Chapter 5_How Families Become Victims_pp 89-105

Chapter 5_How Families Become Victims_pp 89-105 - -five-...

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Unformatted text preview: -five- How Families Become Victims Jeff Davis and his wife, Susan Levine, had looked forward to es— caping from Philadelphia’s heat in August for a weekend in the Berkshire Mountains of western Massachusetts. Along with two other couples, they planned to bicycle the gentle hills and fields by day and catch pianist Emmanuel Ax’s performance with the Bos— ton Symphony at Tanglewood on Saturday evening. On Saturday afternoon, Davis—a skilled, cautious, and knowl- edgeable cyclist (he was an associate technical editor at Bicycling magazine) —was riding his bike down a gravel back road. When his front bicycle tire hit an obstruction, he was thrown over the handle— bars and landed on his head. If he hadn’t been wearing a helmet, he almost certainly would have died. As it was, he suEered a severe closed head injury, shearing and stretching the axons that transmit nerve impulses to and from the brain.When he arrived at the Berk— shire Medical Center, he scored only four or five points on the Glas— gow Coma Scale. Davis was five weeks shy of his thirtieth birthday. Thirteen days after the accident, when Davis was still in a deep coma, Levine used her American Express card to pay the $2,200 charge for the air ambulance flight from the Berkshires to the Hospital of the University of Pennsylvania in Philadelphia. It was another two weeks before Davis recognized her and spoke her name. Because he’d been careful (he’d worn a helmet) and lucky (the initial axonal damage was only moderate, and he’d received prompt, appropriate care to control pressure), Davis was able to leave the hospital just two months after his traumatic brain injury. His medical bill came to $78,007.15; fortunately, he had insurance to pay it. More than six years later, Levine, a newspaper reporter, wrote an account of her husband’s injury, describing what it was like to spend weeks wondering whether he would ever emerge from his coma. In one passage, she said: “Jeff’s neurosurgeon, . . . with his team of residents and nurses, saved Jeff’s life—his intelligence, his love of music, his generosity and spirit, his repertoire of bad jokes. In a different way, they also saved me.” Once Davis regained consciousness, Levine faced an unsettling uncertainty. Her husband was alive and alert, but was he the man she had married? Before the accident, Davis had been friendly and adaptable. Now, the staff at the rehabilitation hospital were de- scribing him as defensive, disorganized, uncooperative, and lethar— gic. And Levine often caught the brunt of his personality change. “Once, as I pushed him to comply with some now—forgotten re— quest, he asked my name,” she recalled. “I told him and he replied, ‘I have a wife named Susan, but she’s nicer than you.’ ” Fortunately, Davis made an almost full recovery. He emerged from rehabilitation with no lingering physical, cognitive, or speech defects, although he had become more cautious and had stopped riding bicycles. “There are no tears or anger anymore, only a kind of haunting sorrow for what was nearly lost,” Levine concluded. Haw Families Become Victim; I I “We have different perspectives on that, of course. As Jeff tells me, ‘You experienced it. I learned about it.’ ” Levine suffered greatly with her husband—sometimes more than he did, since Davis was unconscious for weeks. Despite the months of agonizing uncertainty that she endured, despite the heartbreak- ing occasions when he didn’t recognize her, Levine’s story had a happy ending. The man she loved was restored to her. Ardyce and James Masters weren’t so fortunate. Their daughter Karen (not her real name) also suffered a traumatic brain injury, after which she was comatose for one week and semicomatose for one more—half the time that Jeff Davis was unconscious. Yet their experience was far worse than Susan Levine’s. Two months after Karen’s near-fatal car accident in Oregon, the Masterses brought their daughter, who was then twenty years old, home to Montana. She had recovered most of her physical and cog— nitive capabilities, but her judgment and her ability to make deci— sions had been seriously impaired. Worst of all, she was emotionally unstable. As weeks passed, she became increasingly belligerent and suicidal. Alarmed, her parents turned for help to a local hospital, where the psychiatrist who treated Karen wouldn’t even look at the medical records of her head trauma. Instead, he prescribed Haldol, an antipsychotic drug. Bouncing in and out of the hospital, Karen impressed some of the doctors who examined her as relatively nor- mal, even fit to return to work. Head—trauma patients who have trouble curbing their angry or socially inappropriate impulses can often do so, albeit sometimes with great effort, in brief, structured situations. Dealing with people outside their families, they may ap- pear to be perfectly normal for short periods of time; back at home or confronted with something irritating or unexpected, they may lose control. Karen’s doctors advised a three—month hospital stay to give them time to diagnose her problems and develop a plan to help her. How Families Bewmz Victim: .91- She refused and became completely uncooperative. As her mother explained: “Montana law makes involuntary hospitalization very difficult, so we waited helplessly until, angry becauSe a local store refused to cash a check, she became violent and abusive. The police were called, and they took her to the hospital.” But Karen was very bright and verbal. At her commitment hear- ing, she persuaded the judge that she was being persecuted by her parents. After spending four months in a disastrous marriage to a man who had been a fellow patient at the hospital—an alco- holic more than twice her age—Karen killed herself. Nine years had passed since the accident that had left her intellect intact but her judgment and emotions devastated. Her mother’s words reflect the helplessness and anguish experienced by so many family mem- bers of the brain-injured: “Over and over, her lack of judgment and capacity for forethought led her into desperate predicaments. Afterwards, she could see what she had done, and her self—hatred increased; but she could never seem to learn from her experiences. I cannot blame her for ending her suffering. . . . Her deficits . . . prevented the rational decision—making that would have allowed her to accept genuine help.” Most traumatic brain injuries shatter more than one life. Al- though one victim feels the physical impact of the fall, the blow, or the bullet, friends, colleagues, and especially family members feel its psychological impact. Tragedy ripples out to touch husbands and wives, parents and children.Virtually every case I’ve recounted in this book could be narrated either from the victim’s point of view or from that of one or more significant family members who, in their own ways, were equally involved. This is true for my family as well as those of James Brady, Nancy Cruzan, Russell Moody, and many others. Without adequate insurance, a settlement from a lawsuit, or other means for paying for appropriate rehabilitation, victims of How Families Become Victim: . I traumatic brain injury, once they are medically stable, are usually transferred to a nursing home, where they receive little beyond custodial care. Often family members choose instead to bring the patient home, where they provide a better or at least more personal level of care. For severely disabled patients, this entails round-the— clock attention, usually on the part of a mother, wife, or daughter. If the caregiver had been working outside the home, the family suf— fers a drop in income. No matter what, the other family members are deprived of her time and nurturing. The family dynamic shifts not just to accommodate the brain—injury victim but to focus on him or her. Gone are vacations, picnics, and parties. Children feel uncomfortable bringing friends home. Even when the money is available for appropriate rehabilitation, someone in the family may spend hours a day with the patient, reading aloud, praying, even becoming a kind of lay assistant in physical or speech therapy. To make this possible, the family may move in order to be closer to the institution. A mother who had previously juggled a full—time job with caring for four children may find her after—work hours devoted to caring for only one, leaving the responsibility for the others to her husband or her oldest daughter. Whatever the victim’s or family’s resources, the time comes when most victims of traumatic brain injury go home. They may still be receiving speech and physical therapy, psychological counsel— ing, and training in the skills of everyday life. These patients aren’t ready to live by themselves, but they are ready to function outside an institutional setting. The most obvious challenges to the household are physical and logistical. Doorways may need to be widened to accommodate a wheelchair. A bathroom may need to be added or remodeled. If everyone else in the family works or goes to school, schedules have to be rearranged or part—time help hired so that someone is always home with the brain—injured individual. How Families Became Victimr 093. a H :2. on _. '5 The Burke family’s experience is typical. At seventeen, Lenny Burke ranked sixth in his high school class and had been accepted to two prestigious colleges when he was “submarined” during a basketball game. As he was poised in the air to make a lay-up shot, an opposing player hit his legs and catapulted him into a wild backward somersault. The right side of his head crashed onto the floor, propelled by the full force of his 61", 175—pound body. Lenny spent forty—five days in a coma, another four and a half months in the hospital. After his release, his mother, Emmie Burke, later president of the Vermont Association of the Brain Injury As— sociation, kept a log of his progress and of how the family adapted to living with the young man whose promising future had been destroyed. In an article offering practical advice to other families of brain—trauma victims, she wrote: “Lenny is the oldest of four children. When we brought him home, it was not only an adjust— ment for my husband and me, but for his brothers, Kevin (15) and Michael (13), and his sister, Kathy (11), as well. . . . At first, our younger children tried to adjust to Lenny’s deficits, but after one and a half years, we found it much healthier for us all to expect Lenny to adjust to our family needs.” The Burke family developed a menu of techniques for estab- lishing a realistic family routine and helping Lenny to adapt to it. Sharing these, Emmie Burke advised: make sure the injured family member showers, shampoos, and shaves every morning. If he has trouble dressing appropriately for the season, offer a choice of two outfits instead of giving him free rein to pick out his own clothes—— and then sweat or shiver as a consequence of his impaired judg— ment. When he chatters on aimlessly or keeps repeating the same question or story, express your discomfort with the conversation, instead of saying something judgmental. Emmie Burke had a list of concrete, practical suggestions. How Families Become Victims .94- Concentrate on all the positive progress. - Discuss in detailed conversations with the injured person the many things that he or she can do. - Write out positive phrases and place them in obvious places around the house (the refrigerator, the bathroom mirror, the wall of the family room). ' On a bulletin board, post some activity to look forward to each day. ' In the injured person’s bedroom, hang a large calendar for keeping a schedule and crossing off each date at bedtime, and make sure that he or she carries a small appointment book during the day. ' Discuss articles in the daily newspaper, buy current magazines, and watch television news programs together. Taken together, such accommodations represent significant time and effort by the family just to establish and maintain a semblance of normalcy. But these are minor inconveniences compared to the emotional challenges of living with someone who’s suffered a trau- matic brain injury. Recovery from acute brain injury—from the physical and medical consequences of the trauma and even from the damage to cognitive capabilities—doesn’t mean recovery of personality. Especially in closed-head injuries, any patient who has been comatose for more than a few days almost certainly will suffer irreversible personality changes. They range from those as subtle as Jeff Davis’s increased caution and slightly altered sense of humor to those as dramatic as Karen Masters’s suicidal depression. Even when clinicians try to communicate this information to families, family members often don’t hear. Early on, they are so relieved that the person they love is alive and is regaining some ca— pacity that they can’t comprehend that full psychological recovery may never come. Later, when the victim looks and sounds like he or she did in the pasr, it is particularly difficult for families to re— vise the images and expectations that have sustained them. Just as How Families Become Victim: .950 ‘5 . ‘ : brain—injury survivors often have extraordinary powers of denial, so do their families and friends. For reasons that neuroscientists still don’t understand, some of the most common and serious long—range problems suffered by the brain-injured are psychosocial. Study after study documents social isolation, lack of social contacts outside the immediate family, and socially inappropriate behavior even in patients who can walk and speak normally and who make the same scores on IQ tests as they did before their head trauma. It’s easy to understand why a former athlete now confined to a wheelchair or a brilliant lawyer whose speech is now slurred might become depressed and irritable. Most of us can empathize when we read that former White House press secretary James Brady, a man famous for his sense of humor before and after the gunshot wound that almost killed him, slumped into depression when he recognized that he would never fully recover. In fact, some of the emotional problems experienced by the victims of traumatic brain injury are normal reactions to their conditions. But in most cases, behavioral changes go beyond that. Some re— sult directly from the battering of the brain; others are indirect con— sequences. According to neuropsychologist Muriel Lezak: “By and large, as the severity of the organic damage increases, the capacity for self-awareness, and particularly for accurate self—appreciation, decreases. Thus, the most profoundly impaired patients . . . are typically only dimly aware of their dysfunctions, if at all.” Because retraining the injured brain requires great concentration and effort, patients who are well enough to go through rehabili- tation experience fatigue and frustration. Some of that response may be due directly to organic damage, some indirectly to an ap- preciation of how long and difficult the road ahead will be. But even people who suffer relatively mild concussions may experience fatigue for months afterward. They may start a two—hour project only to put it down after thirty minutes, to the inconvenience and How Families Become Victim: . 96 . annoyance of family members. Whatever the brain does that en— ables us to focus on a task and carry it through seems to be easily damaged even when most cognitive capabilities remain intact. Brain—trauma victims also tend to have trouble assimilating new information and integrating it into their everyday behavior. Such learning difficulties also may make brain-trauma victims unaware of the social and judgment errors they make or, if they are aware, unable to stop repeating them. Imagine the frustration that a family member must struggle with in dealing with this day in and day out. A woman with a head—injured husband explained: “It takes him ten minutes to read a sentence, and a few minutes later he may not remember what he read. My husband has no long-term memory, and he can’t follow directions. You tell him to turn off the light, [and] he’ll shut the door.” Damage to brain tissue seems to heighten the anxiety arising from the patient’s growing awareness of his disabilities. This can lead to paranoia, which may take forms ranging from suspicions about what family members are doing with the victim’s money and belongings to intense sexual jealousy. A wife who has been faithful for years may have to face her head—injured husband’s accusations that she’s sneaking off to meet a lover whenever she leaves the house to go to the supermarket. Combined with the other stresses placed on the family, such behavior may eventually cause the very thing that the victim fears: it can drive the spouse away. Even without accusations to contend with, spouses of the brain—injured are often torn between guilt about wanting to abandon the injured partner and resentment at having to sacrifice so much of their own lives and satisfactions to care for someone who often doesn’t appreciate the burdens undertaken on his or her behalf. Many people who are brain—damaged display a childlike ego— centricity. They don’t take into consideration the feelings of those around them. Perhaps because they have lost their own self— How Families Become Victim: o . fig iViEUibfih-ggzpnfiga identity, victims of traumatic brain injury are often incapable of appreciating the needs of others. They may show a complete lack of gratitude for the enormous efforts and sacrifices that family members make on their behalf, and they may become unreason— ably demanding, wanting every moment of the parent’s or spouse’s attention. One of the most troubling results of head injury is a lack of impulse control, most commonly displayed as outbursts of anger. Sometimes a brain—trauma victim will hit, shove, or push. Such infantile physical battery, annoying in a three-year-old but poten— tially dangerous when delivered by someone with adult strength, tends to be directed far more often at family members than at strangers. Verbal diatribes are even more common, but such verbal abuse can sting as much as the physical variety, especially when it falls on someone who has devoted himself or herself to caring for the person who is lashing our. Children may not understand that the cause of their father’s rage has little or nothing to do with their behavior or that his belittling stems from both his injury and his resulting competition for their mother’s attention. Younger chil— dren may respond by developing learning and behavior problems of their own; older ones may escape by abusing alcohol or other drugs, developing other risky behaviors, or literally running away. Victims of head injury may also become sexually promiscuous or crude, whatever their previous behavior or religious and cul— tural background. Sometimes internal restraints that prevent others from acting out certain thoughts disappear entirely. For example, one high school girl whose brother was injured in a motorcycle accident had to stop bringing her friends home because he invari- ably tried to kiss and fondle them. The greatest challenge facing anyone close to someone who suf— fers a severe head injury can be accepting what has happened and the uncertainty of the outcome. Researchers who have studied the How Families Become Victims . o families of victims of traumatic brain injury have found that they react in stages similar to the famous five that Elisabeth K'Libler— Ross identified as the steps people go through in confronting death and dying: shock and denial, anger, depression, bargaining, and acceptance. But for families of victims of traumatic brain injury, the stages of this mobile adjustment or process are different, and members may experience more than one at once or move back and forth among them, depending on how much or how little progress they see. The emotional road traveled by families of patients in per- sistent vegetative states includes grief and anxiety, guilt, denial, ac— commodation, and disengagement. With minor differences, most families of severely head-injured individuals pass over the same rough terrain. In some ways, reaching the point of accommodation may be even harder for the parents, spouses, siblings, and children of brain-trauma victims who make partial recoveries than for fami— lies of those in persistent vegetative states. Lezak describes how a family’s perceptions, expectations, and re— actions to a brain—injured member develop over the course of two years. Initial happiness and relief that the patient is alive evolve into bewilderment when he or she doesn’t act normally even three to six months after coming home. Families are prone to anticipate or at least hope for the Victim’s full recovery. When this doesn’t happen, disappointment adds to the stress caused by the victim’s troubling behavior. Sometimes clinicians contribute to these problems by failing to adequately warn families that the brain—injured individual may emerge a very different person from who he or she was before the accident, even though that person may look the same and in many ways behave the same. Eventually, the family members become discouraged. They may become overwhelmed with guilt, blaming themselves for what they might or might not have done to prevent the injury. They may become depressed, feel trapped, or even fear How Families Become Victim: n99- "i'iiiEUfiéifi .uI-“VT’ ’“ ' ’ that they might go crazy. The religious faith that brought them comfort and courage in the days immediately following the acci- dent may become obsessive, or they may lose it altogether if they don’t see the progress for which they’ve prayed so hard. If no one has explained to them that fatigue, irritability, angry outbursts, and lack of motivation are common, predictable results of traumatic brain injury, the family may come to perceive the victim as self- centered, irresponsible, and lazy. Not only do brain—trauma victims themselves need to be reeducated, but family members also have to be retrained in appropriate ways for communicating with and helping the head—injured person in their midst. After a year or two of physical and cognitive recovery, many brain—injured patients become childlike and dependent. This is difficult for parents Whose son or daughter may have just been entering adulthood at the time of the accident or assault. The work involved in rearing a child from infancy through adolescence makes it particularly difficult for parents to accept that their son or daughter may be stuck forever at some point in childhood, never regaining that recently won maturity and independence. On excursions outside the house, there is always the risk of inappropriate behavior, ranging from poor bladder control to a tendency to shout rude or blunt remarks. Recounting her experi— ences living with her brain—injured stepson—a young elementary schoolteacher who suffered a closed-head injury in a car accident—anette MofFatt Warrington described taking him out for a pizza between therapy sessions. David Warrington found the pizzeria’s table too small for the pizza that they had ordered, so he simply pushed the table aside and proceeded to eat his pizza on the floor. David also had difficulty controlling his bladder, so if he happened to be somewhere that didn’t have a bathroom when he needed one, he would simply urinate as he was walking. How Families Become Victim: ' 100 ' The spouse of a head—trauma victim may experience a differ- ent but equally painful kind of distress. The injury may suddenly transform a person who before the injury was a companion and source of emotional and economic support into a lesser, often de— pendent role. Frederick Linge described his laborious attempts to fulfill a useful role in his family after the automobile crash that left his body shattered and his brain severely damaged: “As time went on and I grew stronger, I took over all of the housework, cooking, and cleaning, laundry, and so forth. I enjoyed doing these things, but at first they were quite an ordeal for the family. A shopping trip that would have taken my wife an hour would occupy an entire morning, with me making laborious lists, checking and recheck- ing, let alone the problem of getting me in and out of the car [and] maneuvering up and down the aisles with crutches, casts and shop— ping cart to be taken into account.” The marital burden multiplies because even when no physical impairments interfere, maintaining a satisfying sexual relationship can be extremely difficult. Some victims of traumatic brain injury lose all interest in sex, while others become obsessed with it and often behave inappropriately. One woman complained that her husband fondled her breasts every time she bent over to pour his coffee. When a young child or an old man or woman suffers a severe head injury, the family sometimes finds adjustment somewhat easier. Even before such an accident, a toddler will have been de— pendent, with little judgment and undeveloped social skills; the emotional challenge for the parents will come in adjusting not so much to the child’s situation shortly after the injury but to what may be limited prospects for the future. In many cases, people over seventy don’t survive the sort of severe head trauma that leaves younger victims alive but impaired; when the elderly do survive, How Families Become Victim: ' 101 ' i , ' 1 4. l T : '2: their families may have an easier time dealing with it because the families have already been mentally preparing for their care in their declining years. Sometimes two sets of families or friends struggle over a victim of traumatic brain injury as if they were divorcing parents battling for child custody. When a 1983 car accident left her lover, Sharon Kowalski, brain-damaged and paralyzed, Karen Thompson fought for eight years to bring her back to their home. Denying that their daughter was a lesbian, Donald and Delia Kowalski placed her in a nursing home and refused Karen visitation rights. Finally, in 1991, Judge Robert Campbell stated that Sharon needed the companion— ship and support of both her families and designated a third party as her guardian. From the best of motives, the family may become overly protec— tive of its brain-damaged member. As he recovered his ability to function independently, Linge had to push his wife and children to stop treating him like a fragile invalid, behavior that impeded his progress. He explained: “At times I lost confidence in myself because they didn’t think I could do something. This is a sensi— tive area and one that probably presents the greatest difficulty for the families of brain-damaged people. Most families have reserves of compassion and protectiveness that they can draw on in dealing with a hurt member. Supporting the injured one is not hard; it is the letting go that is difficult. It takes a great deal of sensitivity and courage for a family member to change roles at the appropriate time and let the handicapped person ‘go it alone.’ ” Some families are torn between becoming too possessive and controlling of their injured family member and their resentment that the injured person isn’t able to be more independent. Others scapegoat brain-injured members, displacing anger onto them and blaming them for problems. that have nothing to do with their dis— How Families Become Victim; ' 102 ' abilities. Long-dormant, unresolved emotional conflicts may come to the surface as the person with the brain injury attempts to re- gain lost capacities or to function in spite of disabilities. Similarly, family members may use the injured person’s disabilities as an ex— cuse for expressing feelings that had been held in check before the accident or right afterward, when the victim was at greater risk of serious disability or death. Such dysfunctional family dynamics not only increase tension; they can also prolong or derail the rehabili— tative process. Family problems surrounding brain injury naturally reflect the family’s preexisting dynamics and relationships. If a family was well prepared to cope with an unexpected emergency, they may do better, at least initially, in coping with the brain injury. If a family was already on the brink of dissolution, the head injury may cause it to fragment. Some victims are already alienated from their families when their injury occurs, and the injury only exacerbates the alien- ation. Males in adolescence and their early twenties, who make up the largest group of the brain—injured, may be going through dif- ficult or hostile separations from their parents. Alcoholics, whose drinking causes all too many car accidents, already have put other stresses on their families. While some families fracture, others confronted with a simi— lar emergency mobilize around it and pull together in order to care for an injured member. They may be able to draw inspira- tion and strength from religious beliefs or from supportive friends. Lenny Burke’s younger brother, Michael, found his already close family drawn even closer by the tragedy. Analyzing the impact that Lenny’s coma had on the Burkes, he wrote: “The month and a half that Lenny spent in a coma was the most trying experience my family and I had ever known. During those 45 days of uncertainty at the hospital, I came to know the great strength my parents pos- Hoiu Familier Became Victim: ' 103 ' i ‘11 h i l‘: “ A i“ sessed. . . . We all shared the same feeling of helplessness, and I believe it was this that brought us so close together as a family. We became open and honest in our communication with each other.” But no one is completely prepared for illness or disability, and we can’t reasonably expect everyone to turn it into an opportunity for growth. Whatever growth occurs is only secondary to the suf— fering that has been endured. One way that the Burkes were able to draw something positive from their tragedy was by helping others through their state’s af- filiate of the Brain Injury Association. Participation in brain-injury support groups helps many families cope. Even though the cir— cumstances of the individual survivors and the individual families vary widely, people dealing with the vicissitudes of living with the brain-injured can give one another a kind of understanding that even the most empathic professionals cannot achieve. Such sup- port groups have recently sprung up around the country, and both state organizations and the Brain Injury Association’s central office in Washington, D.C., maintain directories of contacts. No matter how positive an adjustment a family makes, each must deal with its own grief. Until a family understands and ac— cepts the situation that they and their brain—damaged member face, they remain unable to mourn the loss of the person they knew and loved. Deprived of the comforting rituals that society has devised for mourning the death of someone close, they may have to create their own to mourn the loss of those parts of the personality that can’t be regained. Ultimately, family members must detach them— selves from their old expectations and form new ones based on the limited or altered capacities that their son or daughter, brother or sister, spouse or parent now possesses. This task is difficult enough in itself. When limited economic resources and rehabilitation options force the family to choose be- tween the welfare of the brain-trauma victim and the welfare of How Families Become Victim: ' 104 ' all its other members, too often the results are a shattered mar— riage, guilt—spawned depressions, and the loss of the potential contributions of three or four individuals, rather than one. Even when money isn’t a problem, people who reach the fullest pos— sible level of recovery from their traumatic brain injuries face a society ill-prepared to help them make use of their remaining capa— bilities—a society dependent on cars, short on empathy, and far less knowledgeable about traumatic brain injury and its individual manifestations than about AIDS or cancer. We can do better, and we must. Fairness and compassion—two key values in our culture—require us to provide appropriate sup— port to victims of traumatic brain injury and to their families. 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