In any kind of system, be it organizational or familial, if a part of that system changes, so must the rest of the system. Few changes affect the familial system as drastically as brain injury because of the less obvious per-sonality changes. It is often even more difficult for the family when a loved one looks the same, but is somehow different than before the injury.
Problems of the person with TBI are likely to create adjustment problems for the entire family. Emotional changes, poor memory, and subjective symptoms, such as slowness and fatigue are the most frequent problems reported by family members. Cognitive and personality changes seem to cause more trouble to families than actual physical disabilities.
Muriel Lezak, a psychologist specialized in working with people with a brain injury and their families, identified five personality changes that are most likely to cause family adjustment problems. These include:
1. A self-centered behavior that lacks understanding of others and an inability to change behavior according to the needs of another person. The person with a brain injury does not seem to identify or understand the needs of others. Even when these are presented to him/her, it may not result in any change in his/her self-centered attitude and behavior.
2. An impaired ability to control himself/ herself. This can result in an increase in impulsive acts, a non-purposeful restlessness, and increased impatience.
3. Depending on others for social contact. A lack of initiation for social contacts may contradict what the person says he/she wants. This can often result in a kind of isolation for the family.
4. Apathy, silliness, extreme mood swings, and irritability.
5. Either greatly increased or decreased sexual interest.
The intense stress felt by the family seems to level off between one and six months after injury. However, it may remain at a higher level than before the injury unless the family has developed some emotional distance between themselves and the person. This emotional distance may or may not include a physical distancing such as separation or divorce.
There are some differences in a family's reaction to an injured family member who remains in a vegetative state and a family member who returns home.
Muriel Lezak has identified six stages of a family's reactions after a person’s return home. During the initial stage, the family is very happy. At one to three months after hospitalization, the family often expects full recovery. As has been indicated previously, the physical part is actually a very small part of the brain-injury recovery process. In addition, the family may have been given very pessimistic predictions about the person’s recovery, some of which may have been disproved. The person may be perceived as a little difficult because of fatigue, inactivity, and weakness. However, families are often so relieved to have their loved one at home that they are willing to be quite understanding and often sacrifice their own needs.
It is important that families realize, if they are going to be able to continue giving good care, they must care equally well for themselves. Often times, the family needs to consider legal documents and financial arrangements during this time as well. The indirect message here is that the family is dealing with a long-term problem.
The second stage may occur anywhere from one to nine months after hospitalization and is often characterized by bewilderment and anxiety. The family has become aware at this point that this is not just a passing problem. Unfortunately, caretakers are likely to blame themselves because things are going wrong. One of the tasks of the family during this period is to learn to observe the person objectively in order to understand typical behaviors of brain-injury. Family reactions of anger and frustration are natural reactions and help relieve the guilt and fear for their own sanity.
In the third stage, the family may experience depression related to helplessness and despair. At times, they describe this as though they are “going crazy.” At this point, the family often has stopped making excuses for the person’s behavior. The family may see him/her as lazy, self-centered, and irritable. At the end of this stage, families frequently are able to recognize, more realistically, how the person has changed. Often, it is not until this point that families are able to look at the irreversible effects that can result from brain injury.
Despair, depression, and a feeling of being trapped are common feelings at the fourth stage for families. This stage comes follow-ing an extended time of misery without plans. Frequently, it is not until this point that the caretaker is able to think realistically about the future. A part of the task of the family at this stage is to separate themselves from their emotional involvement with the pre-injury personality of the person, but not necessarily with the person himself/herself. This is a preparation stage for a realistic and important mourning process by seeing the person as someone different from the one the family member once knew.
The fifth stage is typically mourning, i.e., giving up hope of the return of the person as he/she once was. Unfortunately, social and religious attitudes can interfere with the unacceptable tasks of mourning and emotionally saying goodbye to a still-living person. However, this is a natural and important phase of the family's experience.
By the sixth stage, much of the emotional pain has been worked through and the family is ready for reorganization. A part of this stage involves minimizing emotional involvement and sometimes even physical involvement. Families reorganize their lives to give injured family members a chance to grow. Pre-traumatic relationships have been recognized as different and have, in reality, changed. At this point, the family is often exploring daycare or placement for the person, which may or may not include separation or divorce.
Although there are general stages that families go through, depending on the relationship with the person, different twists are noticed in the role changes. In the marital relationship, frequently there has been a role reversal. For example, in one family, the wife's role was to be a homemaker and mother almost exclusively. However, when her husband was injured, she became the primary decision maker, the financial manager, and generally, the one in charge. For other relationships where the roles and responsibilities are not so distinctly separate, spouses describe feeling isolated and drift¬ing without the equal balancing of their partner.
One clinician, who had worked with brain injury survivors for a number of years, estimated that up to 49% of the marriages end in divorce. It seems to be easier for parents to resume a parental role to their child than for spouses to assume the often necessary parental role. It is not unusual for a person’s parents or spouse to be in conflict about his/her care.
Children are especially affected by a person’s injury. Young children especially experience a lot of confusion about their parent. Often, children and the person with TBI become competitors for the caretaker's attention. Both older and younger children are likely to express their confusion and distress in obvious kinds of misbehavior. Social isolation can be a result of the person’s need for minimized stimulation as well as embarrassment on the child's part regarding his/her changed parent. Acting out, as indicated above, is often seen in children of survivors of brain-injury. Often times, high expectations are placed on children to also be caretakers of the survivor as well as other kinds of adult responsibilities. All of the aforementioned may combine to become the impetus for children to leave home early.
Extended families are often confused by the changes in the person with TBI and the immediate family. They, as well as friends, are not likely to understand why the person hasn’t returned to work since they look fine. They are also unlikely to understand the stresses that the family has been feeling and continues to feel. Well-meaning family and friends may often be very cheerful and upbeat when they are seen, which may communicate a lack of understanding to the family. These individuals may also have some definite ideas about what should happen with the person, which are not always based upon a clear understanding of the needs of the person and his/her family.
In closing, there are messages that families cannot hear often enough. Anger, frustration, and sorrow are natural emotions of people close to a survivor of brain injury. Caretakers must take care of themselves as it is unlikely that anyone else will take care of them. The caretaker must ultimately rely on his/her own conscience and judgment in conflicts with the person or other family members. Role changes are inevitable when a person has become dependent or changed. This can be emotionally distressing for the family. The family members need not feel guilty or inadequate when their care does not result in improvement. When it appears that the welfare of dependent children may be at stake, family members must explore the issue of divided loyalties and weigh the responsibilities. Although few emotional or practical management problems can be eliminated by counseling, counseling can help minimize the stress and maximize the satisfaction for most families. In addition, counseling can also be a source of helpful referrals, references, and information on brain injury.