Stories of Marriage after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
Were you married at the time?: “I was.” And are you still married? : “Am not.” How long did you stay married after the
accident?: “We didn’t get divorced for 18 months, but we weren’t together more than a couple months.” What did your wife tell you about the time, what she observed about you during that period in the first month or so after that?: “She really didn’t. It was so much on her that she did everything she could just to stay away. It was that drastic of a change.”
Do you have any recollections of this period? : “Yeah, it was very miserable. Because again she didn’t; I mean she
recognized me, but she didn’t know me. I recognized her but I couldn’t; I lost the ability of sense to, normal signals that
a couple has between each other. They were gone.”
To say that Craig’s marital problems are a familiar story to me understates, the significance of that issue in my career. The first brain injured clients were not personal injury cases, but severe brain injury survivors who had been charged with domestic violence. In each of those cases, the violence could have been prevented with better rehabilitation, the right professional guidance. Had I not been involved in those cases, I might have never understood (or believed) the nature of the disability my first TBI personal injury clients faced. Do you remember the struggles you were having with your wife that first eight weeks? : “Yeah. Well, the struggles I think started because I wanted to be fine, so that every time I go to the doctor I say “I’m feeling fine.” She knew things weren’t fine and the doctor wouldn’t listen to her and I remember that just irritated her. “Yeah, I’m doing fine” and I couldn’t remember anything. Basically I’d forget to put the car in park. Thank God we live on a farm, it’d keep driving and¦” So you’ve got about two, three months period where you can remember some of what’s going on where you’re actually having conflict with her?: “Yeah, we’re fighting about it. And I couldn’t sleep and I keep her up all night, trying to figure it out, processing it, just trying to put all these memories back and I was just trying, I mean I, she wasn’t sleeping. She needed to work. I mean it’s, it was hard deal on her.
What can we do to protect the spouse, to protect the mom, protect the children, from that first six months to a year of
real neurobehavioral extremes, to keep the family intact?: “Well the first thing is they have to have the knowledge. They
have to know what could happen. I mean not everything is going to happen, but if you don’t know, it catches you by surprise. And here’s what I’ve learned from the different things. Once (the survivor has) said something to (a caregiver) and they think that it was true (how does the caregiver not take that personally.) So you’ve destroyed that, you can’t stop that feeling. So you got to stop them from feeling that in the beginning. And by them knowing that this is normal, that he may be impulsive now. The spouses need to understand that it’s part of the process of getting well. I mean, and you will get better. I mean, you may not be who you were, but you will get better.”
One problem often seen with frontal lobe problems, is not making your loved one feel appreciated. He says she doesn’t have that. Her husband states; “She tells me every day that she loves me, and matter of fact she tells me more times than I care to hear it sometimes, you know? She’s always saying thank you, thank you, thank you. And that’s probably why I keep going.”
She was asked what the biggest problems are in her marriage and she answers with a smile: “Me.” What she really seemed to mean was her moods. Elizabeth states; “I’ve got to take one step at a time 24 hours a day but when I snap and lose it, he is right there and he tells me to sit down, calm down. Okay, what’s doing this to you? Why are you mad? Why are you mad at me? Why are you yelling? What did you know, what’s got you going? You know, and he will sit down with me and try to get me to calm down and understand what made me do it; why did I do it.” Her husband states; “Don’t give up. Patience, patience and more patience. Try and understand what you would be like put in that position, and try and look back at it that way, you know, what would I feel like. Asking, not having to ask but expecting help, and if you don’t get it, what would that feel like? That’s what I think about, what would that feel like.” Mood issues are one of the most troubling aspects of accommodating for brain injury. While environmental, pain and reactive emotional issues account for much of the problem, there are also organic issues that can make the meltdowns totally unpredictable. While much is still unknown about the irritations to the cerebral cortex that account for this, it is clear that mood responses can far exceed what the brain injured person has the capacity to control.
She freely discusses problems she has maintaining the same level of intimacy with her husband as she had before her injury. “Yeah, that has more or less – I force myself pretty much. Again it’s the flat. I just kind of force myself to do, you know.”
When asked where he had the most trouble with high pitched noises he responds; “Actually in the house; with the kids, the wife, for some reason they’re always” it seems to me like they’re always screaming and in my ears and it’s like, no, I’m trying to get away from that type of noise. When asked “Is it the that sound or the things they’re asking you?” his response was; “A little bit of both.”His friend explains Ian’s troubles with his wife when dwelling on something that has upset him; “I told him, you know, you got to let this go. But if his wife is sleeping in the chair, she works, she was working 4:00 in
the morning until about 100:00 and she’s tired when she comes home, so she falls asleep most of the time in the chair. He will go, just for no reason, wake her up and then start yelling at her, and it’s why are you doing that? Let her sleep. Leave her alone.” The most important relationship for a survivor to maintain is that with his or her spouse. In too many cases, that is the one person the survivor has the hardest time listening to. Like Ian, it is often a parent, a close friend who can intercede, say the calming words of advice. Finding better ways to cool the intensity of anger at home is one of the greatest challenges facing any TBI household. It must be a bigger priority in discharge planning and ongoing treatment.
Ian has hit on two of the most critical elements to a good recovery â€“ a family/friends and community reintegration. Key to his recovery has been not only his family, but the connection to his friend, who has bridged the gap between home and the community. Getting out, working on projects, trap shooting, those are the types of things that will continue to push his recovery forward.
When asked what role caregivers played in his recovery he responds; “Well they would encourage you of course. They’re, the good caregivers, generally caregivers are good people and do good things, and so I’ll, I’ll mostly stress on how much
importance it was that I would hear good comments. The number one comment was, to hear that they, they just cared that you got better. To hear that others cared, to know that people sent a card, or especially when it handwritten card, you know, or a child writes, very important. But like to hear from my wife. My wife was with me, 24 hours a day, seven
One of the problems after severe brain injury is that the caregiver role becomes the role of the coach, the parent, the evil therapist role. This is true especially early in rehab, and especially with spouses. What that means is that the traditional role of wife, lover (or parent) is dramatically shifted, which can cause a disturbing disruption in the joy which formerly bound the relationship. I discussed with Jeremiah how to tell a survivor (especially one who may still be close to his or her injury) to be nicer to their caregivers. Jeremiah comments on his wifes role as a cargiver; “And this is what I believe that we have done (looking at his wife). It’s not at all without difficulties and arguments and such, but it is so with any spouse relationship. But you always must keep in your mind what the caregiver has for feelings for you.”
The best memory he has of his wife since the accident was: “I don’t remember telling her this but, but she has reminded me many times, she would tell me that the day I woke up was the day of our first wedding anniversary because we got married not quite a year before when it happened. And she would tell me how that was the best gift to, to see me awake or with my eyes open and she said that I told her that I loved her and please don’t leave me. I always remember this, yeah.”
Kevin was 34 when he got hurt married with one child. He is no longer married.
My first brain injury clients weren’t personal injury clients they were severe TBI survivors who had been arrested for
spousal battery, batteries that occurred largely because they were sent home too early. Ultimately all of those cases
resulted in divorces, which negatively impacted each survivors chance for the best recovery. There are two truisms to severe brain injury in a married person: First, there is nothing more important to long term recovery than a spouse. Second, too early of discharge, puts the spouse and thus the marriage at risk. Without a long and gradual transition back into the home, the impact of denial and behavior extremes become particularly harsh. The risk of a destroyed marriage is increase significantly when the survivor is a male, because of the risk of violence. Further, sexuality is very important to most men’s identity. Being treated like a child by his lover (necessary when the discharge is too early) completely disrupts the sexual dynamic in a relationship. Kevin isn’t able to speak to the precise explanation as to what happened, but the stark reality that his marriage was a victim is inescapable. Intimacy is difficult after any brain injury, even without specific sexual dysfunction. Frontal lobe dysfunction severely alters the capacity of a survivor to do the “little things” that make a lover feel cared for and appreciated. Add to that “physical changes” and the normal interaction between husband and wife can get seriously distorted. With that distortion can come profound frustration, leading inevitably to behavior extremes. Some of the Kevin’s wife’s frustrations in Kevin’s case may have been prevented if they had not discharged from TBI rehab too early.
In our previous blog, Lori’s discussed the difficult task of navigating sexuality after frontal lobe injury. Thank you for
your honesty about what is one of the most complicated parts of recovering from a brain injury, and it’s especially
complicated because sex and romance are the most complicated things we do as growing up to be adults. When you manage to reestablish a meaningful relationship with your boyfriend, your fiancÃ©, how did you regrow grow the intimacy and the sexual and the romantic feelings again?: “It never seemed, after that affair, I don’t remember there being difficulty with my boyfriend, husband. I learned from the affair about my expression of love, my verbal expression of love, and I learned about the physical communication or body language. And I learned, I learned about the difference between a non-loving physical relationship and a loving physical relationship. I learned that, and so I knew that that affair was not a loving physical relationship.” What was the process of getting married like for you?: “It was the coolest thing. My roommate, Robin, was in my wedding. I had a girlfriend that was in my wedding that was my friend from the time I was 6 years old. My maid of honor was the best friend that I made at the board of realtors. My husband’s best man was a friend of his for probably close to ten years prior to him meeting me. There was a lot of important people around.
Evenings with your wife?: “Evenings with my wife. (We) go through phases. Right now I’m in a phase to where I like to stick close and hug my wife and, you know. And then sometimes it goes the other extreme, to where all I want to do is stay up late and be on the computer. And she’s learning to handle both of those.” Had you guys lived together before you got married?: “Yes. We moved in, I moved in there in May of 2009, when we lived on Ledge View.” So she’s really been accustomed to your normal routines?: “Actually she’s a music therapist at the Lutheran Home, and she actually has. From the first girl I dated to my wife, all of them said oh, we’ll be able to handle it. But with people who are have TBI understand this we can go for a while and be absolutely fine. Then all of a sudden something hits and we’re thrown off kilter. My first girlfriend and my wife couldn’t handle that. Becky is starting to see patterns, which is kind of odd because with TBI you usually don’t see patterns.”
One of the things that is obvious from what you told us already that you did have trouble with is the ability to work closely with other people, controlling your emotions, control your behavior when you’re around other people.: “Yes. It’s a huge issue.” Give me some examples.: “I can give you some examples right here. When me and my wife would get into an argument, there are times when I will, I should know just to stop, walk away, think about the issue, then come back. But I will start accelerating it to where she will start crying and I will start yelling. And then finally I’ll think, oh, I better back away. I come back and apologize to her. But she’s starting to, like I said earlier, starting to understand that you can
just say Mike, go take a break.”
How do you do in terms of perceiving the concerns and feelings and the issues that the other people in your life have? :”I’m becoming more sensitive with my wife especially, because she works in a very high-stress job, and just coming home (for her can be stressful.) I’ve learnt with my disability to ask questions, and I keep asking questions. Because, uh, most of the time I don’t understand what she’s talking about. But if I keep asking questions I can form a small picture of what’s going on.”
There is nothing like the love of a good woman. For Mike, that has certainly proven to be the case. I first met Mike’s wife
at a support group meeting at Clearview Treatment Center in Wisconsin. She was there with about 20 other people to listen to our http://tbivoices.com presentation and as soon as the program was over, she came up to us and wanted to volunteer her husband’s story for this initiative. There is nothing unusual about that. What was unusual was there her husband was still a patient at Clearview, upstairs on the rehab floor. She was very motivated for us to meet her husband.
Doing the marathon care giving the way Mike’s wife has done it, is generally not recommended. It can take too big of a toll on the spouse, take away from other family members, job responsibilities. But perhaps because Mike’s wife was on disability, because their kids were grown, and because of the fierce commitment they have for each other, it will be the right way for them.
For Mike and his wife, recovery from severe brain injury and coma has been a partnership, a partnership that all those
impacted by TBI can learn from. Well we very much appreciate that you, that you did this for us because we know it was hard and maybe we should have interviewed your wife without you here. What was it about what your wife was saying that made it sad?: “Just because she’s trying too hard.” You’ve tried very hard too, haven’t you?: “I think so.” You love your wife very much.: “Yes I do.” You certainly know that she loves you.: “She does.”
Talking about his wife Quinn states: “I don’t know. I mean, I want to say love for my wife, love for my family is, to me has
been enhanced. I thank her every day for what she’s done for me, for being a rock, for, you know, me putting her through
hell, for not, just one stupid strap on my helmet wasn’t on right and I put her through a year and a half of hell. She has
been there for me through sickness and in health, and I never thought that line would ever mean anything, and it is, she’s
been unbelievable.” Do you feel the same emotional connection to her that you did? You described a cognitive level, how much you appreciate her, but do you think you feel the same emotional attachment to her, like you did before? Has it changed?: “I think it’s enhanced. Waking up in the hospital and seeing her â€“ seeing her there and saying to myself oh good, and then passing back out. It’s having somebody like that is, what would I do without her? I mean I’ve gone through some painful headaches that were very suicidal. And we do have guns, we do have a license, and I was looking at her sleeping and looking at the gun next to her, and I had to ask her to hide the guns. I was in so much pain and, and it just, you know.”
There’s a, there’s a change in the relationship that comes between a spouse and a, between two spouses that doesn’t happen when the primary caregivers is a mom. Because you’ve always been told what to do by your parents, and it’s, more of a partnership in married people. Is there an element in that that is that suddenly you were treating him like you were his mom and not his spouse?: “I’m sure there was. And not necessarily his mom or a parent, but why am I trying to boss him around? Why am I trying to be in charge?”
In our last part, we discussed the changed dynamic from lover to caregiver that causes so much friction in marriages after severe brain injury. Quinn’s wife continued to search for explanations: “You’re saying there’s something about the change in, in the nature of interaction that you think might be part of it?: “Yeah. He gets defensive and offended at times, if he thinks I’m trying to boss him around or tell him what to do. Where, other times, I can say the exact same thing and he understands that I’m just trying to get information or trying to help him, whereas the other times, you know, he, he gets upset with it.”
What would you say to someone who might be in a support group, whose spouse is just coming home?: “Patience is a virtue. It’s difficult. At times you just need to walk away. You just, you can go in circles trying to argue, but you can’t reason with somebody whose brain isn’t necessarily going to understand the reason or logic behind something. There are many times, now, that I just need to say, this isn’t going anywhere. We need to take a break. Most of the time, he honors that; at other times, he doesn’t agree and he’ll kind of follow me around the house, and insist on continuing a conversation that’s obviously not going anywhere. But, you need to try to take those breaks, and just sit back and take a few deep breaths. How do you learn not to take it personally?: “You have to remember that this is their injury. This isn’t the person that they were. This isn’t the person that they’re trying to be. They can’t control what they’re doing, and they’re not trying to hurt you. They’re not doing anything intentionally. This is their injury, not them.”