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
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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
