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Table of Contents
Part I: Crisis
- Chapter 1: The Moment: When Calamity Strikes 13
- Chapter 2: Changing Roles: Who is Taking Care of Whom?31
Part II: Balancing Act
- Chapter 3: Communication: Speaking the Unspeakable 53
- Chapter 4: Together and Apart: Creating Balance 71
- Chapter 5: Active Coping: Taking Charge of Your Care and Yourself 85
- Chapter 6: Standing Together: The Circle of Community 107
- Chapter 7: Military Couples: Wounded Warriors Back Home 115
Part III: Regaining Equilibrium
- Chapter 8: Loss and Grief: Finding the Self 131
- Chapter 9: Hope and Resilience: Discovering Your Strength 149
- Chapter 10: Intimacy: To Touch or Not to Touch 167
- Chapter 11: The Practicalities: Making it Work 173
- Chapter 12: Words of Wisdom 185
When you fell in love, what were you thinking? Perhaps you weren’t thinking very much at all, because you were engulfed by feelings and dreams: by the soaring passions of romance and chemistry, by palpitating hearts and eager hands, by the promise of a joyful future with your loved one by your side. You and your partner may have pledged privately, or in front of witnesses, to love and honor each other “for better or for worse, in sickness and in health.” In all likelihood, however, neither of you gave much thought to the “for worse” or “in sickness” parts of that loving contract.
And who could blame you? It is our very disregard for what might go wrong that permits us to carry on normally in a world filled with hazards. Were we to acknowledge the frailty of life at every moment, we would either be enlightened or immobilized by fear. For most of us, it is our assumption of relative predictability, safety, and longevity that permits us to take pleasure in our daily lives. We move from day to day believing that the ground we tread on will not give way; that we will have two legs on which to continue walking; a sound mind to direct us; and enough breath to cover the distance.
“No One Gets Through this Life Alive”
However, things do not always go as we plan. A feisty grandmother we know once said, “No one gets through this life alive.” One day, amid the comforting chaos of careers, children, finances, groceries, extended family, new shoes, dental cleanings, and laundry, something might happen—or perhaps something has already happened— in your relationship. One of you may become sick, or receive a frightening diagnosis, or be injured. For some couples, catastrophic trauma arrives without warning. For others, what began as a headache, tiredness, difficulty breathing, a skin rash, confusion, or an unfamiliar lump can be the starting point for the furtive creep of chronic illness or pain.
For couples, illness is never a solo flight. When one partner is sick, both lives are dislocated. Whether the illness enters insidiously or announces itself with the sudden blast of a catastrophe, it fractures all of the couple’s familiar patterns and forces them to drill down to the bedrock of their relationship and decide where they stand. Some couples break apart; others stay together but assume profoundly different roles. Some despair; others find renewed commitment and meaning.
The ill person may suddenly be confronted with a sense of physical frailty, or perhaps mortality. The healthy partner may be forced to view the loved one in a different way, and may experience unfamiliar feelings of disbelief, sadness, and fear of the future. Changes are inevitable, and how couples respond to those changes depends on a universe of factors that will be explored in this book.
About this Book
While the topic of couples and illness is a difficult one, this book will not be depressing. The couples we interviewed spoke about loss, but they also described achieving levels of connectedness that would not have been possible within the normal routines of their pre-illness existence. And while some situations end with separation or the passing of the partner, others end with recovery, and many result in healing in ways that stretch far beyond the physical.
This is not a traditional self-help book. The situations encountered by couples living with illness don’t lend themselves to simple answers. While you will find practical advice and tips, our emphasis is on portraying the effect of illness on the couple relationship through stories and the guidance of experts. Our couples candidly described the impact of illness on their roles, their communication, their connections, and their disconnections. They spoke openly about what they experienced and, perhaps more importantly, about how they solved problems and moved through difficult moments. Our couples talked about many intimate topics, including sex, money, assisted suicide, family strife, and more.
The population of people over sixty-five years old is expected to double in the coming decades. They are expected to live longer and to suffer increasingly debilitating and chronic diseases. Baby boomers will swell the ranks of the elderly, and many will live beyond the age of eighty-three. A longer life, unfortunately, can also mean more years of potential illness. This affects not only the ill person and the partner, but also health care providers, friends, and extended family members. This book will provide those who work with couples and illness—doctors, nurses, rehabilitation specialists, hospice workers, psychotherapists, spiritual caregivers, and other health care professionals—with a deeper understanding of the couple’s experience of illness, along with more options for intervening in healing ways. If you are a friend or family member of a couple who is living with illness, it can be difficult to know how to relate to them and what to say. This book will prepare you to interact with the couple in ways that can be helpful for them and for you.
The world of couples living with illness is a cloistered one. The couple is isolated from support systems and unfamiliar with the new rules of engagement. New characters— doctors and other health care providers—enter and leave according to their own procedures and timetables. The couple is so immersed in an alien and frightening reality that they can’t see over the wall to learn how other couples, each one in its own cloister, cope with similar challenges. This book knocks down the walls and makes visible, to the couple and to the people who care for them, the hardships and the solutions, the heartaches and the hopes.
Lessons from Real-Life Stories and Experts
In this book, you will read real-life stories of couples who have faced and become transformed by illness. Many of them crashed into heartbreaking choices: together or apart? Despair or hope? Home care or institution? Each couple found their own way to bear the insufferable—whether in community or in silence, exploring or denying, working through their crisis together or separately. In addition, experts share their knowledge about the effects of illness on intimacy, communication, family dynamics, and emotional connections, as well as on such practicalities as finances, dealing with the medical system, long-term care, and financial planning.
In this confusing array of choices, there is only one truth: No single approach is right for every couple. Each couple responds to illness in a personal way. The choices couples make are informed by a convergence of unique influences: their past experiences with illness, their community and its social mores, personal values, emotional and psychological makeup, finances, the support resources available to them, the health care system they depend on, family legacies, and their life together as a couple. A young couple still in the rosy discovery stage of their relationship may process illness differently than an older couple whose relationship has already weathered many upheavals. Demographics alone can never determine who will sink and who will rally. In fact, one couple’s surrender may be equivalent to another’s greatest act of courage. By learning from the stories of our couples and hearing the advice of experts, you will see over the cloister wall that typically isolates couples living with illness, and you will find many insights that you can use to improve your own situation.
Why We Wrote this Book
As authors, each of us was drawn to this topic through our own experiences of devastating illness and its effect on our relationships. We were both disabled by our physical calamities and unsure of when—or if—we would ever recover. Our partners had complex choices to make about the nature of their commitment to us and the extent of their obligations as caretakers.
Each of us had to navigate the frightening territory of medical uncertainty, while mourning a traumatic blow to our relationships. We lived with pain, with the anguish of losing a relatively predictable future, with dependency on our partners, and with midnight aloneness. We discovered the depths of our own resilience, how much we were loved and could love, and how our quest for healing transformed our intimate relationships.
Each of us recovered, but not without years of hard work—repairing our bodies, reclaiming our identities as healthy women, and renewing our relationships. It became our mission to delve even deeper into the world of couples and illness, learn what we could from other travelers on this difficult path, and glean the advice of experts. We healed, and we want to express our gratitude by helping other couples faced with the trauma of illness or injury.
Many couples and surviving partners, generously and with courage, shared their stories with us. Their names and identifying data (including our own) have been disguised to protect their confidentiality. Many stories are composites that combine elements from several couples’ experiences. Experts also freely shared their knowledge and insights. The experts we interviewed included psychotherapists, doctors, nurses, spiritual leaders, researchers, and more. Unless otherwise noted, all expert comments came from our interviews. Their thoughts are quoted within the chapters and also presented in sections separated from the main text by rows of dots.
What We Learned
Illness and trauma are always unwanted and often tragic. However, through writing this book, we’ve learned that it is possible to find your deepest and most abiding strength in suffering. We learned that, under extraordinary circumstances, people can rise to the extraordinary; that illness can be a gateway and not an epilogue; and that, even in the absence of a cure, healing is possible. As Hippocrates, the father of medicine, counseled, “A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.”
We also learned that hearing the stories of others and the counsel of trusted experts makes illness more bearable. Too often, couples facing illness find themselves standing alone, isolated from friends and family who are equally unnerved by the situation, and alienated by a health care system that speaks a foreign language and is already overburdened and under-resourced. People facing illness or trauma and the practitioners who help them have very useful stories and advice for weathering upheavals and for making decisions about preserving communication, finding the best specialists, managing managed care systems, researching alternative approaches, and creating supportive communities.
How this Book Works
In this book, we explore many of the questions that couples face when illness strikes. What happens at the intersection of love and obligation? How much should we do for those we love? How do we balance our own needs with those of our partner? How do we negotiate changing roles? How do we talk about difficult topics like fear, mortality, sex, anger, and separation? How do we deal with health care systems and legal issues? Each chapter provides personal experiences and pragmatic recommendations from which you can extract the answers that apply to your own situation. If one of you is already sick, or if you are a friend or relative of the sick person, this book will be an essential guide. For those not yet in this position, we offer suggestions for beginning important conversations before illness strikes—on practical topics such as building a partnership with your doctor, health care proxies, and living wills; and on relationship-focused topics such as communication, intimacy, and hope. While nothing can eliminate the sorrow that illness delivers, preparing emotionally and practically for its arrival can strengthen your relationship and reduce some of the turbulence illness causes.
The Three Dimensions of Illness
When trapped in what feels like a maze, it helps to have a road map. The map will not eliminate the maze, but it can help you prepare for the next set of twists in the path. Through our interviews with couples and experts, we have observed that there are three dimensions to the maze of illness, and that each dimension consists of several patterns. Recognizing these dimensions can help you understand your current experience, consider the resources you need, and inject some order and direction into what can be a chaotic and overwhelming period. Although we have divided this book into sections that describe these three dimensions, it is important to recognize that they may not occur in strict sequence. You may have experiences that overlap or repeat themselves long after you thought they had been resolved.
Preceding the three dimensions is a period we call “the baseline.” This is the pre-illness condition that has been your daily reality. It is rooted in what you have come to take for granted, with each partner owning a set of responsibilities. For example, one of you may handle all of the inner work of the household: the shopping, meal planning, cooking, and cleaning. The other may be in charge of the outdoor work: the garden, lawn, cars, house repairs. One of you might help children with homework and after-school activities, while the other reads bedtime stories.
You have probably created a balance of intimacy and distance that suits you. This baseline period can be described as your “normal” life: family activities, work, getting together with friends, hobbies, and vacations. It may become the time you look back on with longing as you navigate the strange new geography of illness. Your baseline “normal” state may end abruptly with an injury or a serious diagnosis, or it may become slowly transformed with the inexorable decline of a medical condition. Before you realize it, life has dramatically changed. However it happens, the Three Dimensions of Illness become your new reality as a couple.
The First Dimension: Crisis
A health crisis can arrive in many different ways. It may be precipitated by a catastrophic event, such as an injury, accident, or a serious diagnosis. It may arrive with the final shredding of the cover of denial that camouflaged a multitude of disconnected signs of illness. It may be the result of a sudden decline in an existing condition. No matter how the crisis arrives, it is usually accompanied by fear and confusion. These emotions—along with a desperate yearning for reassurance—can easily displace sound judgment, so it is important to seek advice from medical professionals and perhaps psychological or spiritual counselors for help with important decisions made during this period. The shock of the crisis may persist for days or weeks or months. It is a frightening period of feeling off-balance, as if your world has fallen off its axis. You feel chaotic and lost, and search desperately for somewhere solid to plant your feet. The chapters in this section are about the moment the crisis first hits, and its immediate impact on the roles each partner plays.
The Second Dimension: Balancing Act
After the feeling of crisis subsides, you realize that a third party has entered your relationship: an ongoing health problem. This unwelcome guest is a demanding one and its needs often take precedence over your needs as a couple. This is a time of new learning, adjustment, and change as you try to regain your balance and reclaim your life. During the Second Dimension, the demands of illness dictate a shift in the balance of responsibilities, which creates upheaval in routines and roles. This upheaval can raise profound questions about your dynamic as a couple. The well partner now finds the role of caretaker added to his or her roster of previous responsibilities, while the ill partner may feel inadequate because of an inability to function as before. You begin to see each other differently, and resentment or anger may build, mixed with unspeakable fear about the future. Some well partners have described feelings of anger toward their ill partners, accompanied by guilt and the need to suppress these emotions because, of course, the illness is no one’s fault. Some ill partners describe a deep sense of guilt for burdening their healthy partner and forcing the relationship to adapt to the requirements of illness. Some partners may feel renewed appreciation for one another. Some couples are adept at weathering these changes; others feel swamped. Chapters in this section focus on communication, living together or apart, and active coping.
The Third Dimension: Regaining Equilibrium
At some point the situation will settle. Information has been gathered, advice received, and adjustments made. It will never, of course, be the same as the former baseline period, because the health crisis has changed the relationship forever. But a new normal has begun to emerge from the chaos.
For some couples, this new normal arrives with the death of one partner. For others, there is recovery. For still others, aspects of the illness or injury will become permanent. In every case, new ways of living must be created, and the story of the illness or injury becomes part of the history of the couple. Rebuilding the relationship can result in the discovery of a vibrant, reanimated spirit amidst a community of deepened friendships. However, some partners may feel ongoing isolation and depression. For everyone, regaining equilibrium is not a one-time event but a continuous passage. The chapters in this section explore grief and loss, discovering hope, intimacy and sexuality, and the practicalities of living with illness—such as financial planning, legalities, rehabilitation, and alternative health care.
Whether you are a couple at the epicenter of a crisis, coping with long-term chronic illness, or just beginning a discussion with your partner about personal preferences and plans in the event of illness, it can be helpful to have experienced voices offering guidance. Our goal is to equip you with strategies and tools for living with illness and for making choices that are right for you and your partner. This book will provide guidance that will make your path less solitary and more hopeful. You will know that you are not alone.
Chapter 1: The Moment; When Calamity Strikes
When Mark was sixty-five, his squash buddy, Spike, called Consuela one day to say that Mark, who played squash with the same fervor he engaged in all activities, had hit his head against the concrete wall while going after a shot. Unable to move his legs, Mark was in an ambulance on his way to the hospital. "That night, a doctor said to Consuela, “Mark suffered an incomplete spinal cord injury that leaves him largely paralyzed. It is highly unlikely that he will ever recover.”. . . . The outer world faded as Consuela felt her blood pounding throughout her body.
It was as if she had heard that Mark had already died. She was crushed beneath the weight of her own questions: What will we do? What will our lives be like? What will this devastation do to the man I love? “It was like I was driving frantically through a dark tunnel,” she said, “whose only outlet was a black hole.”
Sudden trauma or a terrible diagnosis slams into us like a stray bullet. It penetrates our core in an instant, in the space between two breaths. The breath before was taken in the clear air of our old life. The breath after is caustic. It fades our dreams. It shoves our idealized images of our partner off their pedestals and immerses us in the reality of our own fragility. The patient is not the only casualty. Illness also attacks our belief in the future and in the promise of love.
Illness is a demanding taskmaster. As exhaustion sets in, resentment can supplant compassion, and passion and humor can vanish. However, it is possible to emerge from this dark tunnel and recover some of the sweetness of love by separating idealized image from reality and damaged body from person. “Illness can be the jolt that can remove the dullness from our lives, unveil the potential. It can help us concentrate our focus rather than being distracted by the noise. We can find direction when the noise is silenced, and we can hear the deep, profound voice within.”
Chapter 3 Communication: Speaking the Unspeakable
Illness can serve as a catalyst for engaging in deeper, more authentic and more intimate forms of communication. When old methods no longer work and the situation calls for difficult decisions and adjustments, couples can learn to break the silence, put down their verbal weapons, and open up to new modes of honest dialogue. They can learn that revealing secret hopes and fears does not make you more vulnerable, but rather builds a strong bridge to your most powerful ally, your partner.
In this chapter we meet three couples. Frances and Ted had spent years in couples’ therapy learning to use new communication methods under difficult conditions. Frances’s experience with fibromyalgia and her subsequent thoughts about suicide put their skills to the test.
Claire and Bruce had settled into an acceptable communication rhythm that was disrupted when her ovarian cancer diagnosis alerted her to deficiencies in their relationship.
Katherine and Jerry had passion, but little connection and few tools for communicating honestly outside the bedroom. When Katherine suffered a head injury in a car accident, she realized she had actually been alone for a long time.
Chapter 4 Together and Apart: Creating Balance
Illness or injury strips away the illusion that many couples have of complete union with the loved one. The cruel realities of pain, disability, or deterioration focus a laser light on our essential aloneness. When we have a serious illness, we understand that we are the only ones in our bodies, and no matter how much others may love us, they can never fully enter our experiences. Despite this, we may still be able to find connection with our loved one, even as we stand alone.
In this chapter, we meet two couples whose relationships ebbed and flowed with the currents of long-term illness and deterioration. Each couple is of a different generation and marital status, and each charted the course of their relationship in very different ways. During their journeys, both couples found hope and healing, even through the ultimate separation of death. In coping with illness, each couple found the unique closeness-distance pattern that reflected their individual needs and their levels of tolerance as a couple.
Chapter 7 Military Couples: Wounded Warriors Back Home
The soldier may suffer the effects of war in his or her body and mind, but the soldier’s partner is also affected by the intrusion of the consequences of war into their relationship. While the military does provide services for returning soldiers and their families, the suffering of these families remains invisible to the general public. In this chapter we tell the story of the wife of a soldier who was deployed to Iraq and Afghanistan five times. Our expert is Kathy Platoni, Psy.D., a clinical psychologist and Army psychologist who is a colonel and not only treats psychologically wounded veterans and their families when they return home, but also accompanies troops on combat missions to the front lines in war zones. She has been deployed four times and had just returned from a year in Afghanistan when we spoke to her.
We dedicate a chapter to military couples because we feel a special responsibility to elevate their experience to a higher level of public awareness. One army nurse we spoke to said, “Sometimes the silence is indeed deafening about what happens to all who serve. No one comes out of the service unscathed.”
Chapter 8 Loss and Grief: Finding the Self
Grief and loss do not occur only at the end of life. They run as currents through the entire experience of illness. With each change in health status, each new infirmity, each disappointed hope, both partners experience the loss of a piece of themselves and of their imagined future. Trying to avoid the inevitable sense of loss and grief creates an invisible barrier between the partners and cheats them of precious moments of intimacy. While it is natural to want to shield yourself from sadness, the only way to achieve the necessary degree of numbness is to nullify the reality in which the sadness is rooted—and that involves erasing a portion of your connection with your partner. Yet dwelling on loss can blind the couple to opportunities for joy. If loss becomes the filter through which all daily connections with your partner pass, then opportunities for laughing together and for appreciating the splendor of the trivial get extinguished.
Chapter 9 Hope and Resilience: Discovering Your Strength
“They told us there was nothing more they could do,” recalled Robin. “We drove home from the hospital in a state of shock and went through the motions of preparing dinner. At some point, though, we just looked at each other, leapt into each other’s arms, and wept together." This was the first time Robin and Chuck had been forced to confront the terminal nature of his illness, and Robin described it as a moment of great tenderness even in the midst of their despair.
While Chuck and Robin’s journey is the focus of this chapter, our subject will not be limited to despair. Here we turn our attention to hope and its attendant resilience. Hope can carry you through anguish, despair, pain, and suffering, and bring you to a realm of potential healing and wholeness. Hope is not found; it is created, and it can be created in the direst of circumstances. Several experts we interviewed said, “There is no such thing as false hope; there is only hope.”
One way to choose hope is to focus on the present moment. The feared prognosis lives in the future. The potential for a healing of the mind, the spirit, the relationship occurs in every present moment. Living in fear of the future does nothing to prevent that future from happening, and only consumes one’s inner resources in the attempt. It is only in the present that you can have direct impact. The present offers you limitless opportunities for choosing to hope that you can cherish life, strive for joy, and deepen love.
Couples coping with serious illness, whether as caregiver or patient, can learn to use the “Three C’s of Hardiness” (developed by Dr. Salvatore Maddi) to moderate stress: Commitment, Control, and Challenge.
Chapter 11 The Practicalities: Making it Work
So far in this book we have focused on the interior world of the couple: the relationship itself, as well as the thoughts, emotions, and experiences of each individual partner. This chapter takes a different, outward perspective. While it is important to investigate and adapt to the “inner landscape” that evolves from an illness or injury to one member of the couple, at some point the outer world intrudes. Bills must be paid, and decisions about physical care, household management, and relationships with others demand attention. How to make it all work. This chapter poffers the guidance of several experts to couples about managing the practicalities of illness and physical disability. In addition to focusing on financial and legal matters (including health care proxy and living will), we also discuss rehabilitation, health resources in the community, and the medical system, including complementary/alternative medicine.