Lewy Body Dialogue (eBook)

Pat and Ron Potter-Efron had been married for 53 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. Pat does not always agree with Ron's observations, of course. The perspective 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.

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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 ----- IntroductionCh.1. Hallucinations from Outside and InsideCh.2. Am I a Helicopter Husband?Ch.3: NoiseCh.4. Good DaysCh.5. The Need for SupportCh.6. Some Days You Just Want to CryCh.7. Who Should I Tell that I've Got Lewy Body? Acceptance, Embarrassment, Shame and TrustCh.8. "e;Showtime"e;Ch.9. Questions for the New Year: 2019 and then 2020Ch.10. Physical Intimacy: Hugs and MoreCh.11. What Comes Next? The Lewy Body Sequencing ProblemCh.12. We are Still a TeamCh.13. MortalityCh.14. Waking Dreams, RBD, and Sleep DeprivationCh.15. Slightly Unusual Behaviors (SUBs)Ch.16. Depression and Lewy Body DisorderCh.17. Not Driving - A Blow to Pat's Spirit Ch.18. I'm Scared to Travel Away from PatCh.19. Acceptance: Yes; Passivity: NoCh.20. Sudden Mood ChangesCh.21. Adding Structure to Combat Lack of Initiative and ApathyCh.22. If You Don't Laugh, You'll CryCh.23. InsecurityCh.24. "e;Keep on Trucking"e; but "e;I Won't Regret a Thing."e;Ch.25. Caregiver MeltdownCh.26. Porch Bird Watching on the First Beautiful Spring Day of the YearCh.27. Blackcap Pie, Memory Loss and ConfusionCh.28. Yes! Pat's Test Scores Have ImprovedCh.29. We are "e;Care Partners"e;Ch.30. Some Mornings are Full of PeopleCh.31. "e;I Know you are my Husband because You are Wearing the Same Shirt"e; 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 GroupCh.35. Taking a Chance with a Combined Birthday CelebrationCh.36. After a Crisis is Over Ch.37. Pat Realizes She's been HallucinatingCh.38. From Good to Bad in an Instant: Evidence of FluctuationCh.39. "e;I Wasn't Talking in My Sleep. I was Talking in Your Sleep"e; Ch.40. Pat Joins a Memory ChoirCh.41. Ron Makes a Serious Mistake - Then So does PatCh.42. What was Supposed to Bring Pride Brings Shame InsteadCh.43. "e;The Apocalypse Appeared to have Arrived and Yet it was Not Apocalyptic"e;Ch.44. Pat Asks Ron How He has been Affected by Her Lewy BodyCh.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 UnpredictableCh.48 Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on ThursdayCh.49 Two RonsCh.50 Pat's Sense of Time is OffCh. 51 Our Children Want us to Move to the CityCh. 52 Our Two Truths Are Like Oil and Water