Still Phyllis: A Caregiver's Memoir of Dementia and Creutzfeldt-Jakob Disease

by Donald Friedman

Overview

Phyllis was a vital, single woman, a photographer and writer, who was enjoying life in the city when she was suddenly stricken by Creutzfeldt-Jakob Disease (CJD), a disease rarer than a lightning strike that spreads, incredibly, via a non-living molecule called a prion. Terrified to realize she couldn't perform her duties at work, Phyllis very soon couldn't even find her way to her desk or to her apartment from the corner store. Informed of his sister's diagnosis with this dementing and always fatal illness, her estranged brother, her only living relative, brought her home (against the advice of her doctors) to care for her with his wife.

The profoundly affecting memoir illuminates how closeness can deepen when words are lost—an inspiring truth to anyone with a friend or family member with dementia.

Product Details

ISBN-13:	9781476694344
Publisher:	McFarland & Company, Inc., Publishers
Publication date:	06/19/2024
Pages:	205
Sales rank:	119,394
Product dimensions:	6.00(w) x 9.00(h) x 0.42(d)
Age Range:	18 Years

About the Author

Donald Friedman is the author of several novels, The Writer’s Brush: Paintings, Drawings, and Sculpture by Writers, and a regular contributor to Interfaces, a French/English scholarly journal devoted to the relationship between text and image. His blogs, essays, short stories, on-camera interviews with famous writer-artists and art gallery can be found at DonaldFriedman.com. He divides his time between Rhinebeck, New York, and Sarasota, Florida.

Table of Contents

Table of Contents

Acknowledgments
Preface
 1. Dancing in the Street
 2. The Breakdown
 3. The Psychiatric Referral
 4. CJD
 5. I Bring Her Home
 6. The Diagnosis
 7. Cleaning Her Apartment
 8. August 20, 1998: Back in the Neighborhood
 9. Cannibals and Contagion, Love and Support
10. Compassion Manifest
11. Be Frightened
12. A Surprising Joke
13. The Days Were Lovely
14. Canyon Ranch and a Phyllis Vision
15. Crying Because I Needed To
16. Conversation with Phyllis
17. The Witches Gather
18. Taking Notes and Learning Nothing
19. How Long Do We Give Them?
20. 24/7 with Phyllis
21. Going to Florida
22. Visitors
23. Guilt Again
24. Phyllis Excursions
25. Indulgences
26. Christmas Day
27. New Year’s Celebrations
28. Montego Bay, January 1999
29. Eating Newspaper and Peeing on the Bathtub
30. “We’ll have to find out”
31. “It’s been so long”
32. Carolyn Taking Over
33. Snow
34. Brazil
35. “I’ve had it”
36. Back from the Dead
37. Phyllis’s Birthday
38. Paralysis Overcome; Getting Philosophical
39. Two Days in Roseville, California
40. July 4th Fireworks
41. Heart Strong, Lungs Clear
42. The End
43. Writing the Eulogy
Index

Editorial Reviews

06/24/2024

Incisive, moving, and stripped of sentimentality, Still Phyllis finds Friedman (author of The Hand Before the Eye) facing, some two decades after the fact, a period of pain, loss, and surprising connection: the 18 months between his sister’s diagnosis, at the start of her fifties, with Creutzfeldt-Jakob Disease, an incurable and fatal condition that, as he puts it, “had been turning Phyllis’s brain into Swiss cheese.” In scrupulous prose, Friedman relives the shock of seeing his younger sister “trapped inside her deteriorating mind, conscious of each successive loss—of language, memory, executive function.” This was a one-in-a-million diagnosis, and the neurologist brusquely announced to Friedman that there’s no known palliative treatments and little hope of Phyllis lasting a year. “Your sister needs to go to a nursing facility. She cannot be cared for by you.”

But, for Friedman, family is family, and Still Phyllis finds him drawing from long-forgotten diaries as he both recounts and interrogates his choice to take Phyllis into his New Jersey home, a decision he made without consulting his wife. He writes with crisp precision of the practicalities of caring for Phyllis despite the medical system’s zeal to convince us “to exile our debilitated parents or suddenly useless spouses to institutional caretaking.” Scenes of brother and sister still managing to understand each other despite the fraying of Phyllis’s capacity for language have rich power. These edge between the touchingly playful—Upper West Sider Phyllis offers tart assessments of authors reading at the 92nd Street Y—and the profound, as in the inclusion of a handwritten note from Phyllis (“Don, I lov yu. your deep & wondreerful &so &deep”).

Friedman notes that her words still “communicated well the truths about dying—about its terrors and confusions” more powerfully than the “saccharine and, finally, empty nuggets” he’s read in the likes of Tuesdays with Morrie. That commitment to rigorous thinking and writing about life as it’s actually lived powers this first-rate memoir, an act of memory, empathy, and love.

Takeaway: Finely wrought, deeply human memoir of a sister’s neurodegenerative disorder.

Comparable Titles: Elizabeth Hay’s All Things Consoled, Philip Roth’s Patrimony.

Production grades Cover: A- Design and typography: A Illustrations: N/A Editing: A Marketing copy: A

BookLife Reviews

Incisive, moving, and stripped of sentimentality...scrupulous prose... Scenes of brother and sister still managing to understand each other despite the fraying of Phyllis’s capacity for language have rich power... That commitment to rigorous thinking and writing about life as it’s actually lived powers this first-rate memoir, an act of memory, empathy, and love. ... Finely wrought, deeply human memoir of a sister’s neurodegenerative disorder.”—Book Life

From the Publisher