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Nancy Hsu, Jeffrey Kreutzer, and Jennifer Menzel, The National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care
Family life often changes dramatically after brain injury. Changes may persist for months or years. Look at the quotes from family members that follow this paragraph. Perhaps you’ve heard your family members make the same comments. Perhaps you’ve said these things to yourself.
“Everything has changed since my son’s injury. I haven’t had a minute for myself.”
“I’ve missed my last two doctor’s appointments because no one else could get him to his physical therapy appointments.”
“I am exhausted. We can’t count on anything anymore. Nothing has been the same since the accident.”
After TBI, the sole focus of rehabilitation staff and family members is on the needs of the person with the injury. Because there is such a great focus on the patient, family members often lose sight of their own well-being and how their lives have changed.
Research shows that family members who serve as caregivers commonly face many difficulties after injury. On an emotional level, feeling overwhelmed and frustrated is a common experience. Many caregivers are upset by their loved one’s suffering, loss of abilities, and need for complex medical care. Aside from financial concerns, many people worry about their ability to provide quality care and whether family life will ever return to “normal.” Feeling worn out by the increasing number of responsibilities they have taken on is a common experience.
There is no doubt that family members have an important role in rehabilitation and recovery. As a family caregiver, you may be wondering how you can stay healthy and emotionally strong in the face of so many challenges.
Recognizing how your life and the lives of other family members have been changed by injury is an important first step in recovering emotionally. We have developed the Family Change Questionnaire (FCQ), a tool to help people recognize and think about the changes. The FCQ has 17 questions relating to topics such as feelings at the time of injury, fears about long-term injury effects, and the emotional reactions of other family members. The FCQ also asks people to think about changes in their responsibilities, roles, transportation needs, finances, and plans for the future.
The FCQ, presented below, can be used in several different ways. We encourage you and your family to fill in the questionnaire and discuss your answers. Usually, the questionnaire can be completed in 20 minutes or less. If you are in counseling, your counselor can use the questionnaire as a tool for individual, group, and family sessions.
- How did you feel when you first learned that your injured family member was injured?
- How did you feel when you realized that your injured family member was going to live?
- How did you feel when you began to recognize that the brain injury might have long-term effects?
- How have other family members reacted to your injured family member’s injury?
- Have you made yourself available to provide more emotional support to your injured family member and other family members? If yes, how so?
- Before the brain injury, what were the most important plans you had for your future and your family’s future?
- How has the brain injury affected your plans for the future?
- What responsibilities do you now have to care for your injured family member?
- In what ways do you help your injured family member get back and forth to appointments?
- Do you attend therapy and doctors’ visits with your injured family member? Please explain.
- Do you help your injured family member with filling out insurance, registration, medical, and disability forms? Please explain.
- Do you help your injured family member get authorizations for medical and rehabilitative care? Please explain.
- Have you taken over responsibilities from your injured family member or uninjured family members? If yes, what new responsibilities do you have related to caring for the house, maintaining the car(s), working, paying bills, and caring for children?
- Have you changed your work responsibilities or hours since the injury, so that you could help your injured family member or the family? Please explain.
- How has your family’s income been affected by the injury?
- What new expenses are you facing because of the injury?
- How have your sports, social, and recreational activities changed because of the injury?
In our experience, the FCQ has been a useful tool, helping people understand how the lives of more than one family member has been affected. Discussing your answers to the questions will help improve understanding and communication. Regular family discussions about feelings and ideas can undoubtedly strengthen the family support system and help people successfully overcome challenges on the road to recovery.
From the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care. Reprinted with permission. www.neuro.pmr.vcu.edu.
Jeffrey Kreutzer, PhD,
Jeffrey S. Kreutzer, PhD, ABPP, is the Rosa Schwarz Cifu Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University (VCU), Medical College of Virginia Campus. There, he is also a professor of Neurosurgery and Psychiatry. Dr. Kreutzer serves as Director of Virginia's federally designated Traumatic Brain Injury Model System and coordinates VCU Health System outpatient services for families and persons with brain injury.
For the last two decades, he has been active in implementing empirically based vocational rehabilitation, psychological support, cognitive rehabilitation, and family support programs.
Dr. Kreutzer has co-authored nearly 150 peer-reviewed publications, most in the area of traumatic brain injury and rehabilitation. Co-Editor-in-Chief of the international journals Brain Injury and Neurorehabilitation, he has also published a dozen books focused on topics including vocational rehabilitation, community integration, behavior management, and cognitive rehabilitation.
Currently, he serves as Editor-in-Chief of the soon to be published by Springer, New York, Encyclopedia of Clinical Neuropsychology.
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