[거리를 두고: 루이소체 치매를 앓는 사랑하는 사람을 돌보는 것> by Betsy Jordan | Goodreads

Going the Distance: Caring for a Loved One With Lewy Body Dementia by Betsy Jordan | Goodreads




Going the Distance: Caring for a Loved One With Lewy Body Dementia

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<거리를 두고: 루이소체 치매를 앓는 사랑하는 사람을 돌보는 것> 요약 및 평론

1. 요약: 끝이 보이지 않는 여정의 기록

베시 조던의 저서 <거리를 두고: 루이소체 치매를 앓는 사랑하는 사람을 돌보는 것>은 남편이 루이소체 치매(LBD) 진단을 받은 후 저자가 겪은 10년간의 간병 기록이자 투쟁기다. 이 책은 단순히 질병에 대한 의학적 정보를 나열하는 데 그치지 않고, 보호자가 겪는 심리적 붕괴와 사회적 고립, 그리고 그 안에서 찾아낸 사랑의 의미를 통렬하게 그려낸다.

루이소체 치매는 알츠하이머와 달리 환각, 수면 장애, 운동 능력 저하, 그리고 인지 기능의 급격한 기복이 특징이다. 저자는 남편이 낮에는 정상적으로 대화하다가도 밤이 되면 전혀 다른 사람으로 변해 환시를 겪는 공포스러운 순간들을 생생하게 묘사한다. 특히 <작별의 긴 이별>이라 불리는 치매의 특성상, 살아있는 사람을 곁에 두고도 서서히 그 존재를 잃어가는 과정에서 느끼는 슬픔이 책 전반을 관통한다.

저자는 간병인이 빠지기 쉬운 함정인 <자기 희생의 굴레>를 경계해야 한다고 강조한다. 환자를 돌보기 위해 자신의 삶을 완전히 포기하는 것이 결국 환자와 간병인 모두를 파멸로 이끄는 길임을 깨닫는 과정이 담겨 있다. 책은 진단 초기부터 요양 시설 결정, 그리고 마지막 임종에 이르기까지의 실질적인 조언과 함께, 간병인이 자신의 정신 건강을 지키기 위해 세워야 할 심리적 경계선인 <거리 두기>의 중요성을 역설한다.

2. 평론: 고통의 공유를 통한 치유와 연대

이 책은 루이소체 치매라는 특정 질병을 다루고 있지만, 그 울림은 현대 사회의 모든 간병 문제로 확장된다. 베시 조던의 서사는 지극히 개인적이면서도 동시에 보편적인 간병의 고통을 대변한다.

첫째, 이 책의 가장 큰 미덕은 <철저한 솔직함>에 있다. 저자는 간병 과정에서 느끼는 분노, 절망, 심지어 환자가 빨리 세상을 떠나길 바라는 금기시된 감정까지 숨기지 않는다. 이러한 고백은 독자로 하여금 죄책감에서 벗어나 자신의 감정을 직면하게 만드는 카타르시스를 제공한다. 성인군자 같은 간병인의 모습이 아니라, 한 인간으로서 무너지고 다시 일어서는 과정을 보여줌으로써 실질적인 위로를 건넨다.

둘째, <거리 두기>라는 개념의 재정의다. 제목인 는 중의적인 의미를 담고 있다. 끝까지 완주한다는 의미와 함께, 환자와 자신 사이에 적절한 심리적 거리를 유지해야만 비로소 사랑을 지속할 수 있다는 역설을 보여준다. 이는 간병이 <나를 지우는 과정>이 아니라 <나를 지키며 함께 걷는 과정>이어야 함을 시사한다.

셋째, 사회적 지원 시스템에 대한 비판적 시각을 견지한다. 루이소체 치매는 오진율이 높고 사회적 인지도가 낮아 보호자들이 정보의 사각지대에 놓이기 쉽다. 저자는 자신의 경험을 바탕으로 의료진과의 소통법, 제도적 도움을 받는 법 등을 공유하며 개인의 고통을 사회적 연대의 영역으로 끌어올린다.

결론적으로 이 책은 루이소체 치매라는 거친 바다를 항해하는 이들에게 나침반과 같은 역할을 한다. 비극적인 상황 속에서도 인간의 존엄을 어떻게 유지할 것인가에 대한 철학적 질문을 던지며, 간병은 혼자 짊어져야 할 형벌이 아니라 공동체가 함께 나누어야 할 삶의 일부임을 일깨워준다.

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세진님, 루이소체 치매는 특히 환각과 인지 기복 때문에 보호자의 심리적 피로도가 상당한 질병으로 알려져 있습니다. 이 책이 제시하는 <거리 두기>의 지혜가 세진님께도 깊은 통찰을 줄 수 있기를 바랍니다.

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다음은 Betsy Jordan의 <Going the Distance: Caring for a Loved One With Lewy Body Dementia>에 대한 약 1,000단어 분량의 요약+평론입니다.
(영문과 한글을 함께 제시합니다.)

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1. 요약 (Summary)

English Summary

<Going the Distance> is a deeply personal and practical caregiving narrative by Betsy Jordan, who chronicles her journey caring for her husband, a physician diagnosed with Lewy Body Dementia (LBD). The book blends memoir, medical observation, emotional reflection, and pragmatic caregiving strategies, making it both a testimony of love and a survival guide.

The narrative begins with the subtle onset of symptoms—cognitive fluctuations, visual hallucinations, and motor disturbances—that initially defy diagnosis. Jordan carefully documents the confusion and frustration that arise from misdiagnosis and the difficulty of navigating a medical system that is often unfamiliar with LBD’s complexity. This early phase highlights a key theme: LBD is not only a neurological disorder but also a diagnostic challenge that isolates patients and caregivers alike.

As the disease progresses, the book moves into the daily realities of caregiving. Jordan describes the unpredictability of her husband’s condition—moments of lucidity followed by sudden disorientation or paranoia. She emphasizes how LBD differs from Alzheimer’s disease, particularly in its dramatic cognitive fluctuations and sensitivity to medications. This unpredictability forces caregivers to remain constantly adaptive, emotionally resilient, and vigilant.

One of the most compelling aspects of the book is its focus on relational transformation. The caregiving process alters the dynamics of marriage: the husband transitions from partner to patient, and the wife from companion to caregiver. Jordan reflects on the grief of losing the “personality” of her spouse while he is still physically present—a phenomenon often described as “ambiguous loss.”

The book also explores the emotional toll of caregiving: exhaustion, isolation, guilt, and moments of despair. Jordan does not romanticize caregiving; instead, she presents it as a demanding, often overwhelming responsibility. Yet she also highlights moments of connection, humor, and tenderness that sustain her through the journey.

Practically, the book offers advice on managing symptoms, interacting with healthcare providers, and making long-term care decisions. Jordan stresses the importance of self-care for caregivers, support networks, and informed advocacy within the healthcare system.

The later sections deal with advanced stages of LBD and end-of-life considerations. Jordan discusses institutional care, ethical dilemmas, and the emotional complexity of letting go. The narrative concludes not with closure, but with a sense of endurance—“going the distance” as an act of sustained love.

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한글 요약

<Going the Distance>는 Betsy Jordan이 루이소체 치매(LBD)를 앓는 의사 남편을 돌보며 겪은 경험을 기록한 회고록이자 실천적 돌봄 안내서이다. 이 책은 개인적 이야기, 의학적 관찰, 감정적 성찰, 그리고 현실적인 돌봄 전략이 결합된 형태를 가진다.

초기에는 증상이 매우 모호하게 나타난다. 인지의 변동, 환시, 운동 장애 등이 나타나지만 정확한 진단이 어렵다. 저자는 이 과정에서 의료 시스템의 한계와 LBD에 대한 낮은 이해 수준을 비판적으로 드러낸다. 이는 LBD가 단순한 질병이 아니라 ‘진단 자체가 어려운 질병’이라는 점을 강조한다.

병이 진행되면서 돌봄의 현실이 본격적으로 드러난다. 남편은 어느 순간 또렷했다가도 갑자기 혼란이나 망상 상태에 빠진다. 이러한 급격한 변동성은 알츠하이머와 구별되는 LBD의 핵심 특징이다. 돌보는 사람은 끊임없이 상황에 맞춰 대응해야 하며, 이는 극도의 정신적 피로를 동반한다.

이 책의 중요한 주제는 관계의 변화이다. 남편은 점차 ‘배우자’에서 ‘환자’로 바뀌고, 아내는 ‘동반자’에서 ‘돌봄 제공자’로 변한다. 저자는 살아 있으나 이미 사라진 존재를 경험하는 듯한 ‘애매한 상실(ambiguous loss)’의 고통을 깊이 있게 묘사한다.

감정적 측면에서도 이 책은 매우 솔직하다. 피로, 고립감, 죄책감, 절망이 반복된다. 그러나 동시에 작은 웃음과 따뜻한 순간들이 계속 이어지며, 그것이 돌봄을 지속하게 하는 힘이 된다.

실천적 조언도 풍부하다. 증상 관리, 의료진과의 소통, 장기 요양 결정 등 현실적인 문제에 대한 구체적 지침이 제공된다. 특히 돌보는 사람 자신의 건강과 지지 체계의 중요성이 강조된다.

마지막 부분에서는 말기 단계와 임종 문제를 다룬다. 시설 입소, 윤리적 선택, 이별의 감정 등이 복합적으로 나타난다. 이 책은 명확한 결론보다는 “끝까지 함께 간다”는 지속적 사랑의 태도로 마무리된다.

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2. 평론 (Critical Review)

English Review

Jordan’s work stands out for its authenticity and balance between emotional depth and practical guidance. Unlike purely medical texts, it situates LBD within the lived experience of caregiving, revealing the psychological and relational dimensions often overlooked.

One of the book’s strengths is its refusal to idealize caregiving. Jordan presents caregiving as labor—physical, emotional, and cognitive. This realism makes the book especially valuable for new caregivers who may otherwise hold unrealistic expectations.

However, the narrative is also shaped by the author’s specific context: her husband’s medical background and her access to resources. This raises questions about how representative the experience is for caregivers with fewer supports or less medical literacy.

Another strength is the concept of “endurance.” Rather than framing caregiving as heroic sacrifice or tragic burden, Jordan portrays it as sustained commitment. This aligns with contemporary discussions in caregiving ethics that emphasize relational responsibility over individual heroism.

Yet the book could be critiqued for its limited engagement with systemic issues. While it acknowledges healthcare challenges, it does not deeply analyze structural problems such as funding inequities, institutional care limitations, or policy frameworks.

Overall, <Going the Distance> is both a guide and a testimony. It is less about “solving” LBD and more about learning how to live within its constraints.

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한글 평론

이 책의 가장 큰 장점은 ‘진짜 경험’이라는 점이다. 단순한 의학서가 아니라 돌봄의 실제 삶을 보여주며, 특히 감정적·관계적 차원을 깊이 있게 드러낸다.

무엇보다 돌봄을 미화하지 않는 태도가 중요하다. 저자는 돌봄을 사랑의 표현이면서 동시에 노동으로 본다. 이는 현실을 정확히 보여주며, 처음 돌봄을 시작하는 사람에게 매우 중요한 통찰을 제공한다.

다만 이 경험이 어느 정도는 ‘특권적 조건’ 위에 있다는 점도 고려해야 한다. 남편이 의사였고, 의료 정보 접근성이 높았다는 점은 일반적인 사례와 차이가 있을 수 있다.

또 하나의 중요한 개념은 ‘지속성(endurance)’이다. 저자는 돌봄을 영웅적 희생이나 비극으로만 보지 않고, 관계를 끝까지 유지하는 과정으로 이해한다. 이는 현대 돌봄 윤리의 중요한 관점과 맞닿아 있다.

반면 구조적 문제에 대한 분석은 상대적으로 약하다. 의료 시스템의 문제를 언급하지만, 정책이나 제도 수준에서 깊이 있게 다루지는 않는다.

결론적으로 이 책은 해결책을 제시하기보다, “어떻게 함께 견디며 살아갈 것인가”를 묻는 책이다. 그리고 그 질문 자체가 이 책의 가장 중요한 가치이다.

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3. 한 줄 핵심 정리

<이 책은 루이소체 치매를 ‘이겨야 할 대상’이 아니라 ‘끝까지 함께 걸어야 할 여정’으로 바라보게 만든다.>

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Betsy Jordan

4.25
8 ratings0 reviews
Lewy Body Dementia took my beloved husband Pete on March 4, 2015. Upon his diagnosis, I became Pete’s caregiver, and together we made the last months of his life a journey of love. LBD is a progressive neuro-degenerative disease and the challenges are many, but our love was strong – and it was the love that made all the difference.

Additionally, I had the many lessons of long distance swimming to buoy me through this journey. In ocean swimming you face choppy waves, relentless swells, and uncomfortably cold water. These were the physical challenges I faced as a swimmer – and also the perfect metaphors for the challenges of caregiving.

In the end, this is both a love story dedicated to my husband Pete, and a love letter to my fellow caregivers. I hope that this book gives you some solace and insight through your own missions of love.




86 pages, Kindle Edition

Published May 29, 2016

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About the Author

Betsy Jordan lives with her dog Bella in a 100-year-old house in Coronado, CA.

With degrees from Wellesley (B.A. Art History), Harvard (M.A. Art History), and University of California, San Diego (Ph.D. English Literature), she was a full-time Humanities professor at UCSD for 15 years.




Betsy Jordan is a record-breaking, award-winning, master-level swimmer, and she exemplifies the values of Masters Swimming: fairness, fun, and fellowship. In her 40+ years of masters swimming competition, Betsy has set over 40 world records and many national and local records, including All-Star and All-American awards. In 2005 she was inducted into the International Masters Swimming Hall of Fame. You will still find Betsy at the morning swim workouts at UCSD and at the La Jolla Cove on many Saturday mornings.




Pete and Betsy have eleven grandchildren, all of them athletically inclined, some following Betsy into masters swimming competitions. And just so you know, Betsy met Pete at the swimming pool, and one of their favorite swims was when they swam the Maui Channel (10 miles) together in 2004.




Betsy is also the author of Dante and Me: A Journey




Product details

Publisher ‏ : ‎ GeniusWork Publishing

Publication date ‏ : ‎ April 21, 2016

Language ‏ : ‎ English

Print length ‏ : ‎ 146 pages

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Betsy Jordan


Betsy Jordan lives with her dog Bella in a 100-year-old house in Coronado, CA.

With degrees from Wellesley (B.A. Art History), Harvard (M.A. Art History), and University of California, San Diego (Ph.D. English Literature), she was a full-time Humanities professor at UCSD for 15 years.

Betsy Jordan is a record-breaking, award-winning, master-level swimmer, and she exemplifies the values of Masters Swimming: fairness, fun, and fellowship. In her 40+ years of masters swimming competition, Betsy has set over 40 world records and many national and local records, including All-Star and All-American awards. In 2005 she was inducted into the International Masters Swimming Hall of Fame. You will still find Betsy at the morning swim workouts at UCSD and at the La Jolla Cove on many Saturday mornings.

Pete and Betsy have eleven grandchildren, all of them athletically inclined, some following Betsy into masters swimming competitions. And just so you know, Betsy met Pete at the swimming pool, and one of their favorite swims was when they swam the Maui Channel (10 miles) together in 2004.

For more information about Betsy and Going the Distance, visit www.goingthedistance-betsyjordan.com

Read less about this author

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From the United States




Sandy Strawbridge

5.0 out of 5 stars Thank you Betsy

Reviewed in the United States on July 4, 2020

Format: KindleVerified Purchase

My husband has recently been diagnosed with Lewy Body. I found the information in this book very encouraging and supportive. It backs up my instinct that we can get through this with the love we have for each other. We were married in our teens and our love for each other has grown over the 54 years together. We have had good times and hard times but our love has never failed. We are facing this new situation with love and laughter. We are at the beginning of the journey but I know we will take it together to the end. We have strong family support and love to shore us up when we falter. My wonderful husband worries about me but I reassure him that our children are always there for both of us and will take care of both of us. This book is very honest but also very encouraging. It helps me to know how to support my darling husband as well as to be prepared for what is to come. I now feel that I have some tools to work through this time with both appreciation for our love and sadness as I deal with the symptoms of this disease that is slowly affects the man I love with my whole being.

Thank you Betsy for your honesty and sharing about the love that saw you both through this.

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L. Roest

5.0 out of 5 stars Sometimes books like these are hard to read

Reviewed in the United States on March 6, 2018

Format: PaperbackVerified Purchase

Sometimes books like these are hard to read. Learning my dad had Lewy Body Dementia was something hard for me to take. Once I was over the shock I wanted to know more but at a steady pace. I didn't want to overwhelm myself. This book is a great read. There is not a perfect fit for every one with this disease. It is nice to share stories and have an understanding of what can happen.

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Shea Shea

4.0 out of 5 stars Great input

Reviewed in the United States on March 21, 2017

Format: PaperbackVerified Purchase

We are not alone!!

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Roxy Fairdeal

3.0 out of 5 stars There are better books out there on the subject.

Reviewed in the United States on February 8, 2018

Format: PaperbackVerified Purchase

As someone living through this scenario, it seemed to me that Betsy's husband wasn't all that far along in the disease before she gave up and transferred him to the care of others. She talks about how guilty she felt about doing this, and I can well understand that. A far better book is "A Caregiver's Guide to Lewy Body Dementia."

One person found this helpful

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Lisa

5.0 out of 5 stars Excellent. Thank you Ms

Reviewed in the United States on June 25, 2016

Format: PaperbackVerified Purchase

Excellent. Thank you Ms.Jordan for your unvarnished yet tender and loving "guide" --- This is a heartbreaking and devastaing disease.

Your voice is important and ever helpful to those struggling with lbd and their loved ones. Important reading for all -- touched by all dementia and especially Lewy Body. What strenghth and devotion!

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John Sagewood

5.0 out of 5 stars ... for those who devote themselves to caring for a loved one with a chronic medical condition

Reviewed in the United States on July 5, 2016

Format: PaperbackVerified Purchase

So much more than an uplifting guide for those who devote themselves to caring for a loved one with a chronic medical condition. This is a book about love and life itself. You will be humbled and inspired by this beautiful journey.

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PB

5.0 out of 5 stars I am thrilled that she shared her story and feel that everyone who is facing the reality of losing a loved one to dementia will

Reviewed in the United States on June 30, 2016

Format: PaperbackVerified Purchase

Betsy's insight into how she remained such a loving caregiver was inspiring. I am thrilled that she shared her story and feel that everyone who is facing the reality of losing a loved one to dementia will benefit from reading her words.

One person found this helpful

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Mary M.

5.0 out of 5 stars Hit home with me

Reviewed in the United States on December 30, 2017

Format: KindleVerified Purchase

I am a caregiver, also with love. We have 38 years together. I’m also a facilitator for a LBD caregiver support group. My goal is also to keep him home as long as possible. One thing I have learned is that not all couples share the amount of love that I have for my husband and the author has for hers. But when I find like minded lovers, I will encourage the read!

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YiaYia

2.0 out of 5 stars Donate the price to LBDA.org instead

Reviewed in the United States on September 1, 2018

Format: PaperbackVerified Purchase

Although no doubt cathartic for the author to have written, this is too much a very quick read, and too much one wealthy, sadly almost smug wife's personal memorial to her husband with LBD to be more widely helpful.

The only memorable, generally helpful takeaway is that having another fatal diagnosis intervene before the worst of LBD'S dreadful, final steps to death's door can be a blessing.

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Buyer

5.0 out of 5 stars The reader can feel the author's love in each and every page

Reviewed in the United States on June 30, 2016

Format: PaperbackVerified Purchase

The reader can feel the author's love in each and every page. This book would be helpful for any caregiver for any kind of dementia. Highest recommendation. Fully 5 stars!!!

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San Diego

5.0 out of 5 stars Wonderful book!

Reviewed in the United States on June 25, 2016

Format: PaperbackVerified Purchase

Wonderful book for people dealing with any type of dementia. Caregivers need to read about the care and compassion that Betsy displayed throughout this process.

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5.0 out of 5 stars So much love and caring for Pete by Betsy

Reviewed in the United States on June 29, 2016

Format: PaperbackVerified Purchase

Fabulous read. So much love and caring for Pete by Betsy. Also. Great reference for those caring for a Lewy patient .

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nmscott

5.0 out of 5 stars Survival through loss

Reviewed in the United States on June 17, 2016

Format: PaperbackVerified Purchase

A very touching love story, and one of great courage as well. A book to share with many others.

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Joan E Lafuze

5.0 out of 5 stars A must read for care providers

Reviewed in the United States on June 17, 2016

Format: PaperbackVerified Purchase

As a caregiver for a loved one myself, I found this book inspiring and helpful!

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Amazon Customer

5.0 out of 5 stars Five Stars

Reviewed in the United States on April 19, 2018

Format: PaperbackVerified Purchase

Good book about a hard to understand disease.

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Julie reilly

5.0 out of 5 stars Slot of info

Reviewed in the United States on June 6, 2019

Format: PaperbackVerified Purchase

Learned alot

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Barbara S. JOrdan

5.0 out of 5 stars Five Stars

Reviewed in the United States on July 20, 2016

Format: PaperbackVerified Purchase

Great book!

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Amazon Customer

5.0 out of 5 stars A must read book for everyone with a family....

Reviewed in the United States on May 20, 2016

Format: Paperback

This book is a must read for anyone with a family member with any kind of dementia. Millions of people will find themselves in the position of a caregiver in their lives, and having some insight on dementia and what a caregiver is all about is an invaluable asset. GOING THE DISTANCE is also a love story between Betsy and Pete and shows the real 'distance' a loved one has to travel to help out a family member.

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TH

5.0 out of 5 stars Five Stars

Reviewed in the United States on July 17, 2017

Format: Kindle

Wonderful and informative. Part love story, part helpful guide. Thanks so much for this thoughtful book!

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Amazon Customer

5.0 out of 5 stars A love story that is brave

Reviewed in the United States on May 17, 2016

Format: Paperback

A love story that is brave, courageous and inspiring. Betsy uses the analogy of their love for long distance swimming with her and her husbands shared journey through LBD. I will recommend this book to all caregivers who are struggling with dementia.

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