|
bigtreemurphy.com |
|
Home | Book | Resources | Ethical Issues | Incontinence | Physical Care | | | About Us | Contact Us | |
|
THE BOOKS I FOUND MOST HELPFUL and WHY! |
|
These are texts that I found helpful. This is not an up to date list of what is available to caregivers facing Alzheimer's today but it does reflect what I ferreted out as I took on the challenges of my husband's disease. You will find texts on this list dealing with death issues. Perhaps the one emotion that bogs us down the most is that of Grieving. Each and every loss of skill is mourned in its own way and the 'little deaths' that become so much a part of a long-term illness like Alzheimer's are only a prelude to the actual event of death and make no mistake about it, Alzheimer's is a terminal illness. Dealing with the grieving is a very necessary part of this caregiving task and you cannot deal with it until you recognize that is what is happening. That is what is behind the anger, the depression, the rejection, the feelings of abandonment. What I needed most from my 'helpers' were practical ways to work with this illness and encouragement to continue to care in spite of what this illness did to my husband. Therefore you will find many titles that lean more towards empowerment and developing positive attitudes than anything else. The personal stories included here are not about Alzheimer's as much as they are about taking charge of a life in spite of an illness. These are truly lessons in living.
I hope this list will encourage you to seek other uplifting books that enhance the sanctity of caregiving to this population. To authors out there, if your book is uplifting. objective and encouraging to caregivers facing this illness I will be happy to review a reader copy and include your book in this list.
Caregiver Stories Heartsounds, Martha Weinman Lear Mainstay, For The Well Spouse of the Chronically Ill, Maggie Strong One True Thing, Anna Quindlen When I Grow Too Old To Dream, Gerry Naughtin, and Terry Laidler
Personal Challenges Anatomy of an Illness. Norman Cousins My Journey into Alzheimer's Disease, A True Story, Reverend Robert Davis tuesdays with Morrie an old man, a young man, and life's greatest lesson, Mitch Albom
Positive Thinking and Empowerment Getting Well Again, Carl O. Simonton, and Stephanie Simonton Head First, The Biology of Hope and the Healing Power of the Human Spirit, Norman Cousins The Healing Heart, Antidotes to Panic and Helplessness, Norman Cousins, Love, Medicine & Miracles Bernie S. Siegel, M.D. Make Your Life Count Arthur Caliandro Resilience, Discovering A New Strength at Times of Stress Frederic Flach, M.D.
Alzheimer's Care Care of Alzheimer’s Patients, Lisa P. Gwyther The Complete Guide to Alzheimer's-Proofing Your Home, Mark Warner, Ageless Design. The Loss of Self, Donna Cohen, Ph.D. & Carl Eisdorfer, Ph.D., M.D. Rhythmic Medicine, Music with a Purpose, Janalea Hoffman The 36 Hour Day, Nancy L. Mace & Peter B. Rabins Edgar Cayce and the Palma Christi, by William A. McGarey When Your Loved One Has Alzheimer’s, A Caregiver’s Guide, David L. Carroll
General Caregiver Helping Yourself Help Others, A Book For Caregivers Rosalynn Carter, with Susan K. Golant The Comfort of Home, Maria M. Meyer with Paula Derr, RN
Death and Dying Issues A Grief Observed. C.S. Lewis How We Die, Reflections on Life’s Final Chapter, Sherwin B. Nuland, On Death And Dying, Elisabeth Kubler-Ross Necessary Losses, Judith Viorst
Neurological Awakenings, Oliver Sacks The Man Who Mistook His Wife For A Hat, and Other Clinical Tales, Oliver Sacks The Shattered Mind, The Person After Brain Damage, Howard Gardner
Ethical Issues The Moral Challenge of Alzheimer’s Disease, Stephen G. Post
{Amazon logo} |
The Reviews
A Grief Observed, Lewis, C.S, New York. Harper Collins Publisher, 1961. C.S. Lewis and Helen Joy Gresham were people who not only had a mutual respect and understanding for each other, they also found a deep and abiding love for each other. Joy Gresham died after a long, painful battle with Cancer and their life together was chronicled most eloquently in C.S. Lewis' book Into the Shadowlands. (There were also two movies made titled: Shadowlands, either of which I recommend). This little volume, with a forward written by Douglas H. Gresham, continues after Joy's death. In it C.S. Lewis describes his grieving for her. It is the most poignant, expressive, deeply personal account of what it means to watch and grieve over someone you love that I have ever encountered. It is rare that a volume such as this one enters one’s life. It gave form to feelings I was unable to express and provided the words that will remain in my heart as my expression of my loss of Tom. Tom died one month after our book was published and so our final days together were never shared with my readers. Being moved out of the role of wife and caregiver and into the role of widow wasn't any easier for me than for anyone who feels a deep connection with the dying spouse. However, I was astounded to find that instead of being allowed my right to grieve over Tom, I was expected to be relieved the drudgery was over. The things people said to me were unbelievably insensitive. Had it not been for hospice, other caregivers who had also lost someone to this disease, and my discovery of this little book, I might still be trying to make sense of it all, because these people and this book gave me permission to feel my loss. ~*~ Anatomy of an Illness. Cousins, Norman., New York. Bantam Books, 1979. Norman Cousins examines such topics as creativity and humor as being essential to treatment of any illness. This is vitally Important to anyone touched by chronic illness. The one thing I hear over and over from caregivers who describe themselves as 'successful caregivers,' is their ability to draw from the irony of life and find the humor. This seems to be an attribute absolutely necessary to our survival. Mr. Cousins was the living example of that tenant. He related how his conscious effort to incorporate humor into his treatment plan not proved to be instrumental in his recovery, which is related in this book, he actually documented the physiological changes that occurred in his immune system when he felt uplifted, as opposed to depressed and hopeless. I attribute Tom's remarkable improvement at a holistic clinic we attended in Phoenix to the emphasis that was placed on positive outlook and finding joy in life in spite of Alzheimer's. We also learned how to reduce the effects of stress through exercises and positive imagery. Upon our return home, Tom's neurologist was amazed at the improvement in his overall functioning. I am not claiming that we affected a reversal of the progress of Alzheimer's, but I do believe that the reduction of stress, the ability to find a positive outlook in spite of this disease, and the fact that we were both nurtured in an accepting and supportive environment allowed Tom to function at his highest level for a longer period of time. I relate the details of this experience in, "he used to be Somebody, A JOURNEY INTO ALZHEIMER'S THROUGH THE EYES OF A CAREGIVER." Anatomy of an Illness, was one of the first books I read when I realized the trouble Tom was in. I found it particularly helpful in meeting the demands and changes Tom’s illness imposed on me. On the other side of that coin, it also turned out to be the last book Tom was able to read and integrate. It is a book that talks about outlook and attitudes and taking charge of one’s life. It's impact on Tom's outlook was immeasurable. I recommend it highly for families facing Alzheimer's. I still maintain that 80% of Tom's care was attitude, the rest was tools, information, resources and help. ~*~ Awakenings. Sacks, Oliver, New York. Harper Perennial, 1973. There are case histories included in this book that address changes in the brain and how those changes affect vision, perception, response etc. I found it helpful in terms of understanding my husband's reactions to his environment, reactions that often held the possibility of a catastrophic reaction if not dealt with properly. This book also has a glossary of neurological terms, many of which applied to Tom as his illness progressed. Dr. Sacks defines the various terms in understandable English. I'd recommend this book for that alone were it not for the quality of the rest of the content. ~*~ Care of Alzheimer’s Patients. Gwyther, Lisa P., Published by ADRDA and the American Health Care Association. Available from Alzheimer’s Association chapters in paperback. ~*~ Edgar Cayce and the Palma Christi, by William A. McGarey The Oil That Heals: A Physician's Successes With Castor Oil Treatments. I had the opportunity to meet Dr. McGarey at the holistic clinic I took Tom to as he entered the mid stages of Alzheimer's. Castor Oil packs were among some of the treatments we indulged in. I was amazed at some of the changes others experienced as a result of these treatments, (burns, lesions, skin ailments.) We went for a two week session and stayed for 8. When we returned to Tom's doctor, following this time, his doctor was amazed at the improvements he made in his ability to speak, construct thoughts and ideas, and his demeanor. We had spent two months being supported, encouraged, subjected to massage, stress counseling, diet changes and most of all acceptance. They accepted him and they accepted his need to come to terms with his illness. To this day I believe that all the overlying stress of Tom's illness was put to rest during that time and he was allowed to function at the highest level of functioning his disease allowed. We got back almost two years before the deterioration moved him into the last stage. What was most important was that Tom came away from the experience with an enriched sense of his life and his impending death from this illness. I write about this experience in greater depth in my book, "He Used to be Somebody," which can be ordered through Amazon or direct from my publisher Gibbs Associates. ~*~ Getting Well Again. Simonton, O. Carl, and Stephanie Simonton, Los Angeles. J.P. Tarcher, Inc. 1978. This book is about positive imagery and attitudes as a means of fighting illness. There are also self-motivational and meditation tapes and CDs available which I also recommend those facing this disease. If you can improve your outlook you improve your ability to cope. That is basic for both caregiver and patient. ~*~ Helping Yourself Help Others, A Book For Caregivers. Carter, Rosalynn with Golant, Susan K., New York. Times Books, 1994. Mrs. Carter begins her book with the following statement: "There are only four kinds of people in this world:
This definition is not only the most succinct description I have read, it also points to the reality that is life. In essence we will all be touched by caregiving, there is no way to completely avoid the inevitable. The implication therefore, is that we must begin to face it, accept it, and look to positive motivators to enable us to do it. This is a book, anyone facing the prospect of long-term care with a family member, must read and possess. Mrs. Carter talks about caregiving as a time honored tradition, but then she is one of the great humanitarians in our midst and one should not be surprised to find she is concerned about the negative attitudes that follow elder care issues. She also recognizes that although the role is inherent with great stress and isolation, it nevertheless holds the possibility of satisfaction if positive attitudes are nurtured and support services and help are attained. She makes the point that 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. ~*~ Head First, The Biology of Hope and the Healing Power of the Human Spirit. Cousins, Norman, New York. Penguin Books, 1989. One must not forget that the caregiver is in need of a healthy human spirit if we are to survive. In order to be a help, we must first help ourselves. This book offers a way to access our inner strength, our resiliency and our creativity, all necessary ingredients in maintaining a healthy immune system. ~*~ How We Die, Reflections on Life’s Final Chapter. Nuland, Sherwin B., New York. Alfred A. Knopf, 1994. The author is a surgeon and teacher of medicine who writes that we have sterilized death by removing it from homes and family. He maintains that it is the stigma and fear attached to the death process that results in the unnecessary institutionalization of too many at the end of their lives. He takes issue with this rather recent development in our collective society and urges families and professionals alike to question the present attitudes towards death and dying. This book has the most informative segments I’ve read about the death process and did a great deal to help me visit my fear about dying and my fear of what Tom's last days might be like. Dr. Nuland's description of the dying process with Alzheimer's proved to be a fairly accurate account of what Tom eventually experienced. Even with some misgivings about the bias I feel exists elsewhere in this chapter and which I speak of in more depth in the Incontinence Care section titled: "It's Just Poop People," I still feel this is a useful book for Alzheimer caregivers. ~*~ Love, Medicine & Miracles. Siegel, Bernie S. M.D., 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. This unified approach ultimately strengthens individuals enabling them to take charge of their illness. You cannot fight anything if you feel like a victim. 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 rhetoric we encountered in the early stages of Tom’s illness. Dr. Siegel's meditation tapes and lectures were extremely comforting to Tom and they were immeasurably helpful to me after Tom lost the ability to actively participate in his life. I presented these tapes to Tom as something we could do together in the evenings. They helped us relax and I believe they gave Tom a sense of having some control over his fears. When the spoken word became too problematic for Tom I switched to music and continued this ritual until he died. ~*~ Make Your Life Count. Caliandro, Arthur, San Francisco. Harper & Row, Publishers, 1980. Norman Vincent Peale says it all...."Truly evident in this book is the remarkable power that changes people from what they are to what they were meant to be." I first met Dr. Caliandro at Marble Collegiate Church in Manhattan. He was a friend to my husband, Tom, and a mainstay for me. His zest for life and living life to its fullest is what the man is all about and it is what this book is all about. Living isn't about running from our responsibilities, living is about facing life head on "...with belief in our self-worth and our God-given potential. His message speaks directly to those who are troubled by self-doubt and longing to find real meaning and success in life." His sermons air on radio in NYC and on cable television stations around the country. ~*~ Mainstay, Strong, Maggie., Penguin Books, New York 1988 ~*~ My Journey into Alzheimer's Disease, A True Story. Davis, Robert, Tyndale House Publisher, Inc., Illinois, 1973. This is the Alzheimer's version of 'tuesdays with Morrie.' It was written by the Reverend Robert Davis with the help of his wife Betty. It is a true, first person account of the early stages of this disease and in that, it is a valuable tool for those of us who work with these patients. Ever present is Rev. Davis' humanity and no one who reads this account can, in all consciousness, consign these people to the realm of the inconsequential ever again. This person is a living, breathing, feeling man who is struggling to maintain his sense of himself in the context of his world while facing the horror he knows to be Alzheimer's. While he was able, Reverend Davis struggled to put his feelings and fears on paper for the benefit of those who might follow him down this path. Its impact is enhanced by his wife, Betty's, comments as his illness progresses and his ability to write diminishes. He finds his strength in his deep religious beliefs and while much of the book focuses on his relationship with God, it must also be said that he gives the reader a truly unique view of this illness in progress. Regardless of your religious orientation, this book exemplifies the newfound spirituality so many of us reach for and discover as we face this illness, a spirituality that reflects who we are and grants us a level of peace and contentment with our lives. It is poignant, it is emotionally honest, and it is true to what Alzheimer's people feel as this illness begins to isolate them from their world. I heartily recommend this little volume. ~*~ Necessary Losses. Viorst, Judith, New York. Simon & Schuster, 1987. Ms. Viorst covers the range of losses that occur in life. Dying is not the only loss we face. Every change we experience in life brings with it an element of grieving. I found this particularly helpful in recognizing the grieving process in the "little deaths" that occur throughout long-term illness of any sort. ~*~ On Death And Dying. Kubler-Ross, Elisabeth, New York. MacMillan Publishing Co., Inc. 1969. This book is essential. It was one of the first written about the grieving process and I maintain that to understand the true feelings we experience as long-term caregivers, we must also understand the grieving process that permeates every aspect of care, every change we witness, and every step that leads to the final process of the dying. ~*~ One True Thing Quindlen, Anna., Dell Publishing, a division of Bantam Doubleday Dell Publishing Group, Inc. New York 1994 This is a work of fiction but it is one of the best caregiver stories I have ever read. The thing I liked about this book was the development of the daughter into the role of her mother's caregiver. It needs to be said that we are all reluctant caregivers. There isn't one of us who looks forward to making major changes in our lives to accommodate a dying person regardless of our connection with them, regardless of the disease process we face. The majority of us, even when we have a deep and abiding connection with our person faces feelings that can only be described as dread. For most of us, the relationships we have with our parent or spouse are fraught with difficulties; old patterns of behavior, unresolved conflicts, little injuries, big injuries and complicating the situation are the relationships with the 'other' family members. The one who steps up to take on the role of caregiver is often the one thrust into that role, as is the character of the daughter in this book, and feelings of abandonment and anger have to surface. But, for so many of us, this daughter included, we somehow manage to take on the tasks, we manage to find a level of peace in those tasks, and more often than not, we find a new relationship with our person that softens the old memories and patterns and hurts. so many of us discover that it is possible to wipe the slate clean and begin anew. This story takes the reader through this evolution and it not only put words to what I got our of my caregiving experience it has spoken to every caregiver I've recommended it to in the same way. Over and over, the stories I hear is that after all was said and done, we caregivers have few regrets about our 'sacrifice,' and in fact the majority of us see our experience as a growth experience. If you want to read about an example of the real story of caregiving, read this book! ~*~ Resilience, Discovering a New Strength at Times of Stress Flach, Frederic, M.D., Fawcett Columbine Publisher, New York, 1988 Dr. Flach writes: "There are certain resilient personality traits: Creativity. The ability to tolerate pain. Insight into ourselves and what we are going through at any particular phase in our lives. Independence of spirit. Self-respect. The ability to restore self-esteem when it is diminished or temporarily lost. A capacity for learning. The ability to make and keep friends. Freedom to depend on others, with the skill to set proper limits on the depth of our dependence. A perspective on life than offers a vital, evolving philosophy within which we can interpret all that we experience and from which we can discover some measure of personal meaning. ...Resilience lies at the heart of human evolution. ...The most encouraging observation I've made over all these years is that resilience is a strength most of us can develop with thought and practice." Dr. Flach makes the point that "Resistance to change is a universal phenomenon, and when pitted against change, it gives rise to a fear that ultimately intensifies the conflict." Alzheimer's Disease presents nothing but change to the lives of everyone concerned. What makes a successful caregiver depends a great deal on their resiliency in dealing with change. This is an absolute must reading in terms of understand our fear of change and in developing a new outlook on the challenges of long-term care. ~*~ Rhythmic Medicine, Music with a Purpose. Janalea Hoffman, Jamillan Press P>O> Box 6431, Leawood, KS 1995 Janalea was one of the first young American musician/composers to look into the powers of the 50/60-beats-per-minute music. Her tapes and LCD/s facilitate, among other things relaxation, body awareness, ease insomnia, and high blood pressure. Her primary interest lies in how music affects our bodies physiologically, and in developing specific techniques for using music to help lower heart rate and blood pressures, and to help alleviate pain. I met her at an education conference on Alzheimer's Disease and was truly impressed by her work with Alzheimer's patients. She contends that it is the steadiness of the beat and the body's natural instinctual need to match the heart beat with the beat of the music that holds the key to how music sooths and relaxes. This is so important for Alzheimer's patients. e-mail: rmmusic@webtv.net ~*~ The Comfort of Home. Meyer, Maria M., with Derr, Paula., RN Care Trust Publications LLC, Portland, 1998 The reader is supplied with lists of equipment for use in the home. The section on Alzheimer's gives the usual run down about this disease and incontinence care and the problems specific to this disease isn't even mentioned. However, the basic information given re: other illnesses is helpful to all families facing long-term care issues. ~*~ The Complete Guide to Alzheimer's-Proofing Your Home Warner, Mark., Ageless Design., Purdue University Press, West Lafayette, Indiana 1998 This book is a must for caregivers and professionals facing the challenges of Alzheimer's. It is the first book I've read devoted to Alzheimer's care that offers something more than reasons to institutionalize our people. Caregivers need information, options and where to access tools and resources before they can make informed decisions about their choices or their role as caregiver. As someone who spent 25 years designing rehabilitations plans for handicapped people and another 10 years facing the care of my husband, Tom, who died of this disease in our home, this is the first volume I've picked up that speaks of caregiving in positive, life-giving, do-able terms and not the drudgery that we are all led to believe consumes the process. While it offers pragmatic, workable, affordable solutions to caregivers, it never loses sight of the continued humanity and needs of our family members for love and regard in spite of their loss of cognitive skills. My experience as a caregiver was met with nothing but obstacles in my quest to keep my husband home, a journey I relate in my book, "He Used to be Somebody." I found Tom's care problems were 80% attitude and 20% tools, resources and help. This book offers both to families. I highly recommend it. ~*~ The Healing Heart, Antidotes to Panic and Helplessness. Cousins, Norman, New York. W.W. Norton & Co., 1983. This is a book designed to recognize panic when we feel it. Cousins gives a personal account of his experience with panic and ways to recognize it and deal with it when it happens to you. Caregivers know about panic. This is a book every caregiver should read. ~*~ The Loss of Self. Cohen, Donna, Ph.D. & Eisdorfer, Carl, Ph.D., M.D., New York. W.W. Norton & Company, 1986. This is a book about Alzheimer's, caregivers can hand to relatives and friends to read in order to enrich their understanding of how the disease affects both the patient 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 in this book speak to a sensitivity and richness of narration that reflect hands-on experience with this disease and are therefore an accurate portrayal of what caregivers face. This book stands out in my mind for that reason. I refer to over and over and it is one of the first I read after I realized Tom and I were facing Alzheimer’s Disease. ~*~ The Man Who Mistook His Wife For A Hat, and Other Clinical Tales. Sacks, Oliver., New York. Harper & Row Publishers, 1970. Dr. Sacks relates a number of case studies that involve extreme neurological afflictions in a way that is both informative and easy to read. He has that ability to present the person as well as the disease. Tom's neurologist recommended this book to me shortly after our move to her community. I picked it up and it did more to help understand what was happening to Tom than everything else I read about this disease. 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 began my 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 both of us. 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 state 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 continued to experience as his illness progressed. I do believe this however, 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. ~*~ The Moral Challenge of Alzheimer’s Disease, Post, Stephen G., The John Hopkins University Press, Baltimore and London, 1995 I had occasion to hear Dr. Post lecture in Denver. This was one of the rare occasions, since I started on the Alzheimer’s roller coaster with Tom, when I heard any expert talk about the human quality of the Alzheimer's person in terms that directly challenged the current occupation of focusing on the difficulties society faces with this illness. Always the Alzheimer’s person is spoken of in terms of difficulty of care, in terms of the emotional and monetary cost to the caregiver, in terms of the cost to society, and how sad it all is that they don’t even know who their caregivers are anymore. Rarely is the human quality of the person with this disease ever raised as an issue in determining their care choices. These accepted characterizations do little more than dehumanize the patient with this disease. Dr. Post argues, "... maintaining the emotional and relational well being of those with dementia depends on caregivers who see dignity even in those severely affected by this condition." He dates the negative attitudes towards the crazy, the demented and the retarded to the onset of The Age Of Reason. This time in history prioritized the ability to think, reason, and learn, above all else and it heralded the end of a beneficence, society had automatically afforded those who would now be despised, reviled and herded into asylums, attics, and jails. He further writes: "…But we live in a culture that is the child of rationalism and capitalism, so clarity of mind and economic productivity determine the value of a human life." "…The value of a human being is not diminished by even profound forgetfulness; we must assume equal moral seating and awaken a new beneficence toward those who can no longer remember." "…People with dementia have heterogeneous disabilities that confer on them a preferential moral significance based on the magnitude of their needs. They are the socially outcast, the unwanted, the marginalized, and the oppressed." …in other words; If you can’t produce you are without value in this society. I think this is an attitude that need reworking. I recommend this book to professionals and family members dealing with this disease. ~*~ The Shattered Mind, The Person After Brain Damage. Gardner, Howard., New York. 1976. ~*~ The 36 Hour Day. Mace, Nancy L., & Rabins, Peter B., 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 book 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. ~*~ tuesdays with Morrie, an old man, a young man, and life's greatest lesson. Albom, Mitch., Doubleday, New York, London, Toronto, Sydney, Auckland 1997 What can one say about Morrie. Who hasn't read the book or seen the movie. A story of a courageous man facing the slow death of his body and yet one who epitomizes the words of Dylan Thomas: Rage, Rage, Against the Dying of the Light. Morrie speaks openly and frankly about his impending incontinence, he feelings of grief and rage, his fears and his determination to face this life with dignity and as much panache as he can summon up. We applaud his evolution from rejection of his fate to acceptance of the inevitable. We applaud him and we applaud the young man who reached out to him. In the end, Morrie's state wasn't that unlike that of my husband. The only difference between these two men is that Morrie still had the ability to think and communicate. Their care needs didn't differ much and the progression of their illness didn't differ a whole lot except for the communication skills. Morrie died at home, his family had gathered and he was surrounded with love and affection. Tom died at home, surrounded by those who cared for him. When death came, the only difference is that I didn't have to explain to Tom that death was near. That process was in most likely hood explained to Morrie. The point I'm making is that Tom was no less courageous. He was no less stricken with the realities of his illness despite his failing abilities to communicate that fear, and grief and abhorrence of what lay head. He was no less in need of the same understanding, encouragement, love, touch, or connection with his world. He was no less deserving of all those things lavished upon Morrie. This is not to degrade Morrie's need, this is to upgrade the needs of Tom and others like Tom. Read this book and find out what one human experience was in the face of a horrible disease and then try to extrapolate those feelings and apply them to those who face Alzheimer's. Their inability to communicate does not diminish their need for the same regard. ~*~ When I Grow Too Old To Dream. Naughtin, Gerry and Laidler, Terry, 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 Alzheimer’s Disease. What captured my attention was the creativity these caregivers used to cope with the changes, 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 is almost impossible to imagine it yourself at the beginning of this process. I highly recommend this reading. ~*~ 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.
Return to Book Menu Return to Home Page Menu |