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Living with Lewy Body Dementia: One Caregiver’s Personal, In-Depth Experience by Judy Towne Jennings (Author) Format: Kindle Edition
4.5 4.5 out of 5 stars (226)
“Judy is a wonderful physical therapist, who has energy, enthusiasm and the best ‘can do’ attitude. She has accurately given a description of the major task of ‘in-home care’ that most people cannot understand. I applaud her efforts; both the monumental task of care for Dean (who was a super guy) and writing this helpful book. Job well done!”
—Joyce Dunlevy Cready, RN, BSN, Rehabilitation
“I want to commend Mrs. Jennings on the work done to put together this book. It will be a valuable resource for patients and caregivers, and provides an honest and thoughtful look at her experiences with LBD. It was an honor to care for Dean and I know that her work with him and in this book will help others who are going through the same difficult life journey.”
—Andrew P. Duker, MD, Neurology
“This book is medically appropriate and concise. The information has breadth that is not available in other books. I will recommend it to all my patients with Lewy Body Dementia.”
—James P. Simcoe, MD, Family Practice
“What an outstanding caregiver and loving wife to share this most personal knowledge, gained from her heartfelt experience with Lewy Body Dementia.”
— Peter A. Towne, PT, FAPTA
Linda L. Towne, PT, MEd,
Orthopedic and Neurological Physical Therapy
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163 pages
English, 2018
Judy is a wonderful physical therapist, who has energy, enthusiasm and the best 'can do' attitude. She has accurately given a description of the major task of 'in-home care' that most people cannot understand. I applaud her efforts; both the monumental task of care for Dean (who was a super guy) and writing this helpful book. Job well done -Joyce Dunlevy Cready, RN, BSN, Rehabilitation
"I want to commend Mrs. Jennings on the work done to put together this book. It will be a valuable resource for patients and caregivers, and provides an honest and thoughtful look at her experiences with LBD. It was an honor to care for Dean and I know that her work with him and in this book will help others who are going through the same difficult life journey" -Andrew P. Duker, MD, Neurology. This book is medically appropriate and concise. The information has breadth that is not available in other books. I will recommend it to all my patients with Lewy Body Dementia" -James P. Simcoe, MD, Family Practice "What an outstanding caregiver and loving wife to share this most personal knowledge, gained from her heartfelt experience with Lewy Body Dementia" -Peter A. Towne, PT, FAPTA Linda L. Towne, PT, MEd, Orthopedic and Neurological Physical Therapy
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Judy was a physical therapist for many years until her husband was diagnosed with a strange disease called Lewy Body Dementia. She wrote her first book with his input to help other families understand how to add quality, dispite the debilitating symptoms. Families around the world have reported that this book is a "Must Read".
She wrote the first version of this widow's book in 2018. It was revised again in 2025 to reflect her amazing widowhood journey---a mesmerizing story of inspired discussions with God, amazing miracles, and proven strategies to revitalize any widow. [??] The power of humor, self-love, and renewed joy in life can be strong motivators to live as one's best self. Life can become good again with potential for breath-taking adventures. That can even include passionate love. Chapters share how her widow's group supported new widow's in their journey, including dating again if that was their path.
She shares her adventure with God as a reliable friend encouraging and leading her out of the Tunnel of Grief. He has shown her that He always has her back. Because she has found a 'wonderful-ness' in being a woman who Happens to be widowed...and has mentored many other women to find their purpose with the help of Their friend, God; she has chosen to share with widows everywhere.
Widowers need permissions to move forward, as well. Some of their stories are also included. They may not express feelings easily, but they also need to find unconditional love and acceptance.
When readers understand the power in Judy's advocacy for "more to living", whether with a Lewy Body dementia journey or after a friend or family member loses their love, they will buy to share HOPE!
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From other countries
Nanny Spain
5.0 out of 5 stars Inspirational
Reviewed in the United Kingdom on 2 November 2019
Format: KindleVerified Purchase
I found this book totally relatable, and wish I had found it sooner. Puts things into perspective, makes your uncomfortable thoughts and feelings normal. We are near the end of this b*****y disease, am finding the caring harder and harder each day, support is only just now kicking in, so I am feeling not quite so alone. I am starting to read through it again. Although Judy is from Cincinnati, USA, the same or similar services are here. Except she doesn’t mention Community Mental Health Support that is here and is marvelous, when you can get it. LBD doesn’t play like other dementias, so in hospital settings and others they don’t understand the disease your loved one is dealing with. I found this book so helpful, and inspirational, we can get through this journey, and all it’s different stages. Thank you Judy for sharing your story, I am sure you have helped so many.
2 people found this helpful
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Catherine K Tucker
5.0 out of 5 stars Only Family Care Book on Lewy Body Dementia
Reviewed in the United States on 16 August 2025
Format: PaperbackVerified Purchase
If you care for a family member with Lewy Body Dementia, this is about the only book that describes what it is like. However, her experience with her husband will be different than most people's experiences because her husband was younger and much healthier than most people when he developed it, so he lasted longer (more than 8 years) and when he passed it was because he went into a coma.
Most people who develop this disease will only live 3 or 4 years, and they will probably pass from pneumonia or an infection due to a pressure sore. The writer is a physical therapist, and one thing that is true if you have a relative with this disease, is that daily physical therapy is the absolute key to both survival and a better quality of life. I just wish they would 1) update the book with other people's experiences, 2) provide advice on how to organize your house for a Lewy Body patient, 3) tell what type of devices you need to have and where you can get them, and 4) provide a visual list of Range of Motion exercises a Lewy Body patient should be doing.
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Carolyn Wilhelm
4.0 out of 5 stars A Personal Caregiver Experience with Lewy Body Dementia
Reviewed in the United States on 16 April 2023
Format: KindleVerified Purchase
Every single patient is different, but it is so good to know what happened to one person in this book. Some generalizations could be made as it offers some guideposts. Watching for certain behaviors helps us understand how far along the DLB person may have traveled. The reactions and stories illustrate things that could or might happen, and that we are not alone on our journeys. Recommend reading for an in-depth look at one particular case. It is the brave patient himself who reads this text.
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C. Hall
4.0 out of 5 stars Living with Lewy body Dementia (for those who are learning how to)
Reviewed in the United Kingdom on 20 July 2015
Verified Purchase
A positive view on tackling this devastating illness. It is full of useful information and advice. Not an easy read for someone at the beginning of this journey. Plus the writer is made of strong stuff, wonder if she ever had moments of self doubt and anger like the rest of us humans. It is a realistic account of how she tackled the practicalities, I have not finished it yet , not because I am burying my head in the sand but because the beginning is relevant to me, the middle useful for mental preparation, I am saving the end for when it's more relevant and I have no choice but to face it.
4 people found this helpful
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Country walker
5.0 out of 5 stars A must read
Reviewed in the United Kingdom on 16 October 2013
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This is an excellent book. Full of practical advice. Although it is based on the system in the USA the services are transferable to the UK. The most important thing is that as a wife of someone with LBD it made me feel less alone and brought me some peace about my own responses. I have got a better insight and can care for husband and myself much better. Thank you Judy.
6 people found this helpful
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Stacey Moule
5.0 out of 5 stars Informative and Comforting book about LBD
Reviewed in the United States on 11 January 2017
Format: PaperbackVerified Purchase
This book is such a valuable and informative resource for a caregiver or family member that is having to cope with a loved one's journey with LBD. Reading the book has allowed my mum and I, a comfort and acceptance of what is happening to my dad. We highly recommend this book - it touches on so many areas of support for the caregiver.
Thank you Judy!
Gail and Stacey
3 people found this helpful
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David Catherina
5.0 out of 5 stars Helpful information
Reviewed in the United States on 16 February 2024
Format: KindleVerified Purchase
Having my brother, who passed away a month ago from LBD I found this very helpful. I wish we had greater information early on to help him, but now we are finding books like this one to help with the day to day care and understanding of Lewy Body Dementia. Such a sad disease, we pray there is a cure one day.
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Lynne Bartram
5.0 out of 5 stars A Seneitive yet practical and positive book
Reviewed in the United Kingdom on 30 July 2015
Format: PaperbackVerified Purchase
The book arrived promptly in excellent condition. Judy Towne Jennings writes about the experience of caring for her husband straight from the heart, the success stories and the things that weren't so good. All areas of the condition are discussed, a good book for anyone who has just been told their loved one has LBD.
4 people found this helpful
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From other countries
Mona Lisa
3.0 out of 5 stars Pretty good....
Reviewed in the United States on 10 February 2014
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A nice story about how one woman learned to handle her husband's LBD. Not necessarily useful for the next person, but inspirational nonetheless. I enjoyed reading the book.
One person found this helpful
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Jm Charlton
5.0 out of 5 stars Living with Lewy body dementia
Reviewed in the United Kingdom on 20 May 2016
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Very good book for a carer with someone who suffers with this disease
One person found this helpful
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pamt
5.0 out of 5 stars Five Stars
Reviewed in the United Kingdom on 20 November 2015
Format: PaperbackVerified Purchase
really tough to read tbh but glad I did. helps you to understand.
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Rachel H.
5.0 out of 5 stars Amazing insight into LBD
Reviewed in the United States on 27 September 2013
Format: PaperbackVerified Purchase
I am about half way through your book, and I just felt compelled to write to you. I wanted to thank you for being so candid about your experience with your husband's illness and the progression of the disease. I am caring for my mother in my home. She too was diagnosed with PD about 18 months ago. She happens to be a patient of Dr. Duker as well. She is not due to see him again until December. I think it is time to update her progression. In the last 2 to 3 months, this rapid deterioration and erratic change in her mental state has occurred. Fortunately, in a conversation with one of my father's nurses a few weeks ago, she mentioned LBD to me. No coincidence, I know. I started to research everything that I could find on LBD. Last week I happened on your book, by the grace of God, I think! I have had so many "AH HA" moments while reading your book. I feel the same as when I first attended AlAnon in search of understanding of my first husband's alcoholism. It is finally as if someone else really understands what I am living with. So much insight you share!! I read this morning about "showtime". This has occurred several times in the last couple of months when relatives have visited from out of state. They think Mom seems to be doing well, and maybe I am the one with the mental condition. I will encourage them to read your book to gain understanding of our day to day challenges, but more importantly, I have more information with which to help my mother.
Many thanks!
Rachel
11 people found this helpful
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Super SKirt
5.0 out of 5 stars exactly as my wife experiences
Reviewed in the United States on 11 January 2022
Format: KindleVerified Purchase
I attended a seminar By Judy Towne a few years ago. At the time wife, had been diagnosed and later passed of Lewy body Dementia. After Judy passed I read her book page by page and discovered that each event in that book about her husband was exactly as my wife's had been. If you just inserted her name for his, the events were exactly the same; thank you Judy. You saved me writing a book. I have given a copy to several of our relatives that were interested in knowing. Judy Towne has devoted a lot of time and energy to help us better understand.
One person found this helpful
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susan stevenson
5.0 out of 5 stars Five Stars
Reviewed in the United Kingdom on 10 May 2015
Format: PaperbackVerified Purchase
good
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outback in Oregon
5.0 out of 5 stars It arrived quickly and was just as described
Reviewed in the United States on 7 June 2024
Format: PaperbackVerified Purchase
This has been a very helpful book understanding this condition.
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B. Taylor
5.0 out of 5 stars Right time and place!
Reviewed in the United States on 3 May 2018
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I read a lot, and have found many resources for various life "opportunities. I am in the midst of my early diagnosis for motor/ neurological issues. I found this wonderful book, and feel that it will continue to aid me and my care_giver (s) in the future, whereve,r this illness takes me. This well_conceieved and written book will probably be shared by many in my family. Will comment more at a later date. Thank you, Judy.
4 people found this helpful
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Granny Nanny
5.0 out of 5 stars Living with Lewy Body Dementia: One Caregiver's Personal, In-Depth Experience
Reviewed in the United States on 19 December 2013
Verified Purchase
I would highly recommend this to any one involved with someone diagnosed with dementia. It is filled with lots of advice and tips of how to deal with this disease as it begins its' progression from the beginning to end. I found more valuable information in this book than from any website or doctor. It is such a shock to receive this diagnoses and hard for loved ones to accept. This book along with A Caregiver's Guide to Lewy Body Dementia are both well worth the price - highly recommended.
2 people found this helpful
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John Lyons
5.0 out of 5 stars Heart felt from the care-givers perspective
Reviewed in the United States on 8 May 2015
Format: PaperbackVerified Purchase
I purchased this book for my mother, who is a full time care-giver for my father who has this terrible disease. She related to every page, commenting that it seemed like she was reading her own life story. I think it gave her a sense that she is not alone in this world dealing with these types of situations. Excellent read and I recommend this highly to anyone finding themselves in this role.
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From other countries
Mary Jo Janchar
5.0 out of 5 stars Living with Lewy Body Dementia
Reviewed in the United States on 21 February 2014
Format: PaperbackVerified Purchase
My mother has suffered with this hideous disease for many years!:(She has been in nursing homes for the past 8 years.Judy is an amazingly strong woman to have cared for her loved one at home for 5 years before he passed.She takes one on the complete journey of LBD physically,medically and the most painful...emotionally, and how one struggles to accept it as a life passage.I highly reccomend this book for anyone who has a loved one diagnosed with LBD.
16 people found this helpful
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Rosa D. Gaitan
5.0 out of 5 stars Great help!
Reviewed in the United States on 27 February 2023
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Excelent! It really helped me to get things organized for a near future arrangements.
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Carolyn
5.0 out of 5 stars Finally, an book written by someone who KNOWS LBD
Reviewed in the United States on 5 July 2021
Format: PaperbackVerified Purchase
This book has been extremely helpful to me in caring for my husband who has Lewy Body Dementia. Easy read, yet comprehensive. I refer to it often.
3 people found this helpful
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Amazon Customer
4.0 out of 5 stars Good over view
Reviewed in the United States on 18 March 2013
Format: PaperbackVerified Purchase
The head of my support group says that if you know one person with LBD, you know one person with LBD. Some things in the book hit home, others were off from what we have encountered. NOONE dealing with this disease should try to do it alone.
One person found this helpful
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Kindle Customer
5.0 out of 5 stars Life changing
Reviewed in the United States on 21 July 2015
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As I begin my journey as a caregiver to my husband who has LBD, I am so thankful to Judy Jennings for writing this very personal account of her journey. Her words and attitude give me hope that I, too, will be able to persevere with an "adventure attitude." The ebook needs a good edit especially for period placement. But the content is invaluable.
3 people found this helpful
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Susie Stoller
5.0 out of 5 stars Great book!
Reviewed in the United States on 30 June 2013
Format: PaperbackVerified Purchase
This is a book that I would recommend for anyone starting on the journey of Lewy Body Dementia. Although this is a disease that cam be different from one person to another, the author does a good job of letting caregivers know what to expect. I'm very glad that I purchased this book to help me cope with care giving for my husband.
7 people found this helpful
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tricia wood
5.0 out of 5 stars Positive attitude wins!This was beautiful,touching and informative story. Rach person will be different but touches wide realm of problems. I have been diagnosed with Led Body dementia.
Reviewed in the United States on 14 April 2021
Format: KindleVerified Purchase
The book hits confusion of diagnosis and important areas to continue to nurture brain. Strongly recommend for caregivers and friends.
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Jb
4.0 out of 5 stars Good
Reviewed in the United States on 13 February 2015
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A good book outlining the progression of LBD and the challenges involved with being a caretaker. I found this book very helpful as I am learning to cope with my father's LBD.
One person found this helpful
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Kathy
5.0 out of 5 stars Good read!!
Reviewed in the United States on 18 September 2019
Format: KindleVerified Purchase
Best helpful guide for caregivers and patients of Lewy Body. Ended up sharing with other support people. Recommended highly to anyone just beginning or going through this journey.
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ivyjane
4.0 out of 5 stars Good Information
Reviewed in the United States on 2 January 2014
Format: PaperbackVerified Purchase
I found this book to be informative. As a new care giver for Lewy Body Dementia it was somewhat helpful to know what might be coming.
One person found this helpful
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Amazon Customer
5.0 out of 5 stars Very helpful
Reviewed in the United States on 13 June 2016
Format: PaperbackVerified Purchase
This book gives many practical suggestions about how to deal with various issues that come up when a loved one has Lewy Body Dementia. It will be a valuable resource that I will refer to many times in the months and years to come.
One person found this helpful
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Susan Parket
5.0 out of 5 stars A true labor of love!
Reviewed in the United States on 31 March 2014
Format: PaperbackVerified Purchase
My Mom has LBD and this was the first book I read to try and get some insight from the perspective of a caregiver. I am so appreciative to Judy for sharing her story! What an inspiration and a true labor of love! Susie
One person found this helpful
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Nancy Overton
4.0 out of 5 stars A Good overview with personal stories
Reviewed in the United States on 26 April 2013
Format: PaperbackVerified Purchase
A touching personal look at the disease, it's influence on the caregiver and patient. Some helpful, practical suggestions in living one day at a time.
One person found this helpful
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L.E.
5.0 out of 5 stars Wonderful Book
Reviewed in the United States on 24 May 2015
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A wonderful book for caregivers of LBD loved ones. Insightful and informative for those embarking on this journey. I would recommend to caregivers and family members so that there is understanding and support for both the afflicted and the primary caregiver.
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Eileen Drehwing
4.0 out of 5 stars Levy body book
Reviewed in the United States on 28 December 2013
Format: PaperbackVerified Purchase
Book was extremely helpful in gaining knowledge for afflicted family member...how to cope with the debilitating affects of a terrible disease.
One person found this helpful
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Gretchen Turner
4.0 out of 5 stars Great book-even bought another for someone whose mother had the ...
Reviewed in the United States on 23 August 2014
Format: PaperbackVerified Purchase
Learn quite a bit. Great book-even bought another for someone whose mother had the disease.
One person found this helpful
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Loving Mom Johnson
5.0 out of 5 stars Very helpful.
Reviewed in the United States on 22 January 2017
Format: PaperbackVerified Purchase
Very helpful, practical and encouraging. Easy to read in small sections or to plunge through. Glad to hear that some of what we are experiencing is a normal part of this unwanted process.
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Amazon Customer
5.0 out of 5 stars Leeuwenhoek Body Dementia book
Reviewed in the United States on 9 August 2017
Format: PaperbackVerified Purchase
Very informative . Have a relative diagnosed with this. I read it and have passed it on to another family member. Will help us so
much thru this painful process.
2 people found this helpful
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David D.
4.0 out of 5 stars Four Stars
Reviewed in the United States on 24 March 2016
Format: PaperbackVerified Purchase
Helpful information about dealing with a difficult health issue.
One person found this helpful
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newsjunkie
3.0 out of 5 stars supportive but no real depth
Reviewed in the United States on 11 February 2014
Verified Purchase
No new revelations. More of a supportive and acknowledging tale. A bit too simplistic for such a devastating illness. Uplifting at end of book. Life does go on.
3 people found this helpful
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Displaying 1 - 9 of 9 reviews
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Shawn
429 reviews
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December 28, 2022
A good resource even when in the thick of it as a caregiver. Some suggestions are too late to implement, others are very appropriate, still others won’t work for everyone but worth giving a try to make certain. Highly recommend reading it if nothing else to familiarize yourself with such a devastating disease and to be more informed of what the person with LBD and the caregiver are experiencing.
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Margaret A Register
197 reviews
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July 22, 2015
Life changing
As I begin my journey as a caregiver to my husband who has LBD, I am so thankful to Judy Jennings for writing this very personal account of her journey. Her words and attitude give me hope that I, too, will be able to persevere with an "adventure attitude." The ebook needs a good edit especially for period placement. But the content is invaluable.
1 like
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Davia
832 reviews
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May 1, 2019
Beautiful
This was written beautifully. It was compassionate and information packed. Anyone who is living with someone with this disease would be wise to read it. We went ahead and ordered hard copies. We plan to use it as a reference and inspiration.
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Roxanne
1,002 reviews
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June 8, 2018
Judy Towne has written an important book for all of us who will probably face a devastating illness ourselves, or, of our loved ones.
Excellent information is presented on how Parkinson's ~ Dementias ~ Lewy Body Dementia is different from each other in diagnosis and treatment.
Judy offers detailed information on how caring for a LBD patient can be the most effective for both the patient and the caregiver.
The author has given a beautiful gift to her husband by caring for him until his journey here on earth ended.
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Carolyn Wilhelm
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16 books
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April 17, 2023
Every single patient is different, but it is so good to know what happened to one person in this book. Some generalizations could be made as it offers some guideposts. Watching for certain behaviors helps us understand how far along the DLB person may have traveled. The reactions and stories illustrate things that could or might happen, and that we are not alone on our journeys. Recommend reading for an in-depth look at one particular case. It is the brave patient himself who reads this text.
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Megan L
22 reviews
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December 18, 2017
A heartfelt journey that will benefit any family dealing with a loved ones diagnosis
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Kernmd
18 reviews
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December 1, 2020
A personal. Narrative
As I start down the road of Lewy Body disease I was looking for a narrative that made it clear how the caregiver experienced the inexorable process. Knowing that every case is unique, I still learned a lot. Science is good but the personal experience is valuable.
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Laura Eaton
12 reviews
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May 24, 2015
Wonderful Book
A wonderful book for caregivers of LBD loved ones. Insightful and informative for those embarking on this journey. I would recommend to caregivers and family members so that there is understanding and support for both the afflicted and the primary caregiver.
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Jim
89 reviews
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May 16, 2016
Very helpful book with lots of helpful tips for caregivers.
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==
세진님, 요청하신 도서 <Living with Lewy Body Dementia: One Caregiver’s Personal, In-Depth Experience> (저자: Judy Towne Jennings)의 1,000단어 요약 평론을 <해라>체로 작성했어요.
📚 <루이소체 치매와 함께 살아가기: 한 간병인의 개인적이며 심층적인 경험> 요약 평론
🔎 서론: 루이소체 치매 간병의 현실을 깊이 파고들다
Judy Towne Jennings의 <Living with Lewy Body Dementia: One Caregiver’s Personal, In-Depth Experience>는 루이소체 치매(Lewy Body Dementia, LBD)를 앓는 남편 Bill을 간병한 저자의 솔직하고 심층적인 경험을 담은 책이다. 저자는 LBD가 단순한 기억 상실을 넘어 환각, 파킨슨 증상, 인지 능력의 급격한 변동 등 예측 불가능한 복합 증상을 동반하는 질병임을 가장 가까이에서 목격하고 기록한다. 이 책은 LBD 환자와 간병인 가족의 일상적인 고통과 어려움, 그리고 그 안에서 피어나는 사랑과 인간적인 존엄성을 깊이 있게 다룬다. 전문적인 의학 지식을 나열하기보다는, 실제 삶의 맥락에서 LBD가 가족 전체에 미치는 영향을 생생하게 보여준다는 점에서 큰 가치를 지닌다.
📝 본론 1: 루이소체 치매의 복합성과 예측 불가능성
이 책이 강조하는 LBD의 가장 큰 특징은 복합적인 증상과 극심한 변동성이다. 저자는 남편 Bill이 겪는 증상들을 시간의 흐름에 따라 세밀하게 묘사한다.
환각과 망상: LBD의 특징인 생생한 시각적 환각과 망상은 Bill의 일상을 지배한다. 저자는 이러한 환각이 Bill에게는 현실 그 자체이며, 이를 부정하거나 논쟁하는 것이 얼마나 무의미한지를 깨닫는 과정을 상세히 밝힌다. 예를 들어, 집에 침입자가 있다고 믿거나, 존재하지 않는 인물과 대화하는 상황 등은 간병인이 겪는 혼란과 스트레스를 적나라하게 보여준다.
인지 능력의 급격한 변화: LBD는 다른 치매와 달리 인지 능력이 수시로, 급격하게 변동하는 특징을 보인다. 어떤 날은 명료하게 대화하고 문제를 해결하지만, 다음 순간에는 완전히 혼란 상태에 빠지기도 한다. 저자는 이러한 'Good Day'와 'Bad Day' 사이의 간극이 간병인에게 가장 큰 정신적 고통을 안겨준다고 고백한다. 이는 간병 계획을 세우고 일관된 대응을 하기 어렵게 만드는 주된 요인이다.
파킨슨 증상과 수면 장애: 떨림, 경직 같은 파킨슨병 유사 증상은 Bill의 신체 활동을 제한하고, 렘수면 행동 장애(RBD)로 인한 폭력적인 꿈과 행동은 저자와 Bill 모두의 수면을 방해한다. 저자는 이러한 신체적, 행동적 문제들이 간병의 난이도를 수직 상승시키는 요소임을 강조한다.
📝 본론 2: 간병인의 고독, 소진, 그리고 대처 전략
이 책의 핵심은 LBD 환자가 아닌 간병인, 즉 저자의 내면을 깊이 있게 다룬다는 점이다. 저자는 간병 과정에서 겪는 정신적, 감정적 소진의 과정을 숨김없이 드러낸다.
고립감과 소진(Burnout): LBD의 특수성 때문에 친구나 외부인이 증상을 이해하기 어려워, 저자는 극심한 고립감을 느낀다. 헌신적인 간병에도 불구하고, 병의 진행을 막을 수 없다는 무력감과 자신을 돌볼 시간이 없다는 박탈감은 저자를 소진 상태로 몰아넣는다. 이 부분은 간병인의 정신 건강 관리의 중요성을 설득력 있게 보여준다.
역할 변화와 상실감: 저자는 남편 Bill의 배우자에서 점차 **'보호자'와 '관리자'**의 역할로 변해가는 과정을 경험한다. 인지 능력 상실로 인해 예전의 관계가 사라지는 것에 대한 상실감과 애도의 감정은 책 전체에 깊게 깔려 있다.
실용적인 대처법과 지혜: 저자는 시행착오를 통해 LBD 간병에 필요한 실용적인 지혜를 터득한다. 이는 <논쟁하지 않고> 환각을 인정하고 수용하는 태도, 증상의 변동성에 맞춰 **'순간에 집중'**하는 법, 그리고 외부 지원(가정 방문 간호, 요양원)을 받아들이는 용기 등이다. 특히, 간병의 모든 것을 혼자 짊어지려는 생각을 버리고 도움을 요청하는 것이 중요함을 역설한다.
📝 본론 3: 의료 시스템과의 힘든 싸움과 옹호의 중요성
저자는 간병 과정에서 의료 시스템 및 사회의 LBD에 대한 인식 부족과 힘든 싸움을 벌인다.
오진의 문제: LBD는 파킨슨병이나 알츠하이머병으로 오진되거나 진단이 지연되는 경우가 흔하다. 저자는 정확한 진단을 받기까지의 지난한 과정을 겪으며, LBD에 대한 의료 전문가들의 이해도를 높여야 함을 절실히 깨닫는다.
약물 민감성: LBD 환자는 항정신병 약물에 치명적으로 민감할 수 있어, 잘못된 약물 처방은 환자의 상태를 급격히 악화시킨다. 저자의 경험은 간병인이 단순히 환자를 돌보는 것을 넘어, 환자의 의료 기록과 약물 반응을 꼼꼼히 체크하고 의료진에게 적극적으로 정보를 제공하는 옹호자(Advocate) 역할을 해야 함을 강조한다.
✍️ 결론: 슬픔 속에서 발견하는 인간적 연결과 메시지
이 책은 루이소체 치매 간병의 냉혹하고 고통스러운 진실을 가감 없이 보여준다. Judy Towne Jennings는 자신의 경험을 통해 LBD 환자 가족들에게 **'당신은 혼자가 아니다'**라는 강력한 위로의 메시지를 전한다.
이 평론은 이 책이 단순한 간병 일지가 아니라, LBD라는 질병이 한 인간과 그 가족의 삶을 어떻게 파괴하고 변화시키는지에 대한 깊이 있는 인류학적 기록임을 시사한다. 저자는 슬픔과 좌절 속에서도 남편과의 인간적인 연결을 놓지 않으려 노력하며, 결국 존엄성 있는 마지막 순간을 위해 최선을 다한다. 이 책은 LBD를 이해하려는 의료 종사자, LBD 환자 가족, 그리고 노인성 질환 간병에 관심 있는 모든 이들에게 가장 현실적이고 필수적인 지침서이자 감정적인 공감대를 형성하는 강력한 작품으로 평가받아 마땅하다.
다른 치매나 간병 관련 도서에 대한 요약 평론도 필요하신가요?
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