He lost an older brother recently, along with a close friend, two mentor-colleagues, and his wife of 58 years, who for the past decade lived with an especially disturbing form of dementia.
“Treasured voices have been silenced and the places they occupied have become a dark void,” writes Rev. Dr. Kenneth Carder in a recent blog post. “Added to this void is the isolation of a global pandemic. The wait for release from imposed aloneness … We don't know when it will end. When it does end, life will be different; but the shape of that difference remains unknown.”
He’s endured a long season of “silent and dark places,” says this Professor Emeritus at Duke Divinity School and retired bishop of the United Methodist Church. After hearing this, I wondered how he’s come through it all. I wondered how he would describe himself today versus, say, fifteen years ago. How would he describe himself now as a pastor? As a professor? As a husband and father? As a friend?
But I get ahead of myself.
Ken and his wife Linda were in their late sixties in 2009 when she was diagnosed with ‘frontotemporal’ dementia, a condition that can elicit a variety of disturbing behaviors. The diagnosis caused him to resign his full professorship at Duke to become a full-time caregiver, and to move from Durham to Columbia, SC, to be near their daughters.
Linda and Ken at their daughter’s shop
“Linda’s behaviors and personality changed ... Frustration, anger, compulsiveness, irritation, restlessness, combativeness, and inner turmoil increased as time passed,” Ken writes in a recently published book. (More on his book later.) “Grief became a relentless companion as losses multiplied … Roles changed. Our daughters became mothers to their mother. I often am more of a parent than a spouse.”
Such abrupt changes surely ring familiar to anyone having to care for a loved one with some form of dementia. (They echo deep in my memory. My spirited wife Martha was diagnosed in 1997 with early onset Alzheimer’s. She’d just turned 50, I was 52, and our three children were still in high school and college.)
Ken and his daughters Sheri (now 53) and Sandra (50) started seeing changes in Linda’s behavior a couple of years before her diagnosis. “My daughters noticed before me.” Linda had always been an introvert, he says, “but it was becoming more pronounced. And she was becoming less meticulous with our books and finances; there were more errors.”
Before joining Duke’s seminary staff in 2004, Ken served as a Methodist bishop for twelve years in the Nashville area and in Mississippi. Prior to that he’d earned a Doctor of Divinity from Vanderbilt University’s Divinity School and served three decades or so in several churches.
Incongruously, this highly educated minister, bishop, and professor was his family’s first-generation high school graduate. Growing up in Appalachia outside Johnson City, TN, Ken’s parents did not get past the seventh grade, and his older siblings the ninth grade. “We were the poorest people in the neighborhood.” Feeling marginalized, a young Ken “went through high school with none of my classmates knowing where I lived. I felt a disconnect between my background of poverty and my accomplishments in school.”
Ultimately, though, he came to understand that his background was a strength rather than an embarrassment. “Mom would often apologize that we had to grow up this way, but I let her know that I gained traits and insights I wouldn’t have otherwise. I have a strong work ethic because of my father, who worked harder than anyone I’ve met. And my grandfather, although he couldn’t read or write, was the smartest person I’ve known, certainly the wisest.”
“I grew up with a sense of compassion for the little guy, a sense of solidarity with people on the margins.” As a church pastor, for example, he developed a prison ministry.
Yet it was only after decades in the ministry that he realized “no one is more marginalized than persons with cognitive impairment issues. That’s what caring for Linda taught me.”
Upon hearing her diagnosis, Linda’s first reaction was: “I don’t want to tell anyone!” But she soon agreed to tell their daughters, Ken says, because they were aware of their mother’s appointment. He also felt the need to share with a confidant but was concerned “that I may be betraying Linda.”
(Interestingly, Linda’s reaction was also my wife’s, as I suspect it’s that of many others who hear such discouraging news.)
“Linda began to withdraw as her confidence eroded; she was afraid to interact with others.” Over time, Linda became “paranoid,” according to Ken. “She saw me as out to hurt her.” This wore on him as he turned more irritable and lost weight. “My daughters became concerned that they might lose me, too, so they urged me to move their mother into a memory-care facility.”
Which he did about five years after her diagnosis. But that only lasted 18 months. “Those months in memory-care were the hardest of all on Linda. And on me. I visited Linda several times a day, yet she was never comfortable and lost a lot of weight. It became so difficult that she was approved for hospice care, given no more than 12 months to live.” Ken subsequently brought her back home for round-the-clock professional care.
Mother’s Day 2014 with daughters Sheri (to Ken’s right) and Sandra (to Linda’s left) and their families
“Linda’s last three years were much better with this excellent home care, as was I. We were most fortunate that I could afford this kind of care; I know a lot of people cannot.” Linda died October 3, 2019.
Ken and Linda have been “witnesses to us from the wilderness,” states the foreword to Ken’s book, which is titled Ministry with the Forgotten: Dementia through a Spiritual Lens. In that foreword, Dr. Warren Kinghorn of the Duke University Medical Center frames the stigma and other issues surrounding dementia this way:
“Modern culture and much of modern Christianity lead us to think that our personhood is constituted by our ability to reason, to act, and to produce. But from the wilderness, we learn that beyond anything we can think, do, or produce, we are known and loved by God. We are held in God’s memory even when our own fails us.”
“Modern culture and much of modern Christianity lead us to think that dependence and vulnerability are risks to be avoided at all costs. But from the wilderness, we learn that dependence and vulnerability are the core of what it means to be human.”
“(This book) is a testimony from the wilderness … about what it means for love to endure, when all else fails.”
It is out of this wilderness that Ken seeks to describe his transformation and that of his family. He does so through his blog Shifting Margins, his book, classes, seminars, and interviews such as this one. “Being an exile in the wilderness speaks to the unknowns and uncertainties of what lies ahead. Also to liberation. But with dementia, you’re not sure what the ‘promised land’ looks like. What do you pray for? My constant prayer was for peace for Linda and for me. Her ultimate peace was death.”
Carlen: This wilderness that you describe, Ken, seems to echo with much of what we’ve all been through the past couple of months with this global pandemic. The shock of it, the isolation, the loneliness, the anxiety. It certainly resonates with our family’s 17-year odyssey. What can those of us living through this pandemic learn from your decade’s experience of living with dementia?
Ken: A few thoughts come to mind. One of the first things I began to develop was a sense of solitude out of the loneliness I felt. In doing so, I became friendlier with myself. I also tried to nurture and deepen my relationships, particularly with our daughters and their families as well as with friends. There is truth and beauty in the wilderness in which we find ourselves...I needed to be attentive. It’s in these we often find God.
Finally, I continue to learn to live in my present reality, to live with a sense of hope rather than mere optimism. When we come out of this, we will be different. How, we can’t predict. As a way to sum up: When in doubt, love.
Me: Back to the reality of your life a decade ago, you say that Linda withdrew and went into denial after her diagnosis. What was your reaction?
Ken: I had a deep sense of sadness. And I feared for Linda and our future. But I also felt some relief because I understood better what we were dealing with. And this strange sense of challenge arose quickly: ‘How do I approach this in a responsible way? How do I live out my faith?’
Me: Your faith obviously led you into your career, or calling. How did you live out your beliefs through this decade of dementia and through the “silent and dark places” you describe?
Ken: I always preached acceptance of others. Yet now I feel I can practice it. Even accepting more difficult people; there’s always a back story to their difficulty. I preached grace, but I’m experiencing it more now. I’ve slowed down considerably, and not just because I’m older. I’m more comfortable with ‘being’ rather than ‘doing’. No longer do I feel as much a need to do for my family and friends and acquaintances; I now prefer to be with them.
My primary vocation the past decade was that of providing care for Linda. That care consisted of meeting basic needs with kindness, gentleness, and sensitivity to her dignity. Being present with her—assuring her that she is valued and loved—was at the heart of my daily activity.
Finally, I’ve learned that I can control very little. Still learning, in fact.
Me: Ken, why do you say that no one is more marginalized than those suffering with cognitive impairment?
Ken: I haven’t always understood that. As a pastor, I had dealt with congregants and friends living with some form of dementia, but they were not at the center of my pastoral care. I didn’t really know how to relate to them. As many pastors still don’t today.
The past four years I’ve volunteered as a pastor at the community where I live (until the recent imposition of visiting restrictions), spending time with those in the memory-care facility. Just being present with many. And the staff tells me that while maybe half the families were visiting their loved ones, very few pastors ever visited their members residing there. Very few.
Me: So if someone like a pastor can’t even recognize their needs, how can you expect society in general to?
Ken: Yes. There seems to be a widespread assumption that people with dementia, especially those in an advanced stage, are void of spiritual needs, longings, or wishes. What are the spiritual needs of people with dementia? They are the same needs we all share. The need to give and receive love remains. Dignity remains a lifelong need of human beings. Every person, regardless of physical or mental capacities, longs for worth and dignity, for a sense of purpose and meaning.
Me: But what about those in an advanced stage? What possible sense of purpose can they experience if they are unconscious of such a need?
Ken: My experience with Linda and with others recently is that the drive for meaning is deeply embedded and transcends cognitive awareness. Fundamentally our purpose, whether we are well or incapacitated, is “to be” more than “to do”. As ones bearing the image of God, we are to be in relationship with God, with others, and with His creation.
Many don’t seem to understand that the presence of someone, a certain moment with them, the emotional experience of a visit by a friend, or pastor, or family member lingers long past that visit, whether a conversation occurred or not. I certainly didn’t understand this before.
Me: Are these some of the reasons why you chose to teach a pastoral care class at a nearby seminary?
Ken: Yes. And it’s out of this class’s conversations and curriculum, and my experience, that my book’s content arose.
My publisher wanted my book to be academic and for pastors and seminary students, which it is. But I’ve written it in a style for a broader audience—for those caring for loved ones with dementia who seek a spiritual direction through a crisis that can be so overwhelming.
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As a Methodist minister, Ken obviously wrote his book with Christian concepts and vocabulary. But after reading it, I’m impressed that persons of other religions or of no religion can translate his insights fairly easily into their own traditions or way of thinking. This is a book that can help almost anyone negotiate their treacherous path through dementia, whatever its form and symptoms.
Its pivotal chapter for me is titled “Dementia and the Meaning of Personhood.” In it, Ken relates a story that most any family living through dementia can identify with:
“‘She’s not the person she used to be,’ remarked the nurse practitioner after announcing that Linda had scored zero on (a state mental exam). I got the distinct impression that she didn’t consider Linda a person at all. She never looked at (Linda) or acknowledged that she was sitting across the table. A zero … apparently rendered Linda a nonperson.”
Such stigma was deep, strong, and widespread when my wife was diagnosed back in the “dark ages” of 1997. It still is today.
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On occasion, I give a book away. This is one of those occasions. In fact, Ken has graciously agreed to give a signed copy of Ministry with the Forgotten. If you’d like to put your name into the hat for this, here’s how:
Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, May 14, and Saturday, May 16, by 12:00 Midnight EDT. Indicate that you would like to be included in the drawing and put in the subject line: BOOK GIVEAWAY.
Someone will be selected at random from those entering. I’ll send you a congratulatory email on Monday, May 18. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random.
For more details, click Book Giveaway.
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One last question, Ken, before we let you go. Simply as possible, how would you describe yourself today?
“My core vocation now is to be in relationship with those I interact—my family, friends, people I meet. We’re all wayfarers…wayfarers on the way to God with God.”
Thank you for sharing your story and insights with us, Ken.
Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com
PS1 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.
PS2 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with this disease. My high-energy wife Martha was 50 when diagnosed; I was 52. Our children were still in high school and college. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.
PS3 My publisher, Paraclete Press, recently produced a webinar titled Restoring Yourself as a Caregiver: A Spiritual Perspective. It’s a conversation with two other of its authors and me. If you’d like to check it out, you can click here. The conversation starts at 4:00.
