Caregivers Of Traumatic Brain Injury Survivors

Mary recounted the immense relief and gratitude she felt once Joe finally emerged from the coma. She energetically began making plans to assist Joe with his recovery and get their lives back on track. Once Joe returned home, Mary assumed her role as his caregiver with a positive, can-do attitude. Initially alarmed at the many drastic changes she saw in Joe’s personality and behavior, Mary trusted that his impairments and unusual behaviors would clear after a while if they worked diligently. “If his survival was a miracle, then surely he would have a miraculous recovery,” she thought.

After three months, however, Mary left her job because Joe’s problems with confusion and memory had not subsided and he required closer supervision. The medical appointments also seemed to be endless and Mary was becoming increasingly anxious. Now, a year and a half after Joe’s injury, experiencing financial insecurity, and their relationship marked by constant conflicts and arguments, Mary shared that she felt terrified and hopeless about the future. Her “old Joe” had not returned despite her best efforts.

The Reality of Caregiving

Mary and Joe are fictional characters, but the situation described above is all too real for many couples recovering from the effects of TBI. A wide variety of confusing and frustrating physical, cognitive, emotional, and behavioral changes accompany TBI that not only affect the survivor, but their caregivers and entire families. Because no two brain injuries are alike, it is impossible to accurately predict the length of recovery, and TBI-related changes can last for months or for a lifetime.

For caregivers, the stress of dealing with changes in their loved ones is magnified by changes in roles and added responsibilities that can quickly become overwhelming; exhaustion, worry, inadequate resources, and the demands of caregiving are constant companions. Caregivers I meet with frequently report that they are angry and frustrated because life revolves around caring for the survivor and they themselves get no assistance.

They are sad because they’ve lost their dreams and aspirations and afraid that their loved ones will never fully recover, which makes for an uncertain future. If you are a caregiver and these emotions seem familiar, the good news is that there are actions you can take to ward off these negative emotions to ultimately increase your wellbeing.

Focus on Today’s Successes

Adopting a new definition of success may be one of the most important actions you can work towards. Many caregivers expend enormous time and energy in an effort to help their loved ones return to their pre-injury selves. This is a noble endeavor, however, with TBI, this sets-up caregivers for experiencing disappointment, failure, fear, and hopelessness every day their loved ones do not meet expectations or show movement towards their pre-injury level of functioning.

In my work, I challenge caregivers to instead define success by all the gains that have been made since the day of discharge. These gains are usually quite monumental given that many survivors were on death’s doorstep and may have had to learn to walk and talk again after the injury. Redefining success in this way can help you shift your daily focus to gains and feelings of success and away from feelings of loss and perceived failures.

Set SMART Goals

Setting reasonable goals is another action you can employ to reduce distress and promote feelings of success. Brain injury brings on a huge variety of new, frightening problems in addition to those of normal life. I often hear caregivers express that there are too many things to keep track of, resulting in nothing getting done correctly, if at all, unless they do it themselves.

When I ask caregivers to list their goals, common answers include: “to get my spouse to do what I ask,” “to get my spouse better,” or “to get life back to normal.” It is likely that caregivers will continue to be frustrated and alarmed by a lack of progress if goals like these aren’t broken down into smaller goals that are:

• Specific
• Measurable
• Achievable
• Realistic
• Timely

I use the acronym SMART to remember the components of reasonable goal setting. With a little practice, setting reasonable goals that support success and positive outcomes becomes second nature. It not only assists you in accomplishing many of tasks, but also allows for setting very concrete, clearly communicated goals for your loved one, whether it’s accomplishing household chores, making appointments, or conducting rehabilitation exercises.

Develop a Plan to Reduce Stress in Your Life

It’s also helpful for you, as the caregiver to develop a stress management plan to reduce stress in your life. This includes three parts:

1. Identify Stressors: You must first become aware of the sources and early signs of your stress. To do this, I encourage caregivers to track their stresses and check-in with themselves to identify any early signs of stress they might be experiencing. By taking your “stress temperature” in this way throughout the day, you can maintain better awareness of stress-causing events that might be avoided or rescheduled, such as an oil change for the car, family visits, or a doctor’s appointment.
2. Review a History of Success: I also urge you to examine how you have managed stress in the past, both successfully and unsuccessfully. In high stress instances when it is impossible to “reschedule life,” caregivers are then better able to employ skills they know have worked previously. This adaptation can be used as part of a short-term stress management plan, along with stress relieving methods like deep breathing for five minutes, listening to soothing music, or visualizing a favorite place or experience.
3. Establish a Weekly Anti-Stress Goal: A final component of a stress management plan is to develop at least one activity that you can accomplish each week that can serve as a long-term buffer against stress. Giving yourself permission to engage in pleasurable and relaxing alone-time, such as listening to a guided visualization or meditation, engaging in a favorite hobby, exercising, or calling friends, is as important as any doctor’s appointment and serves as a buffer against stress.

Reach Out For Support and Community

Reaching out to others and giving yourself permission to ask for help may be one of the most important actions you can take to ward off negative emotions such as fear, anger, and sadness. Many caregivers have lost track of support networks they engaged with before their loved one’s injury, thinking that no one can really help since they don’t understand the dilemma of caring for someone with TBI. In my experience, this is not true.

Here are some ideas for building community and support:

1. Other Caregivers of TBI: Others facing the same challenge are often eager to have an opportunity to meet with another caregiver to “compare notes” and offer strength and encouragement either in person or online.
2. Adult Day Care: Many faith communities gladly offer adult day care and other respite services for caregivers.
3. Brain Injury Support Groups: Brain injury support groups are another excellent resource that should be explored. There are a variety of formats for these groups; some are targeted for caregivers, some for survivors, and some are aimed at couples. State-level brain injury associations maintain lists, descriptions, and topics for these meetings The Department of Veterans Affairs has a toll-free veteran caregiver support line at 1-855-260-3274, and non-profits like the American Legion and the Wounded Warrior Foundation also have resources for military families. Many caregivers have found hope and encouragement in these meetings by engaging with others on similar paths and learning new ways of coping with brain injury.

There is a Way to Live a Happier Life

It is unfortunate that miraculous stories of survival do not equate into tales of miraculous recovery after TBI. Despite the story of Mary and Joe being fictional, the feelings and challenges experienced by you and others caring for a survivor of TBI are real. Although the suggestions offered above will not speed the recovery process, you can improve the quality of your life by your definition of success, setting reasonable goals, developing a stress management plan, and reaching out to others. I encourage you to give these activities a try in an effort to move forward to create a life free of depression, anger, and anxiety and hopefully, full of joy and contentment.