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Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia, by Kate Whouley
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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.”
- Sales Rank: #2423815 in Books
- Brand: Brand: Beacon Press
- Published on: 2011-09-06
- Released on: 2011-09-06
- Original language: English
- Number of items: 1
- Dimensions: 8.77" h x .89" w x 5.75" l, .93 pounds
- Binding: Hardcover
- 240 pages
- Used Book in Good Condition
Review
“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
“A lovely, honest account of her mother’s decline into Alzheimer’s disease.”—The Boston Globe
“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
About the Author
Kate Whouley lives on Cape Cod, Massachusetts, where she is the founder and owner of Books in Common, an independent book-industry consulting company. Her first book, Cottage for Sale, Must Be Moved, was a Book Sense Book-of-the-Year nominee. Whouley’s personal essays have appeared in the Cape Cod Times, Boston Globe, and the book-industry online journal Shelf Awareness.
Excerpt. © Reprinted by permission. All rights reserved.
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.
Most helpful customer reviews
13 of 13 people found the following review helpful.
A Journey Through Alzheimers From a Daughters Perspective
By Pamela V
Remembering the Music, Forgetting the Words, by Kate Whouley, is a daughters story of her experiences dealing with her mothers organic brain syndrome, aka Alzheimers disease. Kate, the only child of vibrant drama-teacher Anne, was faced with making decisions about her mothers care when the common symptoms of dementia began manifesting themselves : inadequate attention to personal hygiene, nourishment and attention to household maintenance.
Interspersed with details of the authors life as an author and flutist, the book kept me interested from beginning to end. I am a nurse in a rehab facility and work with dementia patients daily, and this book was realistic even to me. Another reviewer remarked that Whouley sent her mother to an assisted living facility too early, but that is a personal decision that cannot be judged by others. It sounds to me like Anne was doing well at the assisted living facility, and that it worked well for her. It often takes three shifts of personnel to care for a dementia patient. No one person should be expected to care for someone with OBS. This is not about being a hero.
I found this book to be interesting and well written. You can tell the author loves her mother, despite their differences and the unattractive verbal outbursts that her mother bestowed upon her, as many dementia patients bestow on loved ones and caregivers. The author exhibits some guilt in placing her mother in an assisted living facility, and that is common. She took the necessary steps to ensure her mothers safety. There aren't that many solutions to a very complex problem.
This book will be helpful for anyone caring for a loved one with dementia, who feels like reading about someone with a common issue. It will clarify and outline the most commonly taken steps for families with organic brain disease : limited assistance, assisted living, long-term care. It always helps to know you are not alone.
9 of 9 people found the following review helpful.
Insightful
By Becs
I loved this book and read it in just 24 hours.
The book opens with the author at age 45 preparing a launch party for her first book. She draws parallels to a wedding, wondering if her mother wishes that she was married and providing grandchildren. This is mentioned to good effect several times in the book, always light-heartedly, though perhaps with a tinge of regret. At this book-signing she and her mother are unaware that her mother will soon be diagnosed with dementia.
The author provides a delightful picture of her mother's many accomplishments as a teacher and drama coach, and explains how she felt about this as a child and teenager. She also fills in her mother's life now; divorced from her father, she experiences an unexpected and unwelcome break-up with the man she has been dating. Things seem to be beginning to fall apart, and it is then that we learn of her mother's remarriage into an abusive relationship, the uncertainty and fear that the author felt, and her escape to college. She also slowly reveals her mother's treatment and recovery from alcoholism and current inability to care for herself at home.
The author is an accomplished flutist, and she weaves rehearsals and performances, and how she feels about performing music into the narrative in almost equal measure, explaining how her mother chose that instrument, but generally does not show much interest or appreciation for her talents. How this changes more positively as her mother's disease progresses is one of the moments of grace in this book.
Fairly early in the book the author gets help in the person of a lawyer (for power of attorney and health care proxy) and a counselor (providing much needed information and support). The insights she discovers allows the author to re-frame her on-going experience of taking more responsibility for her mother's day-to-day life. As she begins to recognize her own capacity to be compassionate in their personal relationship, the reader learns too.
Her mother eventually enters residential care. She has a history of cancer and when it recurs, the daughter is provided with all the options for treatment. She makes the decision to provide only palliative care, in part because the physician advises that that anesthesia during a surgical resection would likely make the dementia worse. Her mother is not a candidate for chemotherapy because of compromised kidneys, and radiation would be only palliative and not cure the cancer.
Other reviewers have questioned that the daughter chose not to tell her mother that she had cancer. I feel a careful reading of their verbal exchanges, especially her mother's responses, shows that what understanding might have been gained, would not have been retained.
"For my mother, what matters most is the moment we are in. There is no memory of the moment before, and the moment to follow is not the future, but the new present---the moment we will inhabit as soon as this moment passes......Though her cycles of conversation have grown shorter in recent months, I have come to realize how little that really matters."
Everything that they author wrote about the pain management program provided and maintained by hospice seems to me to be the most humane way to handle this sad situation. This is a daughter who was faithful to the spirit of her mother and was able to put aside some very challenging childhood history in order to provide loving care and attention at the end of her mother's life. We would all wish to be so successful.
13 of 14 people found the following review helpful.
A MOVING MEMOIR
By Bob S.
This is a very personal and moving remembrance of the writer's mother facing Alzheimer's. Kate Whouley recreates her slow realization that her mother's day-by-day loss of ability to handle her mail and her money, endless repetitions, her unpredictable anger at her daughter, even her inability to eat and drink, add up to the dread diagnosis. Whouley honors her mother in this portrait while helping us understand more about this unthinkable disease.
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