How does it feel when someone you love develops dementia? How do you cope with the shock, the stress and the grief? Can you be sure that you and your family will receive the support you need?
In Telling Tales About Dementia, thirty carers from different backgrounds and in different circumstances share their experiences of caring for a parent, partner or friend with dementia. They speak from the heart about love and loss: ‘I still find it hard to believe that Alzheimer’s has happened to us, ‘ writes one contributor, ‘as if we were sent the wrong script.’ The stories told here vividly reflect the tragedy of dementia, the gravity of loss, and instances of unsatisfactory diagnosis, treatment and care. But they contain hope and optimism too: clear indications that the quality of people’s lives can be enhanced by sensitive support services, by improved understanding of the impact of dementia, by recognising the importance of valuing us all as human beings, and by embracing and sustaining the connections between us.
This unique collection of personal accounts will be an engaging read for anyone affected by dementia in a personal or professional context, including relatives of people with dementia, social workers, medical practitioners and care staff.
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Foreword. Preface. Acknowledgements. Introduction. Section 1: Living with Loss. 1. A Big Enough Supply of Love. Maria Jastrzebska. 2. We Don’t Know What is Going Through Her Mind. Jennifer Davies. 3. The Departing Light. Jim Swift. 4. Walking on Thin Ice. Rachael Dixey. 5. The Most Difficult Decision of My Life. Debbie Jackson. 6. We Learn to Enter Her World. U Hla Htay. 7. Half a World Away. Anna Young. 8.Have You Seen My Pat? Pat Hill. 9. Feisty Love. Maria Smith. 10. Glimpses of Glory on a Long Dark Road. Helen Robinson. 11. Our Mum Had To Be The Man of The House. The Malik Family. 12. On The Contrary. Lucy Whitman. 13. Family Matters. Ian Mc Queen. 14. Back and Forth. Geraldine Mc Carthy. 15. A Very Important Moustache. Steve Jeffery. Section 2: Despatches from the Battlefield. 16. This Has Gone Beyond My Mother. Marylyn Duncan. 17. Rage, Rage. Jenny Thomas. 18. Forever in My Thoughts. Rosie Smith. 19. A Sister’s Story. Peggy Fray. 20. Surely the World has Changed. Roger Newman. 21. Look Back in Anger. Shirley Nurock. 22. Cracks in the System. Pat Brown. 23. Strained to the Limit. Andra Houchen. 24. Break on Through to the Other Side. Louisa Houchen. 25. Rocking the Boat. Sheena Sanderson. 26. The Significant Other. Brian Baylis. 27. An Instruction Manual for Keeping Your Mind. Gail Chester. Section 3: Keeping In Touch, Letting Go. 28. When Words Fail. Barbara Pointon. 29. The End of The Story. Tim Dartington. 30. State of Grace. Rosemary Clarke. Glossary. Recommended Reading. Helpful Organisations. The Contributors. What is for dementia?
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Lucy Whitman is a writer, editor and trainer, and a former teacher in further education. She cared for her mother who had dementia, which inspired her first anthology, Telling Tales About Dementia: Experiences of Caring, also published by JKP. Lucy has worked extensively with family carers, and writes regularly for the Journal of Dementia Care. She lives in London, UK.