Reviews of
Alzheimer's Books

THE BOOKS I FOUND MOST HELPFUL

This list of books may seem a little heavy laden with publications dealing with death. Facing Alzheimer’s Disease with a loved one is about facing a death sentence from the moment the diagnosis is made, and it is about continuing to face the countless little deaths that occur as each and every skill is lost until whatever existed in your relationship with that person lives only in the memory of the caregiver. The stages of mourning happen over and over until the loved one dies. There can’t be enough material and support to help caregivers come to terms with the toll this illness takes on everyone involved in this drama.

The Reviews

Carter, Rosalynn with Golant, Susan K., Helping Yourself Help Others, A Book For Caregivers. New York. Times Books, 1994.

Mrs. Carter begins her book with the following statement: "There are only four kinds of people in this world: Those who have been caregivers * Those who currently are caregivers * Those who will be caregivers * Those who will need caregivers". The definition of who a caregiver is, that follows that statement, is one of the most succinct descriptions I have read. This is a book everyone facing the prospect of long term care with a loved one must read and possess. She talks about caregiving as a time honored tradition, that although inherent with great stress and isolation, nevertheless holds the possibility of satisfaction if positive attitudes are nurtured and support services and help are attained. No one can do it alone. She provides a list of places to start for information and planning when long term care becomes a challenge in your life. I highly recommend this reading.

Cohen, Donna, Ph.D. & Eisdorfer, Carl, Ph.D., M.D., The Loss of Self. New York. W.W. Norton & Company, 1986.

This is a book caregivers can hand to relatives and friends to read in order to enrich their understanding of how the disease affects both the victim and their caregiver. It is not only informative in a very practical and easy to read manner but it is sensitive and to the point about the stages of Alzheimer’s Disease and the human needs of the people who face this illness. The personal stories highlighted are described in ways that aren’t merely words on paper written by someone safely detached from the impact this illness has on living people. This book stands out in my mind for that reason. It also speaks to the loss of relationships as the illness progresses. I refer to over and over and its one of the first I read after I realized Tom and I were facing Alzheimer’s Disease.

Cousins, Norman, Anatomy of an Illness. New York. Bantam Books, 1979.

Norman Cousins examines such topics as creativity and humor as being essential to treatment. Important to anyone touched by chronic illness. This was one of the first books Tom and I read and one I found particularly helpful in meeting the demands and changes Tom’s illness imposed on me. It is a book that talks about outlook and attitudes and taking charge of one’s life.

Lewis, C.S., A Grief Observed. New York. Harper Collins Publisher, 1961.

Most of us know the story of C.S. Lewis and Helen Joy Gresham through the movies "Shadowlands". This little volume with a forward written by Douglas H. Gresham, is the most poignant expressive, deeply personal accounts of what it means to grieve over someone you love, that I have ever encountered. He gave form to feelings I was unable to express and provided the words that will remain in my heart as the expression of loss I feel, as I face the final chapter with my husband Tom. It is rare that a volume such as this one enters one’s life.

Mace, Nancy L., & Rabins, Peter B., The 36 Hour Day. New York. Warner Books, 1991.

A friend whose mother died of Alzheimer’s Disease and who obviously recognized Tom’s behaviors as being similar to her mother’s, put this in my hand amidst my protestations that Alzheimer’s is not what Tom had. This book sat in the back of my closet for over a year before I picked it up and dared read it. It was and still is one of the best basic sources of information about dementia available. This is not a book you need to read from cover to cover the moment you buy it. Speaking from experience, doing so can be a little overwhelming. It is a book you buy and refer to in much the same way we referred to Dr. Spock years ago. It is a starting point on almost every topic relating to Dementia and one of the few books that actually talks about incontinence in the Alzheimer’s person in terms of how to deal with it instead of how to make it go away.

Naughtin, Gerry and Laidler, Terry, When I Grow Too Old To Dream. Australia. Collins Dove publishers, 1991.

This book is written thorough the eyes and emotions of individual caregivers and patients. The stories are sensitive, uplifting, informative and reflect the uniqueness that is so much a part of the ever changing tapestry of the individuals who have Alzheimer’s Disease. What captured my attention was the creativity these caregivers used to cope, the development of strengths that were unexpected, and the sense of life and love and laughter that occurred in spite of extreme conditions. The caregivers who contributed to this book seemed to develop a sense of peace about themselves and their loved ones as the illness progressed. It is important for caregivers to know, especially caregivers entering the early stages of this illness with a loved one, that peace and love can be a continuing part of the relationship even into the last stages. There aren’t many publications which tell you this and it’s almost impossible to imagine it yourself as life begins to deteriorate. I highly recommend this reading.

Nuland, Sherwin B., How We Die, Reflections on Life’s Final Chapter. New York. Alfred A. Knopf, 1994.

The author is a surgeon and teacher of medicine and writes that we have sterilized death by removing it from homes and family. He takes the reader through the process of how illness and trauma kills. And so his stories are not just about why someone dies, but how they die and what they physically go through during the last moments. The portraits of death he offers range from heart disease to murder. His chapter on Alzheimer’s Disease was particularly helpful to me and the way in which he de-mystifies death through the telling of the stories in this book really did help dissipate some of the innate fear I have about facing Tom’s death and my own.

Sacks, Oliver, The Man Who Mistook His Wife For A Hat, and Other Clinical Tales. New York. Harper & Row Publishers, 1970.

Tom’s neurologist recommended this book to me shortly after our move to Boulder. It did more to help me understand what was happening to Tom than everything else I read because it got me into Tom’s brain instead of just viewing it from the outside. Dr. Sacks relates a number of case studies that involve extreme neurological afflictions in a way that is both informative and easy to read. This book is not about Alzheimer’s Disease but it has everything to do with Alzheimer’s Disease. I reasoned after reading this volume, that if the brain can manifest the extremes in behaviors and misinterpretations exhibited in the case studies Dr. Sacks highlights then perhaps a brain deteriorating randomly as it does in Alzheimer’s Disease can also manifest similar behaviors and misinterpretations. It started me thinking about the possibilities of the world Tom was seeing as opposed to what I saw and helped me immensely in figuring out what was behind his behaviors and his losses. Most of all, I stopped trying to make Tom fit into my world, which relieved a great deal of stress and guilt I was imposing on myself.

This book gave me a whole new appreciation for the complexity of the brain. A brain that is capable of dreaming is a wondrous thing to consider and perhaps the uniqueness of Alzheimer’s Disease is that the dream becomes more real than we know and perhaps the dream is to be regarded instead of reviled. Living as closely as I have to this illness I still can’t say what Tom experienced or continues to experience as his illness progresses. I feel it is time to take Alzheimer’s disease out of the realm of senility and place it where it belongs and that is in the realm of progressive brain damage. It is the word senility that allows too many of us to convince ourselves that our elderly frail have less worth than the rest of us because they can no longer relate to our world, our standards, and our needs. It is time to see these people in terms of their humanity as well as their illness. I believe Dr. Sacks is one who lives that ideal in his approach to treatment and this book is one worth reading more than once.

Siegel, Bernie S. M.D., Love, Medicine & Miracles. New York. Harper & Row, Publishers, 1986.

Dr. Siegel is well known for his work with cancer patients. His approach to dealing with chronic illness is a mind, body, spirit approach that ultimately strengthens the individuals who choose to face their illness head on. I found the attitudes he proffered applied to Tom’s illness as it applies to cancer and other chronic conditions. His message was meaningful to both of us and helped us build a base of hope otherwise denied us by the traditional medical people we encountered in the early stages of Tom’s illness. His meditation tapes and lectures were extremely helpful in my being able to survive Tom’s illness after Tom lost the ability to participate in his life.

Caliandro, Arthur, Make Your Life Count. San Francisco. Harper & Row, Publishers, 1980.

Carroll, David L., When Your Loved One Has Alzheimer’s, A Caregiver’s Guide. Based on Methods Developed by the Brookdale Center on Aging. New York. Harper & Row, 1990.

Cousins, Norman, Head First, The Biology of Hope and the Healing Power of the Human Spirit. New York. Penguin Books, 1989.

Cousins, Norman, The Healing Heart, Antidotes to Panic and Helplessness. New York. W.W. Norton & Co., 1983.

Doernberg, Myrna., Stolen Mind, The Slow Disappearance of Ray Doernberg. Chapel Hill. Algonquin Books of Chapel Hill, 1986.

Gardner, Howard., The Shattered Mind, The Person After Brain Damage. New York. 1976.

Groverland, Jack, Miracles Made Easy. Boulder, Bigtree Press, 16 Canyon View SL, Boulder, Co. 80302, 1985.

Gwyther, Lisa P., Care of Alzheimer’s Patients. Published by ADRDA and the American Health Care Association. Available from Alzheimer’s Association chapters in paperback.

Kubler-Ross, Elisabeth, On Death And Dying. New York. MacMillan Publishing Co., Inc. 1969.

Sacks, Oliver, An Anthropologist On Mars, Seven Paradoxical Tales. New York. Alfred A. Knopf. 1995.

Sacks, Oliver, Awakenings. New York. Harper Perennial, 1973.

Seuss, Dr., You’re Only Old Once. New York. Random House, 1986.

Simonton, O. Carl, and Stephanie Simonton, Getting Well Again. Los Angeles. J.P. Tarcher, Inc. 1978.

Viorst, Judith, Necessary Losses. New York. Simon & Schuster, 1987.

 For a complete up-to-date list of books that deal specifically with Alzheimer’s Disease, call your local chapter of the Alzheimer’s Association. They also have many free publications, information about support groups, counseling, and up-to-date information on treatment available. For information on the chapter located nearest you phone: 1-800 272-3900. Or write: The Alzheimer’s Association and Related Disorders, 919 N. Michigan Ave., Suite 1000, Chicago, IL, 60611-1676.

Alzheimer’s Invisible Army, The Congressional Record - Senate July 2, 1992 S-9891 and 9892.

T.V. drama had it all wrong on Alzheimer’s, The Sunday Daily Camera, Boulder, CO., GUEST OPINION, October 9, 1994.

What All Alzheimer’s Disease Families Share, The Sunday New York Times EDITORIAL/LETTERS, November 20, 1994.