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 (193)

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.

Hi i dont know where to start. so my husband and i been together for 23 years,married 10 and have 3 children together. only 2 weeks ago my husband went on a stag doo to ibiza and slipped in the hotel and banged his head . He has 2 fractures in his skull and had bleeding in his brain we we are waiting for another scan . His mood since we arrived home has changed so bad. hes barely speaking to me he’s mentioned for the past 3 days now he wants a divorce and hates me. This is just like a whole new person im heartbroken. i dont kmow what to do. Has anyone had similar of this and made a full recovery from it ?

Where does one start? My husband had not 1 but 2 strokes about 5 yrs ago, which in turn took out his right side! He has extreme aprexia and aphysia and speech is limited! He was in rehab for close to 1yr at different places. He gained some mobilty but not alot. I looked after him for a yr while working full time & part time to support household and our adult son (in university). While home and even now the relationship has been extremely draining and exhausting. I feel I have no life, no friends,. I've tried to include husband in everything I was doing, but he no longer wants to do anything, he is always depressed and wishes he was better! He made me feel quilty for wanting to have some form of a life! anyway he is now in a long term care facility because I just couldn't look after him and every day along with the house, etc. I sold our home shortly after he moved into facility and paid off all out bills. This has releved some stress but my life has been in limbo!! I visit husband every weekend, but it's been so draining. he complains, and is depressed and doesn't want to do anything. Anyhow, since our son is still a dependent financially the government give us a break, but soon out son wont be in university and costs to have husband in facility will double. I've had to step up and earn extra to help us have a so called normal life and it's tiring! Anyway as a result of the financial piece and the I have no husband (friend) piece so I decided to seek a divorce which my husband has agreed to. I feel so guilty!! wasn't sure how to tell our adult son, but I did explaining some of the reasons and in the end he got mad and told me I gave up on his dad and how could I. Then stormed out of room. I'm so stressed and upset because of his reaction. He was crying and I gave him hug and just kinda told him, it's been 5 yrs and his dad is no better and Im not going to loose hope and that its not his fault and life has not been kind to us. He lost his dad, I lost my husband, friend, etc. Anyway he hasn't really wanted to talk to me! which I understand! I just worry about him because he keeps his feelings in! He doesnt like to dwell on things and get his feelings out. Any words of wisdom would be greatly appreciated?

Thank you all for sharing. I thought I was alone in this nightmare but see I am not. My husband had a massive hemorrhagic stroke 14 years ago. He came home a completely different person, had no memory of our 8 year old daughter, was angry and violent and has put in little effort since initial psh to improve or be present. He never hugs or touches me which sometimes causes my heart to hurt tremendously. He also has significant executive function and word finding issues so conversation is almost nonexistent. My daughter, now 22,
is devastated that she cannot remember the father that idolized her and is beyond heart-broken that they no longer have a connection.

I never thought it would get to this point but I feel that if I don’t leave I will die from anxiety, loneliness and heartbreak. But how do you leave if he is not capable of being on his own. I have been doing this with little to no family for so long. There is no one else that can step in. What do I do???

Something is wrong with this study and the learning outcomes. "...only 15% of subjects were separated or divorced" doesn't make sense. TRUST ME. I'VE BEEN THROUGH THIS FIRSTHAND.

If the average marriage failure rate is 50%, and the failure rate among TBI victims is 15%, this might imply that TBI is the solution to failed/failing marriages. What else out there is so successful at saving 35% of marriages that would have failed?

There is no way TBI is causing marriages to succeed at such a high rate, and I'm sure Dr. Kreutzer is not going to make that argument. However, his articulation of this statistic without better addressing it's shortcomings is irresponsible.

Thank you everyone for your comments. I was feeling hopeless, tired, and confused.

My BF and I been together for 13 years. He had a brain aneurysm last year on my birthday (At the time I was 38 and he was 43) His recovery has been great. The doctors say he is a miracle. We were lucky to live close to the fire department and hospital, which they said made a big difference (my dad had passed from a brain aneurysm as well in 2020) of his outcome. They said he would've wake up for a couple months but after 3 days he woke up, he was talking a little bit and his memory was still there. But as time went his memory got worse and he just stopped talking, words here and there but one-word responses (mind you this was through FaceTime, due to COVID we were not allowed in ICU). Anyways, fast forward through the whole horrible hospital and rehabilitation experience. He came home after a month and a half; he progressed a lot in rehab but he wasn’t eating so I was fighting for him to come home. He used to weigh 154ish ... when he came home, he was 107. Now he is up to 143 and looking healthy and being more active.

Sorry I am digressing from my story. Now a year has gone by and my life is on repeat. He has short term memory and sometimes he remembers things from months ago, weeks, days … and it is frustrating because he doesn’t want to do his memory exercises or any physical exercises, for that matter. I try to play chess, scrabble, cards, and crossword games with him but he refuses most of the time. Like most, I am still working full time, taking care of the home, and the kids. I am always exhausted. I tell him to do things and he forgets, for example, I asked him to close up the windows and turn on the alarm. He would go downstairs and come back up confused and asks me why he was downstairs (mind you, he would go for a long period of time). I would tell him and he would go down and turn on the alarm. I didn’t check on him but the next morning as I am coming downstairs, the windows are all wide open and the patio door too, with the alarm on! OMG, this frightened me a lot, something could’ve happened to us! I try not to check on him and give him the freedom he needs, per the doctor. But I have to check on him because if I don’t, that example would happen. I have to constantly repeat myself when I assign him a task. I tell him to use his phone to keep reminders and notes or use Alexa for reminders as well, but he refuses or I guess forgets? I love this man to death, as you all feel for your partner, he is the perfect man just made for me. He loves me just as much but I am exhausted and need him to put more effort. I don’t know what to do, I am starting to feel unhappy and I know he is a shell of who he used to be but I see some of him there and it breaks my heart that lack of effort from him in getting better and his lack of self-care.

I apologize I am all over the place. I just felt defeated this morning from last night’s incident. I am glad I found this site. I know I am not alone and I should be more grateful as my situation is minimal to others (I know it’s not a comparison, every situation is different) but this definitely helped and I don’t feel so alone or as down on myself. I cried to the comments because it is all relatable, we all suffer as a caregivers, we give our 150% and that is all we can do. But we also should be mindful that they are suffering too. I will nurse him back to life and the rest is up to him but I’ll be by his side, as long as he lets me.

I wish you all the best!

Reading these comments is a reality check. I feel very helpless and guilty atm. About to separate from my husband of 13 years who had a severe head injury back in 1983. It is deteriorating severely and his behaviors have affected our family and marriage greatly. He keeps saying he will try change but doesn't. I am exhausted doing everything and getting nothing back and no support. He cant work or take control of household stuff. I'm feeling guilty for giving up but I have no life anymore. We have no friends, he has no interests just sleeps and gets annoyed when I voice my feelings. I'm so over this life with head injury.

I think you need to save yourself, he has completely stolen your existence and has made no attempt to improve his outcomes, (this as somebody living with a brain injury myself) cut and run would be my advice, life it too short to spend it with such a selfish and self obsessed individual.

My heart goes out to all caregivers and stroke survivors. I have been taking care of my husband for 15 years since he suffered a massive hemorrhagic stroke. He has significant executive function and word-finding deficits and is an entirely different person that no longer treats me as his wife. Many of you have decided to leave, but how do I do that when he cannot function on his own? I thought I could go the distance but am so lost, sad and lonely.

I have read most of these comments and it hurt my soul. I've been in a bad dream every since 2011. This is the year my husband had a stroke. I lost the man I loved that day. He is physically fine, but I don't know him. He acts like he hate me, he said he hasn't changed and I need to stop making him somebody he is not. I don't know this man, most of the time I don't like this man. Everyday it gets worse! I love him with all my heart, but I'm starting to resent him because he is so nasty to me. He will get mad and blame me for everything that is wrong. It's hard to talk to anybody because they don't understand. My mom said it's my husband , he has been through a lot and I need to understand! she is not dealing with the hell I go through every day. Reading these comments tears rolling done my face, because I know how they feel. I feel I'm losing my mind. I try not to say anything, because he get really angry. He has told me he doesn't have any feelings, when I look into his eyes all I see is darkness. Sometimes he can be nice but all that changes within an hour. Anytime I talk about my pain, it make him mad. I wish there was a support group for us. Our home burned in May of 2021, that made it 10 times worse. I have thought about divorce many times, but I've been with this man since I was 19 yrs. old. I pray everyday that he will come back to me, but I think the man I love will never come back.

My husband had a stroke,too, at the end of January. He’s not the same either. Look into his eyes it seems nobody’s home. He’s very demanding, yells mostly, watches TV constantly and just wants chocolate milkshakes.

It’s like something dark took over. If I try to read the Bible he leaves the room quickly. If I try to talk to him about Scriptures or God he gets visibly angry.

I would love to have someone else in this similar situation to talk to.

OMG I totally understand where you're coming from my husband had a brain tumor that was bleeding and they perform surgery to remove it but now he has a very bad attitude and is very grumpy all the time always arguing over whatever he could argue about and I'm wondering if this how it's going to be from here on out.?

It's ok to leave. It is ok to prioritize yourself. I know it is hard and a lot of guilt comes with it, but it is still ok. You can still be friends or in contact but also build a different life.

I completely understand your feelings. Like you I met my husband very young. We dated in high school and early college, married in the late 80’s, had kids, they moved on, and were working on our retirement dreams when he suffered a traumatic brain injury. After surgeries and rehabilitation, he became a very angry resentful person. I thought it was just the feelings of having to start a new job and not doing what he loved but soon found that it was me. He too said he had no feelings. Said he did not know what he wanted anymore. His friends noticed a difference in him and his lack of sense of humor and jovial personality he had before. After a bad experience with his first counselor he refused to return to him or to a different counselor. He eventually moved out of our home and now we are going through a divorce. I am crushed. I have spent 2/3’s of my life with this man and I feel like I am starting over without him. I don’t know when it started to change for him for certain or exactly what I did to cause him to hate me so much he would rather live without me. I miss the man I married immensely but there’s nothing I can do because he refuses to get help. I worry everyday he’s going to isolate himself to the extent that his whole family will be walled off and he do something devastating. So unfair!

My husband was my everything until his stroke 7 years ago. I was convinced he would recover and be the same husband I had before the stroke. I finally realise it won’t happen and I have lost all the things that I loved about him. I love him but I don’t like him. I now make all plans and decisions and I feel that the husband I had went away and this person took his place. He was once confident, strong and cared for my well being and wonderful to be with. I felt so safe and protected. He was the most amazing husband and I was so proud of him and I miss us so desperately. My heart is broken as I want him back so much. I remember how I used to feel and I am not the same person anymore because I lost him. He insists he is the same but I don’t understand this.
Sometimes I think if he had a heart attack or cancer and survived at least he would still be him. It is so hard to accept and I’ve realised now that I never will, simply because I miss my husband and the way life was. The twinkle in his eyes seems to have gone and the facial expressions I used to love and his body language has changed.
I long to see those things again.

I feel so overwhelmed already. My husband had a brain bleed that lead to a seizure and a long coma. When he woke, he was on a vent and unable to speak or move. I was so happy he woke up, I thought my prayers were answered. He went through a month of intense rehab, physical, occupational and speech then came home. He has been home for a month and needs 24 hour care due physical and mental conditions. He seems to be living in the 80s and most of his recent memories are locked away from his memory. He always said his dad was just here, he passed away 26 years ago. He asks to go home, we are at home. I prayed to get him back, I got a shell back. I cry everyday, I don't think I can do this. We've been together 30 years, I feel like a widow. I get angry when he says ready to go home every 15 minutes, I repeat the answer over and over... Gets so frustrating then I feel guilty.

I know a couple that were separated and he had decided to get a divorce. For months he was working through the loss he was feeling over his decision (that he said was years overdue) as that meant more stress for the children. But staying he said was awful for them too and moving on they might get to see what a good marriage could be someday. many of us have been there and could agree with him. Eventually he came to terms with this and even met another young lady and was rebuilding a happier existence.

The sad part is he hadn't done the paperwork, he consulted an attorney but with children it was going to be expensive. He was building his bank account so he could afford it. He wouldn't take a loan from family. Since he did not changes his "next" of kin, now that he was in an accident and his wife stepped in and has shut all of his family and friends out. She took all his things from his house, emptied his bank account and no one that was on "his" side is allowed to see him.

The situation is very new but this article and many like do not give me hope that he won't be in a situation he can't leave. It seems from what I read the stress with make it worse for him. My fear is that he won't get the help he needs and she'll put him in an intuition.

An attorney has said this does happens and there is nothing his family can do His kids are all minors and she's his "next of kin", its all so depressing.

What happens to people like this? How can the law not at least consider the situation and let his family in?

Not sure how to process this.

After reading all of these comments I feel so bad for my husband. I had a TBI, brain tumor 18 years ago. In my support groups I heard that the person with the brain damage is the last one to figure that out. It was true with me. I kept trying to get and keep jobs but couldn't. My little sister stepped in and got me on disability. I feel so bad for my husband, even more now. I tell him its okay if he wants a divorce. I understand. I wish I would have died many times on the operating table so he could have gone on with his life. He has told me and many others that he has had to fall in love with a completely different person. He is so good to me and refuses to leave. Our grown children put up with it. I know it hurts them too. It hurts me to see how much I have hurt everyone I love. I'd kill myself but I know how hurtful that is to the people you leave behind. My little sister's first husband did that as an alcoholic. Believe me, I wish I was the same. I am constantly grieving the loss of myself, and the pain I have caused those I love. We have now been married 37 years. I feel so lucky to have him in my life.

Since I cannot work however, he thinks I should have some responsibility. I am expected to keep the bills done, the housework done, but I continue to fail. I am being treated for depression, but it really doesn't seem to help.

I wish I would die quit often, but I get an MRI every year and there hasn't been any regrowth. I should be happy about that but deep inside I think it would benefit my entire family with some relief if I were to die.

I'm really sorry for caregivers who have to put up with violence. Luckily I haven't had that problem.

I wish I could offer you help, but I cannot. I'm so sorry for all of your losses.

I've paid a lot of attention to marriages and I've noticed that none of them run right. I'm a woman so I hear all my friends complain about their husbands. My husband fell from a grain bin. I like having him around. Our children also like having him around. Kids seem to possess a need to know where they came from lol like they want to make sure that they weren't hatched from an egg. This need grows bigger the older they get. Our eldest who is 27 is tracing my husband's family history. Sometimes he's moody but who ain't? He's forgotten stuff but doesn't everybody?...I forgot to pay a bill the other day. I'd be lonely if he were gone. I could probably get back out there and date but truthfully I don't feel like it because I feel comfortable with where I'm at so maybe your husband and kids are too.

Girl, what about our losses though.. I had a car roll-over with an impact to the head. People like us for the way others speak about us instead of the heroes we are make us feel like we were better off dying on an operating table or a road statistic dead and buried. All these carers stories really don't matter tbh it's our story that live this and these feelings of no hope because of hatred instead of kindness.

I continue to fail also my husband thinks "I'm fine" but I'm not. My family would also benefit.

I got hurt at work which resulted in a mild TBI. This happened the year after we were married. It’s been a hard journey, to say the least. I live with pain every day of my life, not only do I not know what is the exact pinpointed reason why I have shooting pain in my back and legs but I feel dizzy and tho still conscious my eyesight gets blacked out too. My leg has been numb for months now and waiting for another EMG to be done at the end of the month. My doctor mentioned it could be a result of nerves not only if in my body but messed up nerves in my brain. I refuse to give in to that theory as I am scared of where my imagination will take me. I haven’t worked since and now am waiting to be told I’ve been declined for disability but the state I live in did approve me for state assistance but that’s exhausted now. I’m asking if anyone feels normal relativity and could help me know what to ask the doctors to look for. It’s hard getting no concrete answers but would love to know what’s wrong. If anyone could give me any advice it would be highly appreciated please email me. Danielle.carly -at- yahoo. I’d love some guidance and what I need to be looking for to find out why after my slip and fall at work why I am in pain with no broken bones nerves messed up and not feeling the best mentally. I’m scared of being denied for disability as well as I can not go back to work obviously physically with the chronic pain I’m in but also my small blackouts and fuzzy memory. I would not wish how I feel on anyone ever, not even someone I dislike with my whole being. Someone please I’d really like some help

..perispinal etanercept... a doctor in Florida now has helped a lot of people. Google perispinal etanercept for stroke or brain injury's. It sca shot in the neck while titled head down? It has unclouded many peoples brains instantly in lots of people to regain loss of speech, limbs, pain , walking etc etc . Google doctor in Florida has lots of videos of ppl taking shots.. I would cry this. It's been in CNN too. Good luck.. ask your doctor..

A two year study result is pretty useless imo. I would like to see the numbers at 3-10 years post injury of a spouse! Has anyone found credible info like this?

My husband suffered a TBI as a teenager before I met him. We have been married for 23 years with 3 kids and he is a wonderful, kind man! The strange thing that I recognized this past year with the pandemic is he struggles with empathy and I wonder if it’s due to his brain injury? I needed a lot of emotional comfort during 2020 (as I’m sure many of you did) and he was not able to offer it and I realized that he has always struggled in that area. All he could say to me was “it could be a lot worse.” We are now looking into marriage therapy which he is open to and I’m hoping that can help up with our communication skills.

I am a TBI survivor and I have to take medication to control emotions and what you are indicating is just that he cant feel the same as others as our brain does not understand how to relate. I take Nuedexta I had to have a short test to prove I had the condition and its only a few questions they ask of him one being how often does he have cry spells laughter bursts for no reason and yes the cry for anything. Things such as that and they grade the points and he does or doesn't have the condition. I call it my cry baby pills they work 100% and no side effects at all.

I see that the low number of those who remained married was only after two years. I remained married for almost 5 and my "Ex" husband became more of a monster than he was in the beginning. My Ex had frontal lobe damage, among other damages, but his personality totally changed. I don't know where these people got those who participated in their study, but it wasn't any of the TBI families I've known. It's so sad, I didn't just lose my husband, we lost our business, home, marriage and my kids lost their dad. He's never been the same. From what I understand, he wishes to be left alone, and not bothered by anyone.

This is exactly my situation.

Dear Anonymous,

Your situation sounds painfully familiar. My husband was involved in a hit and run accident in 2008. The result is permanent severe traumatic frontal lobe damage among other things. I stay married for 5 years after the TBI. The family turmoil confusion and pain left me numb. I moved away to the other side of town. We are divorced, but I feel more like a widow. I carry guilt about leaving him everyday. We are still friends, on a bumpy roller coaster ride which is exhausting. I lost my husband, our home, my kids lost their dad So in a way it feels we lost our past, present, and future. He also wants to be left alone. The ripple effect has been a disaster especially on my youngest son. I am his caregiver now, but living apart from him. Very sad. I can't go back and I can't go on. I pray for my kids to find their way. Life happens.

I had a slip and fall almost 5 months ago and have been having ongoing neck, shoulder and back pain, I have burning in my neck shoulder and arms with swelling, red rash, numbness and tingling in my arms and hands off and on and my neck gets stiff and hard to turn my head and neck, trouble swallowing, I can’t stand to bend my head to my chest, should I be worried?

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.

This is exactly my situation. My husband has SBI . I feel exactly like you. Its not his injury its actually ours because I feel my life has been more affected than his. Yet made to feel guilty about wanting to leave. Im exhausted from arguing everyday and being gaslighted by him. Stay strong. Im doing my best to. Love and light to all the carers and spouses doing the hard work with no recognition.

I agree with you 100%. I am alone whether I am home or out with friends. It's a catch-22, a no win whether you stay or leave. I did divorce my husband and left physically, but not emotionally or mentally. It's stressful whether you stay or leave. We as caregivers are not appreciate. We are overworked, misunderstood,ALONE and live with false hope if any hope at all. TBI is permanent and leads to more and more health problems and questionable behavior. It's an inevitable downhill slide. I am not a pessimist but a realist. I am a caregiver to my ex-husband now (why?} (guilt) not knowing how long this will continue. I've learned to be alone, not expect anything from him, and lost the desire to pursue a future with another. In order to keep peace I've lost myself. Thank God for my church where I find some joy. Signed, Lost, Lonely, and Tired

I am so sorry to hear about the things you have experienced. I had a stroke going on 3 years ago now. After a 34 year marriage and 3 weeks of the hospital, my wife announced she was going to divorce me to our 21-year-old son. After all, things looked pretty bad. I couldn't sit upright in bed by myself without falling over, the left side of my face was sagging badly, my left arm and leg didn't work so I couldn't walk. I had minor cognitive issues and couldn't read for some time. Fast forward to now, I am divorced, walk with a limp, type one-handed, and made a lifetime of money in the market since COVID19. I am dating a fantastic woman that lost her husband to ALS after 7 years of caring for him. In that time as a caregiver, she had to find outside comfort from another to continue to care for her much loved husband. The story is to say there are many twists and turns in a person's life, where unexpected things occur and develop that my offer happiness as long as life continues. Pray for God's grace and search for an acceptable change. You just don't know! God bless and I wish all of you well

Brian can you please help me with some advice? My husband had a stroke 5 years ago today. That was 2 months before our wedding day. Right after our marriage he changed. He was physically ok. I never had to take care of him, but mentally and emotionally he is damaged goods. He isolates himself, stopped communicating, he's always in pain in his back and legs. I thought it was sciatic nerve damage, but after research I just found out an hour ago about this drastic personality change. He just told me today that he's no longer in love with me, he's unhappy, and he wants out. Well there's one problem. I have nowhere to go. I have been a great wife to him and was a great girlfriend for 10 years before marrying him. We were so in love before the stroke. Please help me because I am lost!!

Hi a last I've found someone who can relate to what I'm going through. My partner suffered a cardiac arrest at aged 34... We were also 7months pregnant with our first baby.... Both very happy and engaged.... This happened and myself n his best friend were with him... His best friend did cpr ASAP and saved his life. It was so awful for me to see him like this and then told he prob won't make it and if he does he will be brain damaged. Long story short he suffered, we had our son 2 months after. When our son was 2 I found out we were having another child. I then descovered he had had an affair with a friend... We split up and I was devasted. We had a year apart and I decided we had to much to lose, so we got back together... It was hard but great at first... But then he changed, was snappy and just not his usual loving happy self.... After a year, he said he wasn't happy and left!!! I'm so lost right now and can't understand why he would do this to me and his own kids.... He's moved in with someone new after 6 months of knowing her and lives with her teenage girls... Hardly sees our 5 and 7 year old. I'm just left shocked, hurt and very lonely and sad. He was my soul mate before the cardiac arrest and now I feel he's a stranger..

Natasha,

I am so very sorry to read about your situation. I can only share my personal experience as the one that had the stroke. Specifically, my marriage was in a difficult place when the stroke occurred. It could best be described as in a benign neglect phase for both of us with neither particularly happy. So when an opportunity arose to exit, she did. Texas is a community property state so all money/assets were split 50/50 including costs for the attorneys. With help I moved to an apartment I could afford from cash reserves. During the following year while going through the divorce process I concentrated on how I might make a living with my cognitive limitations and was able to find some success in an area I always had interest in which in my case was investing in the financial markets. At the very end of the first full year of being in the apartment I felt a strong need for championship and met the lady I'm still with, two years after our first meeting. Although I felt very hurt and wronged by my ex, for the timing and the way things progressed, it has been surprisingly ok overall. Now for reasons I still don't understand, the weeks after the stroke I was very angry with her or anything she would say or do around me or any help she would offer me. We experienced never ending arguments, it was best for both that I moved out. I'm unsure what I've shared has any value for you? I can only say if you love the man, find a way to give him space to experience what separation will mean for him and you. If the relationship is not yet broken from your perspective, remain caring and helpful where you can, however earnestly prepare for a new life direction. God bless and good luck with this journey.

why would you have to give half your salary if he is on disability

If his disability is significantly less than the household income was, that is probably why. I am not sure what state you are in, and this is not legal advice, but Ive experienced and been told that in CA, the premise is that if you are the breadwinner, you have to keep the ex in the lifestyle they were accustomed. I had to pay 1/2 of my take home pay to my ex who wasn't even disabled! He refused to get a job, so after 8 years, I gave him 90 days to get a job or I was filing for divorce, at least on paper. He got a 2nd girlfriend (yes, had already been cheating on me and got a 2nd) and a divorce attorney. And no TBI to blame it on. My current significant other has the TBI, which is why I'm here. The legal expression I've heard from my attorneys is, "the high tide rises all boats" which is why no one cares how child support is spent--it's expected that the breadwinner will keep everyone able to spend as they did before...except the breadwinner. Thank God it was only 1/2 the life of the marriage, as I had learned of CA's marriage of duration law (10 years). Otherwise, I could have been supporting him the rest of his life.

I’m so sorry your feeling like this. My husband had a brain haemorrhage 2 years ago. He is not the man I married but doesn’t believe that he has changed. My life is nowhere near as hard as yours sounds but every day I feel less and less connected to him. I tried to seek help from relate and a counselling service through my GP but they couldn’t help. I am desperate for someone to talk to who knows and understands what it is like to live with someone after stroke. I have tried and tried to find help groups but they don’t exist. I feel very lonely and trapped.

My husband had a hemorrhage stroke in 2018 while we were on vacation celebrating our 5year anniversary. Our anniversary was the 17th and I gifted him with an exam showing we were finally pregnant after a few years of trying!!! 5 years of marriage, finally having our first child.. We were in the best space possible.. The last day of our vaca 21st.. He had a stroke..49 days in ICU they told me he probally wouldn’t advance past vegetative state.. He woke up and I feel like life returned to my body.. We were together 10 years before we were married.. college together… traveled the world together! We were literally best friends.. we’ve been through everything together and if I could design a perfect spouse it would be him.. literally he kept me hungry to be a better person, better wife, better friend.. I couldn’t wait to parent with him.. He promised to always protect my heart and smile.. and he did… He was perfect .. I felt so lucky to have him as my person!! We loved each other in a way I never seen before.. He was kool, funny, fly, smart.. if we were traveling to Dubai or watching reality shows it didn’t matter because both were equally fun!! I loved the way he loved me… I felt confident in my position as a wife, i worked really hard to make sure he was happy, we were happy and everything was as we wanted.. the one thing I loved the most about him was how hard we both worked to make sure each other were happy!! I felt so successful in my marriage.. it was the thing I was most proud of!! I loved how we mastered keeping our individuality, while being a team.. it took us a while to marry because it was so important to us both.. to do it the way we felt was right.. imagine I went through a whole pregnancy not knowing how he would recover… fast forward 3 years passed and He’s came along way.. I’ve tried everything there is that I can find… and Ofcourse insurance covered nothing.. our financial situation changed ofcourse, but we’re ok.. my life literally changed and I’ve spent the last 3 years helping him get better.. he can only move his right arm, neck and head… he can’t control any other muscle in his body… He still speaks five languages and his memory is really good, he remembers people, but not really events.. his memory kinda erased the last 7-8 years.. our son is almost 3 and as happy as I am.. I feel like I’m mourning my husband.. he has frontal lobe damage so his personality has completely changed.. He’s so mean to me 75% of the time. He has 0 empathy and the main thing he cares about is food and being changed.. 25% of the time I get to have a piece of my person back, but it’s not the same…. I’m so angry at him because I want my son to know his father the way he was.. I feel like he got cheated.. I always knew if I had a son I would want him to be just like his dad. He literally was my personal Google, stylist, chef .. man I miss him.. I try to stay positive and include him in everything and remind him that he shouldn’t focus on what he lost, but focus on what he has now.. and our son adores him.. he thinks his dads wheelchair is so kool.. I get so angry when he doesn’t react to our son or try to do anything with him.. Literally he lived for the day he had a son and now it’s here we have this amazing little kid that looks identical to him and I feel like he can careless.. but he wants to care, he wants to get better so bad.. I try so hard to enjoy the family I have and make the best of it.. but it’s so hard and I’m drained… I feel so sad because I believe he would be everything I needed if I had the stroke.. however I’m starting to have so much anger in me. How do I love someone who is nothing like the person I loved.. I use memories and the person he was to keep me going..but I’m burnt out.. for example in anormal day he might call me the B word 20 times on top of fat ass, stupid, dummy and this is from a person who didn’t cuss before… we no longer share the same dreams, everything I loved about him is gone.. Even his voice is different and I’m so sad. I’m happy about my son, but I find myself always thinking about what should been.. I’ve even caught my self speaking of my husband in past tense.. I’m so lost and confused.. he’s 42 and I’m 38 and I couldn’t imagine my life without him, but I also can’t image the rest of my life like this.. our life literally revolves around him.. He has a nurse so that helps a lot, but even when I’m not physically doing for him. Mentally I’m still busy with him. I’m so sad, so broken and I know life has to go on because now I have a son that needs me to be everything for him… I feel like I fall short as a mommy because everything I have goes into my husband.. financially, mentally and physically I am drained and I just don’t know what to do… how long can I love him based off what use to be.. because there is nothing new.. I don’t like him, but I know he needs me and I feel bad for how I feel because I know his mind is broken and he’s not the person he wants to be either.. this just isn’t fair

I know how you feel it’s so very confusing and soul destroying

I know how you feel. I wish I had someone to talk to as well. My husband had a massive stroke a year ago. My life turn upside down. I am the caregiver now as well. I work full time and am raising my kids. He is a shell of who he was.

I had been married over 30 years when my husband had a stroke. I filed for divorce about a month after he was home from rehab due to his irritability. After 4+ years, I am still struggling with my decision, but his behavior has worsened. Down deep, I still love him but do not like him. He has caused so much anguish. I understand what you are going through. I strongly regret not going for counselling. We both asked for it at different times, but never connected. One of us each time was not willing.

I agree my husband had a massive stroke he constantly asks for a divorce days i need to be happy and not live him like this but turns around and days I love you I'm sorry for everything is very confusing so yes these studies are not very accurate if they are just interviewing the patient.

I love my wife, who suffered from several major strokes as a young mom, but I love her like one of the kids - a dependent; not someone I want to take on vacation to "get away from it all." When I'm at home, I feel like I'm at work. I look forward to bedtime more than anything else, and I drink to get there.

Suicide?? Oh yes. I went from fearing she would kill me in my sleep, as she was so resentful toward me early on, to fearing she would kill herself, and now I have felt suicidal for a few years, as she appears to have plateaued and accepted it.

In another year, I will have been married to the neuro-normal version of my wife as long as I have been with the survivor version. It's taken a massive toll on my physical and mental well-being. My earning potential is still high, but my actual earnings are low because I've developed the, "what's the point?" attitude toward money. I finally see it affecting my kids, and now I am finally getting out.

There's nothing I won't do to support her and help her live a full life, but I can't stay married to her. That special relationship is designed for two cognitively equal partners who can count on one another and actually understand each other and the world around them, even if they disagree about all of it.

It's hard to believe I can be happy again, but the people who know me best assure me that I can so here I go! F$&% it. Can it get any worse??

Sonofa!*÷&% Thank you "killin me!" For finally giving me the WORDS to express what I need & will NEVER have again with this wretched bully that I've been shackled to for more than half of my life!!

That's Precisely It!! A "Special Relationship Between Two Cognitively Equal Adults"!!

Just knowing what to CALL IT IS HUGE! To sleep & not fear my bedroom door being kicked open in a rage b/c He can't find His sunglasses!! Not being smacked because I spoke during the VIDEO he was watching... Never again, getting shoved across the room for trying to make Him answer my question!
I have NO idea what the Hell I'd even do with myself? But I have tried everything in my power to draw out the man I married, from that cruel, sadistic blowhard who's taken over his body! But I cannot... I catch a glimpse of him every so often... But never long enough. I've tried so many times to explain to Him the differences between the two of Him...pre & post.

But nope.... It's ALL Me. His best friend, the best man at our wedding, died 2 years ago.... My husband couldn't be bothered to go see him on his deathbed.
Seriously? His very best buddy of 35+ years & it's all MY imagination?

Yeah.... I very well may be everything he says.. Crazy, stupid, worthless, useless, selfish...etc. Fine. But He is most assuredly NOT the man I married. I've thought about suicide more times than I can count... He's taken everything. My youth, my house, my kids...
I don't even have my wedding rings. My health is sinking, My dignity a thing of the distant past... Pride is a luxury I can no longer afford. I realized that the first time He withheld food until I completed the tasks "he'd assigned" me before leaving..
He locks it in the car.
Ain't that nice?
For this, I ditched Med school?
Yep. Well, he's right about one thing. I AM stupid.

thanks for sharing. I feel the same. Sometimes i wish i had listened to the doctor's advice. So hard to let go at first, right now i have regrets. We both should be happy right?

THANK YOU! My husband had a massive stroke in Thanksgiving 2019, at 41 years old. I 100% relate to every single thing you said. I often think that I'm married to the shell of the man who was my absolute everything. My person. It's heartbreak every single day.

And you're right, I get a lot of "be grateful" and "stop focusing on the negatives" from relatives, especially his relatives. They do not see the every day struggle. They do not live with us to see how it really is, or have to be at his whim all day until 11:00 when he goes to bed. So much nagging. But it's not regular nagging, he has severe speech problems and nagging takes at least ten minutes to get the nag out.

I feel so guilty for the way I feel and am grieving so hard right now. He was so smart, so capable of literally anything, such a good dad, a great sense of humor, and was super charming. I, and my kids, lost everything. No one gets it.

I'm with you! My husband was the best smart hard-working and excellent father he had a stroke while riding a skateboard so his brain injuries are pretty bad

I truly understand. I have been married to my husband for 17 years. I met him after his brain injury. I thought I could handle it but its been a nightmare. He has cheated on me numerous times. The depression got so bad that food became my comfort. I ballooned up to 300 lbs. And no one understands how you feel or what you're going through. I finally built up the courage to leave him. I had lost 100lbs and decide to live for me. Well I guess he couldn't handle me leaving and turned into a complete mess. Started messing with Coke and his life went down hill fast. Well guess who came to the rescue.... Me and now I'm back at square 1. At first he was doing amazing as for us. But now he's back to his old selfish ways. I'm tired and want out but no one else gives a crap but me. I think knowing he's my daughters father and I try so hard. He does work. He was laid off due but called back. He's an amazing worker. Everyone loves him on his job. All his friends love him too. But when it comes to me I'm treated less than. I got a taste of freedom and it was amazing

Pages