Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia

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A chronicle of the profound, life-changing, and laugh-out-loud funny moments in the journey of an Alzheimer's caregiver who learns that memory is overrated, familiarity breeds compassion, and flute playing is forever.

In this unsentimental memoir of watching her mother fade away, of dealing with her bills, her housework, her increasing demands and dementia, Whouley brings us right into the laugh-or-you'll-cry experiences of meeting the challenge of Alzheimer's.  As her ...

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Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia

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A chronicle of the profound, life-changing, and laugh-out-loud funny moments in the journey of an Alzheimer's caregiver who learns that memory is overrated, familiarity breeds compassion, and flute playing is forever.

In this unsentimental memoir of watching her mother fade away, of dealing with her bills, her housework, her increasing demands and dementia, Whouley brings us right into the laugh-or-you'll-cry experiences of meeting the challenge of Alzheimer's.  As her mother falls into forgetting, Kate remembers for her. In her mother, we meet a strong-minded, accidental feminist with a weakness for unreliable men. We meet a daughter who learned early to fend for herself.  We encounter their shared passions: books, words, and music. When the books are forgotten and the words begin to fade, it is the music that matters most to Kate's mother. Holding hands after a concert, a flute case slung over Kate's shoulder, and a shared joke between them, their relationship is healed—even in the face of a dreaded, and deadly, diagnosis. 

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Editorial Reviews

From the Publisher
“A lovely, honest account of her mother’s decline into Alzheimer’s disease.”—The Boston Globe

“In her often humorous and always compassionate memoir, Whouley hopes to transform how people relate to a loved one with Alzheimer's disease."—USA Today

“Whouley’s poignant, perceptive story of remembrance may not make the word 'Alzheimer’s' any easier to hear, but her book offers a perspective that may relieve, comfort and perhaps ease the minds of those who are facing some of the same dilemmas with elder family members – dilemmas about care, yes, but also about just how to take in the idea of communicating with someone who will likely not remember that communication scant moments later.”—The Barnstable Patriot

“Whouley gracefully keeps a balance between poignancy and humor. Her intelligent, sensitive voice is a treat…”—Shelf Awareness 

“Reading Kate Whouley’s memoir felt like sitting down with an old friend over coffee...As a reader, I felt privileged to be on the receiving end of such a confidence, which concerns the most important issues: family, mortality, our aloneness in the world, our connection in the face of it.  I read it in two sittings and turned the last page with regret.”—David Payne, author of Back to Wando Passo  
"An exceptional memoir that reminds us—often with surprising humor—of the richness of life in good times and bad."—David Dosa MD, author of Making Rounds With Oscar 
Remembering the Music, Forgetting the Words made me want to go hug my mother. It also made me want to go hug Kate Whouley for her generous, fearless and spot-on recounting of a mother-daughter relationship during its most tragic yet poignantly beautiful years.”—Suzanne Strempek Shea, author of Sundays in America               
“With books as her background and music as her guide, Kate Whouley helps her mother navigate the journey of Alzheimer’s. Recalling her mother’s impressive past, Whouley tries to reconcile her “new” mother with the old. Whouley’s straightforward, and at times, very funny take at her mother’s struggles and her own will strike home to many readers familiar with the caregiver role. Incorporating her life-long passion as a flutist, Whouley’s tone and reflection of music in every aspect of the journey fills the book with hope and, yes, joy.  I hope I would be as graceful and kind if I ever become my mother’s support system. Full of mother-daughter issues, identity, grief, loss, along with lots of love, and enduring friendships, Remembering The Music, Forgetting the Words is perfect fodder for reading groups!”—Barbara Drummond Mead, Editor of Reading Group Choices
Remembering the Music is a dance of a daughter’s spirit as she releases her mother (and the reader) to another realm.”—Joan Anderson, Author of A Year By The Sea     

“In Remembering the Music, Forgetting the Words, Kate Whouley explores the mysteries of the human heart with wisdom and wit, giving us a story rich with kindness and comfort.”Amanda Eyre Ward, author of Close Your Eyes


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Product Details

  • ISBN-13: 9780807003190
  • Publisher: Beacon
  • Publication date: 9/6/2011
  • Pages: 240
  • Product dimensions: 5.50 (w) x 8.40 (h) x 1.00 (d)

Meet the Author

KATE WHOULEY lives and writes on Cape Cod, where she also works as an independent consultant in the book industry. Her first book, Cottage for Sale, Must Be Moved, was a Book Sense Book-of-the-Year nominee in the nonfiction category. An avocational flutist and community musician, Whouley volunteers as a facilitator for the Cape and Islands Arts & Alzheimer’s initiative.

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Read an Excerpt

Chapter Nine  
So Sue Me  
“I’d like to sue my daughter,” my mother says to the attorney.  
“Is that something you can handle for me?”  
“Mom—ahh—I don’t think he’s that kind of lawyer.” I smile, hoping the attorney and witnesses we have gathered will assume my mother is kidding.  
In fact, she has been threatening to sue since she slipped off the stool in my kitchen. I was at the sink across the counter, and I saw her take the fall, but I can’t say for sure what happened. She moved from sitting to almost standing before she appeared to crumple to the floor. My friend Bruce, who was occupying the other counter stool, reached for her. But she went down too fast.  
“Mom, are you okay?” I was on my knees next to her.  
“My hip, goddamn it.”  
“What about your back?”  
“My back is fine, but my fanny is killing me. Why are your floors so damn slippery? I’m going to sue you!”  
“You probably bruised your tailbone, Mom. You didn’t hit your head, did you?”  
“No, goddamn it! I landed on my fanny. Ouch!”  
“You’ll be sore for a few days, but I don’t think you’ve broken anything. How about some ice?”  
“Ice! Your house is already too goddamn cold!” She sat down on the loveseat in the living room. “My fanny hurts like hell! Ouch! I’m going to sue you!”  
“Well, there’s not much you’d get out of a lawsuit, Mom. Kind of like blood from a stone?”  
A smile, and then a shift of position. “Ow! My fanny hurts! I’m going to sue you, Kathleen.”  
My mother has threatened legal action every time she notices that her butt hurts. As best as I can figure, she forgets about the injury until she sits on her tailbone a certain way, and then— bam—she remembers she fell, determines my slippery floors are to blame, and feels the impulse to sue me all over again. This has been happening, on average, about twenty times a day for the past six days. It’s getting on my nerves.  
If I were less annoyed by her repeated threats to sue me, I might find it more interesting that she has reinvented the story of her fall. She begins to tell the attorney that she was walking down the hallway when she fell. The cause? Not her hip. Not her balance issues. My slippery wood floors. She seems to have forgotten falling off the stool, but she is clinging to this new version of events, which, I have to admit, does more to support her claim. My kitchen floor is covered in nineteen-year-old linoleum with no shine left in it. Slippery, it is not.  
The attorney to whom she relates her tale of household injustice is, thank God, a man. A tall man who is wearing a suit. “Well, Anne, I am that kind of attorney too. But what do you say we get these documents in order before we discuss your lawsuit against your daughter?” My mother is satisfied and charmed. When he chuckles, she does too. On the whole, and despite her own impressive career, my mother prefers men, especially in positions of authority, and especially tall men, who remind her of my father.  
We’re meeting at my accountant’s office. Kathey has been doing my taxes forever—since she was a one-woman show sharing her crowded quarters with a computer business run by the man who is now her ex. These days she has nicely appointed offices, several folks working for her, and a new husband. She also looks about ten years younger than she did when I first met her, which means she has reversed her aging process by about twice that many years. I’m pretty sure her secret is happiness.  
Kathey’s office is in Osterville, a wealthy little village on Cape Cod, and most of her clients have what might be genteelly called “resources.” The elder-law attorney she recommended was from a high-priced law firm outside Boston—no doubt the sort of prestigious contact most of her clients would prefer. When I’d met with him a few months ago, he was kind and helpful. He made several recommendations, some more expensive to carry out than others and some just not necessary for folks of our limited means. I’ve decided to stick with the bargain package: power of attorney, health care proxy, and a revision of my mother’s will. At some point she made changes in her own handwriting to the original document.  
As the attorney begins passing out the paperwork, Kathey tells my mother how great it is to see her. Kathey’s office manager, Katherine, compliments my mother on the Celtic cross she is wearing around her neck.  
“I bought it in Ireland,” my mother declares.  
I am grateful my mother has been distracted from the pain in her tailbone. When Katherine asks about the trip to Ireland, my mother says she has been several times and that she studied one summer at Trinity College in Dublin. What comes next surprises me.  
“The people in Dublin are lovely,” my mother says. “So friendly and generous—not like the people in Paris, which is where my daughter prefers to travel.”  
“Oh, have you been to Paris too?” Kathey asks.  
I might have asked the same question myself. If my mother has seen Paris, this is the first I’ve ever heard of it.  
“I only spent a day there. But that was enough! We took the train from Paris to London and then flew over to Ireland.”  
“Oh, you took the Chunnel train? How was that?” asks Katherine.  
“Fine, but the people in Paris—they were so rude! I wouldn’t want to spend any time in that city! But my daughter—she loves it there.”  
My mother is trying to get a rise out of me. She wants me to defend Paris, my adopted city and the setting of a novel I finished writing this fall. The digs about Paris, the threats to sue—they spring from the same well of anger. My mother isn’t happy to be at the attorney’s today; she doesn’t like the way I am “controlling” her life. She’s mad at me, and she wants me to be mad back.  
I shrug and smile, not only to keep the peace but because I don’t know whether my mother has been to Paris. Was the Chunnel finished in time for her last trip to Ireland? Why would anyone go through Paris to get to London to get to Dublin? And after all my trips to Paris, why would she mention this to me for the first time now? But would she just make up a day in Paris?  
My mother has invented the slippery floor story, and in recent months she has reengineered several other truths to suit her purposes. She swore, for example, that she dropped her car keys when she was getting out of her car in the dark. She called me to come root around in the dirt under the car. No keys were found in the vicinity. Yet she would not budge from the story she had come to believe was true: she had dropped the keys, in the dark, in the rain, and they were somewhere under the car. “I just hope someone hasn’t stolen them.”  
After I persuaded her that we should look inside the house, I found the keys hiding between the cushions of her living room loveseat.  
The lost and found keys, the kitchen turned hallway, and now this Paris story: I am coming to understand that when my mother forgets something—but not everything—about a situation, she becomes creative. She fashions a story that might be true, and then she clings to her reinvention. What’s remarkable is that she is able to hold on to the new mythology. Assert, repeat, repeat, repeat. And me? Unless I am a witness to the original truth—like the upset in my kitchen—I have no idea where the line between fact and fiction is drawn. Has my mother been to Paris? Has she taken the Chunnel train? It seems so unlikely— but my mother, the drama coach, is still a great actress and a persuasive speaker. Is her Celtic cross from a little shop in Dublin? I’m not sure. Maybe. Part of me feels like a traitor for doubting her. I check back into the conversation and hear my mother claiming the Irish knit sweater she is wearing today as a souvenir from the Irish countryside. Ireland? Try T. J. Maxx.  
We move through the meeting. When my mother complains I am taking over her life, the lawyer explains that the power of attorney just gives me copilot status and that the health care proxy only comes into play if she is unable to make a medical decision herself.  
“Yes, yes. I understand,” my mother says, waving away further discussion with her fly-swatting voice. She signs each document, and Kathey and Katherine sign as witnesses. Their signatures and the attorney’s oversight of these transactions affirm that my mother is of sound mind. On the way home, I can’t shake the feeling that we got those papers signed just in the nick of time.

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Table of Contents

Chapter One: What We Don’t Know
Chapter Two: Eating Cake
Chapter Three: Minding My Business
Chapter Four: House Hunt
Chapter Five: Smoking
Chapter Six: Mother-Daughter
Chapter Seven: Don’t Get Old
Chapter Eight: Forgetting
Chapter Nine: So Sue Me
Chapter Ten: Sundown at Sunrise
Chapter Eleven: Only Child
Chapter Twelve: Life Inside
Chapter Thirteen: Romper Room
Chapter Fourteen: Wintering
Chapter Fifteen: In the Pink
Chapter Sixteen: Imperfection
Chapter Seventeen: Bad News Santa
Chapter Eighteen: Hollywood Ending
Chapter Nineteen: The Moment
Chapter Twenty: Mother’s Day
Chapter Twenty-one: Till It’s Gone
Chapter Twenty-two: DNR
Chapter Twenty-three: Irish Wake
Chapter Twenty-four: After Words

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Customer Reviews

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Sort by: Showing all of 3 Customer Reviews
  • Anonymous

    Posted October 28, 2011

    Highly Recommended for anyone dealing with this disease

    I am going through this stage of life with my Mother and this book has been a wonderful source of strength for me. ALzheimer's is a terrible disease and Kate shows the warmth adn compassion she had in taking care of her Mother. I want all of my Friends to read this book. It is so touching.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted February 26, 2013

    I love this book. It is a worth while read for anyone dealing wi

    I love this book. It is a worth while read for anyone dealing with dementia or end-of-life issues with a loved one. I wish everyone in my family would read it. Thank you, Kate Whouley!

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  • Anonymous

    Posted July 16, 2012

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