What Happens to Relationships After Brain Injury?

From the National Resource Center for Traumatic Brain Injury
What Happens to Relationships After Brain Injury?

Many survivors and family members describe changes in their relationships after the injury. They may not hear much from friends, co-workers, and extended family members. Others notice that their phone calls, emails, and letters are left unanswered. Some survivors find themselves feeling alone even when they spend much of their time with family members or friends. Here are some of the things people say about their relationships after brain injury. Do any of these statements sound like things you have said?

  • I can't relate to other people. It's easier to be by myself.
  • What happened to all the friends who came to visit me in the hospital?
  • Other people don't want to be around me.
  • People seem to avoid me.
  • My wife threatens to leave me at least twice a week.
  • I wonder why no one returns my calls.
  • It seems like everyone at work has lost my phone number.
  • I haven't talked to anyone in weeks.
  • Nobody cares about me.
  • I don't have any friends.
  • Seems like nobody wants to talk to me.
  • Nobody has any idea what I am going through. They don't understand me.

Why people feel lonely even when around family members or friends?

After injury, many survivors describe feeling lonely — even when they are surrounded by other people. This loneliness may arise for many different reasons.

  • Difficulty talking to other people or understanding what others are saying are common problems survivors face after injury. Communication problems can make relating to other people and explaining your thoughts and feelings very difficult. These problems can lead to feeling misunderstood and isolated.
  • Many survivors feel self-conscious after their injuries. They may worry about being different or less capable than other people. Self-consciousness can make it harder to spend time with other people or seek out new relationships.
  • After injury, many survivors worry about what others will think of them and may feel nervous about being around other people. They may be afraid of being hurt or rejected by other people.
  • Many survivors notice they are more irritable after their injuries. When irritated, they may say or do things they regret later on. Some survivors try to stay away from those they care about for fear of behaving poorly. Family and friends may also avoid you if they are worried about what you might say or do.
  • Fatigue and low energy are common problems after brain injury. Survivors may not have the energy to do things they used to enjoy or to spend time with friends and family. Family and friends may also worry about tiring you out when they invite you to do something.
  • Pain and other physical problems often make it harder for survivors to do things they used to enjoy. You may also have trouble leaving the house, traveling, or visiting other people. Injury-related limitations make it harder to nurture and build relationships.
  • Many survivors are not able to drive or work after their injury. Lack of transportation and money may make it hard to visit others or do things you enjoy.
  • People generally make friends through work or being involved in social or recreational activities. After injury, survivors often stop working and may not be involved in sports, church, and other activities. You may lose contact with friends and co-workers because you don't see them as much.
  • Friends and family may feel uncomfortable because they don't know what to say, how to act, or how to help. Discomfort may make it harder for them to relate to you or spend time with you. Help them out by letting them know about your positive and negative feelings and what they can do to help you.
Posted on BrainLine November 4, 2008. Reviewed July 25, 2018.

From the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care. Chapter reprinted with permission from the NRC TBI publication, Recovering Relationships After Brain Injury: The Essential Guide for Survivors and Family Members.

Comments (199)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

It's a good thing there are platforms like this one that makes me see that I am not alone in this battle and there are other people that I can get learning from their own experiences.

My girlfriend/fiancé was diagnosed with a rare form of brain cancer last May 2018. The location of the tumor is in her hypothalamus which made it very hard to operate or else it will only cause a lot of complications and also, the hypothalamus being affected caused a haywire in all her hormones that regulate her salt, sugar, steroids, estrogen, progesterone, regulation of water, temperature balance, etc. She had a year of chemotherapy but afterwards the tumor only got bigger. She had brain radiation treatment as well to which she responded very well and the tumor went back to it's original size. However, she had a stroke recently caused by clots forming in her brain brought by complications of high dose steroid replacement and a heart complication from her disease/medications/treatments.

It's been a tough time for us. I always hate it whenever I see her suffer. We were only like 3 months together when she was diagnosed with it and I just met her here abroad. It's like the world turned upside down for me. I have been with her all throughout her journey --- all the hospital admissions, doctor appointments, scans, treatments, everything. She's always admitted in the hospital every month since she started the chemotherapy which always compromised her immunity and causing infections here and there. Her longest stay in the hospital now is for the last 5 months and the stroke made everything even more complicated that's why the doctors are not planning on letting her go because she's always confused and all her capability to do daily activities are affected.

I saw all the sufferings and difficulties and challenges she had. She was not able to work anymore for more than a year and a half now and I have to sacrifice a lot. I basically became her own carer.

It was exhausting and depressing. I lost all hope and am still losing hope every now and then. There was a moment last year I got so low I thought of ending everything already. I though everything was unfair because I could see everybody happy while us, we're always stuck in the four corners of different hospitals.

Nonetheless whenever I look at her, even though her physical appearance is very different from the person I met before, still, I see the woman I love so dearly. I always see a spark of hope and joy in her. God, even though she's been suffering, you could always see her smile. We're total opposites even back then. She's always bubbly and friendly and joyful and happy while I am always silent and well-reserved. That is why even when thing gets tough all the time and even tougher over time, I can't leave her. It always crosses my mind, the thought of leaving her. But I always come back to my senses. She made me a better man than I was. Even though she's always confused and acting childish, I could always see her there. I never got tired of reminding her of all the things that we shared and all the things that she love.

I do not know what the future has in store for us. But we will keep fighting and surviving and living. It's when things gets tough that we will see that hope is the last thing that will go, but until then we all keep holding on.

All sounds very true as I have been very confused overall with friendships, relationships and family connections after TBI occurred to me riding my bike home from work and being struck badly by challenging motorists!

My partner had a sports related concussion almost 8 years ago and still suffers significant symptoms of daily headaches, fatigue, difficulty sleeping. She struggles to work and maintain a "normal" life but has told no one else other than me what she goes through. Recently she said she feels as though she needs to be alone and that being in a relationship is too exhausting and difficult for her and that I deserve to be with someone who can be in a relationship full time and give 100%. I have tried to explain to her that I love her and want us to be together but she is now thinking differently and that it was "unrealistic" for her to think she could be in a relationship and that what she wants and what she can handle don't align. I wonder if anyone else has experienced this and whether anyone has any advice. I suggested therapy but she has been resistant. Thank you for listening.

Hello,

I know EXACTLY what you're going through....I have a Girlfriend (who I just broke up with again) that wants me to move in with her, but the house is tiny, and I would go spastic there....She's in the medical field and kinda knows what I'm going through, but truly only survivors know how bad it can get...Lack of sleep.Anger issues...Wanting (needing) to be alone (at times) are just a few of the day to day issues that come up....Feel free to send me your thoughts, and good luck..

Best
Robert

My boyfriend had brain surgery almost two years ago (which he stayed in a coma afterward for 2 months) and since then I noticed that everything has changed. He never got his conscious back, not completely, his short memory has also been deeply compromised and he behaves in a child-like way. In the beginning, I was so excited that he got out of the coma and eager to help him recover that at first, those things did not matter. He amazingly recovered physically from the surgery however mentally he never really improved. His family and I try our best to help but his mood and lack of will make it harder. A few weeks ago I realized that our relationship barely is the same and even though I tried I do not love him anymore, not in the same way. It's been hard to cope with that and I know that soon I will end things up.

I am trying not to feel guilty...

Anyways

I hope everybody has a good day :)

I came here to seek advice and perhaps, understand different perspectives.

My boyfriend had brain surgery almost two years ago(which he stayed in a coma for 2 months) since then I feel that everything has changed. He never got his conscious back completely, and his short memory has been deeply compromised, altogether it makes hard to cope sometimes. I have been trying my best but his mood gets on the way every time, I try to help but he denies help most of the time. The only one who my boyfriend listens to is his father. A few weeks ago I concluded that our relationship is definitely not the same and that unfortunately, he is a different person that, even though I tried, I don't love anymore.

I am trying not to feel guilty...

Anyways I am mostly here to blunt.

I hope everyone has a good day!

My husband is prescribed medication for his TBI but refuses to take it and decided he what's a divorce because when he isnt on it he is more angry, violent, selfish, stops all sense of responsibility and so much more. Is there anything I can do to get him back on his medication. We have children and he isnt even thinking of them at all.

I am 4 months in after tbi and I too fight with my husband about taking my medicine and my medicine is just vitamins and marijuana (like should be fun right!?). I don't wish to but sometimes I truly believe that I must be well and that my husband just doesn't understand me (not true). He's literally had to chase me down and have me take it. But on my good days I know I should be watching myself and making sure Im taking it. And write in my journal. Otherwise I can be hot tempered, confused, overly hyper, down right melt down on the floor and kicking and crying like a 5 year old, or if i get really stressed or scared I have repeated myoclonic seizure, and or focal seizures. I really suggest for the sake of him, you, and your kiddos that he start keeping a journal if he hasn't already. I know writing can be hard after tbi, (hard for me too) but sometimes it can be comforting to read something YOU actually wrote and how you felt, then after a while you and him can start to identify patterns. Whether it be in his feelings,behavior,or schedule. It has helped my identify that i DO need my medicine and that I'm better with it, at least for now. And maybe remind him that he most likely will be able to stop taking it once he's healed up (even if you don't actually think that). Sometimes just being reminded that, YES I am injured but I will HEAL can be very comforting. Also I don't know if your husbands the same way but i know when i get loud or irritable its usually when I'm stressed or scared ( just like anyone) only difference is, tbi survivors often have to learn how to cope again like children. So giving him a quiet space for a while could be beneficial. Remind him your his teammate and your working with him to help him because you love him! Might seem obvious, but its usually not to us tbi survivors. We may need to even hear it multiple times a day. In terms of kiddos, I have a daughter and she has seen me in ways i never wished. And I hate it. Im sure he too feels the same. My husband has to talk with our daughter ,and remind her that mommy may get a little weird, grumpy, or sad for no reason, but that I love her very much and my brain is just a little scrambled right now. Unfortunately tbi affects not only the survivor, but everyone around them. I know its hard, but try to remember your husband literally can't think straight. Him not wanting to take his medicine is probably because of the tbi. Its a vicious cycle but there can be hope! I know all I want is to know is that im loved and that ill be okay. Us survivors are very much still the people you know and love, we are just trapped inside a body with a brain that can't process a whole lot of information at once Sounds,sights,emotions, sensations ect. I wish you and him the best and hopefully a speedy recovery.

My daughter is 23 years old
And has a severe tbi. Her fiancé of 5 years just broke up with her. He fell asleep driving and caused the accident. I am angry with him but maybe I should t be. I know she is almost child like now so that is hard for him but I feel like he should at least spend some time with her. He broke up with her and is now posting pictures of him and a new girl. I don’t want to push her on him but maybe once a month. Is that wrong to want that for her.

I wouldn't push for her to see him unless she really wants to. Guy sounds like a ....well you know! Marriage is for better or worse and if he's not willing to give her his best now when she desperately needs it most then he doesn't deserve time with her especially not to be married with her, even in her current state. When I have bad days I too can act very childlike. Your her mother though and your comfort is probably what she's craving most right now. You helped her become the woman she is, and now her brain has to try to reconnect those dots again. I find stimulating my long term memories can be very helpful for reminding me who i am and finding my way back to myself. As well as aid in storing new memories. I have new to me/old memories coming to me all the time and it blows my mind and with each one I get slightly better and more myself. Like this sounds like nothing, but the other day I cracked an egg, and to my surprise imI did a chefs crack (one handed). I was shocked, but then i remembered I use to do that all the time! And it felt so good. Like a piece of me came back. Try things with her that you use to do before her injury, preferably nothing too stimulating, probably nothing like going to a movie or anything like that, but something she once enjoyed that is calm enough for her to do now. Your a good mother for caring for her in her time of need, its a hard thing taking care of a survivor of tbi. I wish you the best!

I don't recommend searching for blame. That road only leads to a hole that weakens the individual and they become bitter.

I also don't recommend you pushing her onto him as it could lead to a situation that is bad for both parties. For example, lets say you push her and a meet-up becomes sexual, but then she regrets having that sexual encounter with her ex-fiancé and feels bad about it. If this guy broke up with her she should not entertain ideas of getting back together. He is scum and at that age wasn't really looking for a long term relationship.

My husband found my need to sleep and my silence in the evenings through my sheer exhaustion hard to deal with; he basically felt very lonely for the first two years living with me post my illness. The illness did test our relationship and was a test as to whether our marriage really was ‘for better, for worse’. We had a happy ending. It made me realise I really had married my best friend.

I found this site trying to understand my spouse who had a brain tumor removed from their frontal lobe. I fell in love with the post surgery person, but the personality issues are the same that most people describe here. I have been ready to divorce several times and see a therapist myself because I don't know how to cope with the bouts of anger, misunderstandings, hot and cold behavior, and the blaming me for just about everything. Just like all of you, I love my spouse, I just wish the moments of happiness that pop up could be there all of the time. Hearing the perspective of the person who suffered the injury has helped too. I knew when I got married that they couldn't spell, made impulsive plans and purchases, forgot much of history, would get moody and threaten to leave me. But I also see the sometimes loving, funny, and happy person too. I don't know if this gives some hope, my spouse's tumor was operated on about ten years ago. today vocabulary is coming back, new skills are coming back, and new memories. We record things with a camera to help their memory, we spend a lot of time forgiving and trying to let go of mistakes. I came here because I wanted a divorce, now after reading each point of view, I think I need to forgive some more and have some more patience. Good Luck to you all and thanks for sharing your thoughts, it really means alot.

Thank you very much and very good to hear as I suffer from TBI after being hit on my bike 11/2 year’s ago by challenging chemically induced driving! I have been extremely challenged by my wife’s difficult contact with me and feel better about your words that this is not unique and hopefully there is a chance for working things out for best conditions and return to what marriage I remember from pre-incident. I hope extremely much that we get better together and move forward from an extremely rough period for both of us...

I also married my partner, post his TBI. Signed up aware of some of the challenges. But as I grow, change, and age there have been major challenges. I found this post, and your specific reply, in effort to find peace and hope for what is right now. Thanks for your post. XXX

I wanted to thank you for the grace you've shown. My wife gave me grace too as I went through the terrors of my tbi. It's been 10 years since my accident and although I'm not the same person she has loved me. Being a care giver to a tbi survivor is hero stuff. Thank you for being there.

My husband got in a horrible accident in May of 2018. He was on his mountain bike going down a very big hill very fast and lost control with no helmet. Honestly, we don’t know what happened. He does not remember and never will. I was absolutely terrified when I got the call that my husband could potentially be life flighted. It is one of the scariest things to hear when you are 2 hours away from the man you love. Thank God for his gift of miracles and love. Also with the help of a dear friend and Sanpete County hospital ...MRI’s, CT Scans and staples in his head. I am grateful his friend was there that night to be with me. We were both scared. He kept repeating things over and over every 3-5 minutes until midnight when everyone left and he fell asleep. Some of it continued into the next day. Doctors said, No Tv.. No driving...nothing. That whole week was a total blur for him. He only remembers bits and pieces but not in order. They put him together enough for surgery on his busted up collarbone and sent us home late the next day. After months of being off work healing from his injuries, collarbone put back together with a titanium plate and screws, me changing so many bandages from his head trauma, taking him to multiple doctors appointments because he could not drive for a while, help from so many people that loved us, bringing in dinners and helping me gets some breaks here and there, and light duty which he hated, he was finally able to go back to work in late September. I thought his going back to work would help make things better; it didn’t. With his TBI it’s hard for him to even get through the day sometimes. It changed him. Everything has changed. We ended up in separate rooms (yes, my choice), complete silence between us due to so many horrible things said verbally and done emotionally to push me farther away. I don’t want to give up. Much to my dismay, he feels life is over and our marriage is over. I wasn’t willing to give up because I saw him in there...sometimes. Instead of being grateful for every day God has given him, he has chosen to stay in an isolated and angry state. I have tried to be patient, I thank God every day he was alive for my daughter and me, try to be understanding when I didn’t understand myself, given him space and worked on myself and my feelings about the whole experience, kept my 12-year-old daughter from falling apart. He has continued to push me away so far that my heart is broken in pieces and the person I once knew and loved dearly is gone. My rock is gone. He is not funny, lovingly obnoxious anymore. No more singing, whistling or coming home and making the house chaotic... All those things I loved about him. I miss him. I feel like a part of him died and a piece of me died with him. He is now angry, easily irritated, dizzy (actually passed out once which I found out was a lie later to keep me quiet), can’t stand loud noises or bright lights. He can’t go to movies, noisy restaurants or parties. He can’t handle a lot of people asking too many questions (especially from me) or people wanting too many things from him. He comes home and goes in the basement away from everyone. He says he hates everything...yells at the dogs. Coco was his favorite dog and all he does is yell at her. It scares my daughter. He blames me for everything. Maybe it’s easier for him to deal with all of this by doing that and that’s okay. He has no emotions or feelings for me anymore or anyone for that matter. My daughter does not know who Daddy is anymore. I have prayed, begged God for help and guidance and I’m lost. After almost 14 years of marriage, a stupid accident has destroyed his love for me and our family. Yes, I am devastated, angry, depressed, confused, and wondering what I could have done to fix this. I’ve realized that no matter what I do or don’t do, say or don’t say; I can’t fix him. I can’t bring him back. No matter how much I cry, beg for him to see a doctor or a counselor he refuses to go out of fear or just does not want to know. I believe would help anyway. I asked for help from his family to make him understand we all love him and are concerned, he has got to do this on his own. I am thankful to those that have supported me, told me it will be okay when I was scared and confused, given me strength when I wanted to give up and Jesus for loving me no matter what. I am thankful for my kids, especially my daughter for her enduring strength to get through school and love for her mom and dad even though we were falling apart. I am thankful the most for my son who has become my rock now. He has a tender and sweet soul. Any girl would be lucky to have him. I know this girl is! All my friends for enough love to be brutally honest with me and trying to talk sense into my husband. Everyone has tried and I am so blessed. It’s been a brutal eight months and trying to be the best mom, wife, friend and work hard at my job through all of this has been tough. I feel guilty asking for so much help and crying to my friends so much. I hope no one ever has to go through what we have been through. Everyone tells me I’m strong when right now I feel like I failed and I’m weak. I hold on to the Lords love and the possibility that I will find peace and love again for me someday. Right now, having my kids and the few real friends that love me in my life is enough.......it will be one day at a time....maybe even one minute at a time but I will get through this. Family is everything but when they don’t want to be a part of your family anymore, love them and yourself enough to let go......I got my divorce papers on Friday and honestly, every ounce of my soul feels like this is wrong...if he would only get help..but I can’t help anymore. Devastated wife of 14 years

I feel your pain. My wife of 12 years, substained massive brain damage due to a stroke on the left hemisphere of her brain. The brain damage has effected her cognition, her emotions and her faculties. It’s like I’m living with a complete stranger now.

She is unable to care for our two children, show affection to them, or motivate herself to even assist with their needs. I have been a defacto single parent for five years.

I recently filed for divorce. I can no longer handle watching her sleep all day or her lack of motivation to be part of this family.

I am so sorry that you and your family are going through this. The emotional pain is unprecedented. Be strong.

Since this message was in Feb 2019 Not sure if my advice will help. I had a TBI Traumatic brain injury due to a car accident that was not my fault. It was devastating. My personality turned flat, it hard to be funny when your are just trying to get through conversations. My facial expressions were flat too. I hated it. I could hear people talking about me . I had constant pressure in my head like it was the clamped in vice. I was easily overwhelmed in conversations with people. I remember that I just couldn’t take anymore information After a few minutes. I literally would see people’s mouth moving but my brain couldn’t process anymore. My catchphrase was my brain is full. I had trouble following conversations That had more than two or three steps. I was frustrated at times because I didn’t understand how they couldnt understand, lol. I had trouble with three-dimensional vision and colors like red could be overwhelming to me. Going to the grocery store was an odyssey. Too many colors, too many items, to many decisions everything jumped out at me at once. I felt like I was under heavy tranquilizers. The neurologist told me the brain healing would take three months, six months,nine months, year or possibly never before I was completely myself again. That was a very heavy load and every day filled with fear. To recover I couldn’t watch TV read or text or be on my phone. I asked the doctor what I can do and she said go for walks and sit outside. What helped save me was I adopted a dog from the shelter. I had always wanted one. I helped him and he help me. He understood when no one else could and didn’t judge. He is still my bestie. I went back to work after 3 1/2 months but it was terrifying. I knew that I wasn’t the person that I was, I wasn’t as smart or quick on my feet. I almost gave up. As the manager, I felt like an imposter. When will they find out I was faking it? How long can I pretend?
I remember when I felt like myself again, It was a year and one month. I was finally back, but my life has forever changed. I lost those I loved. I lost my fiancé and my three daughters who I loved deeply. We have been together for three years and he broke up with me after three months of TBI. So not only did I have to deal with my TBI, I had to grieve the loss of my family. I don’t blame him, he was afraid, I just wish he hadn’t given up so soon. I’m here now and I am recovered. My advice to anyone injured or the partner is to try to give it at least a year. Find a support group. My neurologist also suggested antidepressants for me. She said it was becoming standard procedure as many people with TBI become depressed. I didn’t take antidepressants because I just hate meds.
Somehow, miraculously, three years later my life is back on track. I am dating someone for 1.5 yrs and I can see my future again and it is bright. There is life after TBI and some people can find their way back to 100% recovery. I wish you luck whatever your decision. Every situation is unique.

Hello my name is Kevin Martin and I understand exactly what you were going through going through something very similar and myself only I am the child in the situation my father was hurt very bad in a Trumatic brain injury and he was like my best friend he raised me and he did everything we did everything together he told me and taught me everything I know now as you stated there are outburst of anger constantly and he hates me he doesn’t want me around he tells me he doesn’t want me to be part of his family anymore and he blames me and my mother for his faults and what’s wrong with him but I know deep down inside it’s not his fault we’re trying to stay Trying to stay strong but I don’t know what to do it drove me into a drug addiction for a while cause I didn’t know what else to do to cope with it I couldn’t stand having the person that raised me and love me more than anything in the world to turn around and told me he hates me that he doesn’t want me to be part of his family morning when I did nothing at all different than it ever done in my entire life it’s hard and I understand what you’re going through if you ever need someone to talk to you can always message me

It can take a while sometimes to recover personality. I had radiation treatment on my brain three years ago and recovery was very slow, I'm feeling better now, more myself. I didn't even realise how bad I was because it wasn't just that I wasn't motivated to help myself, I was getting couselling but I was just angry with the counsellor the whole time because every little thing was so hard. I had problems with noise as well and light, it was really cruel on me and the people around me. I started to isolate myself too as I didn't want to lose my temper or get irritable with people, for me it wasn't emotional it was cognitive, I just couldn't tolerate much input to my brain but it would have seemed emotional to others, often there isn't the time to warn others that your brain is overwhelmed and you just have to get away as fast as you can and go somewhere quiet. It does take your soul sometimes and it can take a while to come back. I hope you don't get a divorce because I live alone and it's lonely, stick it out with him, as he could improve over time. Take care

Unfortunately, we divorced in July 2019. The sad part is that the entire family was effected by his decision. He’s already moved on to another relationship less than a month after our divorce was final and I have to move on with lots of self care to get through this. Hopefully stronger because of the experience. I think he is back to his old self but will never admit anything to me. I guess he had a hard time with the holidays. We all did. The family said the glue that held the family together is gone....it’s sad....

I hit got in an accident on my birthday 1/20/94 and I honestly feel alive now happy, motivated, and free full of God love. But I dont feel like I love my wife I feel like I dont know her anymore and I want a divorce any advice?

If that is really what you want and have made every effort to try to rekindle the relationship with your wife. All I can say is be honest, upfront but say it with love. Give it to God. Don’t hide your feelings and communicate with her. Please understand her side and what she is going through. Divorce is not the answer....there is always hope if your both willing to give 110%! Wishing you the best.

I feel your pain I’m too devastated to go into details. M husband of 12 years had a motorcycle accident and now I’m the blame for EVERYTHING. He hates me. We no longer live in the same household. Every single thing isn’t my fault. You’re not alone. I know it’s hard and it’s ok to be weak but don’t stay in that place. It’s hard to mourn the death of someone who is still alive. We will make it through this.

I am so sorry... You are right, it not your fault. You are mourning the death of the person that you loved and who loved you and now dealing with a person you don’t know. Death of a loved one and Divorce are the worst things to go through and I completely understand what you are saying. You feel like you are doing both. I found some peace when he left and can now begin healing with the help of friends, family, giving it to God and a counselor. I wish you all the best. You can’t help someone who does not feel they need help and the emotional, mental abuse is horrible, amongst other things is not something you wish on anyone. We will be okay....stay strong girl!

You are strong and knowing when to let others help is a part of that. I love that you also know to lean on GOD. You are an amazing woman and I am blessed to call you friend.

Love you too my friend....Thank you for being there for me.

It's encouraging we can share our journey on forums like this. Your story is much like my own, but I am the husband. I am in a place I have never been, dealing with things I have never dealt with. All the things I used to look forward to, I now fear. I don't want a life of solitude in a dimly lit room but the further I get from there the more I can count on dizziness and disconcertion to take hold. I am flat, and grieving what I have lost, I do not relate to my wife where it was once seamless. Stimulation the prevalent force at my child's games, my friend's dinner get togethers, restaurants, church, etc., and I haven't got to skiing, boating, travel, but those too.

I am aware I am different and I too so miss the man that I lost. You can't fake joy, charm, and charisma, nor can you mask pitty and depression, and even if I could I have no energy for it.

So, what's left? A survivor of 3 brain surgeries and an amazing women told me, your work starts after the surgery. I didn't die on that table and I am not going to stay where I am. For me, after getting very low, I suppose my shift is to work toward hope, allow myself to grieve, and find things I am grateful for.

If someday I am better then what can I do today and what should I try? I know things will be hard so I don't expect them to be easy or fun and I will try.

I guess I felt compelled to respond to you, b/c it's nice to know others are dealing with the same problems, maybe we don't have the answers but at least we aren't alone.

I too understand these struggles. I was in an a car accident 4 years ago that completely changed my life. Evey day is a struggle for me since my tbi. I often feel very alone and misunderstood. I have trouble with relationships. I have trouble with communication.I used to be so happy go lucky now i get aggitated easily. Overwhelmed easily. I cant concentrate. I cant learn new things, remember things. Im very light and noise sensitive. I have epilepsy now. I can no longer drive a car or fo the things i used to do. At first i tried to work and keep up my old lifestyle but i wasnt the same. No one could understand me.I had to work twice as hard to do my same task and everyone pointed out my mistakes.peoples expectations of me where that i could do the same things i used to and i was angry because i kept failing. I was so stressed. The fatigue was overwhelming and i struggled to remember the smallest things.Apparently i was also having partial seizures multiple times a day and i had no idea what was happening. My relationship i was in failed. I tried go get a new job and i was completely unable to process information. That didnt work out then i got another job that i thought anyone could do and i struggled with that. My self esteem has suffered. I am no longer independent at all. I used to be so independent. I have severe depression and anxiety. All this has led to the generalized seizures.I remarried and that relationship has also suffered.no one understands me. I have been told from everone around me at some point to get over it, or dont think about it, or i dont want to hear the same ol thing all the time.it has ruined my life. I have gone to counseling, i have prayed, i feel i have tried everything to be a new normal but that new normal, is very misunderstood. Maybe very unaccepted by mysef and those around me. I feel like i dont fit anywhere. Its a lonely place to be. Also financially, its a struggle. Cleaning is a struggle. Staying on task, is a struggle. Finding the right words to say, is a struggle. Does it ever get better?

Dan B
Thank you for you words of affirmation of what I suspect my husband is going through but is too proud or scared to share with me. He won’t go to counseling or doctors. He believes he is fine when we all see he is not. It is very hard to watch and feel helpless to the point of hopelessness. All I can say is try. You’re on the right path. Don’t give up! Try everything! Pray, communicate even when it’s hard or you don’t want to. Do it anyway.
I wish you and your amazing wife the best of luck on your difficult journey. May god be your light and hope for better days to come.

Thank you for your kind words, and you're right about my wife; she is amazing, and I will let God be my light and hope. Your words reflect your quality, honesty, and spiritual strength. I too can identify with not seeking help or advice from counselors or doctors, everyone encouraged me too, but to me, there was no point. I knew the problem, and they couldn't fix it, I wanted back what I had and they couldn't give me that. So pitty took hold. I finally quasi-acquiesced to my brother's insistence and emailed my neurosurgeon, a subsequent series of godincidences followed that led me to see that I had to accept my new circumstances and although I had changed I have never been a quitter and I would not allow pitty to keep me where I was, so wherever this road goes I will fight not to lose anymore and to regain my life, maybe it will be different and for sure it will be a struggle but I'm gonna fight and I'm not going to quit.

I was in an accident Memorial day 2015 since then I have been battling with pain, depression, anxiety and anger. I currently still see typically see 4 to 5 doctors a week. Last year is in serious depression state, I was done seeing doctors, I was done with all treatment. In January of 2018 I finally had surgery on my neck. They fused my vertebrae at 4-5 I thought I was getting better, in all acatuallty I was getting worse a little at a time. As the months came and went I was getting more irritated, angry, verbally assaulting. Then I would get better for a while and then it would be like before only worse. Soon I became all of that as well as physical in my rampage. Soon it was happening more often than before. My girlfriend said she thought it was from my tbi, my son was reluctant to say much. Eventually it got to the point where it was happening every couple weeks. I knew something was wrong but unsure what it was. After several months of this she was at a point were she was done. We were able to patch things up for a while and then one night I lost it completely. I don't remember everything about that night I do remember having uncontrollable emotions and feelings. I was out of control, I broke a lamp, a few small trinkets and hit the wall, that wasn't the worst part. At some point during this rage I hit her head with my head. She let me stay the night and the next morning I got up I tried to apologize this time it went to far. She brought me coffee left me take a shower we talked for a while and then I left. At first I tried to apologize for my actions and I was trying to take care of the things that I broke. At first she was willing but after some time she had put her wall up, who could blame her. We have known each other for most of our lives, we have been together for 3 years just after my accident. She generally sees me once a week, she allows me to hug her and text her with an occasional phone call. As of now I'm in counseling, going to a tbi/mental health clinic and working on myself. I'm not blaming anyone for what I've done although I have asked family and friends if they seen such a dramatic change in me why didn't anyone step up. My answer from my son was we didn't think you would be open to it, more than likely he was correct. So know I'm worried that I may have lost the best woman to ever walk into my life. Before Lisa I didn't know that life could be so simple, I was always a workaholic. Never living life, didn't know what that actually meant. She has taught me more, shown me things that I would have never experienced. I learned that no meant no ( a personal thing) I could go on for days about the things I experienced. With all this being said I know that I mentally, emotionally and physically hurt her. I'm looking for advice from everyone if there is some way that I can give her trust back in me, back in us. Like I said before I have known her for most of my life, we started dating 3ish years ago. I honestly knew from the first time we kissed on our 3rd date that she was the one. I have never been married, I have had some long term relationships but the night she kissed me it was different. I changed for the first time in my life I was truly happy and in love. Does anyone have any suggestions, advice or just general comments on what I can do. I am honestly and truly in love with her. She told me yesterday that love can die my response was that I have seen trees burnt to the ground and yet they find a way back to life. Again I will listen and take any advice you have for me.
Thank you
Richard

hi I am new at this my husband suffered from a brain injury about 6 months ago well he has totally changed ( split personality)..I dont have anyone to talk about this I was dealing with it by myself his family didnt help none and now my marriage is gone down hill I dont know what to do or no one just to talk to I just wish that I had some one to talk to I am just so lost and scared for my husband is there some one that can help me and HELP HIM

Hi. I'm so sorry about your husband's injury and how lonely you are feeling. I want you to know that you are not alone in this. Neither is your husband or anyone else dealing with a brain injury.

My husband suffered a brain injury in 2008 during his last deployment to Iraq. We've been dealing with the ups and downs for 11 1/2 years.

Your story sounds so familiar. Most families and/or spouses don't know how to deal with the after-effects of the injury so they slowly fade into the distance. There are however some of us that stick with it and work hard to figure out a way to get through each day.

I will tell you that I'm impressed and proud of you for reaching out. If you need a safe space to be heard. I will listen.

My husband also had several strokes and has been in the hospital almost 5 months now , his is helping, I do have a ton of friends, but please believe me , it does NOT make A difference , everyone will act different toward you , it’s plus they will judge you for not taking care of him properly ,, so my point better off alone ,, but I feel your pain ,, Samantha a wife still in shock

You commented on my Birthday, which sucked me in to comment.
I, like your husband, am dealing with the results of a TBI. I have changed so much that I can hardly function from day to day. Personality changes is one of my issues as well. My girlfriend reassures me that we will take it day by day and will adjust together as time moves forward. 22 months later, I am worse off, but our love continues to flourish. If you genuinely love this man, Please stay strong for you and him. Try sparking his interest in new creative ways to get his attention, in time he will give you HIS ALL that he can. I pray that you two get through these troubling times. Hold on to your inner strength and good luck.

I know it sounds cliche but get counseling from a therapist. My husband of 29 years had a massive stroke and less than six months later - even though he couldn’t care for himself - he decided he wanted a divorce. Because of his accusations of abuse I had to move out of our home. One minute he was so in love with me and it was like we were newlyweds and the next I’m accused of purposefully causing his pain and problems taking care of himself. His moods would flip flop from second to second. I had to leave to protect myself. I’m still grieving the loss of my pre TBI husband. The only thing that has kept me going is my counselor confirming I am not crazy. Unfortunately my husband had refused all forms of counseling. Get professional help. You can’t do this on your own and keep your sanity. Start off by calling his doctors and get a recommendation from them. I wish you a better outcome than mine.

My husband of 20 years had a TBI in a car accident. Like your story I had to leave him but for his uncharacteristic cruelty. Its been a year and I still cry myself to sleep. He doesn't seem to care at all and hasn't lost a nights sleep I am totally rejected and abandoned. I have a good family helping me. I can't find a therapist or anyone to talk to. I'm absolutely stunned by the complete change in my husband. He was once a funny, happy go lucky, brilliant guy. I don't even recognize him now he is so surly and cruel. He got our home, making me literally homeless. I casted aimlessly about for 10 months trying to get him help or hoping my fellow would return; but it never happened. Hardest for me ks I'm devastated; he's not upset whatsoever. I don't think he thinks there is anything wrong with him. He has no empathy or compassion at all! How do I move on? I'm 65 he is 60.

I have gone through everything you have. Find a therapist and church. Honestly my girlfriend of two years left me for another man. She has a tbi. She does not even care. It hurt massively.

I know exactly how you feel. Get some counseling for you if you can. I am in counseling now and I have lost the love of my life after 14 years. He too refuses counseling and doctors. Feels he is better when deep down he’s not. Take one day at a time and focus on you. I am so sorry for your loss but know you are not alone
Devastated wife of 14 Years.

Its been about 14 years of dealing with a want to not keep on living. I found out i cant get my dream job today.. add stress and a crushed dream to a 23 year old who has been tryed to get his life togather for 7 years doing odd jobs. Im fit in all ways but in part of my brain the hypothalamic part wont cool so out side work in the sun may one day kill me. I cant get hired on. I dont take any pills but i smoke its a catch 22 with my stress. A part of me all my life wishs i died in that car crash. Is this what my life has to work with worrying about stay cool and randomly being awake for days on end then the god sent crash to a hells dream to wake up and worry about how i will be able to work to retirer at 50. Will i even make it to 50. Im not in bad shape im just moody over the smallist things i get confused and forget to drink and eat about every day that can last 10-50+ hours if its 76º+ I sleep 75º- im awake im sleepy while the suns up and wide awake after it sets i have not ever cared for bed time so its the only up side i found. I dont tell anyone about my head pain presser its to destracting to doing any thing like walking or driving it just there some times. T.B.I sucks!!!! For life.

Hi, I too have some brain problems after hitting my head, I found it hard to think that I needed to talk to someone. You need to write down that asking for help is all you have to do for the first step.
Ask anyone who you are with at home or work for help.
Tell them your brain is not working properly. Do not pretend to them or yourself that you are OK.
You might need to keep asking different people till it works.
Things get a lot better when you only concentrate on asking other people to help.
If you can, write down what you need, food water rest medicine doctor. Show this to other people, when you can, look at it and do something on the list.
Ask a friend to buy you lots of easy nutritional food and drink and then rest.
Ask people around you for help.
Accept, meditate, breathing excersises all work for me.
Love peace and hugz from Caroline xxxxxxxxxxxxxxxxxxxxxxx

Greetings,
[TRIGGERING]

2 months ago my husband walked into the bedroom and shot himself in the head. Six years ago he was in an accident and suffered a TBI. He went from being a successful businessman to being on disability and having seizures. He had to learn how to read, write, walk, etc. again. He lost most of his friends, his fiance left him and that's where I came in.

I had known him for years prior and even had dated him pre-TBI. We fell in love. Yes, he was different, he was actually a softer more sensitive person than he was pre-TBI. But BUT it waxed and waned. Huge mood swings, ideations, violent seizures, obsessive lying, even stealing - the dishonesty was the difficult part for me but I learned to choose my battles.

We had come so far, HE had come so far. I helped him with his diet, taught him meditation, the list goes on. His seizures reduced massively, and his moods weren't as erratic. We had been engaged since 2014 and considered ourselves husband and wife. I had faith in him. His ex-wife withheld the children from him often, something she has done since the divorce pre-TBI. She was constantly creating dissension in his/our lives. Long LONG story short he hadn't seen or spoken to his kids in 8 months and had been sleeping A LOT! He would often say, "if I ever lost my kids id kill myself." He said he survived the accident and was on this earth because of the love he had for his kids.

A week before his suicide we had gone to his dr. regarding the sleeping, and quite a bit of other concerns. I was worried. I saw signs of depression but never saw signs he would do what he did in the end with me right in the other room. He awoke that morning happy, we had made our reservations for our trip, he hugged me and said he wasn't going to sleep his life away anymore, that we had a life to live together and that he wasn't going to allow what the ex-wife was doing to him to get him down anymore. Later that day he went to the dr.'s to have his VNS adjusted and he came home a different man. I was worried he was going to have a seizure. Maybe he did -- and it created him to kill himself. When things (so I thought) were good.

Since his death I keep finding out from others - that he was stealing, pawning, using pills, and who knows what else. I'm not a naive person and to find out all of this after his death...it feels like I didn't know him. I knew he had these issues but not to that extent. I know he had frontal lobe damage and many other areas of the brain. Impulsivity was a huge issue for him. I just wish I knew if in the end it was an impulsive act, an ideation type of seizure, or what! It doesn't make sense but then it does.

Im sorry for your lose its not easy.

I was in a house fire 18 years ago and hit my head on the neighbor's house as I tried to escape. I lost both my wife and son in the fire. I then had a few grand mals and a tia due to the severity of the stress.

I am now married and have a wife and 2 beautiful children. My wife has been talking about separation. She says she is exhausted. I sometimes have a temper or say certain things in the wrong place. I have already lost a lot and wonder why I still have to lose more. I am trying to improve. I am seeing a psychiatrist, getting a few tools, losing all negativity in my life, being more positive... but every once in awhile it shines through and "boom" my life is hanging by a thread again. I have very few friends but the two that I do have are amazing. I still sometimes feel alone. Do I talk now? Should I say this here...? It's hard but I believe I can improve somewhat but I do miss the old me.

Hi Stephen, have you ever tried a brain injury support group in your area. My husband had a TBI at the age of 17 from falling four stories from a construction site. He is now 65. We have been married 30 years. It has not been easy and at times I wondered how I would survive. We started a support group over a year ago and it has been great to be with people who really understand what we are going through, both for the survivor and caregiver. It is a difficult thing to live with every day.

I am so tired of being compared to a women I don't know, the old me. I have all her old memories, her husband and friends. They all keep knocking on my door and when I answer it they are looking for her, not me. They tell me in polite ways, like "your doing a great job with recovery" "your 60% 70% 80% back to normal." I interpret this is I am not whole, a percent of me is missing and I don't have a clue what I lost or how to attain it, and yet everyone around can see the deficit. I don't want the old me to return, I don't know her. I am sorry she died. To be in a relationship with me, we will need to be reintroduced I am NOT the person you knew before the accident and the person you knew will not return. Yes I look like her, yes I have her memories, but now I am just different. To stay married my husband has to get to know the new me and how my brain now functions. Yes I use to be able to multi task, cook a big dinner, be on time, remember to charge my phone, drive, "think clearly," and was less prone to arguments caused by "small" stress. Well I am not that person anymore. If I am overwhelmed I will need some quiet time, Don't plan on me cooking thanksgiving dinner unless you want it all burned or half thawed hiding in the microwave. The functional tasks are easy for me to see the differences, after all we share the same memories. The personality differences are what always confuse me. When my husband tells me, "before your accident xyz didn't bother you." Stop the comparisons! Just apologize and say, sorry lets make this right. Give me time to think, this is a big one. My brain has slowed down, I can feel that. Too many questions/stress at once and I am overwhelmed. I can't help it that I don't respond, my brain shuts down and my thoughts drift to some sort of meditative emptiness. Were you talking? Shit, forgot to listen again, I often muttered to myself. Don't get angry with me when this happens. Try communicating in a different way such as a note I have the chance to read over and over again to process before I am expected to answer. Don't expect me to be the old person and be pissed when I don't immediately respond or forgot to listen. Ask me for clarification before you get frustrated. I will just stair at you blankly and feel even more removed. I will feel like running away and starting a new life, where the old me isn't expected. The old me and new are similar, so similar that you may often get us confused. Be careful of this fallacy, it only brings sorrow to me. I too have a deep sense of loss at loosing my old self, I wish I knew her, I guess some days I wish I was her. She graduated from college with honors, was happy go lucky, athletic, able to run businesses and manage stress like a champ. The new me falls short, and deep down I know it. But I cannot change it, so acceptance is mandatory. My dreams have had to change, my days have changed, the amount of overwhelmed I feel on a daily basis can be horrible and the fear of the uncontrolled seizures coming back if I do the slightest thing wrong, well that just makes me want to cry. I was an athlete. I still have all her responsibilities, although she took a lot on and a lot of days I feel ill-equipped. Really how did she juggle everything? I just don't seem to have the capacity. Well enough about me and my pre-injury self. Good luck to those in recovery and those who support them. I hope you find the ability to open your heart to the new person whom you share so many memories with.

I feel like you just described me, except I have been lucky enough to not have any seizures. I have had a concussion for over a year now. Some days are good, some days are bad. I feel like so many parts of who I used to be our just gone and no one understands that at all. Some memories are gone some just deeply hidden. My spouse acts like I'm the same person and expects me to be able to handle as much as I used to but I just can't. When I try to I get so overwhelmed that it comes out as anger but it's just frustrating that it's been over a year and he still can't figure out I'm no longer who I was. I used to be so good at my job and handling all of our childrens needs and multitasking. I can't do the job I used to and I miss it so much. I don't mind what I'm doing now but the longer I'm away from my old job the more I can't remember how to do what I used to. I miss who I used to be and how much I was capable of handling but I feel like the old me will never be back so I'm just trying to do what I can and hope for the best. Thank you for sharing, it's reminds me that I'm not completely alone.

I am saddened by reading this post and yet, comforted in knowing I am not alone. My husband became ill with bacterial meningitis in 2014. He was in a medically induced coma on life support for 2 weeks. When he woke, he did not know who he was and he knew I was his wife, but was unable to feel connected emotionally to the world or me (we were married only four months when he fell ill). As a result of this illness, he has frontal lobe brain damage. He also suffered a TBI when he was 19 in an auto accident. It has been a long journey in his ongoing recovery. The calm, confident man I married gone. Three years in and doing better, this May he was hit by a small truck while crossing in the middle of a crosswalk. He suffered a serious injury to his left arm which required three major surgeries in one week. He is in a great deal of pain, going to PT, and trying to heal yet once again. I have learned ways to diffuse confrontations through counseling. He just recently started counseling, too. But, I am human. I don't always do or say the perfect thing. His ability to control his anger when a stressful scenario arises is compromised. He had been doing very well considering the pain and meds he was taking and I think I was falling for the idea his brain injury was healing. I was shockingly reminded that is not true as we were presented with a high-stress situation recently (brought to us by his family who still do not understand his limitations). He became angry, throwing things, yelling, threatening. Someone called the police and they arrived. I was so upset I was unable to preface my questioning with "he has a brain injury". He broke things that were mine. And a day later I was still finding things that had been broken-which made me so upset. I don't think it's the things, but the reality and my hopes that were destroyed. He has a brain injury and this is the new normal. I can't protect him from the stressors of life 100%. I do believe getting a fresh start somewhere else may help as his therapist suggested it helps many people with brain injuries, but the reality is he has a brain injury that affects his ability to control emotions. Here or wherever we go. I miss the man I fell madly in love with. I'm still grieving that loss. I want to move forward, but I'm stuck. I love him deeply. I can't imagine leaving but at the same time I don't know if I can cope with his angry outbursts which seem to be reserved for me. My heart is breaking, again and again.

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