Psychosocial Issues for Spouses of Brain Injury Survivors.
Psychosocial Issues for Spouses of Brain Injury Survivors
When couples join "for better or for worse, in sickness and in health," they rarely envision brain injury intruding on the fabric of their relationship. If one of the partners does experience a brain injury, it has a profound effect on the entire family system. However, the noninjured spouse is faced with more burdensome challenges than other family system members, particularly when compared with the burdens experienced by the parents of an offspring who becomes brain injured.
Gender is a factor in this situation. Because brain injury happens more often to males, the noninjured spouse is most frequently a wife. Additionally, society tends to place more expectations for caregiving on female partners.
The coping challenges presented by brain injury are less likely to be related to physical disabilities and more likely to be related to neurobehavioral sequelae. In research conducted by Linn et al they found:
"... the presence of physical disability did not appear to contribute independently to psychological distress. Instead, our study suggests that the presence of behaviour problems in the brain injured individual, such as social aggression, and measures reflecting the stability of the marital relationship ... are more powerful predictors of subsequent psychological distress in the spouses of individuals with brain injury" (p. 144).
This article reviews the psychosocial issues facing spouses of brain injury survivors and discusses the extraordinary burdens imposed on these partners, usually women.
Dramatic Role Changes with Significantly Increased Responsibilities
When a marriage partner becomes brain injured, roles within the family system are quickly and often permanently changed. The noninjured spouse frequently inherits singular responsibility for a variety of tasks: household management, parenting, maintenance of an income, visiting or caring for the injured spouse, decision making, dealing with the health care and social service systems and advocating with insurance companies to name a few. In a study by Leathem et al, the comparison of spouses' and parents' situations indicated that "the general trend was for partners to report more role change than parents in all areas studied" (p.30). This is often more distressing than being the single head of a household.
Since brain injury is most likely to occur in males, the injured spouse is often the primary breadwinner. In a study by McMordie, the economic impact of head injury appears to be much more devastating for spouses than for parents. Parents reported an average loss of $6,000 annually because of head injury, while spouses reported an average loss of $18,000 annually. Spouses were also more likely to borrow money, lose possessions and declare bankruptcy. Research conducted by Hall et al indicated that "both groups (parents and spouses) showed an increase in the number of families without enough money to meet basic needs, but a greater number of spouse caregivers reported this as a problem throughout" (p.883). The noninjured spouse is often faced with the task of advocating for or managing benefits (ie, insurance, settlements, entitlement programs, etc.) which can be a very tiring and discouraging process. At an already stressful time, the spouse may have to fight huge bureaucracies to get limited benefits, which are desperately needed.
Dealing with Unpredictable Behavior
Altered behavior is one of the hallmarks of brain injury. According to Leathem et al, behavioral and emotional changes associated with brain injury interact with each other and are complicated further by decreased frustration tolerance, diminished capacity for self control, mood fluctuations, disinhibition and limited insight. Yet, at times, survivors can demonstrate appropriate behavior which leaves their partners perplexed by this inconsistency. Lezak describes the problem:
"The chameleon-like character presented by some patients creates additional problems for family members whose complaints and distress are not understood by casual and infrequent observers who see the patients on their tenuously maintained best behavior. Thus caretakers may get little sympathy or support from physicians, friends, or relatives who do not live with the patient" (p. 113).
Survivors frequently save their worst behavior for their spouses. The unpredictable nature of these behavior problems makes socializing quite difficult.
New Role as Caregiver
Because of the cognitive and behavioral consequences of brain injury, the survivor frequently needs supervision or parenting. This is a new and difficult role for a spouse. Kreutzer et al who researched caregivers' psychological status after traumatic brain injury indicated that the spouse of the injured individual is forced to take on a parental role which both partners experience with discomfort, while the caregiving parent returns to an already familiar role. Some spouses who accept the role of caregiver and relinquish the previous role of equal partner in the marriage experience emotional relief. However, the task of coping with the role of caretaker is a lonely and challenging one.
The Survivor is a Changed Person Which Changes the Relationship
The tragedy of brain injury for the spouse is the essential loss of his or her marriage partner. It has been described as being a "married widow." The survivor is changed as a person. Research by Tyerman and Humphrey indicated that 72% of the survivors in the study reported that they had changed "as a person" as a result of their injuries. Gervasio and Kreutzer described the spousal experience:
"The nature of the spousal relationship is such that when a person sustains a TBI, the caregiving spouse is deprived of a reciprocal and equitable adult relationship ... With the burdens of caregiving, she may find it more difficult to make new friends and be active outside marriage and family. In American society, women do not have the same license to be as socially independent of their husbands as men do of their wives. Importantly, after brain injury the sexual relationship is also often disrupted. This tension adds another negative emotional consequence for spouses that parents or other relatives, such as adult children, do not have to contend with" (p.23).
According to McLaughlin and Schaffer, relationships that were intimate become superficial echoes of what they were before. Lezak attributes this to the injured spouse's diminished or absent libido or the loss of empathic sensitivity necessary for mutually satisfying sexual activity (p.122). Dealing with the changes in the sexual relationship can be very sensitive because it is often associated with values and religious beliefs.
Friction with In-Laws
Although it has not been documented by research thus far, spouses frequently report very strained relationships with the survivor's family. Helen Nelson relayed a compelling first person report of these struggles in The Perspectives Network. She described common difficulties with challenges over decision making, diminished appreciation of the pain experienced by the wife and children and lack of support and assistance needed by the wife and children. These stresses complicate an already overwhelming experience.
Living in a Social Limbo
The noninjured spouse's situation is described well by Lezak:
"The healthy spouses are typically cut off from opportunities to meet and enjoy the companionship of others because they have no place in society: being neither able to participate in social activities with married couples nor being single, they are truly in a social limbo" (p. 122).
Noninjured spouses frequently avoid gatherings with couples they socialized with before the injury. There is reluctance to socialize with the survivor because of the unpredictable and potentially embarrassing behavior. Friends tend to disappear over time. A spouse described her situation: "The world considers me married, but I am not. I don't fit with the single women; I don't fit with the divorced women" (p.15). This social dilemma creates isolation when loneliness is already a problem.
Dealing With the Issues
How do spouses deal with such difficult psychosocial issues? Research in the 1990s has focused on family functioning and caregivers distress after brain injury. The burdens imposed by the injury on spouses or partners have been compared to parents' burdens. Clearly there is documented psychological distress for all caregiving family members when brain injury occurs. What has become obvious from recent studies is that the burden for spouses is larger than the burden for parents. In fact, Hall et al reported that, when compared with parent caregivers, twice as many spouse caregivers experienced a major crisis.
Since the spouse has essentially lost his or her marriage partner as a result of the brain injury, a process of mourning is necessary. However appropriate this mourning may be, there is usually awkwardness in grieving the loss of someone who did not die. Lezak described this dilemma:
"Compounding the emotional problems of these spouses is the social impermissibility of mourning the loss of their loved one: although the person loved by the spouse has vanished, custom allows us to mourn only when the body is dead" (p.122).
Friends and family are customarily a source of support and comfort during a time of grieving. However, they may fail to recognize the spouse's need to mourn since this situation is so atypical. The spouse may need to seek support from professionals who are familiar with brain injury or from other spouses who have dealt with brain injury. The noninjured spouse may need to educate other family members about the need to mourn in order to increase their sensitivity during this very difficult and awkward process. Simply having someone validate the normalcy of this need to grieve may provide emotional relief to many spouses.
In dealing with the role changes and increased responsibilities, spouses may benefit from careful prioritization of this multitude of tasks. As the injured spouse recovers, he or she may be able to resume some of his or her previous responsibilities. Probably the most important skill for spouses to develop is the ability to ask for help. This is usually a gradual and difficult learning process.
Dealing with social isolation and loneliness may require a concerted effort on the spouse's part to find sources of social contact for both partners. The noninjured spouse may be able to link the survivor with support groups and specialized recreation programs. Despite overwhelming responsibilities and consequent fatigue, the noninjured spouse may need to work on rebuilding a new social life for him or herself. Successfully developing this new social life may be predicated upon developing some level of comfort with socializing alone.
The conflicts which tend to arise between the spouse and the in-laws typically develop early in the recovery process and often begin with rivalry over decision making. If professional or pastoral intervention can reduce this conflict and enable both parties to remain involved, there would be an increased likelihood that both could work together throughout the survivor's recovery. Family therapy may be of benefit in addressing longer-term problems.
Another avenue of dealing with the difficulties associated with brain injury is education. Information about the long-term effects of brain damage must be carefully presented to family members who need the protection of denial in the early stages after the injury. Kreutzer et al report that:
"These research findings imply that professionals should provide caregivers with more consistent and realistic information about behavioural difficulties in TBI and their likely impact upon the family. Education of family members regarding the impact of the subtle and residual linguistic and cognitive deficits of brain injury is essential. Providing families with on-going training in behaviour management and other techniques is necessary to minimize the disruption of family functioning" (p.228).
Providing the right information at the right time is a challenge. Family members' readiness for this information may develop after the completion of formal rehabilitation programs. Printed information provided early in the survivor's recovery may help some families especially if it is available for later reference. However, written information may not be the optimal method for teaching family members about behavior management. Brain injury support groups may play a role in linking family members with others who have dealt with difficult issues and with professionals who have expertise in brain injury.
Mutual support can be a very helpful coping tool for spouses. Most brain injury support groups focus on the issues of parents and survivors. Spouses are often searching for opportunities to speak with someone who understands their unique collection of problems. They are usually relieved to discover the availability of a mutual support group exclusively for spouses. However, the timing of involvement in peer support groups needs to be carefully handled. Spouses who still need the protection of denial would find most spouse support groups very negative. For the first 12-24 months after the injury, the spouse would probably benefit more from carefully selected one-to-one contact with another spouse. In order to handle a mutual support group, the spouse would need to be comfortable hearing about the problems which still exist many years down the road.
Individual psychotherapy may be of benefit to spouses also. Because of the finding that the role of spouse predicts depression in caregivers, Kreutzer et al noted that, while all distressed caregivers may benefit from counseling and support groups, special attention should be paid to the depressive and grief reactions of spouses. Individual treatment with a mental health professional who understands brain injury may assist the spouse in dealing with a very distressing situation.
Some spouses may need to consider leaving the marriage. This is a difficult and painful decision. The guilt feelings which often accompany this consideration can be enhanced by friends and family who expect persistence "for better or for worse, in sickness and in health." A study by Wood and Yurdakul indicates that the possibility of separation or divorce increases over time with the strongest likelihood of marital breakdown occurring around 5-6 years post injury. Some spouses who decide to leave the marriage feel it necessary to continue in a caretaking capacity for their ex-spouses. The ending of a marriage may not always need to be perceived as a failure; it can sometimes be a positive new beginning for both the survivor and the spouse.
Whenever brain injury strikes, family members experience psychological distress. The effect on a spouse is particularly burdensome. Knowledge of the issues facing these spouses should enable professionals to be sensitive to their special needs. Spouses may be able to reduce their distress by seeking education, finding mutual support and participating in psychotherapy. In some instances it may be necessary for spouses to leave the marriage, but this may provide a new beginning for both partners.
[1.] Gervasio AH, Kreutzer JS: Kinship and family members' psychological distress after traumatic brain injury: A large sample study. Head Trauma Rehabil 1997; 3: 14-26.
[2.] Hall KM, Karzmark P, Stevens M et al: Family stressors in traumatic brain injury: A two year follow-up. Arch Phys Med Rehabil 1994; 75: 876-884.
[3.] Kreutzer JS, Gervasio AH, Camplair PS: Primary caregivers' psychological status and family functioning after traumatic brain injury. Brain Injury 1994; 3: 197-210.
[4.] Kreutzer JS, Gervasio AH, Camplair PS: Patient correlates of caregivers' distress and family functioning after traumatic brain injury. Brain Injury 1994; 3: 211-230.
[5.] Leathem J, Heath E, Woolley C: Relatives perceptions of role change, social support, and stress after traumatic brain injury. Brain Injury 1996; 1: 27-38.
[6.] Lezak MD: Brain damage is a family affair. Clin Exper Neuropsychol 1988; 1: 111-123.
[7.] Linn RT, Allen K, Willer BS: Affective symptoms in the chronic stage of traumatic brain injury: A study of married couples. Brain Injury 1994; 2:135-147.
[8.] McLaughlin AM, Schaffer V: Rehabilitate or remold? Family involvement in head trauma recovery. Cognitive Rehabil 1985; 3: 14-17.
[9.] National Head Injury Foundation, Inc: For your information. Newsletter 1988; 3: 2.
[10.] Nelson H: In-laws and traumatic brain injury. The Perspectives Network 1992; Fall: 10-13.
[11.] Tyerman A, Humphrey M: Changes in self-concept following severe head injury. Intern Rehabil Res 1984; 8: 11-23.
[12.] Wood RL, Yurdakul LK: Change in relationship status following traumatic brain injury. Brain Injury 1997; 7: 491-502.
[13.] Zeigler EA: Reflections of a spouses' group. Cognitive Rehabil 1990;8: 14-19.
Questions or comments about this article may be directed to: Elizabeth A. Ziegler, ACSW, CCM, CRP, Case Management Department, Inova Mt. Vernon Hospital, 2501 Parker's Lane, Alexandria, VA 22306. She is a Rehabilitation Case Manager.3
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|Author:||Zeigler, Elizabeth A.|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Apr 1, 1999|
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