Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts

Wednesday, April 11, 2012

Painted Diaries: A Mother and Daughter's Exprience through Alzheimer's Review

Painted Diaries: A Mother and Daughter's Exprience through Alzheimer's
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Covering a period of eleven years (1982-1993) in the life of one family, this touching book chronicles one woman's Alzheimer's journey through her own journal entries, and the paintings and journal of her daughter, Kim. Treasured family photos are included, for example there is, made in 1982, is a group picture of four generations, including Kim's mother, a former journalist, her grandmother, and her daughter at nine weeks old. There is even a photo of the mother's declining writing, as she wrote "I love you" in the fall of 1989. As the years passed and the disease progressed in her mother's life, Kim, a teacher, artist, and graduate student working on a degree in art, was influenced by the disease in her paintings. Kim's paintings changed as she explored her family's emotional struggle and visualized her mother's feelings in her work. Kim and her mother's journey was aided by their creativity in helping them cope, understand, and express the changes brought about by what her mother called "Al, Mrs. Zheimer's son".

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Sunday, January 1, 2012

The Wounded Storyteller: Body, Illness, and Ethics Review

The Wounded Storyteller: Body, Illness, and Ethics
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Frank's novel does a masterful job in identifying the "voice" we all need in the battle with life threatnening illness. Embracing and affirming the "whole person" through their storytelling goes far in overcoming the modernist approach in treating the illness without the person. Recognizing the struggle as an opportunity for journey also sounds the call to help others currently in the trenches to bring about healing. This is a beautiful book.

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In At the Will of the Body, Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait.Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.

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Sunday, December 25, 2011

Losing My Mind : An Intimate Look at Life with Alzheimer's Review

Losing My Mind : An Intimate Look at Life with Alzheimer's
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As a reader who has progressed from mild to moderate Alzheimer's [ALZ aka CRS]since January, 2002; and who is acutely aware of his own Rapid Onset in a Late Onset prognosis, I begged my Caregiver to order this for me asap, which she did. My own CRS has caused me to become unable to view complicated movies such as "Iris" and "Godsford Park" or multilayered television such as "West Wing" or "CSI." Similarly, the ability to complete reading a book more than 3 or 4 pages at a time has departed, never to return. But, like when I received "The Forgetting" by Shenk, I was able to read this 207 page saga, cover to cover, in less than a single 24 hour time span, aka "one day". My window of clarity, which happens less than once a quarter, gave me the grace to assimilate deBaggio's message, just as I was able to do before I became an Emeritus Professor in 1993.
The writing by DeBaggio is superb, his poetry shines on every page! And he has been blessed with outsanding collaborators and editors who polished his rough diamond into the superb blue white gem which "Losing My Mind" is. De Baggio does NOT record a descent to madness, but rather an ascent into a Mount Carmel of shining sanity, despite his testimony to the contrary. The literature of ALZ is overwhelmed with desciptions, diagnoses,and understandings for/of the saintly Caregivers and facilitators who guide our descent into a Dante inferno. BUT, there is next to nothing wherein the person diagnosed with Alzheimer's tells us what is going on inside their crania. "Speaking with Alzheimer's" and "Into the Labyrinth [out-of-print]" are two other exceptions.
Once we are diagnosed, it is as if we no longer are sentient human beings, capable of intellectual cognition. Our ability to convery our intelligence and meanings to others does deteriorate rapidly, particulary with aphasia, but the human entity is still there and functioning even though the ability to respond has vanished: i.e. a CRSer hears and understands all that is said in his/her presence, even though the ALZer cannot communicate that understanding.
Inspired by DeBaggio, I, too, have commenced a Journal of sorts, with the hope of telling others exactly what my sensations are as my hippocampus turns into Gorgonzola. {In my own situation, I have rewired my brain to eliminate frustration over a lack of word recall, and working memory recall, with the help of positive reinforcement, Qi Gong Nirvana state deep meditation, Vitamin B6, B12,E, and Aricet. Thus I have forced a window of clarity to write this critique, and DeBaggio has given this clinically diagnosed unipolar Depressive and CRSer hope that he can aid others before I am unable to lift my head or swallow. Like DeBaggio, the light at the end of my tunnel is an ALZ locomotive, at full speed, headed towards my demise, yet like him, I hope I can locate an agent, collaborator, and editor, so that my own Pilgrim's Progress will be a gift to my seven children and eleven grandchildren, {I include Andrew!}, when the words jumble and chaos reigns supreme, as it already has commenced.
Thank you very much Thomas, for your Augustinian "Confession!" I wish all of us fellow travelors, a "Safe Return."

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Thursday, November 17, 2011

Memory Rehabilitation: Integrating Theory and Practice Review

Memory Rehabilitation: Integrating Theory and Practice
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They say the memory is the first thing to go, but can it be taken back? "Memory Rehabilitation: Integrating Theory and Practice" is a scholarly psychological text discussing memory and how to rehabilitate it when faced with disorders such as amnesia, memory loss attributed to age and other disorders such as Alzheimers. The therapies listed include everything from simple aids to ways to train one's mind. "Memory Rehabilitation" is a informed and highly scholarly text that does well in every community or college library collection that focuses on psychology and its disorders.

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From a well-known authority, this comprehensive yet accessible book shows how state-of-the-art research can be applied to help people with nonprogressive memory disorders improve their functioning and quality of life. Barbara Wilson describes a broad range of interventions, including compensatory aids, learning strategies, and techniques for managing associated anxiety and stress. She reviews the evidence base for each clinical strategy or tool and offers expert guidance on how to assess patients, set treatment goals, develop individualized rehabilitation programs, and conduct memory groups. The book also provides essential background knowledge on the nature and causes of memory impairment.

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Friday, October 7, 2011

Taking Charge of Your Health: A Guide to Getting the Best Health Care as You Age Review

Taking Charge of Your Health: A Guide to Getting the Best Health Care as You Age
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One of the persistently nagging challenges of trying to improve health and health care for older Americans is the general public's refusal to believe that it needs improvement. Despite lots of good reasons to the contrary:
-Most people are happy with their health care providers and don't appreciate the pervasive problems of quality and safety that exist for all patients, much less the specific failings of care for older adults.
- People don't want to be defined as "old," so why would they want care from geriatric specialists?
- Older people don't understand how much better off they could be if they had access to care that was more specifically targeted to deal with the issues of older adults; better organized to provide care; coordinated over time and across settings; and more comprehensive, drawing on the full range of medical, social, and community resources available
Into this breach have stepped two of the nations' outstanding geriatricians, Drs. William Hall of The University of Rochester's School of Medicine and Dentistry [...] and John Burton of Johns Hopkins. [...]
In their new book, Taking Charge of Your Health: A Guide to Getting the Best Health Care as You Age, the authors explain that while they had initially planned to write for an audience of medical students, trying to communicate with the general public and older people themselves seemed a higher priority.
Drs. Hall and Burton try to demystify the intricacies of the "health care system" (e.g., the relationship between primary care generalists and specialists, the relationship of hospital care to sub-acute rehabilitation, etc.) as they work in meeting the common needs of older adults. They encourage every older person to find a skilled and empathetic primary care physician who understands and supports his or her personal values. (A simple test for attitudes and interest in caring for older people--ask for advice on special senior services like retirement communities or nursing homes.) And they try to explain why this is all so important:
"Older persons require the best care that medicine has to offer. The older one is, the more this is true, for many reasons, but three in particular. First, with age, we gradually lose physiological "reserve" in all organ systems. Second, we tend to accumulate a variety of chronic illnesses. Third, seniors are the most heterogeneous (diverse) of any age group of patients. Thus, it is very important for your doctor to exercise sound judgment and carefully consider all options in any clinical situation you may encounter."
They go on to explain and defend the concept of the inter-professional health care team for the care of older people, which patients frequently view with initial suspicion:
"In geriatric medicine, this [team care] is the norm rather than the exception. For you, this may at first seem confusing, but it generally is superior to care from one health care provider working alone...The value of team care is the accessibility, wisdom, judgment, and knowledge base is greater in a team than in a single practitioner functioning alone. However, for a team to function effectively there must be training and a clear system of communication that allows for frequent, highly efficient time in a 'huddle.'"
Finally, they advise those of us who are older (and those younger people among us who would like to be healthy when they grow old) to embrace our own responsibilities and promote our own health. These include: finding skilled health care professionals and working with them effectively, managing medications (including over-the-counter drugs and nutritional supplements), and maintaining a healthful weight and adequate physical activity.
Drs. Burton and Hall are two of the most illustrious, committed, and caring physicians in the country (and I know many of them). Their contributions to the care of older adults are too numerous to list, and they have led the development of the field of geriatric medicine for 20 years. Given their central roles, I was delighted to find they had written about so many key issues for the public. I hope that older adults and their loved ones take the time to read this book and consider the authors' wise advice.


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Frustrated with doctors' visits that last less than fifteen minutes? Unclear about how to best choose a physician? Confused by our complicated health care system? Experienced geriatricians John R. Burton and William J. Hall can help you take charge of your own health and get the best care available. Drs. Burton and Hall have decades of experience helping seniors navigate this country's complex health care system. They distill that knowledge here, providing you with the information you need to skillfully communicate with your health care providers. This book addresses such questions as• Do I need a general physician, or a specialist, or both?• What does a geriatrician do?• How do I prepare for and get the most out of a visit to the doctor?• What screening exams should I undergo?• What is the best way to take my medications?As you grow older, it is more important than ever to maintain good health. To do so, you need to know how to best access the health care system and improve your personal health practices. In Taking Charge of Your Health, you will find practical advice from two senior geriatricians on how to do both. Drs. Burton and Hall emphasize that you are unlikely to receive good health care unless you work for it. They urge older adults to ask questions, become informed, and obtain the care they deserve.

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Saturday, July 23, 2011

The Moon in the Water: Reflections on an Aging Parent Review

The Moon in the Water: Reflections on an Aging Parent
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Kathy Phillips writes of her experiences as she takes her aging father from his house in Connecticut into her apartment in Hawai'i. She is middle-aged and single with a Ph.D. in Comparative Literature, but considers herself "a closet religion major." He is a retired fireman who needs a wheelchair and has memory loss.
The author uses the symbolism and iconography associated with Water Moon Quan Yin, a specific aspect of the Buddhist boddhisattva (enlightened soul), to frame her compassion and caring as she copes with the problems and adjustments both people must face in dealing with their new living situation. Anyone who has been in this situation of suddenly caring for an aging parent knows the difficulties of such a change. The author has a brilliant idea to call on the Goddess of Compassion as a guide at this time of her life.
Each chapter begins with a description of some painting or other depiction of Water-Moon Quan Yin pointing out the symbolism and meaning. She then goes on to describe an event in her life with her father that is wonderfully gentle and compassionate (even when the reader can see the frustration and difficulties behind the text). It is in these loving depictions of the process of interpersonal integration that this book is at its best.
The verbal descriptions of Quan Yin and her role in Buddhist thought are well done and ideally suited to the non-academic reader. While a lesser part of the book, they are a joyful addition. I would not recommend this book as a first source for Quan Yin study, but it is a pleasant benefit for those seeking information on elder care.
I feel that the weakest part of the book is the Quan Yin iconography. Either absent, poorly reproduced in black and white plates, or sketched by the author they leave me craving more. The author does provide a 6 page listing of "Sources for Art Works Described or Reproduced" for those like me who cry out for more. However full-color prints would have been a delight to match the gentle prose of the text.

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Named a Best Book of 2008 by Library Journal
In a series of moving vignettes, the author begins by describing a particular representation of Water-Moon Kuan Yin, a Buddhist teacher and goddess associated with compassion, who often sits on a precarious overhang or floats on a flimsy petal.Then Kuan Yin steps out of the frame to join the author in the mundane challenges of caring for her father-transferring his health insurance, struggling with a wheelchair van, managing adult diapers, or playing in the fictions of dementia.From perplexed to poignant to funny, the vignettes record the working-class English of a fading but still wise dad, and they find other human versions of Kuan Yin in a doctor who will still make house calls or kind strangers in the street.
The book includes ten illustrations: both classical representations of Kuan Yin and also the author's own drawings, which adapt Kuan Yin in an act of practical spirituality, reading art through life and life through art. Each vignette invites the harried caregiver to take a deep breath and meditate on the trials and joys of caring for an aging parent.

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