Keeper: One House, Three Generations, and a Journey Into Alzheimer's (29 page)
Read Keeper: One House, Three Generations, and a Journey Into Alzheimer's Online
Authors: Andrea Gillies
Tags: #General, #Women, #Medical, #Autobiography, #Biography & Autobiography, #Personal Memoirs, #Biography, #Diseases, #Health & Fitness, #Alzheimer's Disease, #Patients, #Scotland, #Specific Groups - Special Needs, #Caregivers, #Caregiving, #Alzheimer's disease - Patients - Scotland, #Alzheimer's & Dementia, #Gillies, #Alzheimer's disease - Patients - Care - Scotland, #Caregivers - Scotland, #Family Psychology, #Diseases - Alzheimer's & Dementia, #Andrea, #Gillies; Andrea, #Care
Additional Reading
Online Resources
Useful resources on the Internet divide into two main types: those that offer information, and those that offer support. I can’t urge you strongly enough, if you are a caregiver of someone with dementia, to join a forum community and share your day-to-day struggles, concerns, and questions. “Talking” online to others who have just the same kind of issues and crises is invaluable. There is a lot of genuine companionship and good advice out there. Just to have an ongoing conversation with others in a similar situation to yourself, and to forge friendships, is immensely helpful and can vastly improve caregiver morale.
The Alzheimer’s Association. Education, advice, publications, and support. A guide to your rights and options. A very popular forum, where you can “talk” via message to other caregivers and sufferers. Twenty-four-hour toll-free advice on the phone.
Alzheimer’s Foundation of America. Practical advice about the technicalities of caring for and supporting someone with dementia. A not-for-profit organization that acts as an umbrella for 1,200 other organizations. A useful list of government organizations to contact, under caregivers’ tips/government/federal resources.
“Talking Point,” a useful, busy caregivers’ forum hosted by the Alzheimer’s Society in the United Kingdom. Though the drug names and care procedures and legislation may be different, you’ll find British caregivers have many of the same kinds of problems and solutions.
A useful digest of Alzheimer’s stories in the news, and articles on aspects of dementia and dementia care, edited by a caregiver.
A forum for those affected by Alzheimer’s, hosted by the Fisher Center for Alzheimer’s Research Foundation (
www.alzinfo.org
).
CAPS—Children of Aging Parents. A nonprofit charitable organization that aims to offer support and information for caregivers to the elderly. There is also an online support group.
Family Caregiver Alliance. Campaigning on behalf of caregivers, providing education and support. State-by-state navigator for care options. You can sign up to “talk” to other caregivers online.
Information, personal stories, resources.
National Alliance for Caregiving. A nonprofit coalition of national organizations focusing on issues surrounding family caregiving. An advocacy group.
Hosts forums for a whole list of illnesses. Choose “Alzheimer’s” from the menu. Post problems and get feedback. This Web site says that medical personnel can give feedback also; you need to sign up for this.
A search facility that puts Americans in touch with finding the organizations in their own area that can help and advise about home-based and community care.
The National Family Caregivers Association. Information and advocacy: giving a voice to the vast silent army of caregivers in the United States. The Family Caregiver Forum has message boards where you can post your problems and solutions and share with others.
Forums for all sorts of illnesses: Go to the message board index and choose Alzheimer’s and Dementia, or put “Alzheimer’s” into the search box.
Navigate via the Seniors & Aging link, to Alzheimer’s/Dementia. The “Support for Caregivers” section has good advice.
The Mayo Clinic’s own information pages about Alzheimer’s (follow the links) offer good basic guidance. The blog strives to be positive and can-do. There is a chance to comment; the comments from caregivers present an interesting contrast.
National Institute on Aging Web site. Click on Alzheimer’s Disease Information. Clear and simply written information on diagnosis, treatment, and caregiving.
“A layperson reports on memory loss, Alzheimer’s and dementia.” A useful digest of dementia news.
Blogs
More and more caregivers are beginning to use the Internet to post diaries of their thoughts and experiences. You may find some of the following blogs useful, though be warned that sometimes their sadness and courage can prove overwhelming.
www.alzheimersdad.blogspot.com
www.alzheimersspeaks.wordpress.com
www.eldercarecafe.blogspot.com
blog.seattlepi.com/witnessingalzheimers
Popular Books About Dementia and Alzheimer’s
The Alzheimer’s Action Plan
, by P. Murali Doraiswamy and Lisa P. Gwyther—A guide that looks at what can be done about MCI and early stages of dementia.
Alzheimer’s from the Inside Out
, by Richard Taylor—Essays written by a psychologist and early-onset-dementia sufferer, observing his own deterioration.
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science
, by Norman Doidge—An interesting book about brain plasticity, its ability to rewire itself.
A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier
, edited by Patricia R. Callone—A very practical guide popular with caregivers.
Creating the Good Will
, by Elizabeth Arnold—A comprehensive guide to financial end-of-life planning.
Dementia Diary: A Care Giver’s Journal
, by Robert Tell—An account by a son of his mother’s slow descent into disease.
Elder Rage, or Take My Father … Please!
by Jacqueline Marcell—A popular and cathartic howl of frustration by a child looking after a difficult aged parent.
Learning to Speak Alzheimer’s
, by Joanne Koenig Coste—Personal experience and person-centered home-based-care advice from the wife of an Alzheimer’s sufferer.
Losing My Mind
, by Thomas DeBaggio—An account of his own decline, by an early-onset-Alzheimer’s sufferer.
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
, by Carol O’Dell—Another account of a mother with dementia being taken into her child’s home and life and the struggles that ensued.
Still Alice
, by Lisa Genova—A bestselling novel about a psychology professor with early-onset Alzheimer’s.
The 36-Hour Day
, by Nancy L. Mace and Peter V. Rabins—The best-known of the how-to-care guides for family and home-based caregivers.
Acknowledgments
Introduction
Luis Buñuel,
My Last Sigh
, translated by Abigail Israel, published by Alfred A. Knopf, a division of Random House, Inc. A paperback edition is published by University of Minnesota Press.
Chapter 2
Aaron Copland quotation reprinted by permission of the publisher from
Music and Imagination: The Charles Eliot Norton Lectures 1951–52
by Aaron Copland. Harvard University Press, Cambridge, Mass. Copyright © 1952 by the President and Fellows of Harvard College, Copyright © renewed 1980 by Aaron Copland.
Chapter 5
Philip Larkin, “Best Society,” from
Collected Poems by Philip Larkin
. Copyright © 1988, 2003 by the Estate of Philip Larkin. Reprinted by permission of Farrar, Straus, and Giroux, LLC.
Philip Larkin, “Aubade,” from
Collected Poems by Philip Larkin
. Copyright © 1988, 2003 by the Estate of Philip Larkin. Reprinted by permission of Farrar, Straus, and Giroux, LLC.
Ludwig Wittgenstein, aphorism 109, from
Philosophical Investigations
, 1953. New edition edited by Hacker and Schulter, and published by Wiley-Blackwell.
Ludwig Wittgenstein,
Tractatus Logico-Philosophicus
, 1922. New edition translated by Pears and McGuinness, and published by Routledge Classics.
Chapter 16
Antonio Damasio,
The Feeling of What Happens
, 2000, published by Harvest Books.
Chapter 18
C. G. Jung and W. Pauli,
The Interpretation of Nature and the Psyche
, 1955. Translated by R. F. C. Hull and published by Routledge.
Sigmund Freud,
Civilisation and Its Discontents
, 1930, translated by David McLintock, published by Penguin Modern Classics.
R. D. Laing,
The Facts of Life
, 1976, published by Allen Lane. Reproduced with kind permission of the R. D. Laing Estate.
Chapter 20
Elizabeth Bowen,
Vogue
magazine interview, September 1955. Reproduced with permission of Curtis Brown Group Ltd, London, on behalf of the Estate of Elizabeth Bowen. © Elizabeth Bowen 1955.
Chapter 22
T. S. Eliot, “The Hollow Men,” from
Collected Poems, 1909
–
1962
, © 1936 by Harcourt, Inc. and renewed 1964 by T. S. Eliot. Reprinted by permission of Houghton Mifflin Harcourt Publishing Company.
John Bayley,
Iris
, 1998, published by Duckworth.
Chapter 23
Henry Miller,
Black Spring
. Reproduced with permission of Curtis Brown Group Ltd, London, on behalf of the Estate of Henry Miller. ©
Henry Miller 1936.
Douglas Adams,
The Hitchhiker’s Guide to the Galaxy
, 1979, published by Macmillan.
Chapter 25
Louis MacNeice, “Snow,” from
Collected Poems
, 2007, published by Faber & Faber.
Chapter 26
Wallace Stevens, “Man and Bottle,” from
The Collected Poems of Wallace Stevens
, 1990, published by Vintage Books, a division of Random House, Inc.
Chapter 27
C. G. Jung,
Children’s Dreams, Notes from the Seminars Given in 1936–40
, translated by Ernst Falzeder and Tony Woolfson, published 2007 by Princeton University Press.
Chapter 28
Philip Larkin, “Long Last,” from
Collected Poems by Philip Larkin
. Copyright © 1988, 2003 by the Estate of Philip Larkin. Reprinted by permission of Farrar, Straus, and Giroux, LLC.
Chapter 31
C. G. Jung,
Psychology and Alchemy
, translated R. F. C. Hull, and published by Routledge.
About the Author
A
NDREA
G
ILLIES
is a writer and journalist.
Keeper
, her first book, won the 2009 Wellcome Trust Book Prize for the best book on a medical topic published in the United Kingdom. She lives with her family in St. Andrews, Scotland, and has just completed her first novel.
Copyright © 2009 by Andrea Gillies
All rights reserved.
Published in the United States by Broadway Books, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York.
www.crownpublishing.com
BROADWAY BOOKS and the Broadway Books colophon are trademarks of Random House, Inc.
Originally published in slightly different form in Great Britain by Short Books, London, in 2009.
Library of Congress Cataloging-in-Publication Data
Gillies, Andrea.
Keeper: one house, three generations, and a journey into
Alzheimer’s / by Andrea Gillies.
1. Alzheimer’s disease—Patients—Care—Scotland. 2. Gillies, Andrea. 3. Caregivers—Scotland—Biography. 4. Alzheimer’s disease—Patients—Scotland—Biography. I. Title.
RC523.G476 2010
616.8′31—dc22 2010006659
eISBN: 978-0-307-71913-3
v3.0