The Truth About Divorce After Traumatic Brain Injury

Jeffrey Kreutzer, PhD, Jenny Marwitz, Virginia Commonwealth Model Systems of Care
The Truth About Divorce After Traumatic Brain Injury

Have you heard that the divorce rate after brain injury is really high? Have you read that the divorce rate for couples after brain injury is higher than the divorce rate for the general population? If you are a spouse or survivor of brain injury, you may be wondering whether your marriage is at risk.

Media reports suggest that as many as one half of all marriages in the United States will end in divorce. In fact, recent census data indicates that nearly half of all marriages will end in divorce. Believing that the divorce rate after brain injury is higher than the general divorce rate could be very frightening.

Research has given a mixed picture of divorce rates after brain injury. In the 1970s, researchers began to study post-injury divorce rates and found that 40% of couples were either separated or divorced seven years after injury. A review of studies published after 1980 shows alarmingly high post-injury divorce rates ranging from 48% to 78%.

There is little doubt that brain injury can strain marriages. Spouses often take on many of the injured person’s responsibilities, though they may have little experience with their new responsibilities. Unemployment rates after brain injury are relatively high and many insurance companies do not cover the costs of therapy, adding to financial stresses. Brain injury often brings on drastic personality changes which may include irritability, depression, limited awareness of injury-related changes, and argumentativeness. Some spouses have reported, “I’m married, but have no husband” and/or “I’m married to a stranger.”

Knowing the importance of marriage and the need to provide families with valid information, Traumatic Brain Injury Model System (TBIMS) researchers at Virginia Commonwealth University (VCU) looked more closely at research on marriage after brain injury. They found that many of the earlier studies were carried out in Europe where the social and legal system is different than the United States. Furthermore, many of the studies relied on small sample sizes which may not accurately reflect the larger population.

In 2007, Virginia Commonwealth University TBI Model Systems researchers published one of the first comprehensive investigations of marriage after brain injury. The researchers gathered information from 120 people with mild, moderate, and severe injuries who were married at the time of their injury. Survivors three to eight years post-injury, averaging 41 years of age, were asked about their marital status. Results showed that 3 out of 4 (90/120) remained married at the time of follow-up.

As a result of their research, the VCU investigators became concerned that past studies may have produced misleading negative information. In their published research paper, the authors stated, “The present investigation does not [support] the notion that divorce rates for persons with brain injury are higher than those for the general population.”

In 2008, VCU investigators led a multicenter research team which investigated marital stability after brain injury. Information on marital status was collected at 16 NIDRR-funded TBI Model Systems around the country. This study was the largest scale study on marriage after brain injury to date and included 977 persons from different ethnic and cultural backgrounds. The research team found that 85% of survivors remained married for at least two years post injury.

In summary, recent research suggests the rate of divorce after brain injury may, in fact, be much lower than divorce rates for the general population. The news is encouraging. While some spouses report more stresses and marital troubles post-injury, some report connecting with each other in new, positive ways as they face injury-related challenges together.

Marriage is clearly an important part of our culture and a major element of many people’s lives. Still, more research is needed to better understand how injury affects marriages and what can be done to preserve and enrich relationships. First, we need to better understand how the quality of relationships is affected in good and bad ways. Second, we must develop strategies to strengthen marriages so that both partners describe the relationship as positive and fulfilling. There is good reason to be hopeful.

Here are more findings:

  • 17% of survivors were divorced and 8% were separated, an overall
  • marital breakdown rate of 25%
  • male and female survivors had similar marital breakdown rates the more serious the injury, the greater likelihood of divorce; for example, on average, people who were divorced had been unconscious three times as long as people who were still married
  • age mattered; people who were older at the time of injury were much more likely to stay
  • married; no participant 60 years old or older was separated or divorced
  • length of marriage was important; people who had been married for longer periods of time before the injury were more likely to stay married after the injury; none of the couples married 30 years or more before the injury got separated or divorced.

Other important study results:

  • only 15% of subjects were separated or divorced
  • age was a very important predictor of marital stability with older persons less likely to divorce
  • male survivors were more likely to have an unstable marriage (i.e. to be separated or divorced) than female survivors
  • cause of injury was an important factor; persons who were injured as a result of violence were less likely to be married at follow-up
  • for minority group members, persons with more severe injuries were more likely to remain married
Posted on BrainLine January 30, 2009. Reviewed July 27, 2018.

References

  • Arango, J., Ketchum, J., Dezfulian, T., Kreutzer, J., O’Neil-Pirozzi, Hammond, F., & Jha, A. (2008). Predictors of marital stability two years following brain injury. Brain Injury, 22(7-8), 565-574.
  • Kreutzer, J., Marwitz, J., Hsu, N., Williams, J., & Riddick, A. (2007). Marital stability after brain injury: An investigation and analysis. NeuroRehabilitation, 22(1), 53-59.

This article was written by the staff of the Virginia Commonwealth Traumatic Brain Injury Model System. Article used with permission. Updated September 2010.

Comments (117)

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.

The news that people stay married is not encouraging for the caregiver. I love my husband but he is a shell of himself. I am still working full time, doing all of the house work, we have lost all of our friends. I love him but I do not like him. I resent him. And Everytime I consider divorce, for my own mental health, I am guilted by family members, or by friends, or...told by lawyers I would have to give this man half of my salary for the rest of my life. We have been married 7 years. Five and a half if those years he has had this brain injury.

I considered suicide, many times. I honestly don't know why I am still alive. I don't want to be. I hate my marriage. I hate my life. I love him but I don't want to live the rest of my life like this.

So yes, to the injured , this is hopeful. For caregivers it is proof, yet again, that we don't matter. That we deserve to be gaslighted by our brain injured spouse. We deserve to have to do all of the house work, make all of the money, pay all of the bills, be alone. Completely alone.

So go ahead and claim this is encouraging but maybe also work on finding out how to support caregivers. We are people too.

I am 29 years post injury of Train vs Firetruck. Separated 3 months after 9 years. More Rehab. Back together after recognizing TBI survivors have a responsibility to attempt to pull their own weight in the marriage. Still lots of tough going. Now 45 years of marriage and looking at Marriage Fitness by Mort Fertel. Rebuilding marriage with positive steps of love.
Never give up; just keep looking for positives and focus on God and Love!

Your words were my life, my feelings. I hate my life.

2007-2008 Was a long time ago something's I can relate to and yes they haven't changed. One thing that has complicated marriages where one spouse has suffered a brain injury is the internet. TBI's change personalities and all of a sudden your spouse is a stranger.

For some reason or another one thing I have found is that people who have suffered a TBI are very gullible and easy victims of romance scams or any kind of scam for that matter. More often people who have suffered a TBI will play word games on the internet to try & improve their memory.

When playing these games on the internet usually a word game. Someone they're playing with talkes him/her into going off platform. Next thing you the person with the TBI injury is disclosing all kinds of personal information.

The TBI victims often disclose the type of injury they have, the memory issues they suffer. How they're feeling lonely depressed suffering from insomnia and of course the scammer uses all that information to scam them.

I often wish the internet or cell phones had never been invented. Because they cause so many problems with for people with medical conditions although I'm sure they save lives in many cases in fact I know they do but my point is the knife cuts in both directions.

Anyways there's my two cents worth.

I can't live with him any longer. He is luckily independent and functioning in many ways. However the emotional wasteland is killing me. I no longer exist in his mind.

Has Anyone delt with AVM removal/ brain surgery, and after effects? My spouse had this surgery 3 months ago and there some changes happening, it bleed and cause seizure and stroke like symptoms. Our marriage wasn't at it's best but 3months prior to this happening in though we were on the mend, but now I'm being accused of emotional abusing him our whole 10 yrs of marriage, and accused of making fun of him, and my family is being accused of things, were headed in separate directions now.

I should mention that my husband lost the ability to read almost anything; cannot write most words; isn't supposed to drive, but does; can't remember what he is doing as he is doing it, cannot stand crowds, sunlight, noise, changes in weather, birds chirping, etc. His math skills are gone. He cannot follow a grocery list or plan at all. He cannot visualize people or concepts. He is totally self-centred and only cares about others in relation to how they affect his life or well-being. His own mother could be dying and he would only care if it meant he had to change his schedule to see her. His schedule is very important to him. Don't change it! He perseverates on everything. "You said we'd go for a walk tonight. Are we going for a walk tonight? When are we going? You said we were going." Toddlers are much easier to deal with. His moods are like a roller coaster. Others think he is nice and seems reasonable. Sure he does--trying cooking a meal with him and you'll quickly get an idea of what it's like to live with him.

My experience with my wife exactly to the tee.
Nobody seems to outline the toll it takes on the spouse who has "done without" for the many years while being the constant caregiver for the person who seems to obvious to the huge work required to maintain her in the home.

I ended up retiring early to make it happen and at times I feel like I'm wasting my time when she refuses to help-herself by going on walks on our ranch on my arm...
Just doesn't make sense.

Your post resonates with me and the situation with my fiancé. We have been together for 4 years and he’s been injured for the last 14 months of that. I literally have boxes and bins loaded with my stuff by the door to move out today. I love him so much but life with a Traumatic Brain Injury survivor is so unpredictable (a 21 yr old kid slammed into him on his motorcycle and he went flying with no helmet landing on the asphalt). So there’s many days that I think “I’ll just leave. And the I can start my life again normal” (I’m 46). But then I have so much guilt and sorrow for him. And what happens to him? His family won’t help (He’s 53). I do love him but the selfcenterness and mood swings are almost unbearable. I cant even imagine going through the motions of any sort of love making because I’m so hurt by his actions almost on a daily basis. He’s say he’d be better if we started having sex again, but honestly it’s just going through the motions for me anyway. His body doesn’t even really move or wok like that right now. But lately it seems to be the center of a lot of our arguments because he thinks I don’t desire him. What do I do? What have you done? No one has answers and I’m getting to the point that I don’t care anymore about anything. I’ve completely let myself go as a result of being his sole care giver. I’ve gained weight. I don’t do my nails, hair, or any kind of exercise. I’m going into a deep depression. And he keeps saying “why? It didn’t happen to you?’. We have not seen a counselor together or induvuzkly. Because well who has time between 3 different therapists (PT, OT, SPEECH) 3 times a week, doctors, and trying to keep up with my jobs I do from home plus his and my responsibilities. Is it a loss hope? Do I unpack today? Or do I run and not look back? How have you guys gotten through this? How do you still find love in your heart for someone who gets mean and isn’t the person you fell in love with?

I understand what you are going through. My husband was diagnosed in 2017 with low-grade glioma which was located in area of his speech and memory. I lost my stepfather in 2015, then dealing with my then fiance diagnosis and got right to work on finding him the best brain surgeon at Sloan kettering. We got married on Sep. 7th, 2017 and he had his operation on Sep. 8th, 2017...yes very next day. His surgery was successful as they were not sure if they could get all of the tumor out because the tumor had tentacles which were entangled between his healthy brain and tumor. He had a quick physical recover and went back to work in 3mos...however, he refused seeing a neuropsychologist so he has not dealt with any issues with his brain post surgery such as anger, impulsivity, short-term memory...add to that he likes to blame other people for everything especially me(he was like this before tumor). He does not write anything down, does not put items in same place where he can find them(we have a letter tray) or uses a pill box so he can recall if he took his meds, so basically im his memory. January 31, 2017 his father literally dumped my husband's uncle at our home where his uncle moved in our guestroom for a month and then our upstairs apt. November of 2017 his uncled has a quadruple bypass, so i was taking care of my husband with his daily needs and then his uncle(who moved back into our guestroom), all while trying to process the death of the fiance I knew with the husband i had to get to know. I have been pushed, had things thrown at me, accused of cheating-because i'm too damn tired for sex-my husband always asks-"What are you tired of exactly?" it drives me crazy!!! now he wants a divorce because he is no longer attracted to me and he says because I have caused him to die little by little by denying him sex. I explain to him that I do not have a sexual appetite. Doing all this while working a full-time job,( luckily for me my position was remote) it is exhausting and lets not forget the attitude that working from home "is not work". When he argues with me for mundane stuff..it seems he just wants to start a fight-it seems my needs dont matter. I went to a therapist to deal with caregiver's stress, which my husband does not believe in. so of course therapy is out...we had one couples session and that was a disaster, the therapist tried to help him understand my point of view, however all that happened as a result was him twisting the events in a way for him to make sense and blame me of course. So, I say to you and all those uninjured spouses, or significant others that are pondering what to do- do what is best for you! We matter, our feelings are real TBI is nothing to play with especially in a pandemic...You only have one life to live -how do you want to live it?

I would recommend running as far and fast as you can. The longer you stay the harder it gets. I’ve been married for 26 years. My husband had a freak accident 5 years ago. I put everything on hold and stayed by his side 24x7 through ICU, hospitals, Rehab’s, therapies. I quit my job of 20 years and never left his side for the first couple years. Then I had to find employment with benefits like insurance. I went from wife and equal to being everything. He has came so far and is so capable of life but over time he has became emotionally and verbally abusive. He pretends he can’t do anything when I’m around but when others are here he is fine. If you didn’t know what he had been through you would never know anything was wrong. We have grown completely apart and I have lost any feelings and compassion that I ever had. Our (adult) kids don’t have much to do with him. Our friends are gone. He doesn’t want anyone around. This is completely isolating me from all of life. Now with this COVID-19 I am having to work from home. This puts me back with him24x7. He has recently became physically abusive. I want to leave and just get as far away as I can. But my kids keep giving me the guilt trip that he can’t make it alone and it would totally fall on them to have to be there for him at a time that they are just starting their lives. I love my kids more than life itself and would do anything for them. They know how to work me. So I stay. Miserably, but at least everyone else can live. So my advice to you is do not go down that road. You matter too!

This is very sensitive topic I am also a mtbi servivor and suffering a lot been through with divorce and no help around forcing to pay child support even I am on disability but because my son is with my spouse so court will decide he will take money from my disability check this is law .i try to work but some failure came but still I am trying it’s hard very hard

Cooking and things like shopping see two areas that are difficult for head injury survivors. It's the multi input, trying to think on your feet brain dog that happens. Causi.my stress and anxiety.

I feel for you.i have no support it's just me and my son who have been dealing with the issues of brain injury and ptsd.that was in 2013 from a motorcycle accident and then again in 2017 another motorcycle accident and he refused medical help.and now 5 strokes in a week and refused to go to hospital. Finally got him to go and that was when he had the big stroke and its been hell.he would say things and then say he didn't say that.he quit therapy claiming it wasn't helping him. They told him do not drive but he does he is unable to see out of his right eye but he just wants to argue with us.we know when he isn't on his medication. The hate comes out and all he wants to do is argue with us.he thinks the food has medication on it but we eat the same thing. He has been excusing me of having an affair for 20 yrs now and that's when I became disabled. He told my doctor that he wanted me off all of my medications. So since 2018 of October I have been using cbd and hemp ominteint. My son took a workcampers job so we could get him to therapy and he quit.he has put us all through hell.and nobody is willing to help us.cause of him.all of his so call friends who don't have a thing to do with him anymore they see a change a hateful person

Hello. My husband suffered a moderate-severe injury 23 years into our marriage. We are now 4.5 years post injury. For the first year, he couldn't remember our children's names (we have 4) or almost anything from before the injury. We spent 15 months in a new city so he could receive treatment on a daily, out-patient basis. We have been home for nearly 2 years. He has 10 therapy appointments a week. He is driving us all crazy. He has improved so much, but the deficits are still large. When 5 parts of your brain are damaged, there is so much work to be done. When you are injured at 53, it's a long, slow process. He is very angry, can barely stand to be around me 60% of the time, invents reasons to be angry, accuses me of things I have never done, tells me I said terrible things that he actually said to me (not the other way around), etc., etc. Our sons can't understand how I can stay, but don't want their father left alone. He's ruined the loving, supportive family we were before he was injured. You see, he was a long-distance truck driver. We only ever say him 1 day a week and he spent most of it sleeping. When he was awake, he did nothing but criticize every aspect of our lives. Now, we were stuck with an even worse version of him. We have helped him with his terrible balance, caught him as he fell, help him learn to speak again, work on every possible aspect of his recovery. He trashes us to anyone and everyone who will listen--neighbours, friends, family, cab drivers, his rehab team, etc. He told me he can barely stand to be in a room with me. He opened a separate bank account last week and yesterday he deposited a $19,500 disability cheque to the account. He's called a lawyer about a divorce. I am torn between gladly letting him divorce e and feeling like he's not capable of making that decision and surviving on his own. Neurologists say he is likely to be in a care facility by the time he's in his mid-60s. Then all the money will be going to his care and I will be left in poverty. I have my out, why aren't I taking it??

I'm reading your comment and wondering how your situation has turned out? I married my husband just over a year ago. He experienced his TBI about 11 years ago - way before I came into the picture. During our courtship, which lasted about two years, it seemed he put me on a pedestal and treated me incredibly well. We had mutual respect and love. I knew about the injury, and did think there was some "emotional immaturity," but I overlooked it because, otherwise, he was the sweetest man you could ever know. However, shortly into our marriage, he began treating me almost the exact same way you describe: seems to invent reasons to be upset with me, accuses me of things that he himself has done/ is doing, has completely unrealistic expectations of me (I lost my father, whom I was very close with, just three weeks after our wedding and I'm an only child so had to settle his estate as well), angry outbursts and raging where the reaction is not at all proportionate to the so-called offense, and is completely unreasonable. Just earlier this week, a small request turned into a huge blowout and he left, throwing off his wedding ring and saying it's over and that the relationship is toxic. I hadn't heard from him in days, but now he's sent me a text today telling me this is his new number and to remove him from our cell account. I'm astonished and feel like the wind has been knocked out of me. Part of me thinks that maybe this really is for the best - just be done with this craziness - but the other part is so sad. I made a commitment to him when I said my vows. I'm also confused; there have still been so many fun times and special moments together in that year, too. Don't those mean anything to him?

Hi TAS. It sounds to me as if you have married a very manipulative person, who possibly has a personality disorder. However, I don’t think your hubby’s behaviour can be totally put down to his tbi. Do you know any of his friends who knew him before his injury? May be this is just him - someone who can turn on the charm for his own gains and then becomes abusive when he has gained what he can. Did your father leave you anything in his estate? Did your husband know you were going to gain financially when your father died? Could this have been a reason for him wanting to marry you?
I know it’s hard, I have been there, but living in an abusive marriage is soul destroying. Get out while you can. Be a victim of an abusive marriage, not a victim of domestic violence or a murder victim.

I can very much empathize with your life story and others here, as I'm now 58 but at 56 I experienced a stroke/brain injury. I could not get out of bed for about three months and then only a wheelchair for another few months. I've lost any real sense of time but my wife and I are now separated after 34 years of marriage and I live in an apartment with my son that is attending college and her with the younger son in his last year of high school at our house. I had a terrible time conflating conversations, disagreements and past actions with my wife. I was very irritable and frustrated hourly from not being mobile or able to do basic things like dress myself which caused many arguments daily. I will hope and pray for each of you that experiences a brain injury either directly or as a family member. At the very best it is difficult. God bless each of you, I hope you can find your paths and peace in your life.

My husband of almost 10 years was in a car accident about 2 years ago; suffered a TBI that came with spasticity affecting the left side of his body, making it very hard to walk and write. He was in a coma for a few weeks, in-patient care for 6 mos, plus another few months of outpatient therapy. He definitely could have used more therapy, but insurance is a joke and it's such a battle trying to get additional coverage. Once he moved back home, his anger was too much to handle. Throwing things, breaking things, cursing at me - all in front of our kids. They were 1.5 and 3 when the accident happened (before the accident / after the accident are now part of my daily vernacular). My oldest child was also having some developmental issues that we'd been in the middle of dealing with when the accident happened. I got him into a program with the school district, and after lots of testing we recently landed on an autism diagnosis. I was beyond torn about divorcing, but 1 yr after the accident, I decided that it was for the best - for both myself and my kids. Our marriage wasn't the best before the accident, and he'd always been an angry person. The injury magnified that. I went to therapy, both by myself and with him, but there was no getting around the effects of the TBI, and I didn't want my kids growing up in a household filled with so much bad energy. There was no way to feel good about the decision, I just knew it needed to be done. He was cursing me out via text one day, and I'd just had it. I hit a wall and I was done. His behavior is markedly better now that we're divorced, although it was quite a journey getting here. Had to kick him out more than once for bad behavior; he has come to understand that it will not be tolerated if he's to see the kids. Drawing that hard line was important. They see him every other weekend and Wed for dinner. I was lucky in that his brother offered to live with him before I even said anything about divorcing - I think he could see it coming. Life as a single, working mom is hard, but I draw on every resource I have and have a wonderful family that helps juggle things a bit. A year ago I felt awful. Today I'm much more optimistic and things have finally settled down. He is also making progress, so perhaps it was for the best. Best of luck to you all. It's a tough road to walk.

My husband had a sca and now abi its been almost two years he calls me mom and can’t do anything for himself. I live through hell every day we have children and I have
Lost my best friend my soulmate. We are in our mid thirties. I now have to get him in a skilled nursing facility because if I don’t I won’t be here for my kids are him.

I forgot to mention that he just turned 30. We have been married for 4 years and this is our first child. I can’t physically help him with all the care that he needs and my inlaws are doing everything. I feel I am married to his family and the differences of opinions and comments towards me can be cruel at times. I don’t feel this is a healthy way of living and I don’t want this life for my baby. It is devastating that my husband can’t communicate anything to us or be a bit independent. It’s only been 8 months and with my newborn’s care and everything else in the house. I feel very tired all the time. When do tbi survivors start communicating or gain some memory back? There are so many unknowns that drive me crazy since I have to make financial decisions as well. I know that 8 months is still early in their recovery, but I don’t think I can be living with my inlaws (4 of them) for long. Right now I have no marriage and I am trying to do the best decisions for my baby as well.

My husband and I had a horrific car accident while I was pregnant on July 2018. I didn’t get as hurt as he did. He had his leg amputated and was in a coma a couple of weeks. He had his pelvis broken and had multiple surgeries. We were 5 months in hospital. Being pregnant at the time and not leaving the hospital to be with my husband was really tough. Seeing him this way hurts so much. He acquired a diffuse axonal injury grade 3 and hypoxia due to the lack of oxygen. It’s been 9 months post accident and he is receiving therapies at home. He is total care right now and my heart feels heavy seeing him this way. He has limited mobility and we have not found a way to communicate with him. He smiles and eats with help. I am devastated to the thought that he can remain like this. I am trying to raise my newborn and work and take care of all the medical stuff, but it’s becoming very overwhelming. I have the help of my inlaws since I can’t physically help with my husbands needs. I have no option to not work since I have to maintain our house payments and support everyone that now lives here. Is it to soon to see improvements? I love my husband and wish he coukd be able to enjoy our newborn. I don’t even know if he knows who we are. It has been a life changing event that I wish for no one.

My husband is 75 and I am 65. 12 years ago he refused to get a second opinion, and had brain surgery to remove 2 large non-cancerous tumors. He was left with frontal lobe brain damage. He also has only 10% of his hearing left, not due to the surgery. The man I married 39 years ago died on the table. This man is mean, cruel, argumentative, aggressive, completely self-centered, selfish, and gets in fights easily with anyone who he thinks is doing something he doesn't like or doesn't want them to do, like risky driving (doctors said no driving, but he won't stop), road rage, fights in restaurants, almost getting arrested for causing disturbances in airports...refusing to eat what I cook (I am a good cook) because he wants fast food. He is a raging diabetic too, and will not adjust his food. I could go on and on. I know his triggers and try to manage life around them, have tried numerous doctors who really haven't been able to find meds that will help manage his behaviors. I am still trying to work full time, but I am his caretaker. He doesn't understand what's said to him, and he blows up frequently. He has a fit if he doesn't know where I am every minute of the day. I have no friends left. I am totally spent, emotionally, physically, mentally, and spiritually. My advice is get the heck out if and while you can. I wish I had.

I understand how you feel. My husband went into cardiac arrest two years ago, survived, but is a stranger to me and my two young sons.

The man who was my best friend and my “go to”person never woke up from that 4-month coma. He is mean, argumentative, and has no short/long term memory.

He was the most financially responsible person I knew, but shortly after coming home racked up over $26,000 of credit card debt that I am still struggling to pay off.

I know none of this is his fault, but my children and I are suffering right along with him. All we do is fight, and I am currently looking into divorce options.

I am sorry for all that you are going through, but, selfishly, I am glad to hear that I am not alone. I have no support from my family. They only see his side, and call me cruel and cold to him, but they don’t live in my house, and they have no idea what we, as caregivers, go thru on a daily basis.

Stay strong and take it one day at a time. That’s all we can do.

Believe me, you are not alone. I had a massive stroke 5 yrs ago and my husband of 50 yrs treated me in the most horrific ways. I have no means of my own so I just love with this. Your advice is valid. Run away while you can do so.

I survived a 50mm brain aneurysm rupture in 2010. My symptoms started well before that summer day in July, I became someone that I don't even know, I act out and can't understand how to control it. My wife has always been difficult, but I love her nonetheless, and she has taken great care of me and our children. I dont think she knows what I go through everyday and its hard having her go to work while I sit in an empty house with nothing but my thoughts. Truly I am at a loss, I feel that the man I used to be died over 10 years ago. What's life without your identity? I wouldn't wish this life on my worst enemy.

Are you able to engage in programs and activities outside of the house that are geared toward people who gave survived TBIs? Check with local social services department or the Easter Seals program?

My folks have been married sense they were 18 years old. My father suffered two bleeding cots on his brain at one point he did not now who I was. Today they are in their late 70's and getting a divorce my mother has put my father in a nursing home and divided the properties, so I am told. This is hard on me for two reasons, one I am daddies girl, and two my partner suffered a massive stroke this Feb 2018 and he is not the same and we are having problems in our relationship. I am so overwhelmed.

What I experienced the other day absolutely had to feel like what it feels like when a spouse dies. When I woke up, I realized that my best friend, my strong, unselfish, helpful, resourceful, loving husband of 12 years was gone. It hurt so bad, and it was surreal. It's plain shocking. I'm sooo very grateful he is not dead! My husband had a stroke January 2017. He had some paralysis for a few months and lost his job and health insurance during the rehab time allotted. He was denied social security which was not the overall goal of course. He continued to rehab on his on refusing to go to a doctor and get rated for low income. During March of the same year, I became ill and continued to progress. I am a colon cancer survivor now plagued with gastroparesis and neuropathy of the stomach. I also am a veteran with PTSD. My health quickly deteriorates in June of this year. I am seeing my primary doctor to discuss feeding tube just to make it through winter to handle m' own end life affairs. My husband behaviors range from 10 yrs to 17 yrs old. He is 50 and I am 57. I tried to tell his family about his behavior and they attacked me, The saddest part of all of this is my husband doesn't remember me as his awesome loving wife whose been there for him and with him being everything a wife is suppose to be. He sees me as someone who doesn't like him. He doesn't understand that he's different. I had to get honest with myself real quick today. I did everything I could to get my husband to go to the doctor! He refused. At this time I'm too ill to deal with someone who ranges from 10-17yrs in behavior. My husband is in God's hands and so am I. God knows all about this and wipes my tears. I was able to convince him that bankruptcy was best, which will happen Monday and he started a new job recently. I only want the best for him. I am going for a divorce ASAP!!!! No room for counseling. My condition is too fragile. I feel for all of you and glad I found you. I hope later on my husband will remember that we were sooo happy together and we both just got sick and were incompatible. Maybe we could have a conversation one day :(

It’s destroying me and my family, Thankyou for sharing Xxx

I don't know if anyone still reads these but this is a real need to me... I'm 28 and my husband is 32 we have been married for 12 years and we have 3 young boys 7, 6, and 1 we had another child but he passed away in 2016 (we made it thru that tragedy together). Last month my husband was hit by a car while he was on a bicycle. He has severe traumatic brain injury and he was in a small coma from two weeks. He came out of it and at first was confused and sweet and kind but now he's still confused but mean, hateful and cruel. I love him with all my heart and he's the father of my children and I don't want to divorce him but he scares our children and he's mostly mean and cruel to me but sometimes he can be towards them. I don't know really what to do or if he will ever be my husband again. When I look at him I see and hear my husband but when I look at his eyes I see a complete stranger that only wants to hurt me and cause me pain and sorrow. I'm not the try to jump and divorce my husband just because of hard times but for the first time in my life he really scares me and I'm afraid to be alone with him... What should I do? Do I wait and give him time? Do I walk away now while I still can? My heart is saying one thing while my head says different. All I can do is cry I can't sleep I can't eat the only thing keeping me going is our boys and the thought that maybe he will come back to us if not for me then for our boys all they do is cry and want their Daddy's... I'm so lost please someone give me some advice... Please

If anyone is reading this looking for advice. I just want to say don’t stay for too long. Don’t stay beyond yourself. My spouse was in a motorcycle accident 1.5 years to the day after we were married. Those first 6 months of being a caretaker were hell. He was his normal loving self for the first two weeks but as time passed his mental state went down hill and his personality started changing. We were in our twenties. He is 5 years older than me and I was fresh out of college on my first job. I had moved 800 miles away from my family to start a new life with him. His family had a low opinion of me and he was always kind of the black sheep. Suffice to say there was no support for me as a caretaker. People always root for the survivor but very rarely for the caretaker. As his mental state declined I took on more and more roles breadwinner cook house keeper nurse entertainer social buffer financial planner auto mechanic and all around decision maker. He became depressed dependent needy sexually aggressive socially awkward dishonest disorganized angry and unwilling to help. Every thing became about him in his world and in mine too. He was always a brilliant and charming man. But as his mental state deteriorated it became clear that he had been using some of that charm and cleverness to deceive those around him. Lies that he had told me before we were married were uncovered and we began the difficult task of rebuilding our relationship mid TBI recovery. Almost a year later when he was released to drive and go back to work dishonest was discovered there too and he was fired. I had thought it was now behind us all but now that he was functioning enough to contribute to the household through chores or by getting a job he didnt. I accepted that his personality and abilities changed and encouraged occupational training or trade school. He tried a few part time jobs and eagerly accepted my offer to put him back through college. These all fell through for one reason or another. All the reasons why he couldn’t wouldn’t didn’t contribute became my or someone else’s fault. It was a six year struggle. I was always in care taker mode but as time went on he became more demanding. His family viewed our failing marriage as the fault of a tragedy and a unsubmissive wife. I became severely depressed and fought through it every day to go to work and provide for our family. I would only consider life for 5 minute sections of the day. I was having panic attacks 6 times a day and could barely think. He started using this against me to isolate me from my friends. He would say he would do something and then not do it. Then and tell me I had misunderstood or shouldn’t expect him to do it anyway because after all he had a TBI. He couldn’t do this or that because he had a TBI. It was my responsibility I was the more capable one anyway. I became suicidal and began cutting. I focused the issue inward. Then we tried one last go at trade school. He had to move into the dorms. I gained some personal space and began seeing this emotional abuse. When he didn’t do the assignments, flunked out and came home telling me it was my fault I didn’t feel guilty this time. I felt angry. The coin flipped and I was no longer on his team. I was desperate to defend myself and in my sleep my dreams became so violent toward him it scarred me and I considered suicide again. I sent him back to his parents and filed for divorce. It’s been a year now. As time goes on I feel myself healing from the scars of emotional abuse that I didn’t even know was there. I almost didn’t get out in time. CARETAKERS please don’t let this happen to you. Abuse from the survivor of a TBI is still abuse. Yes an injured person may suffer frustration and take time to regain the social skills to handle that frustration appropriately. Just make sure they have good intentions toward you before you sacrifice your self on the altar of their health.

My husband had a brain bleed 2 years ago. His personality changed. It will always be changed. He is still in a wheelchair and needs help eating. We had some arguments and anxiety and trouble regulating emotions the first 8 months. Now he does his work out twice a day and is content to watch TV the rest of the time. I try to take him out for a car ride now and then. Try to get him to sit out back on the deck in the sun and visit about our garden. Try to make new dreams with him. We are 49. He seems to live in the moment. He can remember the past very well. We havent had sex in over a year....not sure why...Our marriage wasn't the best before the stroke. In some ways it's better now....I think about leaving...I think about staying....It has been 2 years since his Brainstem Bleed. My husband got nasty with me and I left him with his mom for 2 months. He accused me of spending all his retire money. (It was spent on taking care of him 24/7). Once I came back he was nicer. He tried to rehash some stuff from the past and I told him I was sorry for hurting him and could we please move on and never bring it up again. He never has. Sometimes I wonder how much of a difference I am making. Would he even miss me when I am gone. I went to CA for a couple days and he kept his phone on the whole time and texted me! It was really sweet. He tells me....thank you my love....all the time....

To original comment poster; You expressed how I feel so well. We have lost everything except each other (in the flesh). My heart is broken. He is cruel. I am so sad.

First off, I’m so sorry for the tragedy you and your family have experienced, and will continue to experience. I see you and I’m with you and I’m sending love, wherever you are.

What you are feeling is all very realistic, rational, and (dare I say it) normal. I am not a medical professional, so the only advice I can offer is from a place of understanding: my husband experienced a severe TBI three years ago and was also in a coma (GCS of 3) for two weeks. Even with so much time having passed after my husband’s injury, he is still overcoming, re-learning, and compensating for the damage. At the beginning, what you describe in your husband also happened with mine - he was sweet at first, and then slipped into behavior that was aggressive, angry, and combative. But it wasn’t permanent, and through months of inpatient rehabilitation, and years of community care, that frightening behavior has mostly faded away. He is still impulsive, and argumentative sometimes, and in some ways the person whom I married will never return. I miss the old him everyday. But he’s a new version of himself, and there are many joys and (good) surprises with him. He’s a good man.

Your husband has age on his side. As he was injured riding his bike, I’m assuming he also has good physical health in his favor. One month post-injury is not a long time. There is a long road ahead but he’s got a few things in his corner already. What do his neurointensivists abd physiatrists say? Has he started physio yet? Even just a few minutes (more each day) of gentle physical activity, like squeezing a stress ball or sitting up in a wheelchair, might help stimulate his brain. But again, I stress: I am not a doctor.

Brain injury affects each person uniquely. To my understanding, there is no normal path of recovery - what happened with my husband over years may not be what happens with yours. Yours may improve even more! But I understand that you have kids to protect. It’s a traumatic situation for your entire family. My advice would be to wait to make any big decisions, like divorce, for two years post-injury. I was told that the timeline for understanding an individual’s TBI is 2-5 years, so I say wait the two years. With your support and patience, and with rehab and community care, your husband may be able to re-learn the way you and your family need to be shown love.

Do you have someone that you can turn to for support in all of this? A grief counselor, social worker, psychologist, etc? I’m sure I don’t need to say that your mental health is important to preserve and protect. What you have gone through and will continue to go through is traumatic and heartbreaking and you need someone to care about you too.

These days, my husband says the only reason he has recovered as much as he has (back to work, officially released from the hospital five months ago) is because I stuck by him and encouraged him, and sometimes pushed him with some tough love, every step of the way. The man you fell in love with and the devoted father to your kids is still in there: give him some time to come back to you.

Have you talked to your neurologist or a neuropsychiatrist that deals with TBI? My husband had a stroke 3 yrs ago and his personality changed and he used to use vulgar language, was mean and basically impossible. He is going to a psychologist now and they put him on some medication and he is doing quite a bit better.

Hi. My issue is my husbands symptoms showed up 8 1/2 years later. My husband had a brain injury about 13 1/2 years ago. A tree limb fell and hit him. He was in an a coma for about a week. He was nice and sweet and took a few months to get back to the way he was. It was about 8 years later I started seeing signs of depression and arguing about everything. I tried to talk to his neurologist and they wouldn’t listen. Privacy act. He started to get emotionally, verbal and mentally abusive to me and my 4 kids I’m still with him. It has gotten really bad. My kids are older now but they have changed because of it. You don’t want to walk away because you love them-husband but you have children. They need to be in a healthy environment. I have grown to resent my husband. I feel for you and please talk to someone professionally.

Can I get my marriage annuals because I had a crash and wasn't competent but 2 yrs , I'm competent and didn't realize I would never marry her and now she threatens me to take my money that has supported her and our 2 children, but marriage was never going to happen before my brain injury. I want an annulment

Hire a proven attorney with experience in TBI.

Can I get my marriage annuals because I had a crash and wasn't competent but 2 yrs , I'm competent and didn't realize I would never marry her and now she threatens me to take my money that has supported her and our 2 children, but marriage was never going to happen before my brain injury. I want an annulment

I am a caregiver to my husband. We were married 3 years when he had Encephalitis which causes an aquired brain injury. He is physically ok, but has short and long term memory issues, cognitive issues, emotional issues, as well as many other issues due to the brain injury. He is on disability because he can't work due to cognitive/memory problems. I work full time, an hour away from home, and he sits home watching tv and going on the internet all day. He can't really figure out the computer very well so is always asking me things (confused about his email and facebook). He has Erectile Dysfunction due to the brain injury but is obsessed with wanting to have sex. He joins dating sites, buys "free" - soon to be billed $79/month pills that he hopes will help. He is not really abusive, but basically acts like he's a kid. I FEEL like he's one of my kids, not my husband and I have no desire to have sex with him even if it worked!!!!! He is like a leach and when I get home from work, he sits right next to me on the couch, almost on top of me... lays his head on me like he's a child, has to ALWAYS be sitting right next to me so that I have NO personal space!!! I know he's craving attention from me but I just can't give it to him in that way... we hold hands, I hug and kiss him but I am not "in love" with him any longer. He also does NOT shower, because he forgets so sometimes he goes almost two weeks and I can't stand him laying his head on my shoulder because he smells!

He does the following around the house. Makes coffee, feeds the dog and brings him out, mows the lawn and snow blows the driveway. He has broken the lawn mower and snowblower SO many times it seems like any time he touches them something is broken and it causes SO much money to fix everything.

I am only 53 and he's 54. I am just so depressed with the thought of spending the next 10-20-30 years with him... I can't divorce him or leave him, because he always tells me "he wouldn't be able to live without me" and he sometimes thinks he would be better dead because he has lost the "old me".

I feel like i'm a horrible person because I should be happy that he survived the illness...

I wish there was a place to talk with others in the same situation... but everyone on here seems to be anonymous.

:( I am just so unhappy!

I forgot to say. In the UK we have a wonderful group called Headway (headway.org.uk) . As you have to blow snow from your drive I am guessing you are in America. Try googling ‘Brain injury associations/groups near me’, I would be amazed if there wasn’t a group within driving distance for you. If not, I am sure there would be some others who would love to join a group so why not set one up? Apart from anything else it will give you something to do.
Headway holds group meetings for tbi and abi sufferers and also meetings for their carers. The patient groups consist of a chat, coffee and therapy etc. The carers have comfort in knowing they are not alone.
Hope this helps.

Hi, I speak as the ex-wife (nearly) of a man who had a tbi. I also suffered the same ‘ I cannot live without you’ pressure in the early days. 2 years after my ex’s accident he had spinal surgery and then went completely mental ( can I say that?) . He became the abusive person he still is - 9 years later.
The only thing I can say is that if your husband was really suicidal, having you around wouldn’t stop him doing it. It seems to me that your husband has got himself into a bit of a rut and despite you providing the ladder for him to climb out of that rut, he is just sitting there. Maybe he is frightened, knows he will stop being the centre of attention etc etc if he becomes normal again. He also has you doing exactly what he wants you to. He is behaving like a child, so treat him like one. Take him to the shower everyday, undress him and make him get in. If he refuses, refuse to sit next to him and tell him he smells. If he really wants your attention he will shower. When you cook, as him to help - get him to peel the potatoes, cut up veg etc - imagine him being a child who is learning. You can’t expect a 13yr old to know how to use a potato peeler if he/she has never seen one used.
If this doesn’t work after 6 months, or less if he becomes abusive, move out and see how things go. He will either make a real effort or you’ll drift apart but either way I think you’ll be a happier person.

Are you still on here. Your story is very similar to my own.

I’m here as well...I haven’t posted on here before but I do read postings daily. I’m in the same shoes...my husband was 47 and I was 45 when he suffered a major stroke about 3yrs ago. I feel like so many others in the same situation...”wife...now defined as his caretaker”...please respond back if you would like to talk and that goes for anyone on this site...most of us could probably never imagine being where we are in our lives right now...but we are. Talking, venting, listening and exchanging information could help all of us. If anyone would like to talk then reply back and I will figure out a way to get you my contact info! Blessings to everyone!

I'm here as well...I actually could have wrote the story before yours, by "anonymous". Not easy to feel like this everyday! Would be great to share, and learn to deal with what has been dealt to all of us. Not getting any younger here, and nothing is going to ever get any better...as it has already been about 5 years. Not fair to "him" either to feel this way, but I do...and I can't change that. Does it make any sense to love someone, but not be in love with them....it's sad. Feeling obligated, and guilty for wishing I was not in this...Don't like who I am when I'm mean, say something mean, or frustrated with him...Not healthy for anyone!

I'm here if you want to talk?

I understand exactly how you feel, for a great deal of what you wrote it could have been me writing the story. My wife came down with Encephilitis almost 12 years ago now and she has came a long way from where she started but she is still not or never will be the person I married. Her craving for attention and being another one of my kids is exactly the way I feel and now my kids are all getting older and can all drive so they need me a lot less and are gone most of the time so that just leaves the two of us and unless I am sitting there beside her or at work she does her best to make me feel bad for not being right there beside her and sometimes it doesn't even matter that it's work. Like yourself I am 53 and she is 52 and to think that there is 20-30 more years of this or more is to say the least overwhelming in many ways!! Funny I still love her but not in love with her once you go into Caregiver mode the relationship changes and I'm not sure it can ever be the same again even if the Caregiver wanted it to. Wish I had answers for you because I have the same questions and the same feelings, I just want to be happy and I'm not sure that will ever be the case again other than for moments here and there. Thing is I really don't think there are any "good" answers and I will be the first to tell you NO ONE can judge whatever decision you make about staying or going unless they have lived it they can NEVER understand!!! Good luck and I hop nothing but the best for you and ALL of us here.....

Hi there I need to reply to ur story. I'm 42 years old my husband is 49 we have been together for 19 years married 10, back in February he suffered a stroke, it was a bad one that has effected him in so many ways. I came home a couple months after the stroke, I took care of him for a few weeks but I couldn't anymore, he's incontinent, can't walk well, it effected his cognitives, he can talk but stutters a lot, so I decided to put him in a nursing home. He's still there, I visit him everyday, stay with him an hour or two at a time, try and encourage him to get up and do more than watching TV, but he refuses. We have 4 children, two older ones that live outside the house and 2 that are still home, I've decided to go back to work which he wasn't happy about, but I need to. I've lost 45lbs, I'm independent now, raising the kids, feeling really good about how my life is going. I've come to the conclusion I'm not in love with him anymore, I feel horrible but that's how I truly feel, and don't want to do this anymore, my mom n older daughter are so angry with me, but why can't I be happy...

My step son in law tried to commit suicide after only 7 months of being married to my step daughter (I have had her in my life for 28 years, she is 34 years old now). She found him in their garage, with a heavy duty electrical cord on his neck) they are both RN,s. She got him down to the floor. Started CPR, called the paramedics. In several hospitals, they had to bring him back.....now 2 years later, he still has the brain injury, along with 2 other brain injuries from being in the Army. In Afghanistan......he can’t even walk, feed himself, go to the bathroom. Can’t see and his brain is a mess...she can’t do this any longer. And is going to file for divorce... this story is too involved...but he did it to himself and we don’t even know why.....he remembers some things,,,is on so much medicine....his parents have him in a private home now, with 24 hour care givers.....her heart is broken, she had him home for four months...she has to work and had a caregiver at her home....he gets angry at times and thinks he is somewhere else....I could go on and on....my heart goes out to all of you who have posted on this site....thanks for listening.

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