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Relationships After TBI Relationships After TBI

Comments [22]

Click on any phrase to play the video at that point.
[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.

show transcriptShow transcript | Print transcript

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.

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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Comments [22]

Please also include stories of couples who split up. I am the caregiver of my boyfriend who had a TBI 6 months ago, and he is not the same person; he was my best friend and my support in this world. We wanted to live our lives together. We have adult children; his children live their own lives and are relieved their dad has me.  My own children are unsupportive and want me to leave him. I miss the person he was. I miss what we had.  I am so lonely.  I do not hate him, I'm not angry with him. This is just the saddest situation. I'm grieving every day. I don't think I can stay with him. The burden is too much.  And I feel so guilty.  But I may lose my own children over this. They need me too. I don't know where he could go.  I just want him back. But that's not going to happen. This is like an awful limbo of not being able to grieve someone who "died" and move on. And feeling like it's my duty to care for him, but I can't.  It's like the worst possible outcome. If you all think I'm a terrible person for feeling this way, you would not be alone. 

May 11th, 2016 11:30am

Nice story but judging from the neighborhood that it shows they live in finances didn't seem like a concern that many others of us, among the working poor, face when one of us has a TBI and cannot work any longer leaving us with only one income. That, in and of itself causes much stress and conflict among couples. I am 14 months out from the fall that stole my life. I cannot drive, I cannot go up and down stairs alone, I cannot cook as the one time I tried I nearly burned our home down and had a visit from the fire dept. I have lost my peripheral vision. I have what's called Mild Cognitive Impairment which is not mild at all. And Post Concussive Syndrome. My husband has to work, he works in law enforcement and doesn't have such luxuries as paid sick days, leave, etc. and only 2 weeks paid vacation. So I am alone most of the week because we don't have Cadillac Insurance that would help pay for a care giver to come in. I've been told by my Neurology Team that I have to learn to accept my "New Normal." I have no help doing that as we live in very rural PA, as the couple in the video had. I am at point where I want to tell my family to "mourn" my loss as if I had died because in reality who I was is no longer.

Apr 22nd, 2016 5:28pm

Can I be sterile and not be able to have kids after my brain injury me and my gf have tried for 2 years and she has a kid already but can't get pregnant by me?

Apr 5th, 2014 9:52pm

Yep,our life now.  Their recovery has more success  than ours, but yep.

Feb 14th, 2014 8:53am

My boyfriend got a TBI 2 weeks ago. He is now in inpatient rehab for 2 days. When I visited him the last 2 days he knew who I was. But everything he says makes no sense. Is this normal and will he move beyond this point?

Jan 27th, 2014 12:21am

Brainline, PLEASE find someone to blog or report about the very different experience of brain injury from which the injured spouse does not come back--not to resume work as a CFO, not to feel love, not to resume or start an interest in activities/hobbies/relationships at all. Every story I've seen on here, absolutely every one, has boiled down to a carer who has a strong support network (which we don't all have) and an injured person who retained or regained a sufficient quality or quantity of functions. I find these articles very misleading in how they bury that information, making it seem as if the story told could happen for any one of us. But what are those of us who have no children, no supportive family, minimally understanding friends, and low earning power supposed to do with our dependent, detached, disinterested, disabled spouses? There's nothing in this video, or any of the other articles I've read here, for me!

Dec 7th, 2013 4:08pm

I Was involved in a single car accident July 2,1991 incurred a T.B.I. to the front of my bain along with a crushed jaw and crushed right ankle and was in a coma for August and have spent the last 22 years picking up the pieces.Every time I have a new deficit emerge I deliberately change my own personal programming in my lifestyle to try to improve myself.For example took my drum set out of retirement after about 15 years of not usig it and I just play along to CD's every day one song I play lead right handed and the next song I switch to play lead left handed.I Cannot recover the person I was so I'll just become the best person I can possibly no matter what life throws at me.

May 21st, 2013 9:56am

I am currently 26 years old. I was a victim of child abuse and had my head broken in three places when I was 2. I suffered deafness in my right ear from it as well as color blindness. I also was in a car accident in 2006? and have short term memory loss. I also had an accident when I was in 4th grade, going to school i fell and smashed my temple off of a wooden chair in which the back was broken off. So I received two stitches in my temple and last but not least I was t work and I stood up too fast and caught the side of my head on an I beam which was holding plywood received 5 stitches.

Apr 25th, 2013 11:27am

At the age of 40 I Mark Halvorsen had a severe TBI from a fall off my roof in 1999. My wife Maureen and I had 3 children at the time. I had to relearn how to eat, talk, walk and slow down and find occupational significance in my life. Maureen my wife devoted her time and energy to learn about my brain injury and it's emotional and behavioral challenges. Today we enjoy a great marriage and have been married for 32 years.

Apr 16th, 2013 4:15pm

In 2006 I had a tiny tumor in my right sinus that my Sinus Dr. insisisted had to come out due the continual \"sinus\" infections that were recurring. It was suppose to be a very simple in/out day surgery procedure back to work the next day. Unfortunately, for me it turned into a nightmare, as the Dr. was off by 180* and cut into my \"cerebrel spinal area in my brain causing me to to have \"cerebrel spinal fluid leaks\" through both sinuses, resulting in 6 major repairs, which every 6 -9 mths. fills with fluid, lets loose when you least expect and flows down thru the sinus onto your face, therefore flowing every time you stand-up, walk or move around. I have to carry a \"sterile\" cup around to catch the fluid, get enough to have tested for another leak. My Dr.\'s tell me that the \"injury\" I have suffered is like I have had a \"stroke\" that it is the same part of the brain that is injured due to a \"stroke\". One of the things that all the \"specialists\" told me that would heal that part of the brain was to smoke \"cannabis\" that there was something about the \"herb\" that had the \"healing\" components to heal that part of the brain. Having \"never\" used marijuana ever, having been raised how \"detrimental it was to your well-being, plus the \"legalities\" even w/a Dr.\'s prescription it took me a yr. to finally try it three times, but it made me so \"deathly\" ill smoking it and increased my \"movement disorder\" I could not use it,I could use the \"liquid tincture\" w/out the side effects, but still even with the Dr.\'s prescription could not get over the legalities of it, so quit taking that too. It does work wonders for others, just didn\'t for me. So I went in search of something \"natural & legal\" that would heal my brain, and I came across \"Prevagen\", it is an \"all natural enzyme\" that we lose by the time we hit 40 yrs. old, therefore, causing us to get more forgetful, absent-minded and subject to dementia & Alzheimer\'s. I have been taking this product for 6 mths. and have seen a \"Huge\" improvement in my \"brain\" function and the lack of \"cerebrel spinal fluid\" leaks and in my episodes with my \"movement disorder\". You can find out more about this \"incredible enzyme\" by \"footling\" Prevagen\" which will take you to a legitimate \"Brain Trauma\" site explaining what it is and how it heals \"brain injuries\". My heart & prayers go out to ALL OF YOU & YOUR FAMILIES who are suffering and want so desperately to be well again. Prevagen has even helped my 82 yr. old father who was getting lost, turned around and scared he was getting Alzheimer\'s which he wasn\'t. He is NOT a pill taker, but this is one pill he faithfully takes EVERY DAY! God be with ALL OF YOU & HAPPY HEALING!!!

Apr 14th, 2013 12:35am

what a beautiful love story. we are also working on our own love story after my brain exploded, (anuerysm burst)

Apr 11th, 2013 3:34pm

Well I find it difficult to get into a relationship with anyone, as I have ABI 16 years now nearly, I was in a motorcycle accident, got facial scars, emotional scars too, as a young girl who was out celebrating her 18 was killed! Now I am in University trying to get a career for myself, I am 38 and am full of doubts regarding myself and getting into relationships? I dont think I ever had the correct support, as there were no Brain Injury Organisations in my locality?

Apr 11th, 2013 12:00pm

I love your story. I met my, now, husband at 14. We were high school sweethearts, married at 21 and now have been married for 34 years. I have a brain injury I received during surgery to remove a brain tumor at age 52. Now at 55 and with many deficits my husband, my caregiver, says I am not the person I used to be. Wonder what age he is comparing me to? My daughter has said I was hard. I laid in a coma for 2 weeks as uncertainty was apparent but I am back. I still have a heart and I can still love. I may not show it the same way but I do like the statement "take time to grieve your old life, but start a new one". So true but your family needs to do this as well and understand you are not the exact same person. My husband told me the other day, the surgeon removed my common sense and replaced it with nonsense. He meant I say some crazy things but we laugh. Live well, Laugh often, Love much Pam Styers ( I am a native Virginian and live in Raleigh) So your story hits home twice. I know Richmond, VA well.

Apr 11th, 2013 10:45am

I recieved my TBI when I was 12 years old because of a car accident. My sister picked me up from baseball practice and on our way home a man ran a stop sign. I'm 34 years now & in 22 years I have never been in a serious relationship. I have never experienced intimacy with a woman.

Apr 5th, 2013 12:30pm

when in 52 yrs i have had 1 relationship that ended because she died. nobody loves me. that is probably the hardest thing to except living with a TBI.I just want to be normal and experience life like any body else. SILENT CRIES MICHAEL CIAFONE

Apr 2nd, 2013 8:38pm

To Lisa Stuckel, I'm so glad you found a wonderful relationship! Thank you for sharing your story of love and resilience. And thank you, anonymous comment dated March 28th, for pointing out that many times after a severe TBI there are permanent losses—loss of jobs, relationships, abilities, and that a long-term commitment requires an extreme act of love as the family carries on in a completely new way. You are so right. I am humbled by these families, yours included, and hope that through the sharing of experiences, by joining voices in advocacy for individuals and families struggling with TBI, life will improve in the future due to research, new therapies, improved support services, and a greater understanding in the general public of what families endure after TBI, so more people will reach out. Because of families speaking out, and because of organizations like the Brain Injury Association of America, and the TBI Model System of Care, advances are being made. Families can now access help through the BIFI (Brain Injury Family Intervention) to gain coping skills during these difficult life changes. My wish is that all families will one day have access to the medical, rehabilitative, and psychosocial supports they need after TBI. Thank you for writing, and best of luck in the future.

Apr 1st, 2013 4:38pm

Praise God for True Love! :-) Both of you are very strong and determinated individuals, and I admire that. Over 20 year ago, I suffered strokes during many brain surgeries. I thought I had the love of my life, but aftered a few years he lefted me. That is SO OK, because a few years later, God sent me MY Angel in Disguise, and we got married about 10 years ago. Looks like these 2nd lives are BLESSINGS in so many ways! Lisa A. Stuckel

Mar 31st, 2013 12:18pm

This is lovely, but there is also a reality that someone's loved one DOESNT come back, DOESNT have their cognitive abilities intact, will not ever return to work, DOES require supervision and medium or even high level of caregiving. There may be zero resemblance of the prior marriage or even be a marriage in the traditional sense. The dynamics are changed. The family as a WHOLE is changed. It certainly isnt a Harlequin romance. Continuing to care for a spouse with a brain injury is a commitment, a responsibility and an extreme act of love in a completely different sense. The grief and loss is there...but we are FAMILY. It's what families do and we are WHOLE as a family. We carry on....

Mar 28th, 2013 3:23pm

This story is so miraculous, the more I hear about it the more striking it is. The idea of "grieving for your old life" before preparing for your new life really resonated with me. In my experience with losing loved ones, it's often an unwillingness to let go of your old life that keeps you from moving forward. Until you let go of the past and come to terms with the fact that it's never coming back, you can't have a life in the future. It was especially nice to hear from Hugh in this video. While I've never had a TBI, I had a severe concussion several years ago and for two days I was disoriented, lost most of my memories of a 48 hour period, and was unable to drive or do much for myself. I really resonated with a lot of things that Hugh said about feeling like you have no independence. There were moments when I was reading Learning By Accident when I would read about something Hugh did during his recovery that was just like something I had done before.

Mar 20th, 2013 9:56am

Hello, (comment dated March 13th) ...about your son, how long ago was his accident? TBI takes a very long time to heal and progress can be slow, so don't give up and hang in there. It sounds like he has a wonderful caregiver in you! Sending best wishes, Rosemary

Mar 19th, 2013 7:51pm

Thank you so much for sharing your very personal story and giving hope to so many couples who are struggling to rebuild their relationship and start that long journey into the future. Rosemary Rawlins also writes a column on Family Matters in the new magazine Brain Injury Journey - Hope, Help and Healing published by Lash and Associates which you can find at http://www.lapublishing.com/brain-injury-journey-magazine/

Mar 14th, 2013 3:29pm

My son has T.B.I and lost two parts of his brain in the accident.[.frontal and temporal lobes]. I am his caregiver and will not give up on him.He was 1 semester from his full degree in elementary and special education teaching. Student teaching is all that was left.I'm praying that God will return his memory enough to finish his schooling.He had a hi-def mri done recently but, it can't be read due to enlarged ventricles. I'm extremely worried and waiting for some kind of info from his surgeon or rehab doctor.If anyone has any suggestions on where else i can turn please let me know. He is a miracle because he is able to walk,talk, and understand us and respond to us,except like the video,he is definately not the same person he was before T.B.I. GOD is with us and may he be with you also.

Mar 13th, 2013 10:55pm

 

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