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Industry: Email Alert RSS FeedEmotional changes following brain injury: psychological and neurological components of depression, denial and anxiety
Journal of Rehabilitation, April-June, 1991 by Carol Armstrong
Fears about the patient's present and future preoccupy the stressed relatives. Present concerns may be about poorly controlled behavior, the possibility of seizures, and the physical and mental exertion required to care for the disabled family member. Ambiguity naturally leads to anxiety. It is no wonder that family members have difficulty trusting professionals under these conditions, or that they persevere with their own judgments.
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Although families differ in their acknowledgment of the magnitude of problems, they all feel stressed when pondering the patient's future. Unanswered questions and uncertainties far outweigh known problems until long after the injury, often several years later. In the Oddy, Humphrey and Uttley study (1978), 25% of relatives reported an illness in themselves during the last six months of the first year after the injury, and these illnesses, in the majority, were psychosomatic or emotional in nature. Overall, this study found that the stress on relatives as a group showed no sign of diminishing over time.
Lezak (1978) describes the stresses upon families in a way that makes more clear the nature of the stressors, as well as the ways we can help family members.
Caretakers may feel guilty as a result of an expanding consciousness about the patient's multi-faceted problems without the knowledge or resources to provide solutions. Family members often feel guilty about not being able to protect the patient from physical and especially psychological pain. The problems endured by the family usually have the greatest effect upon the family member who has the primary responsibility for the care of the patient (Lezak, 1978).
The caretaker's personal needs, interests, and even individuality may become submerged with the needs of the patient. For example, more than one family has been known to turn the living room of their home into the bedroom of a non-ambulating patient. Also well known are family members who develop new relationships based on the suitability of the relationship to the patient's needs.
Family members may find few people or no one who can understand and communicate empathy (Lezak, 1978). This is the foremost reason why family support groups are vital, as they provide a setting where each member is understood, supported, and where information can be found. Families are dealing with injured individuals who may behave in unpredictable and embarrassing ways, who may become agitated or confused by unfamiliar places or persons.
The loneliness of family members brings to focus the dynamics of the remaining healthy family members, and tests people's loyalties and empathies. Family members may feel "abandonment by the extended family" (Lezak, 1978, p.593). More distant or even closer relatives may withdraw over time as requests for occasional help and the patient's chronicity become apparent.
Without the day to day experience of the patient's irresponsibility, impulsivity, or other problems, or of the duties, other relatives as well as we, can easily misperceive the caretaker as being too protective or restrictive, or too neglectful or uncaring. Examples of this are unending, and even those professionals who are most committed or most caring can make these mistakes. Only those who have experienced the daily vigilances of care and worry are likely to be fully grateful and emotionally supportive of the family's accomplishments in fostering the patient's improvements.
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