Lewy Body Dialogue: A Couple's Conversations as they Encounter Lewy Body Dementia

By Patricia Potter-Efron and Ronald Potter-Efron

Pat and Ron Potter-Efron had been married for 54 years when Pat received the diagnosis of Lewy Body Dementia in 2018. Both were recently retired mental health counselors who had been co-owners of a private clinic in Eau Claire, WI. They were also co-authors of several popular books, including the best sellers Letting Go of Shame and Letting Go of Anger. They soon began facing the reality of how Lewy Body Dementia was affecting their lives. Most importantly, they searched for a way to continue to contribute meaningfully to society while living as complete and satisfying lives as possible. That is when they decided to write a journal of their experiences, but a journal different than any they had encountered as they reviewed the Lewy Body literature. Pat and Ron began to write a series of conversations. Ron would initiate a relevant topic (hallucinations; teamwork; mortality, etc.) and then Pat would add her comments. Fortunately, Pat has retained her ability to clearly describe her thoughts and feelings even as some of her abilities have diminished. Pat does not always agree with Ron's observations, of course. The perspectives of care receiver inevitably differ from those of care giver.
When other couples in the Lewy Body dementia community discovered Ron and Pat's work they were eager to see it. The result was the creation of a website/blog named Lewy Body Dialogue. This book represents a compilation of the first fifty-six chapters of their journal, written over a two year period. It is the creation of a true care partnership.
CONTENTS
___ Preface
----- Introduction
Ch.1. Hallucinations from Outside and Inside
Ch.2. Am I a Helicopter Husband?
Ch.3: Noise
Ch.4. Good Days
Ch.5. The Need for Support

Ch.6. Some Days You Just Want to Cry
Ch.7. Who Should I Tell that I've Got Lewy Body? Acceptance, Embarrassment, Shame and Trust
Ch.8. "Showtime"
Ch.9. Questions for the New Year: 2019 and then 2020
Ch.10. Physical Intimacy: Hugs and More

Ch.11. What Comes Next? The Lewy Body Sequencing Problem
Ch.12. We are Still a Team
Ch.13. Mortality
Ch.14. Waking Dreams, RBD, and Sleep Deprivation
Ch.15. Slightly Unusual Behaviors (SUBs)

Ch.16. Depression and Lewy Body Disorder
Ch.17. Not Driving – A Blow to Pat's Spirit
Ch.18. I'm Scared to Travel Away from Pat
Ch.19. Acceptance: Yes; Passivity: No
Ch.20. Sudden Mood Changes

Ch.21. Adding Structure to Combat Lack of Initiative and Apathy
Ch.22. If You Don't Laugh, You'll Cry
Ch.23. Insecurity
Ch.24. "Keep on Trucking" but "I Won't Regret a Thing."
Ch.25. Caregiver Meltdown

Ch.26. Porch Bird Watching on the First Beautiful Spring Day of the Year
Ch.27. Blackcap Pie, Memory Loss and Confusion
Ch.28. Yes! Pat's Test Scores Have Improved
Ch.29. We are "Care Partners"
Ch.30. Some Mornings are Full of People

Ch.31. "I Know you are my Husband because You are Wearing the Same Shirt"
Ch.32. Today's Surprise: Ron Gets a Heart Stent
Ch.33. Pat Tells Our Book Club Members She Has Lewy Body
Ch.34. Trying Out a New Group
Ch.35. Taking a Chance with a Combined Birthday Celebration

Ch.36. After a Crisis is Over
Ch.37. Pat Realizes She's been Hallucinating
Ch.38. From Good to Bad in an Instant: Evidence of Fluctuation
Ch.39. "I Wasn't Talking in My Sleep. I was Talking in Your Sleep"
Ch.40. Pat Joins a Memory Choir

Ch.41. Ron Makes a Serious Mistake – Then So does Pat
Ch.42. What was Supposed to Bring Pride Brings Shame Instead
Ch.43. "The Apocalypse Appeared to have Arrived and Yet it was Not Apocalyptic"
Ch.44. Pat Asks Ron How He has been Affected by Her Lewy Body
Ch.45. What Ron Doesn't Understand About Me

Ch.46. Who Would Take Care of Pat If I Couldn't?
Ch.47. Mornings Can be Unpredictable
Ch.48 Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on Thursday
Ch.49 Two Rons
Ch.50 Pat's Sense of Time is Off

Ch. 51 Our Children Want us to Move to the City
Ch. 52 Our Two Truths Are Like Oil and Water

• Language: English
• Publisher: BookBaby
• Release date: Sep 1, 2020
• ISBN: 9781098309527

Book preview

Patricia and Ronald Potter-Efron

Eleva, WI 54738

[e-mail]

copyright ©2020 Patricia Potter-Efron

Print ISBN: 978-1-09830-951-0

eBook ISBN: 978-1-09830-952-7

Dedication

We dedicate this book to Paula and Erik Biever, whose immense experience with and knowledge about Lewy Body dementia has greatly eased our path on this challenging journey.

Alphabetical Index

Acceptance: Yes; Passivity: No Ch.19

Adding Structure to Combat Lack of Initiative and Apathy Ch.21

After a Crisis is Over Ch.36

Am I a Helicopter Husband? Ch.2

Blackcap Pie, Memory Loss, and Confusion Ch. 27

Caregiver Meltdown Ch.25

Depression and Lewy Body Disorder Ch.16

Ending on a Positive Note Ch.56

From Good to Bad in an Instant: Evidence of Fluctuation Ch.38

Good Days Ch.4

Hallucinations from Outside and Inside Ch. 1

I Know You are my Husband because You are Wearing the Same Shirt. Ch.31

I wasn’t Talking in My Sleep. I Was Talking in Your Sleep. Ch.39

I’m Scared to Travel Away from Pat Ch.18

If You Don’t Laugh, You’ll Cry Ch. 22

Insecurity Ch. 23

Keep On Trucking but I Won’t Regret a Thing. Ch.24

Lewy Body Affects Pat’s sense of Time. Ch.50

Many Small Frustrations Ch.55

Mornings Can be Unpredictable Ch.47

Mortality Ch.13

Noise Ch.3

Not driving – A Blow to Pat’s Spirit Ch.17

Our Children Want us to Move to the City. Ch.51

Our Two Truths are Like Oil and Water Ch.52

Pat Asks Ron How He has been Affected by Her Lewy Body Ch.44

Pat Joins a Memory choir and Then So Does Ron Ch.40

Pat Realizes She’s been Hallucinating Ch.37

Pat Tells our Book Club Members She has Lewy Body Ch.33

Physical intimacy: Hugs and More Ch.10

Porch Bird Watching on the First Beautiful Day of the Year Ch.26

Questions for the New Year: 2019 and then 2020 Ch.9

Ron joins the Stand in the Light Memory Choir Ch.54

Ron Makes a Serious Mistake – Then So Does Pat Ch.41

Showtime. Ch.8

Slightly Unusual Behaviors (SUBs) Ch.15

Slow Motion Panic Attack Ch.53

Some Days You Just Want to Cry Ch.6

Some Mornings are Full of People Ch.30

Sudden Mood Changes Ch.20

Taking a Chance with a Combined Birthday Celebration Ch.35

The Apocalypse Arrived and Yet It Was Not Apocalyptic. Ch.43

The Need for Support Ch.5

Today’s Surprise: Ron Gets a Heart Stent Ch.32

Trying Out a New Group Ch.34

Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on Thursday Ch.48

Two Rons Ch.49

Waking Dreams, RBD, and Sleep Deprivation Ch.14

We are Care Partners. Ch.29

We are Still a Team Ch.12

What Comes Next? The Lewy Body Sequencing Problem Ch.11

What Ron Doesn’t Understand about Me Ch.45

What was Supposed to Bring Pride Brings Shame Instead Ch.42

Who should I Tell I have Lewy Body? Acceptance, Embarrassment, Shame and Trust Ch.7

Who Would Take Care of Pat If I Couldn’t? Ch.46

Yes! Pat’s Test Scores have Improved Ch.28

Contents

Preface 

Introduction – October 2018.

Ch. 1: Hallucinations from Outside and Inside.

Ch. 2: Am I a Helicopter Husband?

Ch. 3: Noise.

Ch. 4: Good Days.

Ch. 5: The Need for Support.

Ch. 6: Some Days You Just Want to Cry.

Ch. 7: Who Should I Tell that I’ve Got Lewy Body?

Acceptance, Embarrassment, Shame and Trust.

Ch. 8: Showtime.

Ch. 9: Questions for the New Year: 2019 and then 2020

Ch. 10: Physical Intimacy: Hugs and More.

Ch. 11: What Comes Next? The Lewy Body

Sequencing Problem.

Ch. 12: We Are Still a Team.

Ch. 13: Mortality.

Ch. 14: Waking Dreams, RBD, and Sleep Deprivation.

Ch. 15: Slightly Unusual Behaviors (SUBs).

Ch. 16: Depression and Lewy Body.

Ch. 17: Not Driving – A Blow to Pat’s Sense of Self.

Ch. 18: I’m Scared to Travel Away from Pat.

Ch. 19: Acceptance: Yes; Passivity: No

Ch. 20: Sudden Mood Changes.

Ch. 21: Adding Structure Challenges Lack of Initiative

Caused by Lewy Body.

Ch. 22: If You Don’t Laugh, You’ll Cry.

Ch. 23: Insecurity.

Ch. 24: Keep on Trucking but I Won’t Regret a Thing

Ch. 25: Caregiver Meltdown.

Ch. 26: Porch Bird Watching on the First Beautiful

Spring Day of the Year.

Ch. 27: Blackcap Pie, Memory Loss and Confusion.

Ch. 28: Yes! Pat’s Test Scores Have Improved.

Ch. 29: We are Care Partners.

Ch. 30: Some Mornings are Full of People.

Ch. 31: "I Know You are my Husband because

You are Wearing the Same Shirt."

Ch. 32: Today’s Surprise: Ron gets a Heart Stent.

Ch. 33: Pat Tells Our Book Club Members She Has Lewy Body.

Ch. 34: Trying Out a New Group.

Ch. 35: Taking a Chance with a Combined

Birthday Celebration.

Ch. 36: After a Crisis is Over.

Ch. 37: Pat Realizes She’s been Hallucinating.

Ch. 38: From Good to Bad in an Instant: Fluctuation in Action.

Ch. 39: "I Wasn’t Talking in My Sleep.

I was Talking in Your Sleep."

Ch. 40: Pat Joins a Memory Choir.

Ch. 41: Ron Makes a Serious Mistake – Then So does Pat.

Ch. 42:. What was Supposed to Bring Pride

Brings Shame Instead.

Ch. 43: "The Apocalypse Arrived and Yet it was

Not Apocalyptic."

Ch. 44: Pat Asks Ron How He has been

Affected by Her Lewy Body.

Ch. 45: What Ron Doesn’t Understand About Me.

Ch. 46: Who Would Take Care of Pat If I Couldn’t?

Ch. 47: Mornings Can be Unpredictable.

Ch. 48: Two Exhausting Days: Pat Faints on

Wednesday but Sings in a Concert on Thursday.

Ch. 49: Two Rons

Ch. 50: Lewy Body Affects Pat’s Sense of Time

Ch. 51: Our Children Want Us to Move to the City

Ch. 52: Our Two Truths Are Like Oil and Water

Ch. 53: Slow Motion Panic Attack

Ch. 54: Ron Joins the Stand in the Light Memory Choir

Ch. 55: Many Small Frustrations

Ch. 56: Ending on a Positive Note.

Preface 

Ron Potter-Efron contacted the Lewy Body Dementia Association in June of 2018 asking if there were any support groups for persons with Lewy Body Dementia (LBD). He was in a group for caregivers, but his wife Pat, who had been diagnosed with LBD in 2018, was interested in attending a group that included people with the disease. His email was forwarded to me. I am a Lewy Buddy volunteer, responding to phone calls and email inquiries from people asking for support and information. I emailed Ron and told him that although there were no such groups in Wisconsin where he and Pat lived, I had started a group in Minnesota where both the person with LBD and a caregiver, friend, spouse or partner were welcome to attend. I was also a facilitator for a group of LBD caregivers, but I had seen a growing need for a group that included people who had LBD. In 2017 I was able to get the group going and it was attracting a good group of people. Pat and Ron attended their first meeting in July 2018, traveling for several hours and staying overnight in order to attend the group meeting the next morning. They have been regular attendees ever since.

The focus of the group is on the person with the disease, providing an environment where they can support one another and share experiences that are unique to LBD. The main intent of the group is to reduce the isolation that people living with the disease would often feel, making it possible for them to help one another through the challenges and issues. When the group first started, I had planned to have caregivers and persons with LBD meet separately, at least for part of the meeting. The first few meetings only had one or two couples attending so that idea was left for when the group got larger. The dynamics of the group conversation continued as more people started coming to meetings and it became obvious that the group was working really well as a whole. The group evolved into becoming not just a patient support group but a team support group with couples, family members and friends learning from one another and interacting with each other. It became a group of care partners, where everyone’s viewpoint was carefully and nonjudgmentally listened to.

I see this group dynamic at work in the chapters of Lewy Body Dialogue. Pat and Ron do not always see eye to eye concerning Pat’s disease and her care. They are open about this and their ability to express their different perspectives helps others to recognize that there are two sides to the caregiving experience.

Being in a relationship that involves caregiving changes things. The roles and expectations that develop over many years become different, sometimes suddenly, and most of the time not willingly. Care partners must adjust and learn as needs evolve. Finding ways to be independent while acknowledging what limitations have to be accepted is a constantly moving target. It is even more of a challenge with Lewy Body Dementia. Fluctuations in physical ability, cognitive abilities and emotional personality make things easy one day but extremely difficult the next. How do you set boundaries or make plans when you don’t know what you’ll be capable of? How do you trust someone to help you pursue your own desires when it seems they are always afraid for you? What if you experience something that your partner just cannot understand? We talk about these things during our group meetings. Pat and Ron relate their personal examples in this book.

The Lewy Body Dialogue project was first mentioned during a group discussion about maintaining meaning and purpose when dealing with a disease that makes everything more difficult. People talked about being overwhelmed by the loss of their abilities and not wanting to do things that they can no longer do as well as they used to do. Caregivers talked about becoming exhausted by everyday tasks and the worry of being responsible for someone else’s well-being - of always being on-duty and not being able to enjoy life together the way they used to. And yet people were finding ways to have fun and talked about what activities brought them joy. There were a wide range of examples - from fishing to cookie baking. Many people drew upon what they liked to do in the past and made it work in the present. Some found that simple things like taking a walk or watching a musical or nature program worked well. One person with LBD was surprised when they discovered that although they couldn’t do the activity when it was presented to them, they could show someone else how to go about doing it, step by small step.

Pat and Ron talked about how writing, specifically writing to help others, was something they had done during their careers as counselors. This had been very important to them not only as individuals but as an activity that strengthened their relationship. They had co-authored several books, some of which are still widely used in their specialty fields of anger management and addiction. They discussed how they had revisited the idea of once again writing as a team and had come up with the idea of Lewy Body Dialogue as a new project that used their skills and enabled them to once again work together.