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- Herausgeber: IVP
- Kategorie: Religion und Spiritualität
- Sprache: Englisch
- Veröffentlichungsjahr: 2017
How do you continue to find God as dementia pulls your loved one into the darkness?Nothing is simple for a person suffering from dementia, and for those they love. When ordinary tasks of communication, such as using a phone, become complex, then difficult, and then impossible, isolation becomes inevitable. Helping becomes excruciating.In these pages philosopher Douglas Groothuis offers a window into his experience of caring for his wife as a rare form of dementia ravages her once-brilliant mind and eliminates her once-stellar verbal acuity. Mixing personal narrative with spiritual insight, he captures moments of lament as well as philosophical and theological reflection. Brief interludes provide poignant pictures of life inside the Groothuis household, and we meet a parade of caregivers, including a very skilled companion dog. Losses for both Doug and Becky come daily, and his questions for God multiply as he navigates the descending darkness. Here is a frank exploration of how one continues to find God in the twilight.
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WALKING THROUGH TWILIGHT
A WIFE’S ILLNESS— A PHILOSOPHER’S LAMENT
FOREWORD BY NICHOLAS WOLTERSTORFF
Bitter-sweetAh, my dear angry Lord,Since thou dost love, yet strike;Cast down, yet help afford;Sure I will do the like.I will complain, yet praise;I will bewail, approve;And all my sour-sweet daysI will lament and love.
CONTENTS
Foreword
NICHOLAS WOLTERSTORFF
BECKY, THE WIFE OF THE AUTHOR of this volume, was extraordinarily gifted with words. The gift began to fail her. She was diagnosed as suffering from primary progressive aphasia, a form of dementia that has, as one of its primary signs of mental deterioration, the inability of the person to find words to say what she wants to say. Walking Through Twilight is the author’s lament for the wide and deep losses that this ravaging disease has wreaked in his life and that of his wife. He does not wallow in the horror of the disease, but neither does he gloss over it or look away. He does not flinch from the painful reality.
Walking Through Twilight is more, however, than an unfailingly honest lament over loss. Interspersed with Groothuis’s lament is a series of meditations, evoked by observing the nature and course of the disease, and his response and that of others, whose aim is to understand something of the hand of God in this valley of suffering and to discern how to live lovingly and faithfully in this shadowy place.
Groothuis is a philosopher and theologian, steeped in Scripture. So the meditations are, as one would expect, philosophical and theological in their overall character, and rich—incredibly rich—in their incorporation of passages from Scripture, especially from the wisdom literature of the Old Testament. But the meditations are never abstract. In each instance they are tied to the author’s observation of his wife’s suffering, and his response and that of others. The image that comes to mind is that of a cord on which beads are strung—beads of reflection strung on a cord of lament over loss.
And what an astute observer Groothuis is! Soon after his wife’s diagnosis became known, he noticed that people began to speak differently to her. They would “raise their voice,” “lapse into sing-song and upward inflection, and refer to her in terms they would never use for any right-minded adult—terms like hon or dear or other inapt terms of awkward endearment.” In short, they would speak to her condescendingly. That observation leads Groothuis into a lovely meditation on what is wrong with speaking condescendingly to such a person—or, indeed, to any person—and how to speak to such a person instead.
Another example: he notes that he still laughs and wonders whether, in this sea of loss, it’s appropriate for him to laugh. And he observes that his wife also still laughs, though what she laughs at has changed significantly. She no longer laughs at jokes; she doesn’t get the point. The meditation closes with these poignant words: “Proverbs lauds the wise and hard-working woman. ‘She can laugh at the days to come’ (Proverbs 31:25). Becky cannot laugh at the days to come, but in these days—or at least some of them—laughter will come to both of us.”
One more example: the author found himself getting intensely angry at the way in which some members of the medical profession treated Becky, especially at the way in which she was treated in a “behavioral health unit”—and at the way he was treated. This leads him into a probing meditation on the role of anger in life. He also finds himself getting angry with God. And this leads him to reflect on whether it is right, sometimes, for a Christian to be angry with God. Does anger at God have a place in the Christian life?
These examples illustrate the point that the author does not stop with lament over loss but over and again looks ahead by reflecting on how to live well amidst this loss. The title and subtitle say it all: a philosopher’s lament over his wife’s illness intertwined with reflections on how to walk through this twilight. The examples also illustrate another distinctive feature of the book: the specific and the general are seamlessly interwoven. Observation of the specific evokes reflection, reflection illuminates the specific.
Introduction
WALKINGTHROUGH TWILIGHT
Hope deferred makes the heart sick,but a longing fulfilled is a tree of life.
SINCE I WAS RELEASED from graduate school, no one has told me what to write. After my doctoral committee accepted my dissertation in 1993, I have written books, articles, editorials, reviews, and letters to the editor. Perhaps I am spoiled, but I work hard at my writing. Writing for me is not therapeutic. I have never written merely to make money or express myself (a common curse inflicted by egotists on readers). I have been reluctant to write a memoir. The task of extending the knowledge of God, defending “the faith that was once for all entrusted to God’s holy people” (Jude 3), and applying the Christian worldview to the whole of life has been my passion, however flawed my efforts. But perhaps I can combine memoir, lament, and philosophical reflection.
Most of my work responds to attacks on Christianity or to corruptions within it. Becky was there near the beginning. We met in 1983 when we worked for a campus ministry. As we got to know each other and fell in love, she encouraged two things that changed my life for the better. First, she convinced me that the time was over for research and that I should begin writing my first book. Second, she offered to edit the chapters as I went along. That book, Unmasking the New Age, is my bestselling book. We were and are united in our sense of calling. Becky edited all my books, except Philosophy in Seven Sentences and this offering. That is one of my reasons for lament.
This book is different from all my others. I did not want to write it, but it wanted to be written. Publishers and friends urged me to write it, but I tried to turn them down. However, I found that not writing the book would be harder than writing it. Unlike my other books, it is not strictly linear or expositional. Unlike Christian Apologetics, for example, it is not one long argument for Christianity. Walking Through Twilight is only autobiographical for the sake of being pastoral, philosophical, and theological. Expressing myself is not the point, but I need to recount my experiences—some of them raw, many of them tragic—to offer courage, hope, and meaning amidst the distinctive suffering of dementia care. But how much should I write about myself? A pastor and long-time friend recently told me that my previous book Philosophy in Seven Sentences was his favorite of all my books. (I did not ask how many of them he had read.) His reason surprised me. He said it was because I revealed more of myself in that book. I did, but this book enters new territory for me as a writer. It is a memoir, heaven help us. But as I enter my seventh decade on earth and my fifth decade as a Christian, I hope my reflections are worth beholding. I agree with Bertrand Russell that “a long retrospect gives weight and substance to experiences.”1
I call this book Walking Through Twilight. I chose twilight instead of darkness since I wrote this book while Becky is at home and I can still communicate with her. When this changes, it will be darkness, and I won’t write of that. However, Becky and I know that the darkness of the crucifixion is followed by the light of the resurrection. She will be raised immortal in God’s good time. Dawn follows darkness, but this comes at the price of agonized waiting. This book is a witness to that waiting.
A memoir contains autobiography, but is not an autobiography proper. Memoir recounts part of one’s life that the author takes to be worth sharing with the wider world. It is a difficult genre to do well. And this is my first attempt. At least I will give you many biblical passages and quotations from many wise authors.
Oddly, a memoir should not be self-centered. Rather, the self should be centered in a place fit for noting and conveying needful truth to others. Since we are made in God’s image and likeness, and since Christians are taught and directed by the Holy Spirit (at least when we are not quenching or grieving him), our lives can be worth a memoir. I hope my reflections on the dark drama of dementia will set up a few guideposts and illuminate a few dark places. We can walk through twilight and into the night with courage, and hope for a new dawn at the far side of suffering.
While reflecting on two paintings of Christ, the poet W. H. Auden wrote that suffering is often hidden from a world not suffering at that moment.2 While human and beast go about their business, some of us are suffering the “dreadful martyrdom” of being a dementia caregiver. The pedestrian and the agonized soul who walk side by side; perhaps one can learn from the other.
Of course, dementia gets worse, but this memoir is not written as a strict chronology. Rather, I explore themes related to episodes in the devolution of Becky. Writing of “the progression of her disease” is too tame and bloodless. The phrase hints at some manner of progress. But there is no progress, no advance. I must let the words fall and root where they should.
Some of my chapters, such as “Learning to Lament,” are longer and more philosophical than the rest. I encourage readers to press on through those chapters, nevertheless, since they give a richer meaning to the others and explain the reason for the hope I have (1 Peter 3:15). My strategy concerning chapters is to give a taste of what my lament is and then to explain how we may cope with such laments. This is followed by more chapters explaining the vicissitudes and exigencies of Becky’s and my journey.
I often interrupt or augment my narrative with observations that, on occasion, become excurses. These are not rabbit trails but reflections on this darkening footpath. I am a philosopher, and it is philosophy that often saves me from malignant melancholy.
Becky gave me permission to write this book. I told her that writing it was helpful to me and might assist others going through similar ordeals. I put things in perspective by saying to her, “All your work as a writer, editor, and speaker came out of your strength. Now this book can encourage people through your weakness.” She weakly smiled and chuckled a bit, the way people do when they hear something insightful, but a bit ironic. Becky will not edit this book, nor will she read it, but she has authorized it, and I dedicate it to her.
One
RAGE IN A PSYCH WARD
How can we sing the songs of theLORD while in a foreign land?
THE YEAR OF 2014 SAW MY WIFE spend five weeks in the hospital to diagnose mental problems. When she came back, we had to revise how we lived and how we saw the future. It was miserable. It was the worst year of my life, as it was for Becky. I learned a raft of things I never wanted to know. This chapter recounts learning to adjust to having my wife in a psychiatric unit.
Before Becky went into the hospital, she and I saw a neurologist for one year who was sure Becky did not have dementia. He was wrong, because he was only thinking of Alzheimer’s disease. But Becky has a rare form of dementia, called primary progressive aphasia (PPA). Every time I say those three words, it hurts.
My year of learning began with the protocols of a psychiatric unit. After Becky and I and a friend spent twelve hours in the emergency room, the psychiatrist finally arrived and put Becky on a seventy-two-hour hold in a behavioral health unit in a hospital across town. I saw her hauled out on a stretcher with almost no belongings. I had never seen her more pathetic, but she did not complain, probably because she was not aware of her surroundings. When I questioned the men about what possessions she should have, one said, “She won’t need many of her belongings there.” I had no idea what he meant until I entered the unit the next day.
I left the hospital with my loyal friend, drove home, greeted my upset and lonely dog, and then listened to Pink Floyd’s Dark Side of the Moon. My dog, Sunny, lay not far from me. Somehow this was what I had to do. This renowned classic rock recording reminds me of Ecclesiastes, but without God. That was how I felt.
The next day, after many calls to doctors, my friend Sarah and I visited Becky in a behavioral health unit across town. Unexpectedly, we had to pass through a security check and leave keys and wallets outside before the door was unlocked to let us in. What kind of place was this? Entering the patient area, I saw Becky wandering around in tears. No one was attending to her. We locked eyes and embraced. She pointed me to her room and we went in to talk. A nurse quickly scolded us, saying that I could not share the room (even with the door open) with my wife of thirty years. I was shocked and angry, but complied. I drew up several chairs in the open area.
My friend and I sat down to talk to Becky in this most inhospitable hospital. We were disturbed by a young man talking loudly on a pay phone. I asked him to not speak so loudly. He rebuked me. I yelled at him to shut up. The anger and confusion within me was turning into rage second by second. I wanted to kill him, so great was my rage. Of this, I am ashamed. A nurse pointed her finger at me and shouted at me to shut up. My friend and I were banished to a meeting room outside the open area.
I was so angry and irrational that I began to blame my friend for Becky’s psychiatric incarceration. We were kicked out. It was entirely my fault. I later realized that I might have been arrested had I not left when commanded to. That would look good for my school, “Christian Philosopher Arrested for Causing a Riot at a Psychiatric Ward.” It was a near miss.
This episode and several others began to show me the futility of rage. Paul was right to warn that rage is not from the Holy Spirit but of our fallen human nature. He places rage in unholy company:
The acts of the flesh are obvious: sexual immorality, impurity and debauchery; idolatry and witchcraft; hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions and envy; drunkenness, orgies, and the like. I warn you, as I did before, that those who live like this will not inherit the kingdom of God. (Galatians 5:19-21)
In “How the Soul Discharges Its Emotions Against False Objects When Lacking Real Ones,” the essayist Montaigne instructed me that the actions of rage—stomping, screaming, and throwing things—do nothing to rectify the enraging condition. We merely “beat at the air” or “beat our breasts.”1 When applied, this wisdom helps contain rage and cuts off the escalation into destructive actions. At bottom, though, advice, no matter how sagacious, cannot substitute for the work of the Holy Spirit. Opposed to the “acts of the flesh” are “the fruit of the Spirit.”
But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law. Those who belong to Christ Jesus have crucified the flesh with its passions and desires. (Galatians 5:22-24)
I returned to the hospital the next morning and apologized to everyone I could. Becky was peacefully eating breakfast next to a kind woman. She was soon transferred to another behavioral health unit. There too I found myself confused and sometimes infuriated by their rules and the authority they had over my own wife and me. I shouted at innocent people who were only following rules.
Whenever I left Senior Behavioral Health, the doors locked behind me. Some try to escape. I don’t blame them.
After several visits and more apologies, I learned the protocol of this sad but necessary place. Over five weeks I visited Becky nearly every day. The drive to and from was about sixty miles, so visiting, while still teaching, was taxing. God met me in these visits. I had been re-reading Viktor Frankl’s classic study of suffering and meaning, Man’s Search for Meaning. Human value can be affirmed in the thick of searing suffering, as he found in Hitler’s prison camps. But we have to change ourselves. “When we are no longer able to change a situation . . . we are challenged to change ourselves.”2
I could not magically free Becky—or any of the other sad patients—from this necessary but sorrowful place. However, I could smelt meaning out of suffering. I could not deny the suffering of confusion, fear, and loneliness, but I could live within it without dying from it. Again, Frankl says,
We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.3
Becky was my first concern in behavioral health. I would usually visit during meals, and encouraged Becky to eat. She ate little (and emerged from the hospital five weeks later nearly emaciated). At dinner, Becky would often fall silent and hang her head. I would try to comfort her, but also was alert to the predicaments of the other patients. I would greet them, talk, offer to pray for them, and in some cases pray with them.
I became familiar with some of the patients, especially those who stayed more than a few days. There was Cindy, always shaking and paranoid. She asked me, “If I pray out loud, will Satan hear my prayer and hurt me?” I assured her that God was greater than Satan and that she should not worry about that. She was reassured.
There was Jack, a tall, friendly man, who was depressed. I heard him say, “I love to sleep. I would sleep my life away if I could”—a classic symptom of intense depression. I have tasted of it, but have not been poisoned. Jack was also a hypochondriac, pestering the nurses to check his symptoms. There was so much to pray for.
Another woman was, I think, schizophrenic. I started to talk with her, but she quickly grew angry and had a verbal tantrum about God knows what. Then this poor soul looked at my wife. Their eyes met and locked, and they both smiled wordlessly. Strange love visited the psychiatric ward through my wife. This was common, I was told.
Becky, often wordless and ever confused, ignited joy in distressed people. Once when I was visiting for dinner, a woman introduced my wife as “our movie star,” referring to her good looks. There is love in the ruins, if one has eyes to see.
When my friend and I picked up Becky from behavioral health, a nurse and several others cried over her departure. She could not sign the release papers, so I did. I have learned to take over many of Becky’s responsibilities. I am her advocate and mediator. These are Christlike roles, but I am far from sinless.
Two
THE YEAR OF LEARNING THINGS I DID NOT WANT TO KNOW
WHEN WE CAME INTO OUR HOME from the five-week hospital stay, our dog, Sunny, literally leaped for joy. He had missed Becky badly. Even now, two-and-a-half years later, he still runs to Becky when we have been away. He gets around to me later. Sunny’s joy was the happiest thing about returning. What followed was not.
We soon discovered that home would not be our old home; it often seemed more like a prison. After a few weeks of agonized futility, I decided we needed a live-in caregiver.
I learned how to accommodate another person living in our home to help Becky. God provided someone quickly. But we did not adjust quickly. Neither did our caregiver, despite her experience in serving sick people. Becky was no longer the woman of the house (to use an antiquated phrase). She had to cede some control to a stranger. I was the reluctant referee in these squabbles; no one else could be. I got to know Lana and tried to sympathize with her disappointing life. We got on for about nine months, and then she burned out.
Our next caregiver was mellow, quiet, and less high-strung than our previous helper. But she only stayed about six months. She left because she was preparing for marriage. Further, she could not provide the level of care Becky needed. In one sense, no one could.
Through this, I have become an employer. Given my gift of disorganization, this is a daunting but necessary area of my learning. Much of my life after Becky’s diagnosis has been daunting but necessary. I am pressed into service by exasperating conditions beyond my control. Most of us are, eventually.
After her hospitalization, I was told by a psychiatrist to become her guardian and conservator. As guardian, I can make all the legal and medical decisions. As conservator, I am in control of her finances. Conservatorship is an ordeal involving many calls, emails, and trips to my lawyer. The lawyer’s work is not pro bono. Nor am I their best client. I learned how to set up guardianship and conservatorship for my wife, which gives me legal and financial authority. Becky used to attend to all our financial concerns. She did so with precision and promptness. I simply gave all of it over to her—checks, bills, and notices—with perfect confidence. Then, even before her diagnosis, she lost her ability to add up sums. She gave it all back to me, the organizationally adolescent one. (If God ever gave me the gift of administration, it would be akin to him raising the dead.)
I learned what it felt like to stand in front of a judge with our lawyer and my wife to hear him say, in effect, that I was now her parent. On the way home from this ordeal, Becky melodramatically said, “You own me.” I don’t blame her. I had never used my role as a husband to contradict her wishes—well, I did a few times, in the first few years of marriage. Now she was my charge, and we both hated it. Our relationship would continue to change under the tyranny of her disease.
After Becky returned I tried to learn how to “play hurt” (in the sports sense) to a greater degree than ever. In the weeks and months after Becky’s hospitalization, I had to cancel some speaking engagements. One of my three classes was taken over by another professor. However, I debated an atheist in Boulder during the first week of Becky’s hospital stay during that time. I continued writing, which is my life’s calling. God has always empowered me to teach, preach, and write. I would sometimes walk into the classroom without adequate notes, feeling desperate and undone, yet still engage a class in my areas of expertise. This was a sprout of grace in a field of sorrow. I could soldier on—earthbound, not on eagles’ wings.
I learned depths of sorrow and distress I had never known before. Years ago, a colleague spoke to me of his wife’s tribulation with cancer. She had said to him, “I did not know the human body could bear so much pain.” I never forgot that. Little did I know how much psychological agony a human soul could bear. Yet my suffering could not be compared with the suffering of Jesus Christ, my Savior. When he cried out, “My God, my God, why have you forsaken me?” he experienced suffering of the highest possible degree (Matthew 27:46). He was an innocent victim, “the Lamb of God, who takes away the sin of the world” (John 1:29). God was now making me an expert in suffering. I wish he had picked someone else. But as a philosopher I must ponder the meaning of suffering, as I am attempting to do in this little book, the one I never wanted to write.
I researched the possibility of long-term assistance for Becky. After my insurance provider told me they covered it, I found that my insurance did not cover it. Much of this crucible is not covered by anything, it seems. But I still know (in my better moments) that
Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the LORD, “He is my refuge and my fortress,
my God, in whom I trust.” (Psalm 91:1-2)
Becky memorized all of Psalm 91 when she went through an earlier crucible of an anomalous staph infection. She would recite it on the way to the infectious disease doctor. She can no longer recite this psalm from memory or memorize anything new. Yes, God has all of this trial covered, but this divine covering (for us) did not keep suffering at bay. No, this covering is a way through suffering, not a way to escape suffering.
I tried to learn how to verbally communicate with my once-brilliant wife in ways she could understand. Since she is declining, I have to attempt to relearn this often, and I often fail. I can complete some of her sentences, but not all. Eventually, there will be no sentences at all. That day may not be far away.
I learned how it feels to weep often and to cry unexpectedly, even in public. When my eyeglasses are smudged, and I take them off to look at them, I often find the marks of tears. I now behold much of the world through tears and am alert to the tears of others. I also cry inside without tears, because tears and the paroxysms that often accompany them get in the way of doing what I must do. God must count those uncried tears too. David, my brother in lament, wrote,
Record my misery;
list my tears on your scroll—
are they not in your record? (Psalm 56:8)
