Alzheimer’s is a particularly cruel disease. It robs us of the people we loveslowly, subtly, but unrelentingly. Our love for them is tested as their needs increase and their recall decreases, and our own needs suffer neglect as more and more of our time and attention is given to our loved one. Cynthia Fantasia is a caregiver. In this deeply understanding and empowering work she walks you through the landscape of caregivingfor your loved one and for yourself. She introduces you to friends and fellow travelers who offer their own words of empathy and insight. And she slowly, subtly, but unrelentingly empowers you to live well as you care for your loved one in the lingering light.
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About the Author
Cynthia Fantasia served as Pastor of Service and Women at Grace Chapel, Lexington, MA, and speaks nationally and internationally. She is a contributing author in Mothers Have Angel Wings and 30 Ways to Embrace Life. Ordained in 2007, she received her Doctor of Ministry degree from Gordon-Conwell Theological Seminary. She and her late husband have three adult children and five grandchildren.
Read an Excerpt
BEGINNING THE JOURNEY
Relying on God has to begin all over again every day as if nothing yet had been done.
C. S. Le wis, Letters to Malcolm: Chiefly on Prayer
It was a sunny January day, and we were heading to the doctor for Bob's appointment. Just an ordinary appointment — nothing to worry about. Sure, he had been acting a little "off" lately: a bit forgetful, asking the same questions over and over, unable to remember names or dates. But everyone has those problems, don't they? He was a bit depressed — the world had changed, and his skills weren't in demand anymore. He was worried about his favorite aunt because she was old and not doing well. He was just trying to "find" himself.
Or, at least, that's what I told myself.
I was upbeat. I was planning to retire in six months, and we were going to do all the things we just hadn't had time to do: spend more time with our grandchildren, take long beach walks on our beloved Maine coast, perhaps sell our home to begin condo living. I would read those books that had been piling up and have rich conversations with Bob and friends over leisurely cups of coffee. Yes, life held such promise. Nothing would go wrong!
I had lived a happy life. For twenty-four years, I served as pastor of women for Grace Chapel, a large and vibrant church in the heart of historic Lexington, Massachusetts. My career had given me the unexpected opportunity to become a world traveler. If there was an opportunity to go, I did — with Bob's full support and encouragement.
And I went without a care, because he was so capable. We tend to accept our happy lives and think they'll always be that way.
Bob had been retired for a few years and was adjusting well. He enjoyed puttering around in the yard and chatting with the neighbors or with anyone who happened to walk by. His career in the environmental field had taken him around the country as he offered consultation in this cutting-edge industry. When not traveling, he taught classes at church to adults who were exploring faith, and his nonjudgmental and lighthearted manner drew many closer to the Lord. He also served for many years as an elder, and his endearing ways made him approachable to all.
But then, there was the forgetfulness.
"I'm going to say three things," the doctor told Bob. "Red. Sunshine. New York." They went on chatting for a short time. I repeated those three words over and over in my mind. "Okay, Bob," the doctor asked, "what were those three words I told you a few minutes ago?"
I was ready with the answer. But when I glanced at Bob, I saw him looking blankly — first at the doctor, and then at me.
After an awkward moment, the doctor moved on to some other cognitive tests. Bob failed each one.
"It appears to be a classic case of Alzheimer's disease." I heard the doctor's words, but they seemed to be echoing from a deep tunnel. Bob seemingly heard nothing, still displaying his warm, engaging smile. God's mercy, I thought.
Alzheimer's disease is an ugly, tragic disease. At this point, there is no cure. Best estimates are that a new case of Alzheimer's is diagnosed in America about every seventy seconds. It is not a normal part of aging.
Alzheimer's disease (AD) is a progressive, degenerative disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes. AD is the most common cause of dementia, or loss of intellectual function, among people aged 65 and older.
As the doctor spoke, my heart raced. Yet, at the same time, I felt an unusual calm come over me. I met with the doctor while Bob sat with our daughters in the waiting room. "What can I expect? What's the progression of the disease? What kind of a time line are we talking about?"
"I just can't say. I can give you general answers, but each person is so different, there are no definitive answers." A response that my type A personality didn't want to hear.
The doctor had a question for me: "How are you going to handle all of this?"
There I sat, a follower of Christ, somehow trying to balance the reality of all the pain Alzheimer's disease would inflict on us with the hope of God's care and eternal life in heaven. Without thinking, I responded, "I guess I'm going to live on the other side of eternity." I would do my best to focus on the eternal, to trust the One who held eternity in His hands, the One who had gone ahead to prepare a place for us and would come back to take us to be with Him (John 14:3).
I had no idea how many times those words would pierce my heart and remind me where my focus had to be. When you are in the pit of caring for someone with Alzheimer's, it is a daily challenge to look beyond the pain to the hope of eternity.
We walked out of the hospital different people than when we had walked in.
Bob was fine — just another doctor's appointment. "I told you I was fine," he laughed.
But I wasn't fine. A shroud of gray, a deep fog, seemed to be rolling toward me. Slowly, it marked its path and began enveloping me. Our daughters were quiet. As we walked to the parking garage, cars whizzed by us and an ambulance careened toward the hospital, but we seemed to be walking in an alternate universe. Bob was chattering away and the sun was shining, but sounds were muffled, and all I could see was gray.
That night, after Bob went to bed, I cried out to the Lord. I didn't ask "Why?" Instead I asked "How?"
Alzheimer's disease had become an unwelcome guest in our lives, and its presence would grow with each passing day. It felt as if we were jumping in the car and leaving on a road trip without even knowing our destination. How would I navigate this uncertain road before us? How would I make the right decisions for Bob? How could I protect his dignity and provide proper care?
That fog remained, my ever-present companion. I longed to wake up from this nightmare and resume my life as I knew and loved it.
As I sobbed, it seemed as if God heard me and brought Abraham to my mind and heart.
The Lord had said to Abram, "Go from your country, your people and your father's household to the land I will show you." ... So Abram went, as the Lord had told him.
GENESIS 12:1, 4
The Lord clearly told Abraham that He was sending him away from all that was familiar and comfortable. Abraham would leave the land, the people, and the family that he knew and loved. He would go to a place he knew nothing about, to people he didn't know. And, other than his immediate family, all Abraham would have to rely on was God.
I could certainly relate. Just that afternoon, I had been told that I would embark on a journey that I knew nothing about, would travel a road that was very uncertain, and would most likely have my heart broken on a daily basis.
A GOOD WORD
Many years before, when Bob and I were going through a crisis, a friend had shared, "There is no chaos in heaven about this." God was not then, nor is He now, sitting in heaven scratching His head, asking, "How did I miss this?" For this new crisis as for that earlier one, there was no chaos in heaven.
He promised me in His Word:
I shouldn't fear because He is with me (Isaiah 41:10).
He will never leave me or forsake me (Hebrews 13:5).
He knew that I was scared — that I was discouraged: "Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go" (Joshua 1:9).
As I thought about these verses, it became clear that I had to choose, on a daily basis, where to place my trust. Would I travel this uncertain road with the One who created the universe, who created me (and Bob), who knows the future because He has already been there? Or would I creep along in the dark, hoping to do the right thing and take the correct turns?
My decision was soon made. There was no choice.
If the shadow of Alzheimer's has turned your world upside down, please remember that the light of God's presence and care will never dim.
The next six months leading to my retirement were exceptionally difficult. I scrambled to find people who would "visit" with Bob for long periods of time so I could work. He had suddenly become confused — not totally, but enough that I didn't dare leave him at home alone.
I was blessed with a very understanding supervisor who assured me that I could work from home as needed. But the demands of an active ministry were exhausting. Preparing a Bible-study lecture each week became more draining than energizing. And having my physical body in one place while my mind and heart were in another was bankrupting my soul.
Finally, the big day arrived: I exited the office and my exciting professional life ... to begin my new career as a fulltime caregiver.
And so our journey began, one fog-filled step at a time, with no knowledge of what each day would bring.
Four years passed between the day of diagnosis and Bob's death. There were days and nights — moments when I wanted to just pack it all up. Would I have chosen this path for my life? Of course not. But would I have passed up the lessons that I learned (and am still learning), the love and help from family and friends, and the deep growth in me? Absolutely not!
A doctor friend wrote words that I carried in my heart throughout our journey:
There's a period of time between ... diagnosis and the moment when a life ends, and that entire period of time contains life. Sometimes this time is months, sometimes it's years, sometimes it's weeks. Far too often we ... are so distracted by the perceived inevitability of death that the life contained therein passes by, and sometimes we forget to live it.
In the reality of our sad, uncertain journey ahead, I decided that I would do my best to savor and celebrate the life that Bob and I would have together — in spite of, and in the presence of, Alzheimer's disease. Don't let the diagnosis and your circumstances crush you. The shadow will always be there, but there are moments of joy and memories still to be made. Look for ways to savor and celebrate!
There would be no move to a condo. We were moving to "Disney World" — the Alzheimer's world of fantasy and forgotten memories in which Bob would find comfort, and where I would need to find some form of peace. In a way, "Disney World" became my slogan, a daily reminder that my life, as I had planned it, had come to an abrupt halt. Bob believed he was fine, so would I spend the time we had together correcting Bob's "reality" or going along with it?
The choice to go along with it, to "live in Disney World," proved to be a good one for both of us. I would do the season well (as far as it depended on me), trust- ing the One who would (and did) always strengthen and lead me.
This is the book I never wanted to write. I had a plethora of book ideas in my head and heart for many years. Somehow, the ideas never found their way to a computer. If you are reading this book as a caregiver to a loved one with the disease, if you know someone who is a caregiver or has been diagnosed, or if you have been touched in some way by the damage done by Alzheimer's, I am writing to you.
From diagnosis to my husband's death, I walked a lonely and isolated road, far different from the life I had enjoyed. Throughout our journey, though, there were people who chose to walk with us. There was also the continual assurance of God's presence and faithfulness, along with little illuminations or discoveries that would help to make this journey easier. My hope for Lingering Light is that it will offer you some light for the next step or two, that you will know you are part of a huge chorus of brothers and sisters who are on this journey, and that my story will give you strength and brighten your day.
As I began to write, I realized that my story is just that, my story. In the sidebars throughout this book, you will read snippets of experiences from what I call traveling companions. Some of these are people I know personally, others are friends of friends. Each was eager to share her story with me.
"Traveling Light" sections are nuggets of truth that I gathered throughout my journey. I learned that I had to focus on my husband and his needs, but also, I needed to care for myself. Caregivers can't be weighed down by unnecessary burdens or overly busy schedules. You can tuck these nuggets into your heart and ponder them in a spare moment. They are meant to help you focus and prepare for another step in your journey.
I read short devotionals throughout Bob's illness, found lots of quotations (I love quotes) that encouraged me and gave me insight, and loved reading prayers that spoke to the struggle I was experiencing. I share them with you in the hope that they will encourage you, lighten your burden, and brighten your day, as they did for me.
My journey now is a new one — learning to live as a single person. It is a challenging journey. But I believe with all my heart that nothing in life is wasted, and I pray that you will find hope in these pages, that you will see your loved one with new eyes, and that you will find strength for the days ahead.
Write in this book. Share your heart. Compose your own prayer. God is listening, and His light is lingering.
A dementia diagnosis starts you on an unexpected and unknown trajectory. But "that entire period of time contains life." Plan for a demanding trip, but leave time to savor the journey. Trust the One who knows the way.
A Prayer to Guide You
O God, our heavenly Father, whose glory fills the whole creation, and whose presence we find wherever we go: Preserve those who travel; surround them with your loving care; protect them from every danger; and bring them in safety to their journey's end; through Jesus Christ our Lord. Amen.
THE BOOK OF COMMON PRAYER
A NOTE TO CHURCHES
Most of my professional career was in full-time ministry. For almost twenty-five years, I served as pastor of women at Grace Chapel in Lexington, Massachusetts. Throughout those many years, I have seen how the power of God and the people of God make a difference. People have invited me into their deep hurts and their delightful joys. Exploring the Word of God has illuminated the way for many groping in the dark. And when the Word prompts people to care for others, a beautiful thing happens. But I have also seen the human side of church people who, over time, move away from those dealing with a lengthy illness.
I have always believed that the local church is the hope of the world. Hope is what a hurting world hungers for.
It's what those struggling with and caring for someone with Alzheimer's disease need. Hope is oxygen for the soul. In the pages of this book, I have shared my hurting soul, which was empty at times. I have also shared how many came alongside me (and Bob), offering care and hope. And yet, this type of response is not common in most church families.
"The churches have failed their people," says ethicist and expert on aging, Stephen Sapp. "Specifically in the area of support for persons with Alzheimer's and their caregivers."
While there is not yet a cure for Alzheimer's disease, and death is always the prognosis, the church can and should lead the way to offer care and support during the Alzheimer's season.
The estimated number of Americans with Alzheimer's disease and other dementias has risen to 5.7 million, from 5.5 million in 2017, according to a report released today by the Alzheimer's Association.
That's an increase of roughly 3.6 percent and largely reflects the aging of the boomer generation.
By 2025, the 2018 Alzheimer's Disease Facts and Figures report projects, 7.1 million Americans aged 65 and older will have Alzheimer's, and by 2050, some 13.8 million.
These numbers speak for themselves: Alzheimer's is "among us," and every church will be affected. The church is in a unique position to reach out to Alzheimer's families with the love of Christ and a helping hand. The seven suggestions that follow were birthed out of my personal experience of "It would be so wonderful if ..." Feel free to adapt these ideas to the size, needs, and resources of your church.(Continues…)
Excerpted from "In The Lingering Light"
Copyright © 2019 Cynthia Fantasia.
Excerpted by permission of NavPress.
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
Chapter 1 Beginning the Journey 1
Chapter 2 Asking for Directions 13
Chapter 3 Night 23
Chapter 4 Traveling Essentials 35
Chapter 5 Homesick! 49
Chapter 6 Sustenance along the Way 61
Chapter 7 Storm Clouds Gather 71
Chapter 8 It Takes a Village 83
Chapter 9 Two Roads Diverge 97
Chapter 10 Arriving at the Destination 109
Chapter 11 Reflections 121
A Note to Churches 145
Recommended Resources 153
What People are Saying About This
In the Lingering Light is one of those books everyone should have in their toolbox. At some point, we all will deal with Alzheimer’s or one of the many forms of dementia that afflict our human frames. Having a wonderful guide who has walked the journey is a precious gift. Cynthia Fantasia is just such a guide. She’s a naturally gifted communicator who speaks from personal experience and gently leads us through the process of saying goodbye to someone we love while they still live.
Alzheimer’s and other forms of dementia are expected to triple in the next thirty years. While prevention and recovery strategies can help those afflicted at various stages, who cares for the caregivers? This book will help any caregiver navigate their new normal so that everyone involved in the caregiving process feels equipped, nurtured, and up for the task. Highly recommended.
In the Lingering Light is a helpful read for anyone called to walk a difficult path. Cynthia Fantasia’s tender and honest journey with God ministers grace and truth for life’s most challenging times.
You are in for an insightful experience. Cynthia Fantasia describes what it is like to walk through so much pain and loss, yetat the same timefind the lingering light of God’s presence.
I must admit that I was reluctant to read In the Lingering Light: Courage and Hope for the Alzheimer’s Caregiver. Why read a book I hope I never need? I am very thankful, though, that I overcame my hesitancy and met Cynthia Fantasiaand her husband, Boband accompanied her on her journey through this devastating disease. I was immediately drawn into her story and was challenged by her transparency and faith. While her insights and lessons are an indispensable resource for those who must walk this difficult path, her words encourage and equip the rest of us to support and care for those who are caregivers. Thank you, Cynthia, for your gift, not only to the Alzheimer’s world but also to the body of Christ.
There’s nothing easy about caring for a loved one with Alzheimer’s disease, but Cynthia Fantasia demonstrates that you can do more than just get by. God longs to sustain you with grace and faith. Readers will find hope and encouragement within these pages.