Showing posts with label elder care. Show all posts
Showing posts with label elder care. Show all posts

Wednesday, February 29, 2012

It Shouldn't Be This Way: The Failure of Long-Term Care Review

It Shouldn't Be This Way: The Failure of Long-Term Care
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I recommend this book highly, having read it shortly after my father had to go into a nursing home. It resonated completely with my overall experience and made me more assertive in pushing for changes at the home where my father resided. Like the authors, I have experience with medical practice, as I'm a professor teaching medical students, but encountered the same frustrations that Dr. Kane describes. The lists of questions to ask and things to be cautious about at the end of each chapter are great resources for anyone who is, or may become, responsible for the care of an aging relative . Dr. Kane's sad, but engaging, story of his mother's experiences during her declining health illustrates the many difficulties in changing a system of care for the elderly that has depended too much on the good will and dedication of underpaid and often inadequately trained staff at assisted living and nursing homes. The problems Dr. Kane describes happen far too often.

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The failure of long-term care is the country's best-kept embarrassing secret. Almost every adult in the United States will either enter a nursing home or have to deal with a parent or other relative who does. Studies show that 40 percent of all adults who live to age sixty-five will enter a nursing home before they die, while even more will use another form of long-term care.
Part memoir, part practical guide, part prescription for change, It Shouldn't Be This Way is a unique look at the problems of long-term care. Robert L. Kane, a highly experienced physician and gerontologist, and his sister, Joan C. West, tell the painful story of what happened to their mother after she suffered a debilitating stroke and spent the last years of her life in rehabilitation, assisted-living facilities, and finally a nursing home. Along the way, her adult children encountered some professionals who were kind and considerate but also many frustrations--inadequate care and the need to hire private duty aides, as well as poor communication and lack of coordination throughout the system. The situation, they found, proved far more difficult than it needed to be.
As the authors recount their mother's story, they impart various lessons they learned from each phase of the experience. They alert those who are confronting such situations for the first time about what they will likely face and how to approach the problems. Closing with a broader look at why long-term care is the way it is, they propose steps to make necessary reforms, including the development of national organizations to work for change. Their message to families, care professionals, and policy-makers could not be more urgent.

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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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