounds and circumstances who describe their experiences caring for a partner, parent or friend with dementia. Any affected by dementia in either a professional or personal realm will find this collection eye-opening, engaging, and educational.||This anthology... is a captivating and essential read for all professionals trying to understand and help families caring for a loved one living with dementia. Echoes of indifference in the face of family devotion and upset stand in distressingly sharp contrast. I was left in no doubt that all health and social care practitioners, including those working in care homes who read these tales will be unable to stop themselves looking at what they do and asking can we not do better?||Story-telling is a compelling way of shedding light on difficult situations. No two families are the same and it is impossible to generalise about the impact on relationships of a condition like dementia. Reading about individuals, however, offers an insight into the changes dementia can bring. A strength of this book is the variety of situations and relationships it covers. There are families from different cultures as well as gay and lesbian carers, who help us see some of the special challenges for carers from minority groups. There are a disproportionate number of carers looking after people of working age with dementia, but this is helpful as the situation of younger people warrants greater attention and awareness. Photographs break up the text and bring the stories to life, adding to the vivid impression that the reader is being invited into the carer's home to meet the person for whom they are caring.||... these 208 pages (with additional glossary, lists of recommended reading and helpful organisations), does have genuinely uplifting moments, sprinkled among the diverse and informative case studies: this is a genuinely moving document, and the wealth of experience drawn on merits careful consideration... Given present estimates that there are 700,000 individuals in the UK experiencing some form of dementing illness, books such as this serve a valuable purpose.||Telling Tales is a testament to human attachment, resourcefulness and humour in the face of immense challenge. It is a compelling read.||On reading a book like this one learns to brace oneself for raw accounts of the losses which go along with dementia, the hugely difficult and complex situations people have to deal with, and painful examples of lamentably poor care or even abuse. There is a great deal of honesty and directness here, and the very real pain, anger and guilt which those close to the person with dementia experience as a result comes through loud and clear. But there are also examples of highly sensitive and loving interventions, as well as precious and sustaining moments of shared joy, humour and gratitude. These remind us that dementia does not have to be all about deterioration and grief, and there are many opportunities to learn and grow.
-Kate Allan, Faith in Older People||I know of no book at all comparable to this recent Jessica Kingsley publication... Telling Tales about Dementia will be a great encouragement to other carers. They will feel in the company of those who do understand the agony and the poignancy from the inside. It also has so much to contribute to the understanding and training of professional carers. It is devoutly to be hoped that, as the government's national dementia strategy is implemented, it will address some of the vital concerns so vividly depicted in this book.||These personal accounts by family carers, harrowing, distressing, but also inspiring and uplifting, will have you weeping one moment and laughing the next, as they describe struggling to manage situations that range from horrific to comical. How do you cope alone with your loved one's slow loss of rational thought and behaviour? You cannot - and you need not. The single most valuable achievement of this book is to tell carers they are not alone. The more of us there are, the stronger we become, and the better we can fight for our loved ones in the face of this cruel disease.||This book will speak to other carers who will empathise with or learn from different chapters. However, the narratives across the chapters also provide strong lessons and experiences that both increase understanding and highlight key issues for a much wider audience - particularly for formal carers, service developers, policy makers, commissioners and anyone with an interest in improving the experience of living with dementia for both the person and their close friends and family. Central to this is the importance of relationships in all their complexity and form: the book illustrates this fundamental importance beautifully.||These accounts are a tribute to the abiding insistence on according dignity to every one of us until our last breath. Reading these stories will make us all, in the words of one of the contributors, "determined to make a difference".||Despite the increasing number of books on caring for a person with dementia, few capture the perspective of the carer to the degree managed by Lucy Whitman in her edited book Telling Tales about Dementia... Together the real-life stories provide a range of insights into: the grief and stress of losing a loved one to dementia ('Living with loss'); managing the challenges of dealing with the care system ('Dispatches from the battlefield'); and maintaining communication with a relative with advanced dementia and/or keeping them company at the end of life ('Keeping in touch, letting go'). These are supplemented by a very useful contextualising introduction by the editor, and some recommended reading and a list of helpful organisations at the end. These moving and personal stories, which are a mixture of the voices of the carers themselves and a transcription of a discussion with the editor, evidence the complexity, pain and variety of both "having dementia" and dementia caring experiences. The fact that some of the tales are accompanied by photographs, that one contribution is in the form of a poem and that the tales are from carers from a variety of backgrounds strengthens the book's capacity to provide a genuine cornucopia of human experience "warts and all"... One the most powerful dimensions of the book is its multiple perspectives and inspiring portrays of astonishing levels of stoicism, devotion, resilience and love displayed by "ordinary" people for their relatives and friends with a chronic, disabling and distressing condition...The book unashamedly adopts the subjective experience of dementia caring as its standpoint and offers a rich source of raw evidence about what it is like to care for someone you love with dementia in the real world, right now.||The stories of these carers - sisters, brothers, husbands, wives, lovers and friends - are not confined to the painful subject of dementia: the book is also about anger, loss, love and loyalty. It's both powerful and moving.