A good article for families dealing with traumatic brain injury –
The family as well as the head-injured person is traumatized when a severe head injury occurs. The person they depended on and loved is no longer the same. The family is placed under extreme stress to assume unaccustomed roles, which may include caregiving, becoming breadwinners, and advocating on behalf of the injured person.
This, along with the possible changes in physical functioning and personality suffered by the person with a head injury, may place an unusual burden of stress on members of the family. It is not uncommon for family members to occasionally react in ways that others do not understand. Some family members may choose to immerse themselves in efforts to help the injured family member while other family members may be emotionally unable to cope with the situation and need to distance themselves from trauma.
After a person suffers a severe head injury, the family reaction will be ever-changing as their expectations change. Over the course of the hospitalization, rehabilitation and reintegration into the community, they sense the “loss” of the person they once knew and loved and begin to know and love the person who may be altered somewhat as a result of the trauma. Mourning the loss of that person is important to emotional well-being.
Most people go through a grieving process which is a natural and normal part of accepting what has happened. These stages include:
Denial: “No, this couldn’t have happened to us…”
Anger and frustration: Family members may feel anger towani anyone who could be seen as the cause of the injury. They may feel victimized and frequently develop a hostile attitude directed toward those professionals who are working with the injured person and cannot “fix” the problem.
Depression and withdrawal: Family members may lack the motivation to care for themselves, physically and emotionally. They may feel isolated when friends, who were very supportive initially, become less involved as the process of restoration of the injured person drags on. With few social contacts, the family may become more hopeless and less functional.
Acceptance: The family, over an indefinite period of time, should begin to accept the changes that have occurred in their loved one and begin to heal. The process of mourning the loss of the person may confuse the issue of acceptance, but ultimately both the family and the person with the head injury must accept what cannot be changed and learn to get on with a life of the highest quality possible.
The following is a list of guidelines to help family members minimize their stress.
Family members should:
Maintain contact with friends and activities that they enjoy.
Work out a rotating visitation schedule with other family
members. This will allow needed time for themselves.
Be aware of the needs of other family members. They need
to know that they have not been forgotten.
Ask and accept help from others. This assistance could be such activities as running an errand, mowing the lawn or bringing in a meal.
Express feelings and do not try to keep everything inside. Talk to other family members, the social worker, a minister, a case manager, or anyone with whom they feel comfortable.
The patient’s family should be involved in the recovery, rehabilitation and readjustment process to the greatest extent possible. The primary role of the family and/or significant others is one of advocacy on behalf of the person with the head injury.
No family is prepared for this unfamiliar task which might include a commitment of time and effort that is often difficult to maintain for many reasons, the least of which is economic. They may be overwhelmed with uncertainties about the nature and extent of the injury, the need to understand how the injury will affect the person and the need to know how to plan for the future.
One of the first tasks the family can perform is that of family historian, to describe the injured person for the benefit of the health care professionals so that they can include this information in their interpretation of what is occurring with the patient. After all, the family knows this person better than anyone else.
Members of the family should ask the staff for guidance in working with the patient. This might include asking for information about equipment and procedures being used, determining how the family could enhance the therapy which is being delivered by the professionals, and requesting direction to other departments of the hospital that provide assistance (e.g., social services department, family education coordinator, etc.).
Throughout the recovery, which may extend over an undetermined length of time, family members can be supportive even when they are unable to be at the patient’s bedside. Their advocacy efforts can play a major role in securing benefits to which the patient is entitled. These benefits may involve securing financial, insurance and employment information necessary in determining eligibility for various benefits and programs. It might include contacting the authorities and collecting information from the accident scene, in the event of a possible litigation; gathering information about traumatic head injury to assist with the advocacy; and joining with other families of persons with head injuries for mutual understanding and support.
Family members must realize that even the best medical care is incomplete without the loving concern and encouragement that comes from the patient’s family There may be years of hard work before returning to pre-injury activity and possibly physical or mental disability that is never fully recovered. Families of persons with head injury must adjust to the fact that the recovery process is a slow “labor of love” for everyone involved. The patient must reach a certain level of accomplishment in each recovery stage before the next treatment will be beneficial. During this painstaking process it is natural for anyone to become impatient. Family members must not feel guilty about these feelings, but must come to understand that a task cannot go any faster than the injured brain. Simple tasks must be mastered before the more complicated mental and physical skills can be re-learned. The family members’ role is to be as understanding as possible while still tending to their own needs and to support the individual’s progress with praise and acceptance.
The role of the family will change with an extended rehabilitation process and the family members will need to adjust and adapt to these changes. The more severe the injury the more drastic these changes will be. All affected persons play changing roles and many will experience periods of isolation, loneliness, grief, guilt and helplessness. In time and with the support of those who care, all survivors and their families can find laughter and good times again.
Families of individuals with head injuries must realize the inescapable effects on and changes within the family structure. If the head-injured person is the income provider, there will likely be changes in marriage/family relationships, income, economic stability and social status. One or more family members may be forced to assume the role of provider. When the head-injured person is the homemaker, role revision again takes place. Duties and responsibilities must be shared by other family members.
When the injury is severe, parents of a head-injured child are faced with loss of dreams, in addition to the eventual realization that life-long care may be necessary. They must tackle the task of considering how to provide vocational, emotional and financial support for their child for a lifetime. Family and friends need to work together to help the head-injured patient toward maximum recovery and to reduce stress on the people carrying the greatest personal burden.
This may be a time of loneliness and isolation for the family. Family members spend hours at the bedside with the patient in a strange city, or even in their hometown. The worry and fatigue that families experience will leave little time to interact with others. Also, many people in the community are unfamiliar with head injury and this often leads to gradual withdrawal of contact and support to the family on their part. Families often need support from those who understand the pain and loss they are suffering.
Family members’ ability to cope is very important and often professional support and guidance can be helpful. Also, support groups are available throughout the state, depending on the type of injury, for family members who wish to talk and to interact with others who have gone through similar experiences.
Information about support groups and resources to help families cope may be obtained through the local Disabilities and Special Needs Boards.