Brain Waves: UAB Traumatic Brain Injury Model System Newsletter Volume 17 | Number 2 | Page 2

LIFE AFTER TBI Caregiving for a Spouse or Partner after Traumatic Brain Injury Caregiving for a family member who has a traumatic brain injury (TBI) offers many unique challenges. This is the last of a 2-part feature on meeting those challenges. Part 1 was published in the last issue. It aimed to help caregivers find a balance between taking care of yourself while caring for a loved one. This is part 2. Here, the aim is to offer tips on managing some of the unique challenges of caring for a partner or spouse. What is known about caregiving after TBI? Research over the decades has led to improved survival rates for people with TBI. On the other hand, research into the impact of the TBI on a couple’s relationship has been slower to catch up. There is simply no clear guide on the key differences between couples that are and are not successful in adjusting after TBI. Here is a brief summary of what is known about caregiving after TBI. • People with moderate to severe TBI are more likely to need some level of long-term care when compared to someone with a mild TBI. • The level of care needed depends • • on the extent of the physical, cognitive, emotional, and behavioral impairments caused by the injury. The level of care needed is usually greatest in the early period after injury but often lessens over time. Caregiving for a spouse or partner is an expression of affection and commitment. It can be difficult even under the best of conditions, but it is even more challenging after a moderate to severe TBI. What can couples do to meet the challenges of caregiving after TBI? There are 4 core areas that can benefit caregivers and their spouse or partner in meeting their challenges. 1. Commit to Positive Change You cannot mentally and emotionally prepare for the aftermath of TBI. This is one reason it is harder to see positive things in your life instead of all the negatives. There are positives, and you can build on those positives to find happiness. It does not happen quickly, but you can get there if you commit to finding happiness and trust you will get there. 2. Learn about TBI As a caregiver, the TBI Model Systems Knowledge Translation Center (MSKTC) is your best starting point to learn about TBI. A lot of websites offer good information, but the MSKTC collaborates with TBI Model System programs to adapt knowledge gained from research into information that benefits people with TBI and their families. This means you get information from TBI experts. The MSKTC offers a suite of resources to help couples enjoy meaningful and fulfilling relationships after TBI. This includes factsheets and videos. Below are a few factsheets currently available from the MSKTC. These factsheets provide caregivers with educational information on health and wellness that most often impact day-to-day caregiving issues. Check back on occasion for additions and updates. • Understanding TBI • TBI and Acute Inpatient Rehabilitation • Cognitive Problems after TBI • Emotional Problems After TBI • Memory and TBI • Severe TBI Get Involved In UAB Research! Brave Initiative The University of Alabama in Birmingham (UAB) aims to improve the motor deficit of veterans who have sustained a traumatic brain injury. Potential participants must: • be at least 19 years old and 3 months post TBI; • have movement problems or weakness of the • • arms, but the ability to make at least some limited movements with the more affected hand; have no excessive pain; and be able to undergo MRI If you believe you meet the criteria above and would like to participate in this study, Go to the website, call 205- 934-9768, or email for more information. 2 Scale Up Project Evaluating Responsiveness to Home Exercise And Lifestyle Tele-Health (SUPER-HEALTH) This study evaluates the effects of an exercise program on improving pain, fatigue, physical activity, and physical function. The program is delivered through a tablet app in the convenience of the home using exercise videos. Criteria to Participate • Ages 18-64 • Mobility Impairment/Disability • WiFi Internet access in Home Participants receive a tablet and Fitbit to use during study and are eligible to keep all equipment at the completion of last study visit. Visit, call (205) 403- 5509, or email [email protected]. Of course, it is also important for people with TBI to learn as much as they can about the impact of their injury. One problem is that many people with TBI are not able to learn from standard factsheets because they have memory problems or trouble reading large blocks of text. Sometimes InfoComics are a better learning option for people with TBI. Here is a list of the educational InfoComics created by the University of Washington Traumatic Brain Injury Model System. • Understanding TBI (3 Parts) • TBI and Sleep • Emotional Changes after TBI • TBI and Headaches • TBI and Chronic Pain 3. Seek out Support Groups Caregivers may feel alone and isolated. You are not alone! Support groups were noted in the last issue as a great source for maintaining self-health. The same is true for learning to better understand and manage relationship issues. For couples and individuals alike, attending support groups can be one of the best things for a relationship. The Brain Injury Association of America (BIAA) is the best place to start looking for a support group near you. BIAA is a nation-wide program with more than 40 chartered state affiliates. Local chapters provide information, education, and support to individuals, families, and professionals affected by brain injury. Your local chapter will likely have a list of support group opportunities near you. Simply click on the state map to find resources in your area. There may be other organizations that offer services if there is no BIAA support group near you. Ask around or look here for other options. 4. Seek out Counseling TBI affects almost every aspect of your life when it happens. Life is normal and routine one day. The next day your life is turned upside down. Counseling helps you process your thoughts and feelings along with helping you cope with, and adapt to, challenges of finding a new normal after TBI. This can include helping each person adjust to individual issues and helping both people work together to adjust to their issues as a couple. Here are some common areas of focus during counseling. Grief Grief is the pain that comes with a loss. Grief after TBI often centers around the losses of what was once “normal.” Here are only a few areas of loss that couples face. • After a loved one is injured, their spouse or partner often express notions like, “It was like seeing a different person or a stranger” and “There seemed to be no emotional connection when seeing me.” • People with TBI often express frustration with the loss of independence they once had. • The physical relationship, including sex, may be different. Expectations Counseling can help couples adjust their expectations to set realistic goals as opposed to unrealistic goals. Here are a few examples. • Couples may expect life after injury either will, or should, return to the way it was before injury. It is usually not the same. • Couples may expect that they can quickly return to a new normal. Most often, it takes time and effort to find a new normal. • Couple (particularly a caregiver) may expect to completely resolve all problems over time. It is more realistic to lessen the impact of problems and how often problems happen. This means adjusting to the cognitive, physical, emotional, or behavioral challenges due to a TBI is in many ways a life-long effort. Communication Open and honest communication is the life-blood of a healthy relationship. Yet, couples are often hesitant to maintain open communication after a TBI – the time when it is especially important. Counseling can help couples rebuild their trust in open and honest communication. Counseling also help couples adjust to more effective communication styles after injury. Most couples communicate both directly or indirectly before TBI. But indirect communication is often not as effective after TBI. People with TBI often have difficulty picking up on hints, nuances in speech, tone of speech, sarcasm, and body language. Instead, direct communication is often a much more effective style. Here are a couple of examples of direct verses indirect communication. • “The trash is full” is an indirect suggestion to take out the trash because it is full. • “Take out the trash” is a direct statement to take out the trash at this time. • “It is almost time to get groceries” is an indirect suggestion to get ready to go get groceries or will soon be leaving to get groceries. • “Let’s get in the car and go to the grocery store” is a direct action to take to go to the grocery store. Solve Problems You cannot avoid problems, and caregivers who have good problem solving skills tend to have a higher quality of life. Counseling can help you improve your skills. Here is the basic approach to solving problems. • Figure out what the problem or challenge is. Break big issues down into smaller, more manageable parts if needed and tackle one problem at a time. • Brainstorm— Think about all possible solutions and get input from family and friends. If another person is involved in the problem, make sure that person helps to brainstorm for solutions. • Choose the solution you think will work best. Make sure the solution is acceptable for everyone involved. • Try your solution to learn if it works. • Evaluate results— You have solved your problem if your solution works for everyone. If not, brainstorm another solution and try it. Most solutions do not work perfectly the first time. Trying again and adjusting plans are keys to success. UAB Traumatic Brain Injury Model System Information Network 3