Coping with Loss and Change After Brain Injury

Laura Taylor and Jeffrey Kreutzer, The National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care
Coping with Loss and Change

Brain injury often brings about drastic life changes for survivors as well as their families and friends. Survivors often find that they are less able to carry out responsibilities and daily activities. Activities that were once accomplished easily, often require a good deal more effort. Many survivors find themselves unable to work, drive, live alone, manage their finances, and do things alone. This loss of independence leads to frustration and sadness. They may also lose confidence in themselves. 

Family members may notice that their responsibilities have changed too. They may have to take on responsibilities that belonged to the survivor or other family members. Changes in responsibilities may affect family members’ ability to work like before or do things they enjoy. Some family members reduce their work hours or resign from their jobs to help care for the survivor.

Financial difficulties and worries about the future tend to be difficult for all family members. As a result of the losses and changes, many people have a mixture of feelings including sadness, fear, hopelessness, and frustration.

Without question, dealing with loss and change after brain injury can take a toll on survivors, family members, and their friends. Think about this question for a moment: How have you reacted to the life changes or losses? Check off the items below that describe you:

  • Feeling down, blue, or hopeless
  • Having crying spells
  • Feeling irritable
  • Feeling irritable
  • Feeling guilty or worthless
  • Wondering whether or lot life is worth living
  • Having difficulty falling or staying asleep, or sleeping too much
  • Experiencing low energy, getting tired easily
  • Eating a lot more or a lot less
  • Keeping to yourself
  • Not enjoying things like before
  • Feeling restless, having difficulty sitting still
  • Can’t stop worrying about problems or the future
  • Having difficulty making decisions, concentrating, or remembering things

Look over the items you’ve checked. The more items you check, the greater your distress and the more likely you need help. Talk with trusted family, friends, and professionals about the items you’ve checked.

Most people want to feel better and learn to cope with life changes, but don’t know how. We’ve talked to lots of survivors and their families to find out ways they cope with loss and change. Here are a few strategies that have worked for other people. Look over this list with trusted family, friends, or professionals and pick out which ones you think will work for you:

  • Realize that your feelings are a common, normal response to a difficult situation.
  • Be kind to yourself. Give yourself and others time to adjust.
  • Think about the future you want and the best ways to get there.
  • Appreciate the value of patience and persistence in reaching your goals.
  • Take one step at a time, set goals for each day.
  • Avoid thinking about and making comparisons to how things were.
  • Recognize there is a natural human tendency to worry and focus on the negative.
  • Learn to focus on your successes, strengths, and resources.
  • Recognize the good things in your life and changes for the better.
  • Focus on what you can do instead of what you can’t.
  • Be hopeful. Say positive things to yourself and others (e.g., “We will make it through this,” or “We’ve come so far.”)
  • Make a list of things you are thankful for and qualities you like about yourself. Refer to the list often.
  • Talk to and spend time with people who care about you.
  • Join a support group. Talk to others for support.
  • Build new relationships and improve old relationships.
  • Remember that others face similar challenges. Ask others how they deal with losses and changes.
  • Give up some old responsibilities when you take on new ones.
  • Allow yourself to ask others for help and support.
  • Remain active, try to do things you enjoy.
  • Distract yourself with music, a book, a movie, television, or another activity you enjoy.
  • Try to find new interests and activities.
  • Give yourself breaks and try to be patient with yourself.
  • Learn about treatments, resources, and recovery.

Remember, you must take care of yourself to effectively deal with the losses and changes you are facing. But, sometimes coping with losses and changes may be too difficult for one person to handle on his or her own. Research and experience have told us that depression is a common reaction to brain injury for wives (and husbands) and parents of the survivor. If you have concerns or questions about how you are feeling, talk with your doctor or a professional at a local hospital, mental health center, or church about ways to get help.

Posted on BrainLine June 19, 2009.

This column was written by Laura Taylor and Jeff Kreutzer from the VCU TBI Model System Family Support Research Program.

From the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care. Reprinted with permission. www.neuro.pmr.vcu.edu.

Comments (3)

True, but after 18 yrs sometimes loved ones walk away from this and you are alone. Just like how it is when we come into this world, it's how we go out.  I'm only 39, and I have two amazing children who are witnesses to my good times and the not so good ... they've seen family criticize me and their dad walk away from home because I am a lot to handle ... we live in a small area. I'm being honest with you and myself ... it's not easy and I've fought every step of the way ... I worry about the kids. Soon I may not remember them I barely remember when they were small as it is now ... support groups are ok but it doesn't heal the broken spirit and fear I do have. It does take so much out of everyone involved in an injury.

"Join a support group." That is so very important. Meeting with & talking with other survivors or their families or caregivers helps everyone as we navigate into our new world. Hearing or reading that "you are not alone" is not the same as a face to face meeting.

After 20 years, how do you continue the fight? Many of the listed items apply, along with loss of smell and most taste. It's a lonely ride that doesn't seem to end. @anosmic1