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Speaking Our Minds: Personal Reflections from Individuals with Alzheimer's

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Being recently dianosed with CRS, see my review of Shenk's "The Forgetting," I want to know from others who have been there, what is ahead of me. I am a member of two ALZ support groups, one mixed, and one for ALZers by themselves. Recently at a social party where I was experiencing data overload, I confided to a woman of my own age, that I was diagnosed with ALZ. She immediately said she was also, and we immediately began comparing symptoms, just as other ALZers do when their caregivers are not around!
This book fullfills my needs for the stories from those who are there. No story fits me exactly, yet parts of each show me that I am not unique, that I need not fit the popular mold, e.g. "Iris," of where and who I am. Just as the 42 stories at the rear of "Alcoholics Anonymous" give understanding and light to those afflicted with another incurable pathology, so do these bring hope and understanding to me: "I Am Not Alone!"
There is an abundance of tomes dealing with the diagnosis and care of ALZers. Those few books which let one ALZ speak to another ALZ are far between. ["Living in the Labyrinth" by McGowan is another in this small select company.]
If you, a friend, or a relative has ever been given a tentative or conclusive diagnosis of ALZ, run, don't walk, to get a copy of "Speaking Our Minds" to them. If like me, their reading capabilities have substantially deteriiorated, please, please read it to them!

"Reverse Mike"

This book is suitable for anyone involved in the struggle with AD as well as the general public. I am the husband and caretaker of a wife who was diagnosed five years ago at the age of 53. I am also a social worker, and as I read this book I felt proud that a fellow social worker had written it. This book is full of up to date information concerning AD and it also provides an insightful look at seven individuals who are coping with AD. Lisa Synder has actually worked with people with AD for over a decade and she combines thoughts of persons suffering from AD with her own observations. In most of the vignettes, she writes about an initial interview and then she returns several years later to continue the dialogue and to bring us up to date in the situation. Ms. Synder demonstrates both compassion and admiration toward those she writes about. In the course of this book she dispells many of the misconceptions held by the public concerning AD. I don't think that anyone who reads this book will be disappointed.

As a trainer and consultant in the field of Alzheimer's disease, I constantly suggest that conference organizers enlist a panel of people with dementia to tell their stories directly to the audience. I also suggest that caregivers regularly ask people with dementia how they feel about events and situations -- What causes distress and what brings comfort? Now there is Lisa Snyder's book which does just that. Here are the real stories of seven individuals -- each experiencing dementia, but each a unique individual. Lisa is compassionate and understanding in helping them to tell their stories, but she celebrates their humanity; she does not pity them. Her interspersed comments are helpful and revealing, adding to our under-standing of the disease. When I cannot bring a person with Alzheimer's disease to my class, I bring this book and quote from these delightful, very human life stories. This book is definitely on my "must have" list.

Lisa Snyder has done a magificent job of putting a human face on this terrible disease affecting nearly 5 million Americans and 18 million worldwide. The seven narratives recounted in this book are filled with information and insights that any newcomer to the disease will appreciate. Mixing verbatim remarks of men and women with the disease along with the author's solid commentary is a refreshing approach to understanding the disease. These stories are illuminating,sad,inspirational, and informative. Not everyone with the disease can be as eloquent as the people quoted in this book but their perspectives can shed light on the experiences of others with the disease. My only criticism is that I wanted to read more personal stories than the seven presented in this beautifully written book. As a social worker and an education director at an Alzheimer's center, I look forward to recommending this book to families and professionals alike. We need more stories like these to be told from the viewpoint of those with the disease. The author has made a major contribution to the growing literature on the early stages of Alzheimer's disease.

I want to know whether my mother is suffering, I want to know whether she is aware of her disease, and if so, what does she think of it. I want to know what, if anything, I can say or do to comfort her.

And after reading Lisa Snyder's book I still don't have a clue.

Mom's symptoms of Alzheimer's appeared a year and a half ago. She can not, or will not, talk about it. And in this short time her condition has deteriorated mightily. But she isn't like any of the subjects in this book. The people Lisa writes about seem to be at an earlier stage, and to be very self-aware and open to concepts such as therapy. I cannot draw much from their stories.

That said, the book is well written and interesting, and it gives me some comfort to read of people who are living fairly well with this very sad disease. For many readers this will be a 4- or 5- star book, but not for me, not at this time.

Afraid and adrift at the possibility of a loved one being diagnosed with Alzheimer's Disease, I raced to the library for more information. I ordered and skimmed every book on the subject, ranging from the medical perspective and clinical analysis, to the caregiver's perspective of increasing dilemmas to cope with. Nothing sustained or illuminated me.

Fortunately, a well-read bookstore owner referred me to "Speaking Our Minds: Personal Reflections from Individuals with Alzheimer's". At last. The missing perspective of people themselves. So what happens? How do they feel? How do they cope? HOW CAN I HELP?

For those who love deeply, this is a book to help guide the way to a new depth of understanding, personhood, relationship, and loss of fear, in relation to anyone with illness.

This is a transcendant book. Nothing is given. Everyone is unique. There are medical realities we know at this time, and there are new realities emerging at this time. But, if we know nothing when confronted with illness, then we know all, because kindness can begin, and kindness can end.

I would recommend this book as required reading in every high school, college, and graduate school on the subject of the nature of illness and relationship, but firstly to you, and to me, who travel the road of the affirmation of the human spirit.

Alzheimer's is the 4th leading cause of adult death and the 3rd most costly disease; it also may be the disease most people don't want to know about. "Speaking Our Minds" (W. H. Freeman, 1999, New York) should change that--for patients, families, and clinicians.

When clinicians state they're "in practice," they're recognizing the benefit of learning from direct contact with people afflicted with diseases-for which no medical textbook can substitute. However Lisa Snyder's book is not a textbook. All but 16 pages of her book are devoted to seven case histories. Her vivid descriptions (in italics) provide glimpses of the settings in which patients and caregivers live. The patients' transcribed words (in normal type) exemplify the most common ways of coping with Alzheimer's Disease, from being informed-the bad news diagnoses-to the ongoing toll it takes on autonomy, to being depressed over the ever increasing burden it places on their caregivers.

The poignancy of these tales is enhanced as the author reveals her own emotions through excellent writing. One example: "I effectively redirected my preoccupation with the apartment drapery, reached within, and tugged back my own internal curtains." She equally shares her own attitude as well as those of the patients toward this disease. Denial, anger, humor, depression, and spiritual acceptance are all illustrated. Snyder's gift for writing is effective; for instance, this metaphor: "Alzheimer's disease has many hues. Unfortunately, the diagnosis often extinguishes the light with which to view them."

Patients, caregivers, and clinicians can all glean much understanding and some cautious hope from Snyder's relating these patients' experiences; for example, what it's like to have memory fail, the gift of temporarily forgetting they forget, or the simple joy of another moment in a "second childhood." Readers may accept the author's implicit suggestions for coping: talk honestly to friends and relatives, attend groups, as well as the general approach to responding to their handicap from a better understanding of how the disease has effected them. People unfamiliar with the disease may be impressed with how much quality of life there is in both the early and middle stages, of the disease. Even a severely impaired individual, who depends on others for most activities of daily living, may still retain his/her voice and sweet personality.

One area of the book that no follow-up interview tackled, however, was the devastating manifestations of end-stage disease and the difficult choices that sometimes then need to be made. Perhaps this is a topic in itself, for another book.

Although I am a clinician, I learned much from these seven cases. Psychiatrists are usually called in to see Alzheimer's patients only when they become "management problems," which means when their behavior has passed

the threshold of being tolerated by caregivers. Until recently, I had little contact with people in the earlier stages--where the transition from normal to severely impaired occurs. For this reader, and I imagine, many others of diverse background, therefore, Lisa Snyder's book is a major contribution.

Stanley A. Terman, Ph.D., M.D., heads Peaceful Transitions, a group of professionals from various professional disciplines to help terminal patients and their families, and can be reached at DrTerman@aol.com.

My wife was diagnosed last year with AD at age 63. Within months after the diagnosis I had read several books, joined a support group, and gone online at several sights to read and post comments on message boards. One of the things I find comforting as I now go through life as a spouse/caregiver of someone with AD is knowing that others have gone before me down the same or similar road ... that others have dealt successfully with some of the same challenges I am now facing. While reading the stories presented by Lisa Snyder ... both in the words of the people with Alzheimer's and in the words of the author ... I found myself often nodding my head in agreement and acknowledgment. I understood where these seven people were 'coming from' ... and the insights provided by the author were right on target. Most of all, I enjoyed the conversational style of the author ... I felt as if she and I were sitting together in my living room and she was talking with me as she related these stories. Both informative and empathetic, this book also clearly demonstrates how each person with AD is unique ... despite many similarities regarding memory loss and other common AD symptoms, each person with AD truly follows a different path. At times I found myself hoping that my wife would not take the paths of some of those described in this book, but yet there is also much benefit to knowing some of the possibilities that may be around the corner. The effects of this horrible disease, the challenges as the disease worsens, and yet also the hope and tender moments that can remain for a long time despite worsening symptoms, are all told through the honest words of those who are living through these daily experiences. I recommend this book highly for spouses, caregivers, and others closely involved with people with Alzheimer's.

This is a wonderful book from the perspective people suffering from Alzheimer's disease. I highly recommend this.

This book is an easy yet insightful read that looks at the changes and roles facing those who care for loved ones with Alzheimer's. Not every chapter will apply to your situation, but this a valuable introduction that informers without overwhelming.