2012 New England Book Awards winner for non-fiction
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.
From the author of the much-loved memoir Cottage for Sale, Must Be Moved comes an engaging and inspiring account of a daughter who must face her mother’s premature decline.
In Remembering the Music, Forgetting the Words, Kate Whouley strips away the romantic veneer of mother-daughter love to bare the toothed and tough reality of caring for a parent who is slowly losing her mind. Yet, this is not a dark or dour look at the demon of Alzheimer’s. Whouley shares the trying, the tender, and the sometimes hilarious moments in meeting the challenge also known as Mom.
As her mother, Anne, falls into forgetting, Kate remembers for her. In Anne we meet a strong-minded, accidental feminist with a weakness for unreliable men. The first woman to apply for and win a department-head position in her school system, Anne was an innovative educator who poured her passion into her work. House-proud too, she made certain her Hummel figurines were dusted and arranged just so. But as her memory falters, so does her housekeeping. Surrounded by stacks of dirty dishes, piles of laundry, and months of unopened mail, Anne needs Kate’s help but she doesn’t want to relinquish her hard-won independence any more than she wants to give up smoking.
Time and time again, Kate must balance Anne’s often nonsensical demands with what she believes are the best decisions for her mother’s comfort and safety. This is familiar territory for anyone who has had to help a loved one in decline, but Kate finds new and different ways to approach her mother and her forgetting. Shuddering under the weight of accumulating bills and her mother’s frustrating, circular arguments, Kate realizes she must push past difficult family history to find compassion, empathy, and good humor.
When the memories, the names, and then 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. “Memory,” Kate Whouley writes, “is overrated. ”
“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
“Remembering the Music, Forgetting the Words is powerful, funny, sensitive, insightful and inspiring. As so many of us struggle to care for our aging parents, we can find reassurance in Kate Whouley’s story. She shows us how the final stage in life can hold such wonder, and beneath the heartache-grace.”-Brian Woodbury, Toadstool Bookstore, Milford, New Hampshire
“Kate Whouley recounts her Mother’s journey into Alzheimer’s with heart-wrenching honesty and heart-warming compassion. The book explores the complex relationship of Mother and child, the nature of friendship, and the world of aging and dementia. But ultimately, it’s about what it means to be a caring human being. It made me laugh. It made me cry. It touched me deeply. I love this book.”-Chuck Robinson, Village Books, Bellingham WA
“The loss of my mother many years ago still feels fresh, and l felt a little leery of this book. But once I picked it up, I could not put it down. Kate Whouley has written a book that feels like a friend’s arm around your shoulder, comforting you when you need it most. I completely identified with Kate Whouley’s plight and loved her writing. This is a book just about everyone can relate to and should read.”-Keebe Fitch, McIntyre Books, Pittsboro NC
“I swallowed this book whole. Kate Whouley is a wonderful writer; the emotions sit right there on the page, waiting to be picked up and confronted by her readers. She is a born storyteller sharing a story all too common these days-children journeying with parents into the feared land of memory loss, wanting desperately to make the path as smooth and harmless as possible, and feeling thwarted at every turn by legal issues, the medical establishment, and the economic realities of aging. Although this not a happy story, in Kate Whouley’s intimate and insightful telling, there are moments of pure hilarity.”—Gayle Shanks, Changing Hands Bookstore, Tempe AZ
“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
Reviews
Review: USA Today - November 1, 2011
“In her often humorous and always compassionate memoir, Whouley hopes to transform how people relate to a loved one with Alzheimer's disease."
Review: The Barnstable Patriot - September 16, 2011
“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.”
Review: Shelf Awareness - September 1, 2011
“Whouley gracefully keeps a balance between poignancy and humor. Her intelligent, sensitive voice is a treat…”
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.
Chapter One: What We Donít Know
Chapter Two: Eating Cake
Chapter Three: Minding My Business
Chapter Four: House Hunt
Chapter Five: Smoking
Chapter Six: Mother-Daughter
Chapter Seven: Donít 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: Motherís Day
Chapter Twenty-one: Till Itís Gone
Chapter Twenty-two: DNR
Chapter Twenty-three: Irish Wake
Chapter Twenty-four: After Words
- Click here to listen to an interview with Kate Whouley on The Point
- Click here to listen to an interview with Kate Whouley on Blog Talk Radio
- Click here to read a recent article featuring Kate Whouley in the Cape Cod Times
- Click here to listen to an interview with Kate Whouley on Barnstable This Morning
- Click here to listen to an interview with Kate Whouley on WBUR's All Things Considered
- Click here to listen to an interview with Kate Whouley on Late Mornings KVON
- Click here to read a feature on Kate Whouley and Remembering the Music in USA Today
- Click here to read an essay by Kate Whouley about her mother's birthday running in Obit Magazine
- Click here to read about Remembering the Music on Indie Next's Preview of September 2011
- Click here to read an excerpt from Remembering the Music posted on Salon
- Click here to read a review of Remembering the Music posted on Wicked Local: Provincetown
- Remembering the Music, Forgetting the Words was mentioned in the September 1, 2012 issue of the Boston Globe, click to read
- Click here to see Remembering the Music, Forgetting the Words as one of the Reading Group Choices
Click
here to watch a recent Skype video chat featuring Kate Whouley
Click
here to watch a recent video featuring Kate Whouley posted on the blog
Moving In With Dementia
Click
here to watch a recent YouTube video featuring Kate Whouley
Click
here to watch the book trailer for
Remembering the Music, which was featured as
Shelf Awareness' Book Trailer of the Day on August 31st
C-Span2/ Book TV aired the ALA Panel: "Best of the Best of the University Press" which featured Whouley as a panelist, July 21, Click
here to watch
Contents
About the Book
Kate Whouley is a smart, single woman who faces life head-on. Her mother, Anne, is a strong-minded accidental feminist with a weakness for unreliable men. Their complicated relationship isn’t simplified when Anne exhibits symptoms of organic memory loss. As Kate becomes her mother’s advocate and protector, Kate will discover that the demon we call Alzheimer’s is also an unlikely teacher—and healer. A contemporary mother-daughter story with universal appeal, Remembering the Music, Forgetting the Words, is written with the same “good humor and thoughtful humanity” that Anna Quindlen admired in the author’s first memoir, Cottage for Sale, Must Be Moved, a perennial reading group favorite. Named to the American Library Association’s Best of the Best list for 2012, Remembering the Music, in the words of novelist David Payne “concerns the most important issues: family, mortality, our aloneness in the world, our connection in the face of it.”
Praise
“...often humorous and always compassionate...Whouley is a smooth operator.” —Janice Lloyd, USA Today
“Contemporary subject matter and wide appeal make this an outstanding choice for public libraries — highly recommended for book clubs.” —Barbara Morrow Williams, American Library Association Citation
“An exceptional memoir that reminds us—often with surprising humor—of the richness of life in good times and bad. Remembering the Music, Forgetting the Words is great companion for caregivers.” —David Dosa MD, author of Making Rounds with Oscar
About the Author
Kate Whouley lives and writes on Cape Cod. An avocational flutist, she also volunteers for the Cape & Islands Art and Alzheimer’s initiative. Remembering the Music is an Indie Next Pick and a winner of the New England Book Award. Kate Whouley’s first book, Cottage for Sale, Must Be Moved,was a nonfiction Book Sense Book-of-the-Year nominee.
Questions for Discussion
- In the opening chapter, we learn that Kate Whouley’s mother Anne is a strong, intelligent woman and a role model for her daughter. In Chapter Six, Mother-Daughter, we learn their relationship is more complicated. Did your expectations for their journey change as you learned more about their past? How are family relationships complicated or enhanced by shared history?
- In the absence of siblings or a partner, Kate finds support in friends, particularly her longtime girlfriends Tina and Cindy. Do you have friends in your life who feel like family, or family members who feel like friends? How do you balance friendship and family?
- Kate also seeks support and assistance from Suzanne, a professional in elder care. How does Suzanne help Kate to see her mother differently? Can you think of a situation in your family or personal life in which an outsider helped you gain perspective? How or why?
- Kate, in Chapter Thirteen, mentions that she has never thought of her relationship with her mother as particularly “close.” Would you agree with her characterization? How does their relationship change during the course of the book?
- How does Kate’s understanding of Alzheimer’s disease evolve over time? Does her increasing awareness affect her attitudes toward others in her life?
- Kate makes a connection between playing music and caring for a person with Alzheimer’s. What is it? How might this approach be relevant to non-musicians? Can you think of other activities that require a similar sense of being present?
- On page 105, Kate writes: “Our elders move from strength to debility and debility becomes the norm.” Have you ever had to make accommodations for aging elders in your life? In what ways was your experience similar to Kate’s? In what ways was your experience different?
- “Memory is overrated,” the author declares on page 186. What does she believe is more important? Do you agree or disagree?
- In Chapter Twenty-Four, Kate describes a series of dreams she has after Anne’s death. How would you interpret the final dream in that series? Why do you think the author chose to share her dreams with readers?
- The author ends the book with a description of a concert performance. How does this narrative choice affirm Kate’s enduring connection to her mother? Can you think of more than one way to interpret the title, Remembering the Music?