Lewy Body Dialogue

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