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

  • Formatas: 205 pages
  • Išleidimo metai: 04-Jun-2024
  • Leidėjas: McFarland & Co Inc
  • Kalba: eng
  • ISBN-13: 9781476651996
  • Formatas: 205 pages
  • Išleidimo metai: 04-Jun-2024
  • Leidėjas: McFarland & Co Inc
  • Kalba: eng
  • ISBN-13: 9781476651996

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"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. Apprised 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 as words are lost-an inspiring truth to anyone with a friend or family member with dementia."-Provided by publisher"--

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.

Recenzijos

Donald Friedman brings his considerable literary gift to this memoir of despair, and with that gift fills the pages with the flickering light of the spirit. Seeing through his dying sisters eyes he discovers levels of perception unknown to him before. He helps his sister navigate a horrible hall of broken mirrorsbrain diseaseand in doing so he discovers a hidden lovewhich is usually the deepest love because we never suspect its there.William Kotzwinkle author of ET the Extraterrestrial and Felonious Monk Donald Friedman's Still Phyllis is a masterfully told memoir about the imperfect love of siblings and the meaning that can be found in facing terminal illness and death. It's full of deep thinking about CJD and the ravages of dementia, brilliant descriptions, and a rare gratitude for second chances. The final chapters will leave you in a puddle.Benjamin Anastas, author of Too Good To Be True Donald Friedmans memoir of caretaking his sister through her dementia, shows us that, while personhood may be diminished by illness, the soul of the sufferer remains and is there to connect with. He is eloquent about the guilt, confusion, and stresses caregiving exacts, and the struggle to maintain belief in a caring, just God. For those, like Friedman, who search for consolation outside religion, in philosophy, science, literatureall touched on herecomes the ultimate, welcome discovery that Gods presence is to be found in the world, that it could be seen, in the friends who did show, in the strangers who, unasked, stepped forward with kindnesses, large and small. Friedmans book will provide comfort and support for the manyreligious, or notdealing with the dementia of a friend or loved one.Rabbi Zoe B. Zak, Rabbi of Temple Israel of Catskill, co-author of The Cook and the Rabbi After years of estrangement, Donald Friedman brought his sister Phyllis into his home to die. During the next sixteen months, as Phyllis deteriorated from a rare brain disease, her brother and his wife did their best to make every day count. Still Phyllis is a powerful, beautifully told, heart-wrenching story that demands all of us to consider the complex, unbreakable bonds of family and to marvel at the redemptive magic of love.Peter Golden, author of Nothing Is Forgotten If love is all there is, this beautiful memoir of a brothers love for his sister as she dies from an extremely rare, cruelly disintegrating illness under his watch and care is both moving and inspiring. He tenderly tries to understand what her incoherent speech is saying, he does all in his power to make sure her life in this aggressively diminishing illness has many moments of joy. He is her north star as she wordlessly starts to leave her body and mind. Perhaps the most tender is when they drive silently together, her looking out the window, only able to say, Its so beautiful. This is a book of the tremendous dignity in our responsibility one to the other and the tremendous poetry in leaving no one behind.Gay Walley, author of The Waw and the Venus As She Ages collection. Still Phyllis is an honest portrayal of what a family experiences in caring for a loved one with CJD or other neurodegenerative illness. It balances the heartbreaking and grinding reality of caring for a person while the disease rapidly steals everything from them, with the beautiful moments when we are able to help give them their best day, when we can help them feel like themselves by surrounding them with the people, places, foods, and experiences that they have loved so well.Debbie Yobs, president/executive director, CJD Foundation Donald Friedman's narrative about his sisters final months of fighting a rare degenerative brain disorder, is an inspiring example of how to care for a loved one in cognitive decline with respect and sensitivityhonoring their freedom, dignity and sense of self.Carrie Seidman, Sarasota Herald-Tribune opinion columnist and founder of the FACEing Mental Illness project and podcast

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 Years Celebrations

28.Montego Bay, January 1999

29.Eating Newspaper and Peeing on the Bathtub

30.Well have to find out

31.Its been so long

32.Carolyn Taking Over

33.Snow

34.Brazil

35.Ive had it

36.Back from the Dead

37.Phylliss 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
Donald Friedman is the author of several novels, The Writers 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.