Approaching difficult subjects with TBI patient...
 

Hi everyone. My husband suffered a severe TBI back in Feb after falling from a skateboard. Glasgow coma scale of 7 upon admission to the hospital. ICU for a week, rehab for six weeks. He lucked out because he has no medical issues or physical side effects. He was doing really well for a long time, emotionally, and now he's just stressed and emotional and taking things personally...

He was supposed to ramp up to forty hour work weeks over an extended period of time, but he only took about a month to do so. I think this was a mistake. Since his forty hour work weeks started, he has been so irritable. Anything I do or say can set him off.... Anything that anyone says or does can set him off, though I'm the only person to really see it because he expresses himself to me. If I try to talk about things with him, if I try to troubleshoot or share observations about his behavior, I'm accused of micro-managing and blaming everything on his brain injury and being an *edit*. He won't give anyone the benefit of the doubt for anything, and he takes his interpretations of people's motives as gospel truth. I have to admit, I'm not exactly a stable rock and I deal with my own mental health issues (depression) and I'm having to handle this situation without family support or close friends, as we are overseas. I also miss my best friend (husband), who was my rock prior to this injury. I'm sure my emotionality is not helping the situation. Anyway..

He had bad habits prior to the injury such as not sleeping enough, occasional smoking, drinking too much coffee, and he is sliding back into those habits. If I talk to him about these habits, again, I get accused of micro-managing. I don't even approach these subjects often... It's just that if it's even discussed, he freaks on me.

I'm trying to decide if I should go to his boss (he's in the military so things can be worked out) and ask him to figure out a way to give my husband a break for a few more weeks, but I know if my husband finds out it will **** him off royally. I think scaling back by a couple hours a day would be beneficial to him. Is there something I'm not thinking of? Is there a better way to talk to him about things? I know it's impossible to eliminate all negative responses and outbursts are par for the course with his recovery.

I feel so lost.

Emily

Emily,

I'm sorry for what u and your husband are dealing with. Although I have no advice for you I can appreciate the frustrations of both parties.

How did he get injured? Was it work related?

Talk to your husband and try to make him understand if he doesn't take a step back and cut out the stressors he may never heal and what that means as a family. You have to make it his decision.

Have you thought about therapy as a couple or joining a support group in your area? You don't want to bottle it all up inside

Keep us posted

Kelly

These are symptoms of brain injury. The irritability, rigid thinking, going back to bad habits. They are kind of the way the brain copes with it's new deficits, the frustration of not thinking as agile and flexible as before, getting a bit "overloaded" at his thinking "hitting a wall". The brain kinda doesn't know any better, it doesn't know that some bits of itself aren't there anymore and things need to be "rerouted".

Yeah, all par for the course of recovery. Things do improve some with time. Slowly, a lot of his old personality will emerge. He does love you very much, you will get a lot of him back. He may also seem very self-centered, that's what injured brains do, too. It just takes a lot of time and self-focus to unscramble itself. Just know that everything he's doing is coping mechanisms that are what brains do on their way to figuring life out again.

Sounds like his thinking is somewhat more concrete and maybe less abstract than before, this accounts for that "hitting the wall" frustration. This means that instead of just talking to him about coffee / smoking, he may need to see more "concrete" evidence that these things make his brain worse, like a video or in print from an authoritative source. And he may not take them from you. Has he had any neuro care since being back to work? A therapist may help.

I wish I could help more, I did have lots of links but I just had to reinstall Windows on my PC and I've lost everything. :-(

When he gets irritated, try "redirecting" him... change the subject to something more positive. I.E. I have had some major chaos with my kitchen being demo'd and rebuilt due to a water leak. Once when my son was expressing anger about all the commotion and upheaval, I suggested that when it's done we should celebrate with cooking a favorite meal -- lobster, steaks, cake -- he latched on to that idea quick, his response was "LOBSTER!!"

Since then there has been little muttering, now he has something to look forward to at the end of this mess. Redirection need not be about changing a negative to a positive, when needed just change the subject to doing something else if possible to "sidetrack" him. Food works great!

Hope this helps a little, I'm just learning how to handle my son myself. I'm also totally alone in this and it is murder. Best wished to you.

Hubby has TBI
 

Has your husband or yourself investigated the many aspects of TBI? If you know his commander personally and can trust she/he won't put you in the middle then that is where I would go.

Otherwise what type of doctor does he have. Is the doc forward thinking and subscribe to the philosophy that TBI has many aspects. Each aspect needs to be addressed. If the commander is out go to the doc and tell him.

The other type of doctor you are likely to encounter is the wait and it will get better type. This type is not very comforting to get stuck with. Either way it sounds like he is trying to hard.

How old is your husband? What are his symptoms? The biggest thing I struggle with is my thoughts can become disconnected and jumbled. I know this is not right but if I am not careful I will try and force my brain to do what it once did.

When that fails I go totally off the deep end with frustration. My wife has seen, felt this. It is awful to go thru this experience but I can see how hard it is on my family.

Thank you for the service of your husband and you for standing by him as he does his service.

Sonarlily,

Welcome to NeuroTalk. I am sorry to hear of your husband's struggles.

There are some resources for you to check out. The TBI Survival Guide at www.tbiguide.com will be a big help. You can watch the YouTube video series at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be It may give you some perspective.

If you can approach his Commander, my suggestion would be this.

Ask the Commander to observe your hubby's behavior at work. Suggest that at home, it is magnified many fold. His commander can then suggest that hubby needs some help to learn to deal with the stresses of his job after his TBI. If his Commander puts it in a work place reference, your husband may be more receptive. Tell him to not mention your contact at all. His commander probably has already noticed some issues.

The military has lots of experience with TBI. There should be systems in place to help him. The fact that his injury was from private time activities should not prevent him from getting access to help.

Which branch is he in? What rank?

My daughter is a SSgt in medical administration in the full time Army Guard. She may have some tips for you.

btw, Burn his skate board. He does not have the tolerance for another head injury available.

I hope this helps.

My best to you both.

The Mayo Clinic's Brain Book
 

Thanks for your post. As a single military member (USMC) with TBI, my first instinct it to suggest backing off. I basically turned into a hermit. I can't imagine having a husband or kids while I go through this. I know that is not conducive to a marriage. I pushed everyone away, all my colleagues I met in my 15 year career in the Corps, Facebook deleted, relatives who wouldn't understand. It's just me and my dog who doesn't make suggestions or tell me how to do things but who loves me and kisses me all the time and comforts me just as I am.

The military medical has been all over me, they are wonderful. I go to the TBI clinic, neuropsych, social workers, occupational therapists and speech therapists and neuro feedback. They have been so helpful. grants from the military sent my dog to training to become my service dog.

When my family tells me "it will get better" I buck at them because maybe it will, maybe it won't. I am vvvveeeerrrryyyy slowly getting better. This was my fifth concussion, non combat related too.

I got a handful of the Mayo Clinic's "Brain Book" and passed it out to those that are close to me which they say has been real helpful.

The thing aside from the book that has really helped me was a group with other TBI's and my relationships with my doctors. The care is there. I go to Ft. Belvoir Community Hospital in VA, not sure where you are.

I can't imagine being in your shoes, I am sure it is tough. Far be it from me to suggest anything marital but I can tell you that if you push in the right direction, the medical care is there.

My TBI merely scratched the surface for a whole bunch of other things going on, not saying the same is true in your husbands case but perhaps? TBI in itself can be mind boggling and I am taking tiny baby steps. Those who serve have alot of pride and for me it was ego that was hard initially but once I understood that yes there really is something wrong with me, could the process of healing begin.

It isn't rainbows and sunshine but I do hope my post helps.

Hilary

Sonarlily,

Did you get all the help TBI/PTSD mentioned including Neurofeedback?

TBI/PTSD - If you don't mind can you tell what kind of Neurofeedback you went or getting treated? Do you go to the one in Bethesda, MD?

Thanks and Cheers!

Sonarlily is stationed overseas with her husband. I wonder if 'backing off' is doable as it appears he brings a lot of stress and struggle home from work. There is a need for a semblance of stability at home. If his work load is counter to this stability, it should be addressed. The isolation of spouses and families during overseas deployment has enough stress without adding TBI aggressiveness to the home.

Hi, I get EEG Biofeedback at Ft. Belvoir.

Thanks. Do you know what type of feedback? Simple terms do you do anything during therapy or sit back and relax?

Cheers!

More relaxing
 

I am hooked up to EEG and look at a computer screen.

I am going to try to respond to as many replies as I can in one message. :)

My husband is 28 years old, in the Navy, fell from a skateboard and sustained a TBI. He was fortunate and did not require neurosurgery, but he was medically sedated for a week. I don't know all the medical lingo relating to his injury, but he had three bleeds on the left side of his brain. After the acute phase of his illness, he went to rehab in the States. I was with him through the entire process, fortunately. We weren't sure if he was going to be able to return to his assignment overseas, but his rehab progressed so well that he was cleared to return to his overseas assignment. Anyway...

Self-reported symptoms are short-term memory lapses and issues with word-finding, as well as decreased sense of smell/taste and less tolerance for cold. Sometimes he switches tracks in a conversation without the other person really being aware. He calls himself "stupid" on a regular basis and it hurts my heart to know he thinks that of himself. He never called himself stupid before the accident. He's still mentally sharp and few (if any) people notice that there's anything amiss. I know his self-esteem has taken a hit.

I'm having a hard time because he's absent a lot. He spends his off-hours playing video games with friends at his friends' houses, and sleeping until he has no choice but to get up. I feel really lonely. I don't ask much of him, especially compared to before. I don't ask for his help cleaning or really with anything besides picking things up from the grocery store on his way home, and only occasionally will I get him out of bed if he's slept past noon. He kind of counts on me to get him up for work as he has always slept through his alarm clocks.

I think I'm here on neurotalk more for myself than for my husband... He is, by and large, coping really well. I'm the one who is having a rough time of it. I do not have any close friends in the area and have never really lived anywhere long enough to have close friends at all. I don't get along particularly well with his friends... Long story there. I feel like he chooses them over me given the fact that he knows I'm uncomfortable with them. I try to give him space to enjoy their company anyway.

What I really need is to be with someone who loves me... My dad or my grandmother or my husband, if he had the ability to support me. A close friend, even. I am so tired of relying on the system for support. I want to be supported by someone who really, truly loves and values me. I'm tired of clinical answers and by-the-book jargon. I don't know if I'm ever going to get the thanks from him I feel I deserve. I think if he showed me some gratitude, it might help me feel a little less weatehered by this whole thing.

Anyway... Thanks everyone for your replies. Hopefully I'll see you all around some more. :)

Sonar,

I can understand you situation. It sounds like your husband has never quite grown up to become a husband. Now, with this injury, it just makes things worse. His lack of maturity is the cause of his lack of gratefulness.

He should not be spending more than maybe a hour a day playing video games. His brain will never finish healing if he stresses it so. In fact, he should lay off the video games for probably 6 months if he really wants the 'stupid' to have a chance to get better.

His rehab was not complete. It was just enough to return to duty.

To help you understand what was going on. He was medically sedated to prevent his brain from requiring more than a minimal blood supply. This reduced the intracranial blood pressure to help the bleed heal without continued bleeding. A conscious brain needs much more blood than a comatose brain.

His rehab was to re-awaken his brain and motor functions that were comatose. The neural pathways forget what they are supposed to do from the time in the coma. They need to be stimulated to reopen the pathways. The rehab was not likely to focus on promoting healing of the damaged part of his brain. That takes months. He is in that stage now. But, with a full work load and constant stimulation with video games, his brain will not finish healing as much as it can.

If you can get in contact with the people who provided his rehab therapy, they may be able to suggest more quiet rest rehab at home. It could be framed as a simple "long term follow-up" and be ordered by command.

How long have you been married?
Before he was injured, did he spend so much time with his friends?

Is there a family support office at his post?
How about a counseling center that you can turn to while you wait for him to get the message?

I can understand your dilemma. My daughter was deployed to Iraq once and her husband was deployed twice leaving her home alone for a year. The strains of deployment can be difficult.

My best to you.

I think I just wrote a book...
 

Sonarlily,
These symptoms are very common with TBI. My son's injury was severe, requiring major extensive surgery, in hospital and SNF for 10 weeks. Since he's been home he just sleeps a lot, and plays computer games most of the rest of the time. Unfortunately, he's been playing games since age 3 and it would be it would be impossible to separate him from them... ohhhh welllll, because of that, it's also been a big part of his "self rehabilitation", remembering and relearning his life. Sighhh...! He basically hides in his safe, dark, familiar cave most of the time.

Anyway, here's some stuff I've learned over the last 7 horrible life changing months of our lives, while I've been researching and watching him and doing what I can to be there for him while he tries to put himself back together again and doesn't succeed very well, but he thinks he does anyway. It sounds like your hubby is functioning mostly very well; my son is disabled (though not physically), but there are still some commonalities in the range of TBI experience.

Most of all, I assure you that he does still love you. Being "self-centered" is another hallmark of TBI, part of the need for a cave to hide in. It's part of the process. His whole world just narrowed down to himself and he will slowly re-emerge. I had wondered for a while if my son was even capable of empathy / love ... I guess it just takes awhile for the brain to remember, and some of it is needing to relearn social cues and skills.

Probably being with friends is helping your hubby with the socialization, albeit unknowingly; socialization is extremely important for recovery. That might be the only upside to his friends... hopefully they're not supplying him with any kind of drinking or substances?!?! All those games are bad enough without that. But, likely, your hubby's friends places and games are like his "cave" where he can "hide" from the rest of the world, and yet meet his need for socialization.

Anyway, his love for you really is still there somewhere. I totally understand your loneliness; it is insanely crazy to me to miss my son sooooo much when he's right there even in the same room with me. But you should see the amazing little gestures he shows me occasionally. I want to be buried with the Valentine's Day card he made for me when he was still in the hospital, it is so beautiful!! I soooo treasure every tiny connection with him I can get; I came far toooo close to losing him completely!!

And despite his nearly constant surliness to me, I know that he IS very deeply grateful to me and values me very much. The neuro Dr. who did his NPA told me he expressed that to her. He can't seem to tell me himself because, well I guess, I just have to face it, I'm the nearest "target" for his frustration with his "new brain". So I'm the one he picks on allll the time, catches every tiniest mistake I make in everything he sees me do. Zeroes right in on a typo when I text him... the rest of the conversation is over at that point, I have to be soooo careful!!

But I know it's a coping mechanism, he needs to prove to himself that he's not stupid... so I bear with it and try my best to just be positive and non-reactive. Most of his behavior is coping mechanisms. It all just takes a lot of adjustments and time, time, and more time. He has improved much especially over the last month or so, his affect is getting softer, he even chuckles a little sometimes, and can even sing a little now. A couple months ago he claimed he couldn't. He has come a long way!

Your husband possibly needs to "hide" until he can prove to himself and you that he's "not stupid". He's embarrassed! TBI is horribly embarrassing to sufferers. When he calls himself stupid, he his expressing frustration and embarrassment. His brain has found a place in itself that needs to rewire his thinking. He may need a "work around" to compensate for the loss of those brain cells. Mark in Idaho has loads of those skills on hand he can help with.

I also have learned that my son's surly affect is not always what he really feels and not what he means, it's just how he comes across. (Some of it is; he has a lot of darkness and bitterness from pre-injury events, and frustration to get past.) But his affect has not yet aligned with his emotions and he has trouble expressing his feelings; he's probably not even that aware of them yet. It's like he's trying to swim through mud so he sounds a bit forced. It is actually a kind of aphasia and is extremely common with TBI. But he is learning and the mud flow is getting softer and smoother.

He is very slowly coming back, but he IS coming back. How far he'll come, we'll see, I only know he has a lifetime of recovery ahead of him, and I hope to see and cheer and applaud him for the whole long, winding, bumpy road we're both on.

Anyway I just wanted to assure you that your hubby's love and gratefulness and even his support may be still buried in him, but it IS there. Just know that he acts the ways he does because his brain is working so very hard to unscramble itself. He probably has a hard time connecting with you these days because his brain is so vulnerable to those feelings of low self-esteem, and he subconsciously wants to hides his inadequacies from you. So, most of all, do not take things personally!

I know it is very strange to think of it as his way of putting you on a pedestal and respecting you, but that's kind of what it is. He just is toooo embarrassed to let you "in" that close. But I guarantee you he would not admit to anything in this post; it's best to keep it to yourself. Maybe given a few years he will look back and realize much of it himself.

He can be stupid with his friends and hopefully laugh it off; it will be awhile before he can feel secure enough to do that with you and feel okay about just being himself around you again. I read somewhere recently that this behavior may even be a "test" to see if you are really there for him or if you will give up on him. Testing that connection is also another coping mechanism, not a conscious plan. For now, comfort yourself with the thought and just know that he will eventually come around and be able to express himself to you again.

You are doing right to just let him rest, and not push or ask too much of him, but you can slowly increase things "to do". When he says no, accept it and try again another time. Next time he may say "maybe" (which still usually means "no" for a while). He just may need time to process the request and will come around eventually. That seems to be how it works with my son. Never nag, never criticize or get very emotional at all (very overwhelming for an injured brain), but also don't tolerate bad behavior.

Just stay gentle and understanding as he relearns good behavior, carefully help him to understand. One of the best ways is to simply project the kind of behavior you want from him... Thank him for every little thing he does. He will take his time to reflect on how he's supposed to react, and maybe will sneak in ways to show that he does listen and he does care.

My darling son loves to grocery shop, and when we go together he always wants to buy me a box of cookies or something chocolate. It's a way of his to show thankfulness and caring. I never refuse! The little things count more than ever, and I cherish every moment I get with him as "thanks", rare as they may be. He is getting so much better at empathizing.

And I can see he is coming up with things to do on his own, like doing dishes and taking out the trash, without me asking. Even these are reaching out with gestures of thanks, just as much as it is himself boosting his own self worth. Think of every thing your hubby does as thanks and support. It IS that, whether he says the words or not. Does he ever smile at you? That is thanks. Just be thankful for every bit of him you can get, and give thanks to your "higher power".

I am also completely alone, no family or close friends anywhere close. I know how horribly hard that is. It is horribly hard to even find anyone else in those same shoes, everybody else seems to have good loving support nearby. I know the hell you're going through. It is also par for the course to feel that alone and isolated.

NOBODY seems to know what we're going through, NOBODY seems to even know anything about TBI, and NOBODY knows how to give us support that we need. This is true for both TBI survivors and each family member! The real shocker is the statistics... every 4 seconds someone in the U.S. gets a TBI. there are scads of us, everywhere. https://www.braintrauma.org/tbi-faqs/tbi-statistics/ Sooo where the heck are they??!!! Are we alllll in hiding, both survivors and family, suffering in silence while trying to find our way back into the "real" world??? I guess...

So, dear, HANG IN THERE. You are the one who has to be very, very strong and unselfish for the both of you these days. It could take years, but he needs you now more desperately than he ever will again. Life sucks, but there it is. There are never any real promises or guarantees in this world, things can be worse, things can be better, just hang on to what you've got for as long as you can. Hang on to hope, hang on to your love.

This may be our big Lifetime Opportunity to learn about the real meaning of "True Love", completely pouring out ourselves and becoming a pure empty vessel for whatever "God" is out there to reveal himself to others through us. Well there ya go, I haven't even been the least bit religious for more than a decade now. Yeah, this is nuts.......!! I am finding that as unrealistic as "Hope" may often be, HOPE is still a necessity of life.

Hang in there anyway. Hang by a thread.... just hang in for as long as it takes. Nobody can say how long that my take. It may be only months, or a lifetime, or anywhere in between. Who knows, someday (hopefully 50 years from now, if ever), your hubby may be the one taking care of YOU and learning the same life lessons.

That's about all I know at this point... the "hows" I still need to learn myself. I read a LOT. Some good books with great tips are "Unthinkable: A Mother's Tragedy, Terror, and Triumph Through A Child's Traumatic Brain Injury". Even though Dixie and her son's experience is drastically different from ours, it is still very worthwhile for picking up on ways to cope and be supportive. http://www.amazon.com/Unthinkable-Su.../dp/1936214415

http://braininjuryrewiring.com/ are the books I'm reading now, also great for picking out very valuable helps in figuring our way through this shocking new "adventure" we're going through. I constantly feel like I'm a cartoon character, stuck in the frame where their head is exploding in shock when something bad is about to happen to them.

Huggzz, Sonarlily. Here's to us strong women... where would the guys be without us?! Staying strong is better than the alternative. Sorry this is such a long post; your being so very alone just resonated with me and I wanted to reach out and pass on some assurance. You've found a great support here on this forum, it's been a life saver for me. May it be source of strength for you, too.