Living with and Having Mixed Feelings About a Survivor Who Is Very Different

Jeffrey Kreutzer and Lee Livingston, The National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care

Multimedia

• Produced by Victoria Tilney McDonough and Brian King. This marriage and family therapist talks about common issues after TBI. Transcript of this video. Caron Gan Talks About Educating Families About Behavioral Changes
• Produced by Victoria Tilney McDonough and Brian King. This marriage and family therapist talks about common issues after TBI. Transcript of this video. Caron Gan Talks About Behavior and Personality Changes After TBI
• BrainLine talks with Jason and Susannah Ferguson about Jason's traumatic brain injury which he suffered in a car accident. The couple discusses how the injury has affected family life, their marriage, and outlook on life. Produced by Victoria Tilney McDonough and Brian King at the 2008 Williamsburg Brain Injury Services Conference. Transcript of the video. BrainLine Talks with Jason and Susannah Ferguson About Family and TBI

Part of the Greatest Challenges Families Face series

Changes that normally follow brain injury are hard to comprehend and accept, especially for spouses and parents. Spouses miss having a supportive partner and someone who can share responsibilities. Difficulties are compounded when family members begin to fear that some changes may be permanent.

The effects of brain injury are complicated and hard to understand. Family members are deeply troubled when they first see the injured person at bedside in the hospital. The physical changes are obvious. Fortunately, many physical problems resolve in the first three to six months after injury. However, changes in personality and emotional well-being are more of a long-term challenge to everyone’s well being.

There are a variety of factors that help explain why it is so difficult to live with this “new” person.

• Changes that follow brain injury are drastic, unwelcome, and unexpected.
• People with brain injury often have sudden changes in mood, symptoms, and emotional outlook, which may be confusing to others.
• Change continues for a long time after the injury. Natural recovery, therapy, emotional healing, changes in motivation, and getting older are all factors.
• Some changes are hard to recognize. At times, your family member will seem like his or her “old” self. At other times, they may seem completely different.
• Grief. You miss the “pre-injury” person and the times you spent together. Grieving is painful for not only you, but for other family members as well.
• Feeling cheated, angry, or disappointed. Something very valuable to you was suddenly taken by the injury due to no fault of your own.

People with brain injury need to focus on getting better. The person with the injury needs your help to get better and they are less able to help you.

The Change Recognition Questionnaire. To find out how much you have noticed differences in the person with brain injury, answer the questions below.

1. What changes have you noticed in the way the injured person treats you?
2. What changes in the injured person are most upsetting?
3. What can you do to encourage the injured person to change for the better?
4. What familiar qualities do you still see in the injured person?
5. Are there new qualities that you can appreciate?
6. How are you or other family members treating the person differently?

Look over your answers to see how the injured person has and has not changed. There may be a number of positive qualities you’ve failed to notice before. You may also find that treating your family member like he was before the injury changes his behavior for the better.

How can you deal with mixed feelings about a survivor who is very different? We’ve talked to many successful couples and families to find out ways they manage after brain injury. Here are a few strategies that have worked for spouses, parents, and others close to a person with brain injury. Look over this list and pick out which ones you think will work for you:

• Talk to and get to know this “different” person. You can start appreciating changes in the injured person by talking with them. Finding out that your loved one hasn’t changed entirely can be quite reassuring.
• Understand that you are probably acting different and treating the survivor differently, too. Without meaning to, many family members treat the injured person as if she were a child needing constant care. Treat your loved one as you would want to be treated.
• Try to do things that you used to enjoy doing together. Make a date to go out as a family. Make a reservation to eat at your favorite restaurant, watch a sporting event, or attend a music recital.
• Communicate in positive and constructive ways. When under stress, we often focus on what’s wrong instead of acknowledging what’s right. Try to balance the negative with the positive. Notice good things the injured person does and offer a lot of praise.
• Realize that frustration and irritability are common feelings after injury. Avoid taking things personally when they are not.
• Set firm limits about the way you and other family members are treated. Insulting, threatening, or hurting others is not okay.
• Talk to other family members about their feelings. Find out what makes them happy, sad, worried, or angry. Talk these feelings out as a family.

Remember, the most important thing you can do to deal with mixed feelings about living with a “stranger” after brain injury is to be patient. Injury-related changes that occurred were sudden, and you did not have much time to adjust. Getting better after brain injury is a long-term process. Over time your family member will seem more familiar, understandable, and predictable.

For families needing help adjusting to post-injury changes, there is a program which may be helpful. The TBI Model System Family Support program at Virginia Commonwealth University provides counseling for survivors and their family members (spouses, parents, siblings) or friends. People in the program will learn ways to deal with challenges commonly faced by families after brain injury. If you or someone you know may be interested in the family counseling program, feel free to contact us so we may provide you with more information.