Spouse of husband with TBI
 

Hi all. I am new to this site. I am looking for a support group for spouses of husbands/ wives who have suffered TBI's. I am feeling very alone and isolated and I'm sure there are others going through the same things I am. I would love to talk to them and help each other out. Anyone have any suggestions? I know this is a TBI and post concussion syndrome form but it was the closest I found with good 'ol goggle.

Hi StacyRose,
There is a caregivers forum on this website. They would be able to sympathize with the demands of taking care of one of us who is suffering with this terrible condition. If you have any specific questions for us, we would be glad to help. Sorry you and your spouse are enduring this. Tell your spouse to come talk with us. It helps.
Brain

Thank you Brian I will look for it. Oh I wish he would but he is fine in his mind. Perhaps in time he will be able to see he is not and will come on here.

Stacyrose,

Welcome to NeuroTalk. I understand your need. PCS causes a unique stress on a spousal relationship that is different than other medical conditions. We tried to start a spouses thread years ago but never achieved critical mass.

How is your hubby doing ? What are his struggles ?
What kind of care is he receiving from doctors and professionals ?
Tell us anything you can about his injury and we can help you understand his symptoms and how you can help him. When you better understand his symptoms, you will be better equipped to endure them.

What struggles are you most in need of support with ?

This is a very good group.

Check out these online resources. The YouTube video series at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be
The TBI Survival Guide at www.tbiguide.com
And http://www.brainline.org/content/201...u-to-know.html

My best to you both.

Hi and welcome. In addition to the links Mark posted, the Brain Injury Association of America posts support groups in various states, here is the link for California, hopefully there is a support group near you. You may also want to check hospitals near you that have centers that specialize in neurology, they may have support groups there as well.

Best to you both.

http://biacal.org/

Hi Mark, Thank you for the post. I don't talk much about it so it may take me a few posts to answer these questions. I try to keep in mind talking about these things helps. Perhaps I should start with what happened, in a nutshell. I was 9 months pregnant with our first born son when my husband was in a dirt bike accident at track. He flew off his bike over a jump and it hit him in the back of the head. He was rushed to a nearby hospital. He suffered brain swelling, 6-7 bleeds, damage to his brainstem and frontal lobe. He was unresponsive for days and they were unsure if he would make it. He was in ICU for 3 weeks then 2 weeks in an in hospital rehab then 2 months at Winnways, an out-patient all day rehab facility. Given everything he is a walking miracle. His neurosurgen literally had tears in his eyes when he started opening his eyes. He does not remember any of this. I on the otherhad have flashbacks on a daily basis of everything him and I went through. I can't make them stop.

His progress: He is doing so well that he is back at work and has his drivers license back. In my eyes his struggles are short term memory, body temperature regulation difficulties,depression, interpersonal skills, being extremely deffensive and easily frustrated, lack of perpective of others. Also, when he has done too much in a day his head tremors return. He will not take any medication, hates doctors now and will not talk to a psychologist. He is not receiving any care as of a few months ago.

He rarely talks to me or anyone about his difficuties. I worry about him constantly. I know it is hard for him to verbalize his emotions. Friends tell me "that's guys for you." but he was different. I was so lucky to have a guy that could talk to me for hours about our feelings, etc. He seems depressed and I hurt because I can't just magically make him better. I feel like I have lost him but he's right here too. Like he's an arm length away and I just can't reach him. I do have a lot of patience, this is definitely one of my strongst qualities and I sure am using it now. I just wish I had my husband back. I think just having people to talk to about it who can relate to what I am and he is going through would be helpful. I get so mad when people comment how strong I WAS or how much I WENT through. They have no idea it is all still very much in the present for me.

Thank you for listening.

Thank you! I found a few groups close to me. I am going to call them and get some more information and see if it will work in my schedule with baby and husband and all.
Thank you!

Stacyrose,

I understand what you are going through. My wife has gone through much of the same. It would help if he was evaluated with a NeuroPsychological Assessment. These are diagnostic tools done by NeuroPsychologists. The value is not as much for treatment as it is so HE can understand what he is like now. It will hopefully help him helpo himself.

The most likely is demonstrating a common TBI symptom called flat affect. This is where he emotions become flat, no empathy or any emotional expression. He may also have damage to the part of his brain that perceives emotion in others. Neither of these need to continue if he is willing to understand that they are a result of the injury and not just an expression of himself.

I had to learn to 'fake' emotional expression. Emotions that do not flow naturally can still be expressed by a disciplined choice. Libido can also be different. As you say, you need support to understand these issues. It will be a big help if you can find a Brain Injury Support Group that has a caregivers' subgroup. Meeting others in the same situation can at least let you know you are not alone.

If you want, I can connect you to my wife by email. She is very good at understanding these issues. She has lived with me for 33 years, 20 of them before she understood my brain injury issues. When you have access to Private Messaging or Email you can contact me privately. The link is found by a right click on my screen name. A drop down box will show and you can select PM or email.

How old is your little one now ? I have a 6 month old grand child that is finally learning to open up to others. My daughter is at work all day so she clings to her when she has her. This is a fun age as they start to interact more with her surroundings.

Why does he object to medications ? He might benefit from an anti-seizure med for his tremors. There are some that have little to no side effects. I take gabapentin to settle my tremors and body jerks.

The defensiveness can be due to mental rigidity (stubbornness caused by the injury) or a tendency for outbursts (also injury related). Sometimes, it is due to feeling overwhelmed with issues. We don't just get overwhelmed with issues, we often end up with lifetime subscriptions. It can help if you only try to discuss one issue at a time. His brain may not be able to juggle to concepts at the same time. You may have to learn this for yourself then slowly teach it to him.

Check out the Vitamins thread. It will be a big help for both of you. The injured brain has a severe need for good nutrition.

There is lots more I can say but some may be best coming from my wife.

My best to you three.

Mark,
I would love to talk to your wife once I can PM. Thank you. Listening to you it sounds like in time he will come around and perhaps be a bit more open to the fact he has some issues. Today I found a neuropsychologist in the area, very well recommended. I have a tentitive appt and a referral from his doctor in the works. Now I just have to convince him somehow.
Yes I have started limiting how much I talk to him when he comes home from work. I just let him play with the baby...he is 8 months now and is a complete crack up! We love him! I choose my battles very very wisely and if I have to I will tell him how I feel about something and move on. I get the impression he spends the next few days processing what I said because sometimes days later he will talk to me about something I had said.

well have a good rest of your day.

Stacyrose,

You ought to get a white board and post it in an easy to see area. We have ours on the refrigerator. Use it to post notes. Only post the musts, not the want to's or wines. The baby wines enough so he does not need them from you. Mom's have their needs but right now it will help if you suck it up and hold back. Give him a chance to get his bearings.

You need to tell him the NeuroPsych Assessment is not about treatment. It is just to assess his condition. You can even try framing it as "I want to know more about your condition. You likely do not understand your own condition so an NPA can help us understand so we can make plans for the future/baby. Be careful to not let it sound like you are blaming him. You just want to understand.

Keep posting so you can get out of probation and have PM and email features available.

StaceyRose, you may want to frame the NP assesment in the terms for both of you. Him so he can understand all the effects better and develop strategies for quality of life issues. For you so you can better see the challenges he faces everyday.

I really feared getting the assessment but found that the information has helped me soooooo mmmmuuuuuccccchhhh!!! Slowed processing speeds are common and can be very frustrating. As can memory issues. Before I knew better I was afraid my injury made me stupid. It may very well help put a lot of unknown fear to rest for you both.

Mark,
wooohooo I found a great neuropsyc. in our network, authorization is pending and he agreed! I almost cried! I think the white board idea is great. I have one that I used everytime I left his room in the hospital and when he got home but then stopped. I will bring it back out, great idea.
feeling hopeful!

Looks like my post didn't post. Hmm...well...I got him to say yes to seeing a neuropsyc!!! So over the moon about this. It's taken me months to get this answer. We are just waiting on insurance, which shouldn't take too long. I also found a great neuropsychologist in our area!
Thank you for the white board idea. I used to use one when he was in the hospital and new to home but I stopped. I will bring it back out again.

Things are progressing....phew!

StacyRose,
So glad to hear of this progress. You sound much more upbeat. I am in the middle of neuropsychological testing now but am hoping for some good insight in to my problems and also some treatment options that would be best for me. Try to encourage your spouse to come talk to us. Maybe if you read him some of the posts he will know he is not alone and might start to consider getting some support from a group. This group of people here are the best. They have been so helpful to me and I am so grateful for each and everyone of them.
Glad that you are getting some much needed support also.
Brain :hug:

I am so glad I stumbled onto this thread. My story is long so bare with me...

My husband suffered a bad concussion 6 years ago snowboarding. I was with him and saw the impact. It wasn't good. He also suffered several concussions through the years playing Rugby.

When I first got to him he seemed to pop right up. Not sure if he ever lost consciousness as he seemed to just lay in the snow awake. He got up on his own and recognized he had a concussion and said don't worry about it I'm just a bit concussed. I said well you're going to the hospital regardless.

As we left he talked me into going home first to get a change of clothes. As we were leaving I had a thought to ask him which way was home. We had just moving into our house a few weeks later and he picked the way to our old house.... The WRONG way. I proceeded to go to the new house and he changed and we were on our way to the hospital.

Along the way I wanted to see how much he remembered. Nothing from the accident, nothing about the new house. He wanted to make sure I called his dad and my dad (They died 3 years prior). I had to tell him that they had passed away 3 years ago which brought on tears like he had never heard that before. It was heart wrenching.

While we checked into the ER he started vomiting and was checked in for the evening after it was worse than just a slight concussion. After we got to our room I started noticing he would ask the same 10 or so questions every minute. He kept repeating them as if his brain was resetting every minute. Needless to say it was an exhausting and very scary night as I thought is this going to be life now? Will they be the same questions over and over again and me giving the same answers.....

He was wide awake most of the night asking the same questions so much I wrote them down and the answers so when he asked I just pointed to the piece of paper. Eventually he started to have the foggy suspicion he had asked them for hrs on end. The nurse and I tried to get him to sleep as he needed to rest his brain. He finally fell asleep at 4 am in the morning.

8 am rolled around and I woke up with him sleeping soundly. We were new to the area and didn't know anybody so I had to run home feed and let out the dogs. On my way back I received a call from the brain specialist (whatever you call them) saying he woke up and was not asking the same questions but didn't have any memory of the incidents leading up to him being in the hospital. Eventually through the years his memory has gotten better regarding that night but there are still blanks.

Life was pretty good up until the past 2 years. He's always been a bit of a control freak. A bit annoying but I just did things such as drive the car, cut the grass, and other things the way I wanted to. He never got mad. It started slightly but it drives him nuts and we have been fighting a lot so much so now he gets vertigo (might be post concussion related) and has high blood pressure. He blames it on the stress of the marriage I blame it on that he works himself up so much. I'm a pretty calm person. His mum only sees him every few years but has noticed how bad he's gotten. Christmas 2014 with his whole family in the states for the first time at Christmas lead to melt down after melt down. He doesn't even know how to cook a turkey but he was yelling at everyone in the kitchen that did know how to cook.

Again, sorry for the long rant. A month ago he shocked me by asking for a divorce. We were going to marriage counseling but he said it wasn't worth trying as he didn't love me anymore. I don't believe that at all, not for a second. He also said something key and it was I don't believe I'm cut out for marriage. Where did that come from? 14 years tomorrow (march 31st) and 17 years together in total.... How do you just come to this conclusion? I'm convinced it's concussion related as he changed a lot 2 years ago. Big highs where he is at the top of the world and very lows where he's barking at me, family, and friends for no reason. It's been tough to say the least.

I have a friend that runs the knockout project and he's provided great information. I feel well educated and he's textbook as my friend says. The emotional mood swings. Support to me for going after my education but yelling at me a day later that he hates it. He all of a sudden hates everything that is me and he's always loved me for me.

I really feel stupid as I should have researched the signs years ago. The loving me, not loving me. The flip flop on decisions. The emotional roller coaster and now a possible divorce. He moved out Saturday. We're currently in the friend mode. I've recognized he needs help but he's acting as my friend who runs the non-profit knockout project. I was given some great insight that he's in a fog and it comes and goes. He's convinced himself our disagreements (about his crazy out of line control moments) are causing him health issues. He's convinced himself that it's not worth fighting for with counseling...

The insight is he knows something is wrong. He feels he's changed but can't stop the snapping when it's a normal conversation with anyone. He has also said he doesn't love me the way a husband should love a wife. Over the past few days he's now back to I love you although he hasn't wanted to come back. I'm hoping the downtime separation will bring some sense to him, it usually does when he's alone.

I have sense reached out to his mother via skype. It was the first time I had spoken to her since he told her that he wanted a divorce. She asked me what has changed in him? I went through the concussion stuff I knew and both of us agree he needs help after the start of the decline 2 years ago. She was shocked at a lot of it but I bury it. We are a very tight family but I didn't want to worry her. Now she knows as I didn't feel it would be good for him to move out without her knowing what I've been through the past 2 years.

I'm not sure of my questions but one would be how do you help someone realize they need help? I know he knows it but he's in a fog. My friend that runs the concussion sight said he was convinced his wife hated him (she didn't) and also that he was a ticking time bomb and felt that he needed to leave the family as they would be better off. I know this is going on. I feel it as we still talk (text) nonstop. I can't cut him off as he has no one here. I think it's clear that now that he's in a high although a sad time I need to approach it again. I'm worried that will bring him to a low and he'll go into denial and cut me off. He seems to be running away but he can't run away from this problem that is Post Traumatic Concussion issues. Everything is textbook.

I'm just crushed and it feels great to get all this out. I just don't know what to do. Happy 14 years anniversary to me and my husband, my soul partner, and the love of my life. We are off to lunch tomorrow. I have convinced him that we are in this together. Friends are where we are and I can't let him go through tomorrow alone. He can't let me either. I'm thankful to have what I have for now.

SXFemale1,

Welcome to NeuroTalk. Sorry to hear of the struggles you are going through.

I can help you understand this a bit better. I'm surprised Jay did not help you more. Yes, this is classic Post Concussion Syndrome. It is not uncommon to have flat affect. It takes a lot of work to work through the issues of flat affect. When your hubby says he does not love you, it can be completely because he has severe flat affect and has lost the emotional sensations common to love. The fact that once apart, he has expressed his love supports this. He recognized a sort of habituation of love. He can recognize the desire to be with you because being with you provides other sensations.

Loneliness can be a non-emotional feeling. Sort of a 'this does not feel right but I do not understand why.'

I say this because I have lived with this for years. With it can be anhedonia, a lack of ability to sense pleasure. The two can lead to a miserable existence.

I would encourage you to do two things.
Get him started on a brain health nutrition regimen like posted in the Vitamins sticky at the top. The first post has a link to the updated info at post #101. It is not a quick fix but can help with some issues over the long term.
Next, try to find a counselor who understands PCS, anhedonia, and flat affect.

If a counselor can help him understand that these symptoms are due to his injury and not a part of who he is, it may help him learn to accommodate them in ways that do not have such a negative effect on others. The outbursts, biting criticism and such can also be reduced.

He likely has other struggles that you are not aware of. Cognitive struggles are often internalized but can be very frustrating. Struggles processing conversations can also be a problem leading to verbal 'issues.' His world may have become very black and white with struggles to see anything in the grey areas.

Please feel free to ask any questions.

My best to you.