Relationships After TBI

[Rosemary] "Which rules are we playing?" It's such a simple scene--a husband and wife playing a game after dinner, teasing each other, laughing. For Rosemary and Hugh Rawlins such an evening was a long time coming. The ability to interact like this was destroyed in Hugh 10 years ago when a car crashed into his bicycle at 50 mph. [Hugh] It was very severe. The people in the EMS said that I had a 1% chance of making it back. The doctors at MCV Hospital in Richmond, Virginia, did everything they could to save Hugh including removing part of his skull to make room for the brain to swell. And then he wakes up from the coma, and he looks so different--not at all like himself. He can't really speak. It's just frightening. Rosemary and Hugh faced months of physical therapy and occupational therapy for Hugh's traumatic brain injury, or TBI. It was a long, hard slog, but it was really only half the battle. One of the things that's happened over the last 10 years is that the survival rate and ability to care medically for patient's with brain injury has improved very significantly. Dr. Jeffrey Kreutzer is a neuropsychologist and family therapist at Virginia Commonwealth University. He's been studying the impact of TBI on relationships for over 25 years. Where we haven't come a long way, and where we're focusing now is on this emotional and psychological recovery. Working and maintaining quality marital relationships. Hugh had gone from being Rosemary's best friend and partner to practically a stranger, and it was devastating. People would say, "It's such a miracle that Hugh survived the accident." And I would think to myself, "I don't know if he did." He couldn't connect with me emotionally at all. His eyes were very vacant, very blank. He didn't speak at all like himself; sort of very slow, staggered, kind of speech. It was pretty terrifying. This was the period of time--it was over a period of months-- that I felt like I had truly lost him. Hugh's memories of that time reflect that emotional disconnect. I really didn't feel much when I first got home. I didn't feel like it was a home with the comfort feeling. Dr. Kreutzer's colleague, Dr. Emille Godwin, explains the tumultuous affect TBI can have on relationships. Many survivors talk about being a different person before and after the injury, and many caregivers feel that way too. They're taking on new roles, new responsibilities. And so the two people that are in the relationship after brain injury are not really the same two people that were in the relationship before brain injury. The brain injury turned Rosemary into a single parent of their 14-year-old twin daughters, and Hugh needed his own kind of care. I was very much the maternal, nurturing mother, but I had to be tough, and I had to be more like him, not like me. So the first time I screamed and yelled at him-- I just lost it when he wouldn't get up for rehab. He was exhausted. He wouldn't get up. And my husband has once told me that--he said, "It was kind of like you had 3 kids. Like I was the rebellious teenager who wouldn't do anything you said." And he's right. To be taken care of is the most difficult thing. Not being able to do things like get in the car and go down and buy a bottle of Coke. I couldn't drive. And it was--not necessarily demeaning, but no sense of independence at all. And for me it was very difficult. Sometimes relationships fall apart after a brain injury. But about 9 months after the crash, Rosemary and Hugh got help from Dr. Kreutzer. He and Dr. Godwin are 2 of the few researchers in the country focused on helping couples sort through such challenges and build a thriving marriage after TBI. "Hi, I'm Dr. Kreutzer." With funding from the National Institute on Disability and Rehabilitation Research through a program called The TBI Model Systems, they launched the evidence-based Brain Injury Family Intervention. The program is essentially marriage counseling combined with education about the impact of brain injury. Seeing Dr. Kreutzer about our relationship challenges was a little bit unsettling at first. Because I think we were both careful of each other's feelings. When you go into a counseling session you're like, "Well I can't say that in front of him." And he's like, "I don't want to tell her how I feel." That sort of--it's just a little bit uncomfortable. But Dr. Kreutzer is pretty good at asking questions, and we started to open up and really talk more honestly. Understanding the new normal after TBI is one of the most important steps. Dr. Godwin starts by talking people through a list of common results of brain injury that they might not be aware of like communication challenges and social challenges. They say things like, "Did you come into my house? How did you know exactly what our life is like.?" And to have the experience of knowing that while the changes they are going through are very difficult, they are not unusual or unexpected can be very, very comforting for people. [Rosemary] I think I might pull this stuff out. [Hugh] What is it? Just like in regular marriage counseling couples work to communicate more effectively. I said, "He just doesn't like doing this stuff, and he doesn't do what I ask him to do." And Dr. Kreutzer said, "Well--" And Hugh says, "Yes I do! I always do what you want me to do." And I said, "You don't." And we we have this--we're starting-- and Dr. Kreutzer says, "Well Rosemary--all right--stop guys. How do you ask him?" And I said well I'll say, "The garbage is overflowing." And he says, "But did you tell him to take it out?" And I'm like, "Well I don't give orders. That's not my way." And so he says, "Hugh, how did your mother used to ask you to take the garbage out?" And he said, "Well she would say, 'Hugh, take the garbage out.'" So I said, "So that's all? That's what I have to do?" And so we went home and during the week I said, "Hugh, do the dishes." And he did, and I was stunned. So it was simple communication tools. To be successful counseling couples dealing with TBI therapists need to have a knowledge of TBI that informs their treatment. For example, rather than helping couples recall happier times, a traditional marriage therapy technique, therapists working with families dealing with TBI need to help them accept their new life. The exact words that Dr. Kreutzer said to us were, "Take some time to grieve for your old life and build a new one." And so he gave us that definitive ending that we would not allow to happen. We were stuck in our dream of going back to our life, and he gave us that beginning, grieve for your old life but start a new one. And after we really felt miserable about grieving for our old life together, we went home, and we talked about it, and we cried about it. And after that we started talking in a whole new way about, well, what can we do? We've got this gift. You're back home. You're with us still. What can we do to work with that? He effectively was saying is what you had before is what you had before, but you have to really shape what you have now and moving forward. When I talk to my patients I say, "You will get there. You may not believe that you will get there right now, but just for the moment I would like you to trust me. We're going to find a way to help you find the positives in your life, the parts to feel more hopeful, and to feel optimistic. You will get there, and I promise you that you will feel that your life will feel a lot more like a life worth living in the future." Hugh and Rosemary have made a lot of progress. And Dr. Kreutzer is not surprised because they are like a lot of his successful couples. They are people who recognize, who openly recognize, what's happened to them. That their lives are different. They are people who recognize that success comes with patience and persistence. They are people who learn to trust others in their life, and that hopefully will include the doctors and therapists that they are working with. And the other thing that I would say is, if you're a loving, caring person-- a person who shows their care for other people-- things will turn out way better. As difficult as things got, Hugh and Rosemary were committed to behaving in a loving, positive way towards each other. There were times when, for example, it was cold to put on shampoo. So I asked her to microwave it for me--for it to warm up. But she didn't call me an idiot and all this other stuff. She took it into consideration, and she made sure that the water in the shower was warm. Hugh called me on the telephone while we were in the same room. He did some quirky things like that, but it was kind of romantic. So if I didn't freak out about it like, "Why are you calling me? I'm in the same room," and instead walk into another room with my telephone and actually have this loving conversation with him-- it was very binding and it helped us rebuild a relationship. In some ways the Rawlinses make it look easy. Two years after the crash Hugh was back surfing and biking and working full-time as a CFO. Rosemary's written a book, but it's been a long road. TBI is like this waterfall gushing on your head. You're slipping and sliding and trying to get out from under it. You can't find your balance at all, but then eventually you do. When something this devastating happens to the person you love I think it's a moment of truth in your relationship. And for me, I absolutely couldn't imagine losing him. From that moment on I think we both fought very hard to get him back, back to himself, back in the family, back in the community. And when we succeeded to the point where we--we are so grateful. I can't even tell you how grateful we are. It's just amazing. This video is a product of the Model Systems Knowledge Translation Center and if funded by the National Institute on Disability and Rehabilitation Research.

What keeps some families together after a brain injury while others split apart? Through the TBI Model Systems, Dr. Jeffrey Kreutzer and  Dr. Emilie Godwin have been studying ways to help families survive — and grow stronger — after a brain injury. In this video, we hear from Dr. Kreutzer and Dr. Godwin as well as Rosemary Rawlins and her husband, Hugh, who sustained a severe TBI from a bike crash.

Posted on BrainLine March 13, 2013

Produced by BrainLine and funded by the National Institute on Disability and Rehabilitation Research through the Model Systems Knowledge Translation Center. www.msktc.org.

Click here to see Learning by Accident, a Blog About Caregiving and TBI from Rosemary Rawlins.

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