'til Death or Dementia Do Us Part
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© 2018 by Marilyn Reynolds
All rights reserved by Marilyn Reynolds. No portion of this book may be reproduced in any form without permission from the publisher, except as permitted by U.S. copyright law. For permissions contact riverrbooks@gmail.com or contact the publisher as listed below.
The author and its publishers are not medical experts. The content provided herein do not take the place of medical and/or legal advice from your doctor and/or attorney. No liability is assumed for losses or damages due to the information provided in this personal memoir. You are responsible for your own choices, actions, and results. You should consult your doctor and/or attorney for your specific questions and needs as they pertain to treatments of and/or caring for a person with dementia and/or any other medical conditions.
Published by:
River Rock Books
P.O. Box 19730
Sacramento, CA 95819
ISBN: 978-0-9994385-1-0
Cover art: Angela Tannehill, ThinkstockPhotos.com
Author photograph: Dick Schmidt
ACKNOWLEDGMENTS
I am ever grateful for the unwavering support of so many. These include Marg and Dale Dodson, Norman and Judy Franz, Kathy and Joe Harvey, Beth Reynolds, The Hundred Hours Club participants, Sharon Reynolds-Kyle and Doug Kyle, Matthew Reynolds and Leesa Phaneuf Reynolds, Jerry Reynolds, Marilyn and Bill Sandbom, and Jeannie and Bill Ward, and countless others.
My writing colleagues, including Karen Kasaba, Kathy Les, The Loft Writers, and the Noepe Workshop participants. Their close readings and shared insights were invaluable.
Those who, among others, worked to bring this book to fruition, including Jan Haag, Katie McCleary, Krista Minard, Julia Moore and Angela Tannehill.
The professionals who treated both me and Mike with respect, and who offered specific help when they could, and empathy when they couldn’t. These include the staff at Accent Care Hospice Services, Dr. William Au, Dr. Patricia Brunner, Dr. Frank Capobianco, Carol Kinsel of Senior Care Solutions, Dr. Michael McCloud, and other nurses, physician assistants, and emergency hospital doctors, whose names are now lost to me.
The army of caregivers whose hard work and compassion helped ease the guilt and pain of “placement.”
Table of Contents
CAST OF CHARACTERS
FOREWORD
PROLOGUE
WHO MIKE WAS BEFORE HE WASN’T
REMINDERS OF THE RICHNESS OF LIFE BEFORE FTD
“COME BACK TO SORRENTO,” OR “TOMA A SURRIENTO”
I COULD WRITE A BOOK
PANIC ATTACK OR...?
THESE SHOULD BE GOOD YEARS
IS THE MUSIC DIRECTOR’S JOB THE PROBLEM?
IS IT HOT IN HERE?
YIP HARBURG?
DESPERATE FOR A GOOD TIME
NOT SUCH A MERRY CHRISTMAS
WITHOUT A ROOM OF ONE’S OWN
I DON’T KNOW WHERE YOU ARE
“THERE’S NOTHING WRONG WITH ME!”
AN ILLUSION OF NORMALITY
WILD GOOSE CHASES
ANOTHER WRINKLE IN TIME
ALWAYS
CHRISTMAS IN LAGUNA
DIMINISHING NEST EGG
I THOUGHT THEY LIKED ME
DIAGNOSIS
RETIREMENT COMMUNITIES
THE DOWNHILL SLIDE BECOMES AN AVALANCHE
OUR LAST GOLD RIVER CHRISTMAS
THE DREADED DRIVING DECISION
A 6-BY-5-FOOT AQUARIUM
THE TABLE
MOVING ON
THE KINDEST LIE
GOODBYE, GOLD RIVER
IT’S NOT TIME!
DAILY LIFE AT CARMICHAEL OAKS
NOT QUITE KEEPING TRACK OF MIKE
PASQUALE’S ON FOOT
DAY CARE OR . . .?
WHAT WE ALL KNEW
THIS IS MY FATHER’S WORLD
GRIEF STOPS BY
MY LIFE AS A NOMAD
FEWER OUTBURSTS
EMERGENCIES—IT DOES TAKE A VILLAGE
NO MORE NOMADING
ON THE VERGE OF EVICTION
ARRESTED!
AFTER THE GUIDING STAR
SISTER SARAH’S
UPS AND DOWNS AT SISTER SARAH’S
GOOD NEWS?
FOOT PROBLEMS
TOOTH AND NAIL
ANOTHER LOSS
HOSPICE CARE
THE OAK TREE POST-ACUTE CARE CENTER
GATHERING
JUST THE FACTS
Cast of Characters
Michael V. Reynolds, 1940–2014
Marilyn Reynolds (wife and narrator) 1935–
*Sharon Reynolds Kyle oldest child, 1958– (Previous Marriage)
*Husband, Douglas Kyle, 1956–
*Daughters, Subei Reynolds Kyle, 1995–; Lena Reynolds Kyle, 2001–
*Cynthia Lynn Foncannon (Cindi), second child, 1959– (Previous Marriage)
Daughter, Ashley DiFalco, 1991–
Son, Kerry Ryan Foncannon, 1993–
Kerry’s Significant Other, Tara Collins
*Matthew Michael Reynolds, youngest child, 1969– (Birth Father, Michael)
Wife, Leesa Phaneuf-Reynolds, 1970–
Daughter, Mika Genevieve Reynolds, 2006–
*Dale Eugene Dodson, Marilyn’s brother, 1944–
Wife, Margaret Jean (Pecoraro) Dodson, 1945–
Daughter, Corry Ruth Dodson, 1970–
Jerry Reynolds, Mike’s brother, 1935–
Wife, Jackie Reynolds, 1938–
Daughter, Elizabeth Reynolds, 1961–
Daughter, Laura Sue Thompson, 1963–
Son, David Reynolds, 1968–
Hazel Virginia Piercy, Marilyn and Dale’s aunt, 1919–2013
Husband, Martin
Daughter, Linda
Wife, Barbara
* Jeannie and Bill Ward—Longtime friends, fellow travelers
*Marilyn and Bill (1935–2013) Sandbom—Marilyn Reynolds’ friends since elementary school, Mike’s friends by marriage. Longtime fellow travelers.
*Kathy and Joe Harvey—longtime friends, fellow teachers in Southern California.
*Norman and Judy Franz—longtime friends, Norman and Mike taught together in Southern California and remained friends for life.
The 100 Hours Club also included: Judy and Gerry Laird, Jo Souvignier and Rod Nystrom, Nancy and Bill Giachino, Barbara and Alan Lazar, Linda and Dave Dawson, and Don Ditmer, all stalwart friends whose generosity of spirit was remarkable.
*Members of the “100 Hours Club,” which consisted of those who had taken at least 100 hours out of their daily lives to offer both practical and emotional support during these challenging times. They took Mike to lunch, to movies, on drives. They helped pack up the house, sold things on ebay and Craigslist, transported boxes of books to the Friends of the Library donation center, and a seeming ton of household items and clothing to Goodwill. They provided food on workdays. They followed and responded to my FTD blog. They lifted my spirits and Mike’s, too, back when his spirits could be lifted.
Mike’s Southern California music friends who also offered positive support over the past years: Bill Schmidt, Nancy Obrien, Jeannie Davenport, Mary Rawcliffe, Lou Robbins, and others.
With the exception of Carol Kinsel and her organization, Senior Care Solutions, all names of doctors, caregivers, and residential facilities have been changed.
FOREWORD
After 13 years of being a primary care doctor, I have had the distinct honor of caring for many wonderful people with dementia of all kinds. Dementia is an awful, frustrating disease that leaves patients, caregivers and physicians feeling powerless and sometimes hopeless. At a certain point
in the progression of dementia, when patients are no longer capable of knowing where they are or who is around them, there comes a shift. I have found the care that is most needed then is for the patient’s loved ones who struggle with the changes and sense of loss as dementia smothers the person who the patient once was.
“’Til Death or Dementia” is a love story above all else, a wonderful account of the relationship that Marilyn Reynolds celebrated with her husband, Mike. It is beautiful to read and an example of what I hope for all my patients’ families—a deep reflection on memories representing all that was wonderful before the diagnosis of dementia. These memories can bring joy amid the struggle with the realities of the disease. In a most courageous way, Marilyn shares her feelings, doubts, fears and regrets as she recalls Mike’s personality and cognitive changes, both before and after his dementia diagnosis. Her words convey the emotional roller coaster in a way that the reader can feel every turn, loop, climb and freefall. Her remarkable ability to share serves as a road map for all those who care for someone with dementia, as I have witnessed among hundreds of families.
I would hope that everyone would read this story, not just those who find themselves caring for someone with dementia. This beautiful book reminds us that life is finite and worth living to the fullest. It brought a renewed mindfulness for me that every moment counts, and despite all life’s challenges, love reigns supreme and can carry us through the darkest of times. Our legacy lives on in those we leave behind. Read this book, then think about the life soundtrack you want, and start singing!
Christopher Lillis, MD FACP
Medical Director for Primary Care Transformation
UC Davis Health, Sacramento, California
PROLOGUE
In July 2009, after 42 years of marriage, my 69-year-old husband, Michael Reynolds, was diagnosed with frontotemporal dementia (FTD). As frightening and horrendous as that diagnosis was, it went a long way toward explaining the frustrating and puzzling changes in Mike’s behavior that I’d been experiencing from as early as 2005.
Neither I nor any of our family members or friends had ever heard of frontotemporal dementia until the term was applied to Mike. Upon delivering the diagnosis, the neurologist explained that FTD is a neurodegenerative disease. It affects the frontal and temporal regions of the brain—regions that control personality and social behavior, reasoning, speech and language comprehension, and executive functions. There is no known cause. No cure. It is progressive, but the rate of progression is unpredictable. Aricept and/or Namenda, drugs often used to slow the onslaught of Alzheimer’s disease, might in some cases slow the progression of FTD, though that, too, was uncertain.
We were certainly aware of Alzheimer’s. The Alzheimer’s Association estimates that 60 to 80 percent of all cases of dementia result from Alzheimer’s disease. Vascular dementia, caused by inadequate blood flow to the brain, which often occurs with strokes, accounts for 20 to 30 percent, FTD perhaps 10 to 15 percent. In comparison to the wealth of Alzheimer’s publications and media reports widely available, information about FTD was scarce and required a degree of diligence to uncover. I, our grown children, my brother and sister-in-law, and some in our close circle of friends, set about gathering and sharing whatever information we could find. While we familiarized ourselves with whatever FTD information was available, we watched Mike increasingly embody classic textbook symptoms.
This account of the steady deterioration of a much loved, bright, talented, funny, emotionally connected husband, father, brother, uncle, music colleague, and friend is unavoidably skewed by my own particular view. But, particular as it is, it also depicts much that is common to victims of FTD and to the ones who love them.
For those whose lives are being turned upside down by FTD, I hope this account of our experiences opens a window onto the emotional and practical tasks ahead. If such tasks are behind the reader, I hope there may be some comfort in knowing that he or she is not alone with the pain, sadness, frustration, guilt, resentment, and loss that inevitably accompany this journey.
Marilyn Reynolds
Sacramento, California
WHO MIKE WAS BEFORE HE WASN’T
From The Sacramento Bee, December 28, 2014
Michael Vance Reynolds passed away peacefully this past December 19. Born to Lindsay Crawford Reynolds and Leeta Reynolds in Artesia, New Mexico, in 1940, he grew up in Tampa, Florida. In 1965, after receiving a graduate degree in Church Music from Southwestern Seminary in Fort Worth, Texas, he moved to the Los Angeles area, where he began his career as a teacher and singer, and where he met and married Marilyn Dodson Klick.
For 26 years Mike taught choral music in the Alhambra School District, first at Mark Keppel High School, then San Gabriel High School. He was beloved by both students and faculty. Mike sang professionally with the Los Angeles Master Chorale, the Roger Wagner Chorale, and other Los Angeles area groups, joining them on tours throughout the United States, Canada, Russia (then the Soviet Union), Israel, Japan, Estonia, Latvia, Lithuania, and England. He was tenor soloist at the First Presbyterian Church of Hollywood (1976–81; 1989–95) and All Saints Episcopal Church in Pasadena. After retiring from teaching, he and Marilyn relocated to Sacramento where he took a position as music director at the Unitarian Universalist Society of Sacramento, directed the Chanteuses vocal ensemble, sang with Camerata California, and with other Sacramento groups. One of his favorite musical endeavors was performing, with two other close musician friends, the music of Yip Harburg/Harold Arlen, Noel Coward, Cole Porter, and Stephen Sondheim. He was known not only for his sensitive and poignant interpretation of familiar songs, but also for his rousing, comic renditions of “Lydia the Tattooed Lady,” and “Mad Dogs and Englishmen.”
Mike loved family and home, movies and books, and enjoyed many warm and close friendships. He and Marilyn, along with other family and friends, traveled together to Great Britain, Italy, France, Mexico, and through much of the United States. Some of their favorite travel experiences were on various walking tours in England, Ireland, and France. For the last several years, Mike lived under the cloud of frontotemporal dementia. The family wishes to thank the many caregivers, counselors, and friends who provided comfort and assistance.
In addition to Marilyn, his wife of 47 years, Mike is survived by his three children, Sharon Reynolds-Kyle, Cindi Foncannon and Matthew Reynolds; five grandchildren, Subei and Lena Kyle, Ashley and Kerry Foncannon, and Mika Reynolds; and also by two brothers and several nieces and nephews.
A service celebrating Mike’s life will be held at 2 p.m. on Saturday, Jan. 10, 2015, in the sanctuary of the Sierra Arden United Church of Christ, 890 Morse Ave., Sacramento. A reception will follow in Pilgrim Hall. Gifts to honor Mike’s life may be given to The Association for Frontotemporal Degeneration, Radnor Station Building 2, Suite 320, 290 King of Prussia Road, Radnor, PA 19087, or to the Unitarian Universalist Society Building Fund: 2425 Sierra Blvd., Sacramento, CA 95825.
REMINDERS OF THE RICHNESS OF LIFE BEFORE FTD
January 10, 2015
The service was, appropriately, filled with music. Subei and Lena sang that old Beatles song, “In My Life.” Francisco, a college sophomore and Subei’s boyfriend since high school, provided a flawless, sensitive piano accompaniment. Everything was layered. I was watching our beautiful granddaughters, hearing them sing tenderly and in harmony, and I was also seeing Mike, hearing him sing the same song many years ago at Norman and Cindy Franz’s wedding—Norman, Mike’s loyal friend who had come up from Southern California with his present wife, Judy, to be a part of our sad/happy festivities.
The last verse of “In My Life,” repeated twice, was a struggle for Subei and Lena to sing through smoothly. No one was unmoved. I was gripped by all that had been and all that was lost. The lyrics speak poignantly of never losing affection for people and things from the past and ends with the memorable line: “In my life, I love you more.”
Linda Dawson, who had accompanied M
ike at many past performances, worked her piano magic.
Bill Schmidt played “Morning Has Broken” on the organ. I’d requested that, not only because Mike and I had both liked the old Cat Stevens version, but also because I was beginning to get a sense, as the song says, that “Mine is the sunlight, mine is the morning …” after such a long darkness. I couldn’t help thinking that Mike, too, had been lifted from the dark imprisonment of his broken brain.
I was the first of the family to speak. I welcomed all who had come to celebrate Mike’s life, and thanked family and friends who had walked that arduous journey with us, then went on to say, among other things:
Mike and I were extremely fortunate to have had 38 enriching and fulfilling years together. We were married for 47 years, but the first 38 are the ones I’m remembering today.
Mike’s gifts to me were many and varied. The warmth of his ongoing love, his dedication and devotion as husband and father, his interest in our home environment—building decks, brightening patios, bringing in flowers, painting and wallpapering. Well … maybe wallpapering wasn’t such a welcome gift, but all the rest were.
And there was the great gift of his humor. Many years ago, halfway across the Atlantic on a flight to London, guidebooks piled on our pulled-down trays as we considered what we were about to see and do, Mike took my hand, looked deep into my eyes, and said, “My main goal on this trip is to make you laugh until you wet your pants.” That in itself nearly did it.
Our personality differences could hardly have been more extreme. I was logical and practical to a fault. Mike lived by intuition and spontaneity. As you might guess, that was sometimes challenging. But we held a core of common values that went beyond personality styles. We valued family, friendship, education, intellectual and emotional growth. We valued a connection to the broader world. We shared music, books, movies, hopes, dreams, disappointments and frustrations, every aspect of our lives. We brought each other to worlds neither of us would have experienced on our own, and in the process, we each were stretched and deepened.