Coauthors Chapman, Shaw, and Barr give a resounding yes. Their innovative application of the five love languages creates an entirely new way to touch the lives of the five million Americans who have Alzheimer’s, as well as their fifteen million caregivers. At its heart, this book is about how love gently lifts a corner of dementia’s dark curtain to cultivate an emotional connection amid memory loss.
This collaborative, groundbreaking work between a healthcare professional, caregiver, and relationship expert will: Provide an overview of the love languages and Alzheimer’s disease, correlate the love languages with the developments of the stages of AD, discuss how both the caregiver and care receiver can apply the love languages, address the challenges and stresses of the caregiver journey, offer personal stories and case studies about maintaining emotional intimacy amidst AD. Keeping Love Alive as Memories Fade is heartfelt and easy to apply, providing gentle, focused help for those feeling overwhelmed by the relational toll of Alzheimer’s. Its principles have already helped hundreds of families, and it can help yours, too.
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About the Author
EDWARD G. SHAW, MD, MA, is dually trained as a physician and a mental health counselor. He is the primary care partner for his wife, Rebecca, who was diagnosed with eary-onset Alzheimer's disease at age 54. He was a practicing radiation oncologist for 23 years. In 2010, inspired by Rebecca's journey, his medical interest shifted to dementia diagnosis and treatment, and with his additional training in mental health counseling, he founded the Memory Counseling Program that is now part of Wake Forest Baptist Health in Winston-Salem, North Carolina. His moving personal story of caring for his wife, coupled with his innovative use of the five love languages in dementia counseling, inspired the central message of Keeping Love Alive as Memories Fade.
DEBORAH BARR is an author, speaker, and health educator with a passion for encouraging people to engage deeply with God as they journey through tough times. Her previous devotional book, Grace for the Unexpected Journey written for dementia caregivers, was named "Best Inspirational Book" at the 2018 Digital Book World awards. Strength for the Cancer Journey is her sixth book.
Read an Excerpt
Keeping Love Alive As Memories Fade
The 5 Love Languages and the Alzheimer's Journey
By Deborah Barr, Edward G. Shaw, GARY CHAPMAN, Elizabeth Cody Newenhuyse
Northfield PublishingCopyright © 2016 Marriage And Family Life Consultants, Inc., Deborah Barr, and Edward G. Shaw
All rights reserved.
Ed and Rebecca: A Love Story
IT WAS A BEAUTIFUL North Carolina morning in August 2013. Rebecca and I (Ed) were sipping our coffee on the back porch, part of our morning ritual. Without warning, the awful moment I had long dreaded finally arrived. Rebecca looked at me and said, "I have no idea who you are." Her blank stare confirmed that she really meant it.
"But Sweetie, I am your husband, Ed. You are my wife. We've been married for 33 years." This clue, more like a plea, didn't help. The pain of the moment drove me from the porch into the house. Tears streaming down my face, I stood before our family portrait, taken only months before, at Thanksgiving. I looked into the faces of our daughter, Erin, her husband, Darian, their two-year-old son, Paul, our other daughters, Leah and Carrie, sweet Rebecca, and me. I was overcome with the need to talk to one of the girls. I reached Leah first. When she answered, there were no words, just sobs, deep sobs that started in my feet and shook my body as they reached for my heart, landing in my eyes, which streamed like a leaky faucet.
"Mama has forgotten us. We're gone."
Many times I've reflected back on that terrible morning, asking myself the same unanswerable question: how could 37 years of a loving relationship and a third of a century of marriage disappear from Rebeccas mind overnight?
Rebecca Lynn Easterly and I began dating in the fall of 1976. We were students at the University of Iowa, where we both were sophomores, she a speech pathology major, I, premed. I asked her out on my 19th birthday, October 30th. She was sitting in the student union studying over a cup of coffee, and she was beautiful. Silky-smooth blonde hair, long legs, a blue leotard top, bellbottom jeans, and a face that radiated kindness. We had met briefly the year before. I hoped shed remember me. After getting up the nerve to reintroduce myself, she accepted my invitation for our first date. One week later we went dancing and had dinner at the Brown Bottle, an iconic Iowa City restaurant. During dinner and afterwards, we talked and talked and talked. We had so much in common. Although we both had alcoholic fathers, we shared a love of family, especially children, and an appreciation for nature as a reflection of the Creators hand (though at the time, I was a committed agnostic). I walked her home, we shared our first kiss, and we both knew that we were in love. Three weeks later, we talked about marriage and the desire to have three children, all daughters. Three and a half years later, we were married.
Rebecca graduated summa cum laude with a near-4.0 GPA, in the top 1 percent of her graduating class. She later received a master's degree in speech pathology from Iowa. After completing my premed studies, I went to medical school at Rush Medical College in Chicago. In May 1983, we headed north to the Mayo Clinic in Rochester, Minnesota, three-week-old Erin in tow. There, I completed my internship and residency in radiation oncology and remained as an attending physician, launching a career as a brain tumor doctor. Our second daughter, Leah, was born in 1985, and three years later Carrie completed the trio of daughters we had dreamed of during our courtship. We spent 12 years in Rochester, happy and surrounded by family and friends.
In 1995, we headed southeast to Winston-Salem, North Carolina and the Wake Forest School of Medicine for an offer too good to refuse: a radiation oncology chairmanship and the opportunity to establish a research program in how brain cancer and its treatments affect brain cognitive function (words in bold type are defined at the end of the chapter). We thrived as Southerners. Erin, Leah, and Carrie marched through the ranks of elementary, middle, and high school, and then college. Throughout those years, Rebecca was "supermom." Navigating with her Day Planner notebook, kindness, and grace, she organized, fed, and nurtured our family while I was busy seeing patients, publishing journal articles, teaching, and getting research grants.
In the spring of 2005, as our family was preparing with excitement for Erin and Darian's wedding, Erin noticed something odd: her "super mom" was struggling to keep up with the details of wedding planning. It all came together, though, and in May we celebrated the marriage of our oldest daughter. One year later, we mourned when Rebecca's older sister, Leslie, died from colon cancer. This was the first tragedy our extended family had experienced. Rebecca was deeply saddened by Leslie's death, as she and Leslie had been kindred spirits. Throughout the summer, fall, and winter of 2006 and the spring of 2007, Rebecca was sad. She was distant, a bit disorganized, and forgetful. I attributed it to grief and a gradually emptying nest, until one Saturday morning as we sat, me reading the newspaper, Rebecca the latest issue of U.S. News and World Report. Rebecca said, "I've read this article three times and I can't remember a thing about what it says." At her age, 53, I knew this was not normal.
One day the following week, my car was in the shop. Rebecca was going to pick me up from work at 5:30 p.m. and take me to the dealership to retrieve my car. Usually prompt, she hadn't arrived on time. At 6:00,1 called her, a bit miffed. "Are you going to pick me up?" She had no idea she was supposed to come and get me.
"Okay, I'm on my way," she said.
We lived only 10 minutes from the medical center, but she didn't arrive until 6:30.
"What took so long?" I inquired.
"Oh, I took a different way of getting here."
When she described her route, I realized that she'd gotten lost along the way. I had always marveled at Rebecca's sense of direction, and had even nicknamed her "the human compass." Now I was really worried.
Wake Forest School of Medicine is well known for both geriatric research and care. In mid-2007, I made an appointment for Rebecca to see Dr. Jeff Williamson, head of geriatrics and a well-known dementia expert. In his initial assessment, Dr. Williamson diagnosed Rebecca with depression and prescribed an antidepressant.
"Let's see if things improve after a couple of months on the medication. Depression is a common cause of memory loss." But I could tell he was worried that something more was going on. So was I.
After her symptoms failed to improve, Dr. Williamson decided to order some blood tests, a magnetic resonance imaging (MRI) scan of Rebecca's brain, and assess some of her cognitive functions such as attention, memory, language, multitasking, and spatial skills. The blood tests came back normal, but the MRI showed mild shrinkage of Rebecca's brain, especially in the regions that control memory and spatial skills. The cognitive assessment confirmed loss of short-term memory and spatial skills way out of proportion with what would be expected for Rebecca's age and educational level.
Dr. Williamson told us, "My diagnosis is something called mild cognitive impairment (MCI), a condition that often leads to Alzheimer's disease. I think you should get a second opinion. Rebecca is too young to have Alzheimer's, especially since she doesn't have any family history of the disease."
Our next-door neighbor in Rochester, Minnesota had been a Mayo Clinic neurologist named Ronald Petersen. He and his wife, Diane, had two children who were about the same ages as our girls. Diane and Rebecca often carpooled, as our kids went to the same elementary school. Affectionately known to us as "RP," Dr. Petersen was a nationally and internationally recognized expert on Alzheimer's disease. In fact, it was his research that led to the discovery of MCI as a precursor to Alzheimer's. Getting a second opinion from him seemed logical. Not only was he "the best" dementia doctor in the world, he had known Rebecca for 20 years.
In the early summer of 2008, we spent a week at the Mayo Clinic where Rebecca had an extensive evaluation to find the cause of her memory loss. In addition to blood tests, a spinal tap, and more in-depth neuropsychological testing, Dr. Peterson ordered a special MRI scan and two Positron Emission Tomography (PET) scans. One PET scan was done to reveal Rebeccas brain metabolism; the other, a newer type of PET scan, was done to reveal amyloid, a protein that collects abnormally in the brain, causing inflammation, deterioration, and shrinkage. Amyloid and another protein, tau, form the "plaques and tangles" that are thought to cause the brain damage of Alzheimer's disease.
Despite our earnest hopes and fervent prayers to the contrary, the diagnosis was definitive: early-onset Alzheimer's disease. The prognosis: 8-10 years' life expectancy, progressive decline in all brain functions, the need for professional caregivers, and possibly nursing home placement.
After receiving the news, Rebecca and I drove in silence to the Minneapolis airport to catch our return flight home. We wept as we drove, exchanging glances filled with sadness, fear, and uncertainty. At Pine Island, a small town north of Rochester where Rebecca had worked as an elementary school speech teacher, I pulled over. We had to talk. Rebecca asked me, "What does this mean for us? For the girls?" She had already forgotten what Dr. Petersen said, so I told her again. We then embraced as we cried, speaking our love for one another in silence, reaffirming the vows we had made to each other 28 years earlier.
Her voice full of sadness, Rebecca said, "I don't want to be a burden. I want Erin, Leah, and Carrie to live their lives, pursue their dreams and not let this get in the way. I will be okay. I know God loves me and will take care of me. Eternity in heaven is as real to me as life on this earth." This was the only time we would ever directly speak about her Alzheimer's.
In the years that followed, Rebecca's dementia progressed relentlessly through the stages of Alzheimer's disease. By the spring of 2010, her driving skills had deteriorated to the point that she was no longer safe on the road in her bright red Volkswagen Beetle. Navigating from home even to nearby destinations had become too challenging. On one occasion, a wrong turn took her several towns south of Winston-Salem, about 25 miles from home. Scratches mysteriously appeared on the side of the car. She drove very slowly, stopping in the middle of the road when she was unsure of where to go. Finally, the keys had to be taken away.
"I don't understand why I can't drive," she protested. "I've never gotten a ticket nor have I been in an accident. It's unfair." Like so many people who have dementia, she didn't have insight into how the disease was slowly stealing her abilities, moving her toward disability.
Shortly after Rebecca had to give up her car keys, she and I took a driving trip to the Pocono Mountains. We made a stop at the Crayola factory, which brought back warm memories of Rebecca and our daughters coloring around the kitchen table when they were younger. What we had hoped would be a fun adventure turned sour when Rebecca left her purse under a bench while we watched a demonstration on how crayons are made. Unfortunately, we didn't realize that the purse was missing until after the Crayola factory had closed. We spent the night nearby and went back in the morning, but the purse was nowhere to be found. We filed a police report and left. This incident upset Rebecca immensely.
"I hate my brain," she said, teary-eyed, as we drove away.
Later that summer, while walking to the grocery store, Rebecca got lost. As she was about to turn onto one of the busiest north-south streets in the city, Elizabeth, a family friend, just happened to be driving by and saw Rebecca looking at street signs. It was obvious that Rebecca was trying to figure out where she was. Elizabeth pulled over, lowered her window, and called to Rebecca, "Where are you headed?"
"To the grocery store," Rebecca replied.
"Jump in. I'll give you a ride," Elizabeth offered, realizing that Rebecca was walking in the opposite direction of the store.
To this day, our family thinks of Elizabeth as a guardian angel, and we wonder what might have happened if she hadn't been in that place at that time.
Shortly after the grocery store incident, we hired Rebecca's first paid caregiver. Erica, a certified nursing assistant (CNA), spent the weekdays companioning Rebecca on her journey with Alzheimer's disease. Within four years, Rebecca would require round-the-clock caregivers. This crew — affectionately known as the "A-team" (because their names, Letisa, Fatima, Tasha, and Fiorina all end in "a," as does Rebecca) — is still with us, caring for Rebecca day and night.
Looking back, I would have to say that the most difficult and challenging days of Rebecca's Alzheimer's journey were the four months that followed the awful day in 2013 when she "lost" the girls and me. She became very agitated, especially starting at dusk and on into the early evening (known as "sundowning").
"I want to go home," she'd say, marching around the house from door to door, trying to escape.
"But you are home, Sweetie," I would tell her. "This is our home."
She could not be comforted. Rebecca was yearning for her childhood home, a small bungalow in her hometown of Cedar Rapids, Iowa, where she had lived in the mid-to-late 1960s. I would have to physically block her attempts to exit as she punched and kicked at me, behaviors that were so atypical for sweet and gentle Rebecca. Dr. Williamson prescribed a medication that reduced some of Rebecca's aggression, but caused her to become withdrawn and deeply depressed. During this time she would lie on her bed or the couch and sob inconsolably. Dr. Williamson then tried a different medication which, over time, reduced her agitation and returned her mood to normal and helped her sleep.
After Rebecca no longer recognized me as her husband, we continued to sleep in the same bed, but she turned her back to me and stayed on the very edge of the bed, as far away as she could be without falling out. One night she became very agitated and told me she didn't want me sleeping in the same bed as her, so I set up a twin daybed in the corner of our bedroom. Those first few nights I was sleepless, grieving. We were only separated by a few feet, but it felt as though she were a million miles away.
Early in our marriage, Rebecca and I discovered we both fell asleep more easily if we were touching one another, either by "spooning," facing in the same direction with my one arm wrapped around her, or turning opposite of one another, "rump to rump." Sometimes we wouldn't go right off to sleep. Rather, we'd make love, then spend some time together in one another's arms, talking about how blessed we were to have each other and to have Erin, Leah, and Carrie. For the first couple of months of being alone at night in the twin bed, I would lie awake, literally aching with the desire to touch Rebecca, to lie in bed with her, to hold her. During these months I had several long conversations with God, thanking Him for bringing Rebecca and me together as husband and wife, for blessing us with amazing children, but in the same breath asking how I could love this woman without being able to touch her. With this loss I began my own journey of loneliness and celibacy.
In early 2014, I moved into my own bedroom since Rebecca was getting up multiple times during the night and I found it impossible to get enough sleep to function at work. She had no concept of the day, date, month, season, or year. She was unable to read or write, even to sign her own name, or add two plus two. Another challenge was spatial orientation. She had lost the ability to center her bottom over a chair or couch and required assistance just to sit, including sitting on the toilet. With these further declines, evening and nighttime caregivers were added to the A-team. This meant that Rebecca and I would never again have an evening alone at home together. There didn't seem to be any part of our lives that Alzheimer's disease hadn't taken away or changed.
In the two years since then, Rebecca has transitioned into late-stage Alzheimer's disease. She lives only in the moment with no remembrance of the past and no thought of the future. Her days are spent coloring at the kitchen table, putting simple puzzles together, and breaking twigs into small pieces. She initiates no conversation, speaks unintelligibly, and often needs to hear something repeated multiple times before she can understand what has been said to her. She walks slowly and unsteadily, always at risk for a fall. Because she is so unsteady, and also has difficulty processing visual information, someone must accompany and hold onto her at all times. Due to unpredictable urinary incontinence, she wears pull-up adult diapers. She needs help using the toilet, taking a shower, and getting dressed. Her medicines must be crushed and mixed into food as she cannot swallow pills any longer. Despite all this, she is happy most of the time.
Excerpted from Keeping Love Alive As Memories Fade by Deborah Barr, Edward G. Shaw, GARY CHAPMAN, Elizabeth Cody Newenhuyse. Copyright © 2016 Marriage And Family Life Consultants, Inc., Deborah Barr, and Edward G. Shaw. Excerpted by permission of Northfield Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
ContentsAbout the Authors, 9,
A Word from Gary, 13,
CHAPTER 1 Ed and Rebecca: A Love Story, 17,
CHAPTER 2 Love: It's All in Your Head, 35,
CHAPTER 3 Alzheimer's Disease Puts Love to the Test, 67,
CHAPTER 4 Every Day Is the Best Day, 97,
CHAPTER 5 Facilitating Love, 127,
CHAPTER 6 Stories of Hesed, 155,
CHAPTER 7 Voices of Experience, 181,
CHAPTER 8 The Journey No One Wants to Take, 199,
Appendix A: 40 Ways to Say "I Love You" in Middle- and Late-Stage Dementia, 205,
Appendix B: For Those Who Want to Know More, 208,
Appendix C: Suggested Resources, 217,
What People are Saying About This
"Through stories that are moving and unflinching, Keeping Love Alive as Memories Fade shows how love can persist even as dementia gradually erodes memory and physical abilities. It offers powerful testimony to the lasting nature and immense power of human relationships."
- Peter V. Rabins, MD, MPH | Co-author, The 36-Hour Day
"Keeping Love Alive takes on what has been notably absent from most personal narratives or guides to living with someone with Alzheimer’s or a related disease. Readers are rewarded with sound antidotes to the pervasive nihilism about the potential for loving relationships and meaningful connections as intimate family relationships irrevocably change when memories fade. The love languages are positive approaches to being present backed by sound rationales for why it is important for the individual and the family. Blessedly removed are the more typical attempts to sugar coat the realities of loss. Ed’s personal and professional stories will resonate with caring couples and families desperately seeking reminders of the transformative resilience of loving long-term relationships. Long overdue, this book reminds families that although they don’t have to do it all, meaningful connections can make a difference in the quality of family life despite progressive cognitive decline."
- Lisa P. Gwyther, MSW, LCSW | Director, Duke (Alzheimer’s) Family Support Program; Duke Health
"Love lives on during times of loss, and there is profound value and redemption in intentionally expressing both the love and the grief that is part of the Alzheimer's journey. Yes! Be open. Be kind. The world needs more compassionate, love-affirming books like this."
- Alan D. Wolfelt, Ph.D. | Director of the Center for Loss and Life Transition and author of Healing Your Grieving Heart When Someone You Care About Has Alzheimer’s
"As a geriatrician, I am all too familiar with the Alzheimer’s disease and the devastating effect it can have upon those afflicted and those who care for them. Alzheimer’s and other dementias are the most terrifying complications of growing older, more feared than cancer, heart disease, and even death itself. So whether you simply wish to know more about these increasingly epidemic disorders or especially if already dealing with their losses and challenges in yourself or a loved one, Keeping Love Alive as Memories Fadeshould be required reading. For as artfully crafted and compellingly written, this compact volume brings hope, insight, and practical coping strategies into clear focus. For indeed love is the answer and its flame must be kept alight through every phase of this journey to its end."
- William R. Hazzard MD | Professor of Internal Medicine, Section on Gerontology & Geriatric Medicine; Wake Forest School of Medicine; Wake Forest Baptist Health
"Brilliant minds come together in this essential guide through the Alzheimer’s journey! I would have loved this book when my mom was fading away. You’ll learn how to stay connected with the loved one you are watching disappear with real life examples as well as specific daily exercises and tactics you can use to stay in touch and in love. This roadmap of the Alzheimer’s brain allows you to follow along, adapting and changing your interaction with a brain that is continuously changing with each stage of this disease. You can’t fix what is breaking, but you can break through… with unconditional love."
- Lanie Pope | Chief Meteorologist, WXII News, Winston-Salem, NC
"A much-needed and refreshingly instructive guide devoted to the essential discussion of relationship, intimacy, and the complexities of connection at all stages in the dementia experience. Many wise books counsel caregivers on learning the language of dementia, but in the illuminating text of Keeping Love Alive as Memories Fade, the authors remind us of our deeply-rooted shared humanity with persons with dementia, and that learning the transformative language of love is indeed, the most profound, affirming, and enduring form of communication."
- Lisa Snyder, MSW, LCSW | University of California, San Diego; Author, Speaking Our Minds - What It’s Like to Have Alzheimer’s