These are important tips that can be shared with people who have experienced a severe traumatic brain injury, and their families:
1) Stay positive. The way you talk and think about your recovery affects the way you feel about it, so it’s important to have a positive attitude. Always remember that you are a survivor and a “recoverer,” which will help you keep your eye on the ball and not give in to dark days. As someone who is going through a recovery and rehabilitation process, you more than likely have grit and determination, two factors that will help in your recovery. Brain changes in TBI can actually lead to decreases in motivation and goal-directed activity in some cases. Realize that your brain is doing this but that you don’t have to be defined by it. There are many people out there who have experienced a brain injury, and have gone on to have success related to their job, school, and personal lives after brain injury. You have probably heard that recovery or learning to compensate for difficulties can take time, which is very true, so focus on gradual improvements. Pay attention to what you are telling yourself, which impacts how you feel.
2) You are not alone. There are many people out there like you, who are getting help at military treatment facilities or VA hospitals or civilian hospitals as they recover from a TBI, so remember that you are not alone on your journey towards healing. There might be people in a group therapy setting who want to learn from you, that you can learn from, or who find it helpful to be in a room with other TBI survivors (please check the Brain Injury Association of North Carolina’s website for a list of these support groups: http://www.bianc.net). It never hurts to ask what therapies are out there. Start with your primary care doctor, rehabilitation medicine doctor, or a mental health provider, or the Brain Injury Association of North Carolina; they may know what resources are available in the hospital for people who have experienced brain injuries. There are many psychologists out there who are waiting to help, and who enjoy working with people with brain injuries!
3) Think like a detective. Become Sherlock Holmes and start deducing what causes your symptoms and makes them better or worse, without ruminating about them. For example, are your memory problems more severe when you are tired or after drinking alcohol? You can keep track of your memory lapses including what led up to the memory lapse and what helps you redirect your focus and get back on track. If you can track it, you can better understand it to try and change it. If you can name the memory problem, you can tame the memory problem, some say. All too often people feel overwhelmed by their memory problems, but we know that one coping strategy is to isolate each memory problem, make a list, and attack one problem at a time (like long distance running, where you think about “this mile only”).
4) Brain injuries are like fingerprints, and each one is different. Your recovery can strongly depend on whether professionals say your injury is “mild, moderate, or severe,” which depends on how long you were unconscious and other factors occurring at the time of injury. While almost everyone recovers from a single concussion or mild brain injury within days, the time it takes to heal also depends on the number of brain injuries one has experienced in a lifetime, and other conditions that may exist. It is really important to have a neuropsychological assessment that also includes rehabilitation recommendations. This will help you and your family understand the severity of your injury, your strengths and weaknesses as they compare to others your age, your prognosis (that is, whether your functioning is expected to return to pre-injury levels or not) and how your brain functioning compares now to what your brain was like before the injury. You will also learn about the cause of your problems, which guides treatment recommendations. Is everything you are experiencing due to TBI, or could there be other factors like attention deficit/hyperactivity disorder, a learning disability, or post traumatic stress that are contributing to memory problems? The assessment provides direction for vocational and educational choices, as well as day to day living. Sometimes the assessment can be helpful in developing school or work accommodations that employers and educators can implement for you (like taking an exam in a quiet room). I have witnessed this assessment as having great therapeutic benefit for the affected individuals and family. During the assessment the neuropsychologist has a chance to help individuals understand behavior and personality changes that might come after brain injury (such as being more rigid, depressed, or angry/impulsive, as some individuals experience), and what might be caused by the TBI versus other causes.
5) Relaxation strategies are very beneficial to people diagnosed with TBI. They promote readiness to learn by relieving anxiety, which interferes with attention and concentration after TBI and will pretty much make symptoms related to any neurologic condition worse. You could do some brief relaxation techniques and then try to filter out both external and internal distractions before starting a task. This is because much of what people attribute to memory problems is actually due to significant attention and concentration problems caused by TBI and/or stress. Mindfulness meditation has been repeatedly shown to decrease worry and there is now some good initial support that it improves attention and concentration, too.
6) Manage your stress. Stress literally causes changes in brain functioning, particularly memory and attention functioning. In addition to TBI, as an active duty service member or veteran, there is the possibility of post-traumatic stress, combat stress, and even the stress of military day to day operations on shore duty, which frequently make memory and attention problems worse. I have seen stress make it so that it is difficult for people to take advantage of brain injury assessment and treatments. For individuals with a milder brain injury, people can focus on treatment of combat and other stress before beginning treatments that directly focus on memory and concentration, since many people report that with improved stress management they have improved memory and concentration! Also, stress that those with TBI may be experiencing can cloud the ability, as a professional, to assess for the effects of mild TBI because once you are more than several weeks post-injury, less severe forms of TBI can have a lower “signal strength” in terms of impact on memory and attention than the cognitive effects of PTSD, depression, and sleep disruption. Dr. Jennifer Vasterling at the VA Boston Healthcare System has written much about the effects of stress (particularly post-traumatic stress) on the brain (particularly on memory and other cognitive functioning) – newer and exciting research!
7) Develop personal mottos or key words that cue you to stay on track or complete tasks. These mottos help trigger your memory about what you need to do. Some examples I have seen used are, “do it, write it, or forget it,” “be here now,” “stop, relax, refocus,” and “KPW” (for keys, phone, and wallet, which I use personally when leaving the house). Lash & Associates Publishing publishes a helpful tip guide for people with brain injury which includes a number of great memory tips; this is available at http://www.lapublishing.com and is authored by an expert in the cognitive rehabilitation field, Dr. McKay Sohlberg.
8) Keep your family and loved ones involved in your recovery process. Family members play a critical and often under-appreciated role in recovery after brain injury. TBI doesn’t just affect the service member: it involves those close to them who may also be going through a grief and acceptance process in coping with changes. Family members can read about the concept of “ambiguous loss,” where an individual is physically present but interpersonally not the same. These are some of the most difficult losses to work through. There is an excellent workbook by Drs. Janet Niemeyer and Robert Karol called Overcoming Grief and Loss after Brain Injury. There are a number of communication strategies and environmental modifications that can be made to reduce the likelihood of problems in communicating with people with brain injuries. Knowledge is power, and many benefit from reading. Two books I’ve seen that have been of help are “The Stranger in Our Marriage: A Partner’s Guide to Navigating Traumatic Brain Injury” by Dr. Colleen Morgan, and “Brain Injury Survival Kit: 365 Tips, Tools, and Tricks to Deal with Cognitive Function Loss” by Cheryle Sullivan.
The motto “cue, don’t do” for the family with a member who has brain injury can be a good reminder. To prevent caregiver burnout, it will be critical for the caregiver to take care of himself or herself in what may be a new way, which often means that you, the caregiver, need to remember to take some time to do what you need to do for you as a person (self-care). There is a free guide called “Taking Care of Yourself While Caring for Others” and other similar booklets available through the Defense and Veterans Brain Injury Center’s website at http://www.dvbic.org/material/taking-care-yourself-while-caring-others. It is can be important for family members to remember that the person with a brain injury may not necessarily be behaving in a certain way or being intentionally annoying but because of their injury, in some cases their brain does not have the same controls it once had. One tip caregivers find helpful is to keep sentences short (speak as if you are throwing a bunch of commas or periods into your sentences). This allows the brain of the injured person time to process what you’ve said since speed of thinking tends to be slow after brain injury (that’s why the person also might not remember what you’ve just said).
Many families have found counseling to be vital in adjusting to brain injury as a couple or family. While rehabilitation psychologists often consider this a specialty area (a provider you can ask about), mental health providers more generally are now well-versed in working with families affected by TBI as a result of the recent wars, and are here to help.
9) Ask whether and when cognitive rehabilitation would be of benefit. This is a treatment used to help individuals compensate for memory, attention, and other thinking problems.
If you are not able to be independent (which can be more frequently seen after severe brain injury), recovery is a team endeavor involving the full court press. Around the country we are seeing residential (inpatient) as well as intensive outpatient programs for individuals with TBI. These programs are focused on accurate diagnosis and rehabilitation, and help people find strategies to compensate for the problems associated with TBI. There can frequently be logistical issues in attending these programs, as they frequently require a team of rehabilitation professionals from different disciplines to deliver the services in a larger, more urban medical center setting.
For those who are affected by a brain injury, please remember you are not alone and there are so many resources and strategies to help you better understand and compensate for brain injury, and to aid you and your loved ones along the journey to recovery. Assessment and treatment for TBI are available, and while technology and resources can open the door, you have to maneuver through it!