Kara Swanson's Brain Injury Blog

July 9, 2009

Till Death Us Do Part

This is admitedly a hard one to write.  One I’ve put off because the issue is so painful to so many.  It has so many edges and pointy elbows.  So many prickers.  I’ve seen it torture so many people and dismantle so many couples.  It hurts my heart.

What do you do when your spouse or partner, boyfriend or girlfriend, acquires a traumatic brain injury that significantly changes the dynamics of that person’s personality?  Their very essence… 

What happens when the injury takes the person you loved and chose, even married, and replaces him/her with someone you don’t want to be with any longer?  Someone you never would have chosen?  Someone you don’t even recognize beyond a familiar face?

Traumatic brain injury is a mean bugger, make no mistake.  It’s no surprise that the incidence of divorce after TBI is astronomical.  There are very few other conditions which similarly steal so quickly and dramatically the very characteristics which make a person that particular person.  The one you chose.

If you are blessed enough in this life to find someone who is your ideal…Someone with your version of great character, complementary goals, compatible habits and mutual interests, it is hard as hell to have that snapped away in an instant.  Cruel.

What do you do?  The love of your life who was once kind and warm, funny and selfless, helpful and romantic, even-keeled and emotionally balanced, all of a sudden is mean and hurtful, unpredictable and depressed, self-centered and bitter, rageful or even dangerous.

What do you do?

There is pressure to stay.  We take vows of “till death us do part” and “in sickness and in health”  Most of us take them seriously and should.  

There is guilt.  Fear.  The pressure of “what will people think?” if you leave someone who has been disabled and his/her whole life has been turned upside down.  How can you leave?  What does that say about you?

There is pressure from families and friends who, to be honest, want you to keep the brain injured person and not return him/her to their family to have to deal with.  What will become of the person if you leave?  How do you make that right in your mind?

It’s a lot.

I watched my father take care of my mother after massive strokes left her significantly damaged and unable to speak coherently or take care of herself.  I had the utmost respect and admiration for him but I could not have judged him had he decided to admit her to a care facility.  Nobody can judge something so personal and so intimate.

I have heard of far too many couples who have suffered a traumatic brain injury to their marriage.  Some on their honeymoon, of all things.  Some, even, just weeks before their marriage.  Or a month after their first child was born.  What an awful place to be.

It affects everything.  People are suddenly faced with a partner who isn’t what they counted on.  Depended on.  Maybe he or she cannot be trusted with the children, is no longer contributing to the finances of the household and can no longer be an equal partner in decision making.  Or the caregiving relationship becomes more parent/child than equal adult.  Because their personalities have changed and often for the worse, maybe they are no longer pleasant and there is no desire for intimacy.  You don’t even LIKE them any more.  You sure don’t want to have sex…

People have approached me so many times asking what should they do.  How can they stay and how can they leave?  How and when will they know?  When is enough, enough?

I believe that the decision to stay or leave must be one that you can live with either way.  One without regret.  You have to be able to feel you did everything you could to improve your situation and to make your relationship work, even if it is markedly different from the one you enjoyed before the injury.  Different doesn’t always mean worse, after all.

The first issue is always safety.  If you or your children are not safe because the survivor has created an unsafe environment, there is no waiting.  There is no question.  No hemming and no hawing.  If you are threatened either because of something they are doing or incapable of doing and your very life and well-being is in peril, you get out immediately.

If you are not in any physical danger and the situation is simply no longer desireable or bearable,  there is a series of steps I feel is a good guideline for making it or determining it unmakeable. 

You let the healing take place and you let the doctors do their thing.  You exhaust every possible rehabilitation that will afford you a pretty clear picture of what the problems are and what’s likely to remain.  I went through physical, occupational, speech, specialized balance, alternative vocational, driver’s and psychological  therapies before I had a clear understanding of what was unlikely to heal any further and what I needed to do for each particular problem.

It’s important to learn.  You learn about the injury and you learn about the myriad ripple effects of it.  You learn what specific and unique challenges your loved one now faces.  You learn how they feel about what has happened to them and how that affects their behavior and attitude and potential.  You learn about your own feelings and how they are affecting your behavior and attitude and potential.  You share the information with family and friends and keep them involved in the process.

It’s so important to begin to separate the problems that are actual symptoms of the injury from those that are symptoms of the emotional aftermath of it.  For example, is he rageful because that part of the brain was damaged or because he is angry that this awful thing happened?  Is he acting recklessly because his brain can no longer keep him safe or because he’s depressed and simply doesn’t care any more?  Is she sitting on the couch doing nothing all day because of damage to her ability to initiate or is she feeling sorry for herself because she no longer has her former capabilities?

Each problem will dictate each solution.  Medication, relearning, compensatory techniques, adaptive equipment, emotional processing…There is help!  Problems can be resolved!  But it takes time and a lot of effort.  Problems need to be recognized and untangled and set apart and given appropriate treatment.  If the person’s brain has been damaged to the point where they cannot tie their shoes any longer, you don’t yell at them for not caring enough to tie their shoes.  You find out if they can relearn that skill or begin wearing slip-ons or velcro shoes.

One of the biggest steps in the series is getting both of you competent therapy.  The injury has happened to both of you, affects you differently, and you both likely need help in accepting it and adjusting to the screaming change that has been thrust upon you.  A good therapist can help the survivor accept the injury, let go of the life that has been forever altered, regain self esteem, and find a way to welcome this new life and head forward.  A good therapist can also help the “well” partner accept the injury, work through the grief of losing dreams and plans, the mourning of their lost loved one and how they used to be and the resentment that often comes from being partnered with someone who has so dramatically changed the relationship.  I cannot speak highly enough of how helpful a good therapist can be.

A lot CAN improve.  A lot CAN be figured out and fixed.  A lot CAN even be better than it was.  I’ve  heard several people tell me their marriages were “better than they’ve ever been” after injury.  Many times the injured person emerges a better person because of their injury experience and the perspective it gifts.  It may take some time to regain their footing and put the puzzle back together but I can’t count the people I know who are better for it and able to move beyond it.

But the injury does exist and it demands.  The “well” person has to nurture him or herself.  You need help.  You need to preserve and not disappear.  If you choose to stay, you need to enlist the help of your support circle to keep you from getting burned out. 

And, often times, your old support circle suddenly isn’t what it used to be.  You and your spouse used to go camping with other couples or to the casino or to each other’s homes to play cards.  When a couple changes, often times the people around you can’t or won’t accept that.  They want the old roles you played in their lives and they don’t want to change how you interact. 

If brain injury forever changes who you are, then likely it also changes who you are with.  At least in part.  People bond because of shared interest and common experience.  It may help you enormously to get involved with other people in the brain injury community who will understand what you’re going through.

There is no time limit for knowing.  Each survivor faces unique challenges and responds to them differently.  No course of treatment meets all the needs of each family.  Hopefully you will take the steps and afford yourself enough information and time and rest in order to make the decision you feel good about.

If you stay or go, it’s not going to be easy.  There is sadness and grief over a life you had thought was waiting for you.  Nobody wanted this.  Nobody asked for this.  Nobody prepared us for it.

And, although people are commended for staying and sticking and honoring their vows, sometimes determining the need to go is the best decision you can make for a relationship.  If you cannot accept the injury and forgive it…If you find that you cannot release the resentment and you are simply punishing the survivor day to day with your own bitterness and anger, then staying for staying’s sake isn’t helping anyone.  Survivors need to be surrounded with genuine support and positive, accepting people. 

Take your time.  Sleep on it.  Gather all the information.  Let as many professionals, medications, therapists and support people help as you can muster.  Even if you don’t stay, none of the steps will be in vain.  Both of you will be better for all the efforts.

I wish you all the very best in your decision.  I’m sorry you are in the situation you are in and I wish you both new paths of joy.

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131 Comments »

  1. Your posting is so to the point and it might help a lot of people who are struggling with this decision. But as a mother of a TBI only daughter, 21, it hurts to think that a loved one will consider leaving her after such a tragety. What if this were you? What if this was your child? Would you want to be abandoned because you are now “different”, because your whole life was just taken away from you through no fault of yours? Its a hard decision. Its a painful one whichever one you choose. As a parent, I know exactly what you are talking about. I have witnessed it all. I have had times when I want to run, run, run, and disappear but I cannot and will not do that. Never, as hard as it may be. Maybe that answers my thought that only parents (good ones) will care for you ’till death, not your wife or husband even though a bow was taken. Its interesting what you wrote.
    But, in my daughter’s situation, her boyfriend of 5 years decided to leave her, and I think it was for the best. It is true that my daughter is a different person but she will meet that man one day who will love her as she is now. There is always hope, because she has developed into a wonderful and beautiful person after 5 years. It just takes lots of rehab, patience and hope, faith, and determination on her part. I am happy that guy left her now. What if its not a Traumatic brain injury, but even Altzheimer’s, multiple sclerosis, or any other illness. Do you only stay with a healthy person? What the world has come to.
    I am married for 26 years, and I stil believe at “till death do us part”.
    I don’t think I will ever leave my husband even if he was mute, blind, paralized or whatever else. Yes, I will get help and find as much help as possible, but never abandon the person you love. Good luck to us all.

    Comment by Maria Noda — July 13, 2009 @ 5:57 am | Reply

    • Hi Maria:
      I loved that you wrote and what you wrote. That’s why this was a painful blog for me to write. We’d all love it to be “until death do us part” and I certainly commend those who stay. It’s awful when we’re injured because each one of us asks, “Who will love us now? Who will love us like this?” It’s a horribly painful part of our recoveries. I am realistic enough to see that many of these marriages fail after TBI. And I’ve also come to realize that that isn’t always a bad thing, like in your daughter’s case. But I soooooo firmly believe, as you do, that TBI does not mean we have to finish out our lives like some sentence. Unloved. It does change us and, often, it changes who we need to be with. I have great hopes your daughter will find the right person for her. Someone she can trust to appreciate all that remains and all the soaring wonderful things she is yet to be. 🙂

      Comment by karaswanson — July 13, 2009 @ 6:44 am | Reply

  2. This is close to home for me, after a conversation last week with the guy I was involved with when I had the accident. And I watch my own parents dealing with my father’s TBI also.

    I admire my mother for staying with him, but I wonder how many others would these days. The carer is often overlooked in thier needs so you can’t blame them for leaving.

    Great post. But a tough issue.

    Comment by kazzles — August 4, 2009 @ 8:31 am | Reply

  3. Indeed, Kazzles. Tough issue. One of our darkest, for sure. I’m sorry that your family knows this whole thing twice over. I hope everyone is doing OK. Cheers to all of you. Thanks for writing. K

    Comment by Kara — August 4, 2009 @ 12:17 pm | Reply

  4. Oh Kara,

    Wish I had known about your blog earlier or was honest enough to write about my own problems whixch I finally did this afternoon. Will return and read indepth. I was sent here by a kind gentleman who experienced the caregiver woes just like me and referred me to your site.
    I will return. Gotta feeling I will have learned quite a bit before your blog is read.

    thanks,

    Michael J
    caretaker burnout victim

    Comment by contoveros — November 5, 2009 @ 6:50 pm | Reply

  5. How about a boyfriend who held a secret that you found
    out about during the hospital stay deceit, lie and
    betrayal then has a brain injury, what now?

    Comment by jean — February 4, 2010 @ 12:21 am | Reply

    • Hey Jean…I’m going to write you at your email address.

      Comment by karaswanson — February 4, 2010 @ 1:15 am | Reply

      • This is what is happening to me… I’d be interested in any insight you have on this subject!

        Comment by A — April 29, 2013 @ 12:44 pm

      • Check your email. 🙂

        Comment by karaswanson — April 30, 2013 @ 7:34 am

    • I am going through something similar right now. Except I found out about my bf infidelity just days before his tbi. I was slowly falling out of love with him and now it is even harder for me to be around for him in this hard time. To top it all off his family feels the accident that lead to his tbi was my fault so they are making it hard for me to be near. Should I stay or should I go seems to be my quandry. It’s almost as if the universe is lining everything up to walk away. But will I be able to live with the guilt of it I just don’t know. Hurting and confused.

      Comment by stefanie — June 2, 2015 @ 11:41 pm | Reply

      • Hey, Stefanie, I’m going to write to you on your private email account. Look for me there, OK? Kara

        Comment by karaswanson — June 3, 2015 @ 7:52 am

  6. Bill’s picture sits beside my computer here. I will fight for him in anyway I can to get him help. He has been getting worse over the last year. We’ve been together for 22 years. He fell 40 feet onto cement on his head 30 years ago. He has not and won’t see a doctor. I have endured so much emotional pain and I miss him so much I can hardly function.He’ been gone since March 29, 2010. I couldn’t figure out what what was going on and I started acting like the crazy person. My 3 kids had me hospitalized Jan13,2010. I’m on a commitment order until july. He has changed so much and is now in trouble with the law. He’s being charged with a domestic abuse because I didn’t know what else to do. His family basically have not been significant people in his life all these years. Now he staying with his 1/2 sister, our pastor has sort of been dragged into this by Bill and Bill’s distorted perception has what I believed to have cause our pastor to be biase. Bill’s behavior towards me has been abusive physically and emotionally and I was afraid of people finding out what kind of life we were having.With so much time gone by since he was charged, I realize our problem is not a maritial issue it’s a brain injury issue.
    If he gets charged with this offense he we be required to take counseling. I decided to contact the DA to tell them that he needs to have his brain checked before they do any counseling with him. We were together last sat. and went out to eat. It was very difficult and he told me he hated me for calling the cops and that I had him committed to a hospital where he should have stayed for 72 hours, but they let him go because he told them there was nothing wrong with him and that he had to be at church to make pancakes for Easter breakfast. Yea, he’s very angry with me and want to divorce. I married him and made a promise til death us do part. Our landlord gave me an eviction notice because he wants Bill here because Bill works off the rent and the landlord needs to do stuff.
    I am hoping to get in touch with the clinical social worker at the Courage Center in Golden Vally, Minn. soon to come up with a plan and work with the court so Bill gets help. I sure am not running for a popularity contest because I’m the bad guy simply when I decided to say enough. Bill is in total denial and is so resistant when I talk about getting him help. I feel I have nothing left to lose at this point and I am so heart broken I can’t nothing but cry. I feel so alone and sad because I don’t feel anyone appreciates me at all for being the only one who thinks he should get help. I can’t stop hearing my critics, I keep renting out head space to them. They don’t know Bill like I do. They don’t love him like I do. I know the angles watch over him for me and I pray that God will help us work through this so we can be together again. I miss him so much. Thank you for reading this. It is helping me find someone who has felt like this-someone please reach out to me. Someone please help me I need a guardian angle to watch over my aching heart of loneliness. I want Bill to come home.

    Comment by sally — May 10, 2010 @ 11:50 pm | Reply

    • Dear Sally:
      Please look in your personal email for a response from me. Kara

      Comment by karaswanson — May 11, 2010 @ 12:35 am | Reply

  7. My husband and I were in a motorcycle 2.5 years ago. We both sustained TBIs. His so severe, he nearly died. After 12-years of marriage, it was until death do us part. I stuck by him through his long recovery, putting my own recovery aside (I was not diagnosed with a TBI until later). He relearned how to walk, talk, everything. But something remarkable happened. We were closer than we ever had been before. We were a team. His rage didn’t come until a few months later. He couldn’t understand why I wasn’t the same person I was before the accident. I was a TV producer and host. Outgoing, educated with a Masters, and highly respected by my peers. I loved being around people and in front of the camera, and where ever the actions was at, I wanted to be there. After the accident, I became agoraphobic, flashbacks of the accident paralyzed me. I lost my job while on disability. The TBI I sustained changed my mood and personality. When I finally started working on my own recovery, something changed in my husband. He became easily angered and even enraged. He said I wasn’t angry enough and that he was going to make me help him kill the b**** who caused the accident. He said hurtful things like I was nothing but a disappointment and crazy in the head. After being yelled these things long enough, you start to believe them. I found myself barricading myself in my bedroom at least once or twice a week because I was too frightened of him during his rage episodes. He never hit me, but he became so threatening and hurtful, I no longer trusted him, and he did not trust me. When he threatened to kill my dog, I feared what he might do. Then, he threatened to kill me two days later. As painful as it was, it was time to go. I moved in with my parents. I had notified his therapist several times about his growing anger a year before I left. She had said, “stand up to him,” and that she thought he would never physically harm me. She had been wrong before, what if she were wrong again? But I toughed it out for months. I even let his family know about it. They believed me at first, but my husband has no memory of his rage episodes and his family thinks I’m “crazy in the head.” I’m not mad at my husband and I feel there is nothing to forgive. It isn’t his fault. I just want him to get help before he hurts someone else or gets hurt. For the most part, he is a lovely man with a smile on his face. He can still make me laugh. No one understands the heartache I feel. It hurts me so to think of him trying to figure out things that once came easily to him. I want to be with him, but I fear him. I too am in therapy. I replaced my former therapist with a new one. She has helped me see that I cannot control my husband’s recovery, but I can control mine. My husband and I still speak, but I still live with my parents. He doesn’t understand why I’m gone because he doesn’t remember, and it’s frustrating. He says I abandoned him when he needs me the most, and my heart aches because I know it’s true. He says that since he never hit me, I’m not abused. I had become so battered mentally, that the first thing I thought of when he threatened to kill me was if he did, he would be sent to prison. Then what would happen to him? He would not receive the care he needed. I no longer cared enough about myself. Is it still until death do us part?

    Comment by Sonya — February 12, 2011 @ 10:00 pm | Reply

    • Please look in your personal email for my response.

      Comment by karaswanson — February 15, 2011 @ 1:59 pm | Reply

  8. I have a boyfriend with tbi and two kids with one on the way. My boyfriend suffered this in 2011, and its made him a completely different person. He’s not as loving or as nice as before. He barely comes out of his room now. I don’t know what to do anymore. Its been like this for months now. Its getting harder and harder for me to handle. I’m 8 months now bout to pop and he’s still the same, I can’t have anyone here living with me to help out but at the same time I don’t get any help from him. I don’t know how to talk with him bout anything cause he blows up real easy, I cant even talk to him bout my concerns or how I feel bout some of the things he does. What should I do. I love him and want to make it work but its getting to the point that I can’t do it and have to walk away from it all. I don’t want to buy that’s where this is coming down to. Help please.

    Comment by Tasha Nicole — March 11, 2013 @ 3:12 pm | Reply

    • Hey, Tasha: I’m glad you wrote. Check your personal email account, OK? K

      Comment by karaswanson — March 11, 2013 @ 7:23 pm | Reply

      • I wish you answered these in the open. These are issues others have too and it would be good to read your advise.

        Comment by J — September 18, 2015 @ 4:22 pm

      • I’ve thought a lot about you, Jerilynn. Enough so that you have inspired an entire blog entry. LOL. Look for it soon. Thank you for your commment. Kara

        Comment by karaswanson — September 19, 2015 @ 10:46 am

  9. Hi Kara, thankyou for writing this blog, reading it and the comments both opens my eyes and terrifies me. My boyfriend was in a motorbike accident 3 months ago and has been in a coma with TBI since. His mother has refused access or visiting for myself and all of his friends. It’s breaking them and its tearing me apart. What if he thinks I’ve abandoned him? I love him so much and we have a great relationship so I’m determined to be a part of his recovery. If you could email back any advice on how to cope and how I can help him I’d be so grateful. Thankyou.

    Comment by pheonixhat — March 19, 2013 @ 8:56 am | Reply

    • I’m sending something to your personal email. K

      Comment by karaswanson — March 20, 2013 @ 6:37 am | Reply

  10. My fiance had motorcycle accideny 8-10-13 and has been in hospital every since. He is due to be released 9-6-13. I cannot miss any more work and dont think he is ready to be alone. He is so angry and hateful to me too. He blames me for him being hospital. I know i am going to have hard time controlling him. I know his actions r because of tbi..and dont blame him personnally but he is still mean and think it cld get worse…

    Comment by par — August 31, 2013 @ 4:04 pm | Reply

  11. I had to leave or it would have been “to death do us part” for my kids, myself and the pets, all at the hands of my TBI spouse who threatened to kill us all, burn down the house and blow up his personal Injury lawyers. This is what his injury has done to him. My choices were to stay with him and protect the kids with my life or leave and hope he doesn’t come after us to kill us.

    Comment by Mackayla — November 12, 2013 @ 9:30 pm | Reply

    • What an awful experience for all of you, your spouse included. I’m glad you’re safe. Whenever your life is in peril, you get out. No waiting and no hoping. You get to safety. I’m glad you did. I’m sorry all of this happened to your family. I sure wish you well. Kara

      Comment by karaswanson — November 13, 2013 @ 11:24 pm | Reply

  12. My bf suffered a TBI about 3 weeks ago. I am just needing some motivation and some answers.

    Comment by Rosie — December 5, 2013 @ 1:24 pm | Reply

    • Hey, Rosie, check your personal email. Kara

      Comment by karaswanson — December 5, 2013 @ 9:04 pm | Reply

  13. Dear Kara (and Tasha) I’m so glad I came across this blog. Tasha unfortunately I’m in the same situation as you, my boyfriend (who I’ve been with for seven years and lived with for three) has a family that hate me. They’ve never refused me access to him in hospital but they’ve made it unbearable for me to visit in their presence and they do nothing but criticise me and judge me and tell me I’m doing things and saying things wrong. It got so bad that I felt I had to walk away from the love of my life, not due to the brain injury but because of how his family have treated me. I lasted all of three days before I realised I can’t walk away from him, no matter the brain injury or family issues. But he told me something the other day when I explained why I hadn’t been to visit him as much as I should. He said “love conquers all.” A previously loving but relatively unromantic TBI survivor who still can’t move any part of his body told me that love conquers all. And he’s right. I’m very lucky in that I’ve got a lot more of him back than I got back of my uncle who also suffered a TBI but he won’t be the same again. Accepting that has been easier than accepting how his family have tried to shut me out of his life but reading this blog has helped so thank you. To all of you going through the same thing my heart goes out to you. No one can judge you on your decisions over this until they go through the absolute agony of this themselves. It’s the most cruel form of torture in the world but we can get through it, for those we love and for those that love us too. Some days I believe it, others I don’t, especially those days when all you can do is scream WHY at the top of your voice. But the days when you do believe, and the days when he smiles at you, tell you that love conquers all and gives you a kiss are the days worth fighting for.

    Comment by Cassie Taylor — January 14, 2014 @ 7:09 pm | Reply

    • Dear Cassie. Sorry to hear your boyfriend and your relationship has suffered what sounds like a significant TBI. It’s a shame that you and his family do not see eye to eye. I’m sure the strain of that doesn’t help your boyfriend, either. A lot of survivors simply cannot tolerate the back and forth of bickering people or trying to follow stories and accounts. Perhaps you can calmly explain to his family that your boyfriend doesn’t do better in an environment when his family and his gf are so at odds. Hopefully you can be the calming agent. The classy peacemaker. This situation is hard on everyone and everyone is feeling scared and edgy and fearful. I hope you will find a way to be the one who can establish a healthy, less toxic environment for your bf. I hope his recovery continues on a great path and that you two can return to the lives you chose real soon. Wishing you both well. Let me know how things go. Kara

      Comment by karaswanson — January 16, 2014 @ 8:30 am | Reply

  14. I agree with your above assessment. This is one of the most painful truths about a brain injury. What you pose isn’t unreasonable either, for either party involved in the relationship.

    I would like to share the view of a survivor. A lot of people assume brain injury changes you “for the worst,” and that is why they justify leaving. People imagine non-responsive spouses in vegetative states, or partners gripped by sudden rages and violent losses of control. Others imagine people needing to be tended to and cared for like a child.

    But not all brain injuries are that way, or that simple. Some only cause subtle, though devastating changes. Maybe someone’s no longer spontaneous. Maybe she’s quieter. Maybe he’s not as humorous. These changes also destroy a relationship, but are things that can occur more gradually in any relationship over time as life happens. Brain injury accelerates the changes. Would you leave someone who changed like that over 5 years instead of in a matter of weeks?

    We talk about the intact partners, and feel sorry for them that they have lost the person they loved; that their roles are different; that the duty of caregiver has been thrust upon them in an instant. We sympathize as they struggle with guilt over whether to leave. The choice should be available to them.

    But let me tell you what the brain damaged person feels. She struggles with all those same impulses: losing the connection to her partner as he pulls away; guilt over forcing her partner to be a caregiver, but being unable to survive any other way; grief at the loss of a relationship, but also grief at the loss of self. Self-loathing that a freak incident could lock her permanently, biologically, out of the life she wanted and the love she found, and it’s only biology, but irreparable.

    When that partner walks away, he loses love, but keeps life. He gets to keep his lifestyle, and has the freedom to make choices. He is still intact.

    The brain damaged person loses the same, but doesn’t ever get to walk away from the injury. She doesn’t get to go back to her old life to heal, and now she has to find a new life on her own, because the same issues that apply to romantic relationships also apply to family and platonic friendships. Her lover isn’t the only person weighing the choice to emotionally abandon her because of her disability. She is stricken with problems both social and biological. She gets to now live with and tackle her defects mainly alone, most likely without the resources necessary to do so.

    I’m still not advocating for staying if it is not possible or out of guilt. Nobody is required to stay with a brain injured partner. I just want to illustrate the difficulties and viewpoints of the brain injured, specifically as someone who was torn from the person she loved dearly as a result of injury. Never forget that we get to lose twice: the people we love and ourselves.

    Comment by Lost — April 4, 2014 @ 11:40 pm | Reply

    • Hey, Lost, thanks for writing. You are terrifically well-spoken and you present your point very clearly. I wrote that particular blog to address a very specific situation in a subset of our community. Please don’t imagine that I “forgot” our side of those relationships. Obviously I live that.
      It’s important to me that survivors enjoy the best and healthiest support around them, especially in their most intimate relationships. In the hurricane that is TBI, a lot of relationships end up just hanging on by threads that aren’t necessarily healthy: guilt, fear, lack of time to look at or work on the relationship as it has changed, etc…
      A huge component of successful recovery for us is how we structure our new lives and who we fill them with. It’s importan that we don’t let the people around us just fend for themselves, as this injury has happened to them, too.
      Many times the caregivers aren’t tended to at all and that neglect ends up harming the survivor at some point. The people who surround and influence and support us have changed and have to change and it’s important we help each other do that if we are going to enjoy balanced relationships after these injuries.
      Thank you for writing. I’m sorry for your losses. People who leave us after TBI are not the bad people. They are just the wrong people for us. Good luck in finding that special “right” one. :)))) Kara

      Comment by karaswanson — April 5, 2014 @ 9:11 am | Reply

  15. My husband suffered a traumatic brain injury 8 years ago, and then 3 years later was diagnosed with Tonsil cancer, stage 4B. He already had cognitive problems and had a changed personality, and after the chemo and radiation changed for the worse. Most days I can handle it, but when he gets around his dysfunctional family, he loses all rational thinking. I was told today that I should “apologize” to his drunk brother (drinks all day) because the last time he came to our house, I asked him not to rip out paint and black mold in a bathroom. He became enraged and left the house, screaming at the top of his lungs, some derogatory comments about me. I am tired to feeling my husband’s lack of loyalty to me, but the man I have now is no where near the one I used to have. I am tired of feeling alone, mentally unstimulated, lonely, and married but so alone. I was the one who held his hand and cried so many, many tears. His mother is the one that chose to be neglectful of her children when they were growing up, and only visited my husband 3 times in 3 years, despite the many times he was so ill, including being in the intensive care unit at the hospital. Her reason for not visiting is because I am a bad housekeeper. This is laughable as she never kept a clean house nor washed her kid’s clothes EVER. I try to avoid these people as much as possible, they are toxic, but I am tired of feeling such disloyalty after all the sacrifices I have made, including not getting my teeth pulled out when I had insurance in order to get dentures, but rather choose to keep my few remaining teeth so I could speak to my husband’s doctors when he was so ill and in the intensive care ward, and I had no car, and none of his relatives to drive me to the hospital. F— these a–holes, his mother had the audacity to tell me “he has no brain injury”. This guy doesn’t even know his own phone number. That might be a clue. Or the year of therapy, cognitive, speech, vestibular, physical, counseling…and now he hasn’t been able to eat food for 4 years. But somehow they are more important than I. I wish I could leave, maybe I still will, but I know they won’t truly care for him, or love him, just use him. Help!!!

    Comment by Tired of Being Treated Like Shit — June 18, 2014 @ 10:16 pm | Reply

    • I’m going to send you a note to your personal email….

      Comment by karaswanson — June 21, 2014 @ 9:39 am | Reply

  16. Wow! So many of these comments hit so close to home. I hate to hear so many people living difficult lives with TIBs but its nice to know I’m not alone.

    I have been with my husband for 21 years, but only married 7. My husband sustained his first TIB almost 10 years ago when a pry bar fell out of an attic, while at work, landing on the back of his head. Unfortunately, for workers comp reasons, his brain didn’t bleed for two months later, which resulted in losing the workers comp battle. As if the bleed weren’t enough, he ended up with debilitating 24/7 (chronic) headaches. Yes, 24/7! They NEVER go away. He tried working after this accident but we decided it was best to quit and file for disability.

    Then, last year, he was involved in a single car accident which nearly, and should have, killed him. He was left with significant damages to the left front portion of his brain, not to mention breaking every bone in his face and jaw. He went thru a year of physical, speech, and occupational therapy, and somehow got his drivers license back. Earlier this year he purchased a 71 Camaro with an incredible amount of horsepower, that in my opinion, should only be driven by a professional driver, and not someone with 2 TIBs. This car creates a whole lot of arguments between us, as he claims this is the only thing that makes him happy and keeps him from killing himself.

    So, now lets talk about the brain injury issues. Even well before this car accident, because of the chronic head pain, resulted in anger, anxiety, depression, suicidal thoughts, lack of judgement and intimacy, road rage, little to no emotions, etc. Since this car accident, everything I just mentioned has gotten substantially worse, including a change of his personality, as well as other items I’m sure I forgot to mention. He talks about killing himself daily, often times multiple times a day (this has been going on for years and becomes worse as the days/weeks/years move on). He carries a gun with him all the time, and since last Labor Day weekend has shot it off 4 times, each time making me panic and worry that the bullet hit him (messing with my head). Last time he had the gun pointed under his chin and was moving it outward. The gun went off putting a hole in the bill of his hat. The second time the gun went off (last October), he shot himself in the hand because, as he said, “I was trying to take the gun apart and I just didn’t care if it hit me.” My family and friends are scared to death he will hurt me – maybe I’m naive but I don’t think he will. He has also take handfuls of pain pills on numerous occasions with the intent of not waking up.

    He also doesn’t take his medications as prescribed, and refuses to let me help organize and dispense it. I guess he feels he has so little control over his life that this gives him something to control. What happens with this is that maybe some days he won’t take his meds, but other days he will take too many. This makes him virtually incoherent, slurring, drooling, eyes rolling back, unable to focus, unable to have a conversation, unable to walk (having to crawl around), oftentimes injuring himself around the house, etc. I feel like a babysitter, and I shouldn’t have to do this. I feel like a prisoner in my own home because I obviously can’t leave him that way.

    We can’t even have a discussion anymore without us arguing within the first three sentences. I have recently realized he doesn’t have the normal cognitive functions and can’t understand things like he used to. I am not sure if he even realizes/comprehends the deficits he has with his brain, including his cognitive abilities. So, if he doesn’t realize it, then how can he fix it?

    Although he is not physically abusive, he is mentally and emotionally abusive, although I believe it to be caused by his brain, as he was not like this before. He constantly manipulates me, especially with the suicide talk, the guns going off, and him taking handfuls of pills while in front of me, so I get to watch.

    He has no idea how worried I am about him. I cry every day about him and this crappy situation. I tell him how worried I am when I’m out and call him and he doesn’t answer his phone. I don’t know if I am going to come home to him being gone….forever. I know with him wanting to take his life that it’s not a matter of IF but WHEN. Some of you may ask why I don’t admit him into a mental hospital. The reason is that it’s not necessarily a matter of the depression, it’s the unbearable 24/7 pain. We have tried everything known to be available and nothing has worked. I would like to think if it were “only” the brain injuries that we could deal with it (but I could be wrong).

    I have told him a couple times, including within the last week, on how unhappy I am and that I want a divorce. This, of course, turns him mean and vindictive and him wanting to take everything, even reminding me how dumb I was to have married someone with a disability. My intention is not to be mean. I really do love him, but I can’t tell you how long it’s been since I have felt that emotional and intimate connection, and been IN love, with him. I haven’t been the best wife to him lately, and feel terrible for that. He deserves to be treated well by someone who is head-over-heels for him, and I deserve the same. However, if I knew he was going to take his life within the next year or two, I would gladly stay with him and make the best of the situation. I’ve been going through this for 10 years and I can’t see doing it for another 5-10+ years.

    Any advice would be welcomed. Thank you.

    Comment by Hopeless — July 11, 2014 @ 5:30 am | Reply

    • I’m going to email you at your email address. Give me a day or so. I want to respond to your letter. Hang in there. Kara

      Comment by karaswanson — July 11, 2014 @ 7:43 am | Reply

  17. It’s been interesting reading these comments from other people affected by TBI. My live-in boyfriend of one year suffered severe TBI six years ago, wasn’t expected to survive. He was married with a very full life at the time of his accident. His wife left after a year and he was living in an adult care home when we met. He has made a miraculous recovery and we are living a very happy life now and are both thriving. It has it’s unique challenges but it is worth every bit of it. Because of what he has endured and overcome, he is a special kind of person and I cherish him like a treasure. Stay positive no matter what!

    Comment by Birdie — July 28, 2014 @ 4:25 pm | Reply

    • Thank you Thank you, Birdie, for writing your success story. :)))) So so glad you and your partner have found a great life after TBI. Best wishes to you both and thanks again for writing. Kara

      Comment by karaswanson — July 29, 2014 @ 1:35 am | Reply

  18. He had the stroke 10 months ago. I’ve been waiting for 10 months for it all to be better and for the person I loved for 20 years before last November to come back to us. My girls and I. We go about our lives and struggle to come home and be with this total stranger. He can’t work and provide for us anymore. He isn’t a father to two teen girls anymore. He isn’t my fun, smart and strong husband anymore. He doesn’t cook at all anymore. He leaves messes everywhere. Refuses to brush his teeth. Spends what little money we have left after I slave at a job I hate all day so he has food and shelter and health insurance. I hate him. How is this a marriage? What will I do when my girls start to leave to live their own lives? I take care of them by working and cooking and cleaning. I don’t do it for him. Who says below we took vows and should honor them? What about his vows to me and our family? What about the things he has stolen from us because he wouldn’t take care of himself enough to avoid a stroke? I live every day with the knowledge that we are ruined because of him. My girls and I deserve a real life full of happy memories. Not ruin caused by this mean, anxious, selfish stranger living in our most intimate midst. But if I leave him who will take care of him and where will he go? We are truly trapped by this stroke. We are innocent bystanders enslaved to his stroke with no other options. Don’t know what any of us did to deserve this.

    Comment by Wife no more — September 1, 2014 @ 1:45 am | Reply

    • I just read this. Give me a little time and look for my response in your private email, OK? Kara

      Comment by karaswanson — September 1, 2014 @ 8:39 am | Reply

  19. God, how we who are care-givers suffer each and every day like “Wife-No-More” above. I lucked out with my situation. I placed my wife in a nursing home against her wishes and she loves the place. I wanted to move in because the food was so great and somebody else would deal with the incontinence problems.

    As far as Wife-No-More’s problem, I’d seek counseling to end the relationship and get county services involved to take care of the sick man who is causing all of those he loves to get as sick as he, but in other ways that are destroying their souls. “I hate him.” I know the feeling. I’ve been there. It’s not he or she that we hate, but the situation that evolved from an accident none of us had control over . . .

    Please meditate upon this and find a warm-hearted therapist to advise you in what steps you can take to safeguard your family’s sanity and love. It may be the hardest thing you will ever do in life, but I believe it will be for the best.

    It worked for me, but I was in a different situation with a spouse who had a traumatic brain injury (TBI) and I was a veteran with PTSD (Post-Traumatic Stress Disorder.)

    Comment by contoveros — September 1, 2014 @ 10:38 am | Reply

  20. I’d like to personally message you.

    Comment by Blahblahblah — October 1, 2014 @ 10:39 pm | Reply

    • look in your personal email

      Comment by karaswanson — October 4, 2014 @ 10:08 am | Reply

  21. I suffered a T B I 10 years ago ! , My Wife abandoned Me ! Only hear from Her once a month When ? She wants My financial support still.
    I think She’s wrong ! , She only threatens to take all of My finances through Divorce if I don’t continue to support Her nonworking , lazy ass !
    My Son says do not divorce Her because She’ll take everything I still get. So Ya see , I’m stuck in this abandoned marriage that’s nothing but financially draining ! , it’s wrong but What ? can I do ?

    Comment by Danny O'Neall — November 17, 2014 @ 11:39 am | Reply

    • Danny: Please go see an attorney. Get some good legal advice. If this has been going on for ten years and you are getting nothing out of the marriage, then please go talk to someone who knows the laws in your state and who can give you all of your options. Life is too short to live all angry and resentful. Find out what you’re looking at and what the consequences are to all of your options. They might not be as bad as spending your life alone and bitter. Good luck to you. Please check back and let me know what happened, OK? Kara

      Comment by karaswanson — November 17, 2014 @ 8:13 pm | Reply

  22. Kara ,
    I made it back here by luck !, F Y I ~ I live in a brain injury facility & I’m trying My thought of option 1 from reading Your blog.
    That is : I have went to the director of the facility to find-out if this place will offer My Wife some Help ! , She’s never got any & needs it.
    B T W ~ You from Omaha ? if so ? You know Kelly & Jerry Swanson ? , their sisters.

    Comment by Danny O'Neall — November 17, 2014 @ 8:56 pm | Reply

    • Good for you that you are taking positive steps to change your situation. Maybe the facility can help direct you to obtain competent legal help so that you can begin to figure out where to go next with your marriage situation. I’m not from Omaha and it’s snowing here in Michigan. Good luck, Danny. Let me know how it goes for you. 🙂 Kara

      Comment by karaswanson — November 17, 2014 @ 8:59 pm | Reply

  23. I understand, I am a girlfriend of a brain injured boyfriend. He is 48 years old. He has had no relationship leading to marriage. He has the flat syndrome many have that are injured. Communication is difficult with him, he says things that are sometime hurtful, but he doesn’t know he is saying things he shouldn’t. Very good looking man, so I wondered why he wasn’t married or had kids. I was in a relationship where he didn’t want kids for most of my life. I am in menopause and here I want to have a child with a man who was interested. He was, and so far, I havent been able to conceive.I didn’t know he was brain injured in a vehicle accident at the age of 16, I found out by him telling me, until we were 8 months into the relationship. By this time, I fell in love with him. I have been told by people who know him, that he has a wall up, and it won’t come down and will take years.
    I would like to know how should I see this? or handle it?
    I don’t know how I attracted this man into my life.
    The injury causes him not to say: He loves me or likes me. Yet he says we should get married.
    I feel so unsure about how to go forward with him. Any comments are welcome.

    Comment by Starfire — March 26, 2015 @ 3:22 am | Reply

    • Hey Starfire:
      I think I’m going to write you at your private email. Look for a note there from me soon. 🙂 Kara

      Comment by karaswanson — March 26, 2015 @ 6:33 am | Reply

  24. My wife suffered a traumatic brain injury a little over 4 years ago after a fall from a horse on her birthday. She requires 24 7 care due to her injuries. Her family has abandoned us and left the sole responsibility of her care to me. The in home nursing costs are not covered by my insurance and I don’t know how much longer I can afford them. She is only 37 and I am 39 so we potentially have long lives ahead of us but I am overwhelmed and lonely. She has basically become my child that needs to be cared for, changed and repositioned every couple hours as well as fed through her g-tube and due to the cost of nursing I work full time during the day and take care of her at night so I get minimal sleep, like 4 hours a night if I’m lucky. I don’t know what to do but I know financially I can’t carry on. Social security gives us about 20k a year and last year I spent 49k in nursing costs alone. ANY advice would be welcomed.

    Comment by Rick — September 1, 2015 @ 4:07 am | Reply

    • My wife suffered a traumatic brain injury a little over 4 years ago after a fall from a horse on her birthday. She requires 24 7 care due to her injuries. Her family has abandoned us and left the sole responsibility of her care to me. The in home nursing costs are not covered by my insurance and I don’t know how much longer I can afford them. She is only 37 and I am 39 so we potentially have long lives ahead of us but I am overwhelmed and lonely. She has basically become my child that needs to be cared for, changed and repositioned every couple hours as well as fed through her g-tube and due to the cost of nursing I work full time during the day and take care of her at night so I get minimal sleep, like 4 hours a night if I’m lucky. I don’t know what to do but I know financially I can’t carry on. Social security gives us about 20k a year and last year I spent 49k in nursing costs alone. We both had decent jobs but now i am the sole provider. I too found out issues of infidelity after the accident but could never hold it against her in her current state. Shes actually a much happier and childlike person now but cant do any thing for herself. I work to take care of her but have no life of my own outside of work. I used to feel guilty to do things with friends or family when i actully had help with her but now i feel like i have to have some time to myself or i will go crazy and feel animosity. I still feel guilty though at times even though people tell me i shouldnt. Its hard not to. I also feel guilty for wanting a relationship with a woman like i once had with my wife but short of a miracle will never have again. My wife, my stepson, and the nurses all depend on me to support them but i have no one to support me or care how im feeling. I feel like the weight of the world is on my shoulders and i have no idea what to do. ANY advice would be welcomed.

      Comment by Rick — September 1, 2015 @ 4:31 am | Reply

      • Hey Rick, I’m going to write you at your personal email!! Kara

        Comment by karaswanson — September 1, 2015 @ 8:05 am

  25. These stories are so heartbreaking, and hit very close to home. I will try to make my own story brief and share how I ultimately had to handle it. I was married for 6 years prior to my husband’s closed head injury from a mva. Sadly, our marriage was barely tolerable prior to the accident. He had been financially terribly irresponsible, and gotten involved with drugs in that last couple of years. I had filed for divorce prior to the accident, discovered I was pregnant within a week, and we had decided to make a last ditch effort to little avail. Fast forward a few months after his TBI, he recovered physically but was violent, and had difficulty expressing himself. When I was six months pregnant, he threw me down because I had gotten onto him for peeing on the couch, and then proceeded to attempt to set the house on fire. I had him removed from the house and proceeded with divorce. I worked to have him placed in a good facility far away, because I was concerned of him seeing someone that would attempt bring him home to me. His family and his friends fought with me for one reason and one reason only: they didn’t want to have to deal with him. But they attempted to crucify me because I wouldn’t anymore. Ultimately, I had to choose the safety and mental well-being of myself and my child over him. Yes, I fought with guilt, but I can’t imagine what our lives would have been like if I had tried to remain with him. We would likely be dead, I most certainly would have wished I was. Do what you must do. If you are driven into a terrible mental state yourself, you will not be able to properly care for your tbi spouse or yourself. No one has the right to criticize how you handle your situation if they are not prepared to put their money where their mouth is and do it themselves. But some will be outrageously cruel. There are facilities available to handle patients like this, but it can be difficult to place them. I could get no help placing him until I refused to let him come back home and filed for divorce. Utilize the resources that are available to help you!

    Comment by sandy — September 3, 2015 @ 11:43 am | Reply

    • Hi Sandy! Thank you so much for sharing your story. I’m glad that you survived it and chose your safety and that of your child, no matter how heart-breaking. These injuries are often so terrible…They short-circuit brains and turn our loved ones, sometimes, dangerous. It’s a cruel injury. The fallout for loved ones is, so often, heart-wrenching. I’m cheering for you, your ex and your child. You’ve all been through so much. I wish you a smooth road ahead. Easy breezes. Thanks again for shining such an important light on such a dark corner of this injury. You have helped people here, make no mistake. I wish you all good things. Kara

      Comment by karaswanson — September 4, 2015 @ 7:57 am | Reply

  26. My husband of 16 years had a TBI on February 9 from a bicycle accident. As with many of the other comments I really don’t know how much of his behavior to attribute to the injury. I am convinced that although he is physically about 99%, there is a lot more going on.
    He still has some hearing loss and gets SOOO tired. I understand these things. What I am struggling with is him rejecting me. He apparently is reflecting back on his life and where we are today and thinking that he has completely lost himself – not allowing for the fact that we all have 20/20 hindsight and we make the best decisions that we can at the time with the information that we have. Apparently he feels that he has “sold-out” on the feelings in his heart and that I am the cause by “guilting” him into seeing things my way. We have achieved a very comfortable level of income and lifestyle and he is now very uncomfortable with it. Lately he passes so many sideways comments about me, money and the American way of life as it is all about the money. (He is Canadian) No one has forced him to be where he is today and he did appear to be happy before his accident but now he tells me that it was all a big pretend and he hates it all and especially me.( He hasn’t actually said he hates me.)

    He says he still doesn’t know if he wants to stay with me, but will let me know. What kind of way to live is that – always waiting for him to say he is done with me? He has implied that he is only staying because he would be bankrupt if he leaves. He shares nothing with me any more. For all of 2015, we have been out together 2 times and refuses to be alone with me to go out. There is NO physical contact unless I initiate it – not a pat on the back or hug. Sex is a non-topic. A kiss is a peck on the lips like he would give to a stranger. He has multiple cell phones, He has multiple email accounts. He is on his computer most of the time. He showers and dresses completely away from me. (Nudity has not been a thing since I have known him.) Refuses to wear his wedding ring as of about 3 weeks ago. I feel like I am ignoring the obvious – that he is either having an affair (on-line?), or working up to a physical affair, or is investigating porn. The bottom line is, the trust is gone – how can one live like this? Or is this the TBI??? He mocks me when I even mention it.

    He is under extreme pressure at work and has been given until the end of the month to “prove his worth. This is so stressful, but he does not share much about it and let me be a refuge for him. He is just trying to do it all by himself and I am so sad to watch. What can I do when he has just cut me out?

    I know he has had lots of trauma in his life but its not like I have had an easy ride the last few years. I have lost both parents too, had colon cancer, full hysterectomy because they through I had ovarian cancer, seen him through heart surgery, brain injury and lost both of his parents – his mother I deeply loved and miss very much. I know he is deeply effected by losing his ties to Canada – his home. I too feel this as we have no real reason to go there any more. It is one of the most beautiful places on this planet and always felt like home even to me.I miss it and cannot imagine how he is dealing with it. When I try to talk to him about it, be just brushes it/me aside.

    In effect, he is like another child – in fact a teen as he is pulling away from me. I do almost everything at the house: the cleaning, bill paying, cooking, laundry (mostly), yard upkeep, grocery shopping,etc. He just lives there. Says he wants to be like room mates. I DON”T!. I can find a roommate through the newspaper if that is what I wanted.

    I just don’t know what to do. He does not want to work on “us” as he is preoccupied with with if his job, but if not that it would be something else. He does not sleep well. He is overly sensitive to sound, does not want to socialize except with his biking club (girlfriend there?), does not want to go out, does not want to plan anything into the future, does not really want to talk. How long do I wait? How much rejection can I stand? How much blame can I absorb? How can I keep holding it all together? I just don’t know. But I too, think about the fact that I may only have about 25 years left, at most, and I do NOT want to live everyday in fear of being put aside, feeling no joy, intimacy or compassion. I do not think I will ever want to be with anyone else.. But at least I will not get up every morning wondering if this is the day when someone he decides he is done with me. Like I child, he thinks he can just “grow up” and move away because he refuses to work through the parts of love that lead to a stronger relationship in the long run by being there for each other when life is at it hardest.

    Comment by Jean — September 16, 2015 @ 6:41 pm | Reply

    • Hey Jean! Thanks for writing. I’m going to pen you a reply to your personal email. Kara

      Comment by karaswanson — September 17, 2015 @ 11:03 pm | Reply

  27. Thank you.

    Comment by Loaiza — October 6, 2015 @ 9:56 am | Reply

    • My true pleasure 🙂 Kara

      Comment by karaswanson — October 6, 2015 @ 11:46 pm | Reply

  28. I stumbled across this site tonight in one of my desperate google searches. 2 1/2 years ago, 4 weeks after we were married, my husband fell and hit his head on several rocks, behind a restaurant/bar that had a giant embankment with a cement slab at the bottom. My life in many ways ended that day. He was in the hospital for several months. They kept telling me that he wouldn’t improve. I hung in there. I believed. I stayed by his side. Once he came home with me, things went down hill quickly. He acquired all of these obsessive behaviors, and we started fighting. I was so tired and so alone. I made mistakes. Along the way, he’s healed dramatically. He is smart, in school. Doing a lot. He’s also explosively angry. He criticizes me constantly. He’s become fanatically religious and controlling. And other moments…he seems like he’s healing and doing so well. Last February I asked him to move out. I couldn’t take the daily insults anymore. He criticizes me all day, constantly. He started drinking and smoking and I just couldn’t take it. I hoped that we would get counseling, date again, that he’d continue to heal, that something would change. But it’s just gotten worse. He dropped counseling right away because he said the counselor was a communist. Now he says Jesus is the only counselor and he won’t go to therapy. He drinks beer every single day. Often in the middle of the day. I hardly see him because every time we try to spend time together he says mean, snarky things to me, that he doesn’t think are mean they’re just “the truth”, and I lose it and we end up fighting. I’m 34 years old and I cry every day. I miss him so much. And I feel so rejected by our friends. People treating me like I’m a failure who abandoned him. No one knows how he treats me, because he’s so nice to other people. And I don’t understand why he has absolutely no control when he’s around me. He has these patterns in his behavior, and some days I blame myself, like I created them when his brain was all smooshy. I don’t know what to do anymore. Part of me wants to run, flee, get divorced and try to move on. But I’m so heartbroken. I’ve loved him since I was 14 and I feel like he hates me. I’ve lost everything. I wish I could fix it. I just don’t know what to do anymore. I belong to a wives support group, and see these women that have suffered for 10, 20, 30 years. They have good days, but they all talk about how they wish they would have left because their lives have been hell. But that it’s too late now. It scares me. I’m so sad.

    Comment by Selena — November 22, 2015 @ 2:32 am | Reply

    • Hi, Selena. Thanks for writing!!! I’m glad you were generous enough to share your story, as I’m sure many spouses and partners see their experience in yours. What stuck out for me were the lines where you said he has absolutely no control and the one about people don’t understand because he’s so nice to them. If he’s not being an asshole to everyone, out in public, at inappropriate times, spouting off….If he’s able to act in a socially-responsible way at times when it is expected, then I’m tempted to believe (just from this short example) that you are caught not wanting to leave because of the injury when that’s not causing that particular problem. In any intimate relationship, you deserve to be treated with respect and kindness and love. It is sad to miss him but, at least for now, that man you married is gone. If he refuses to hear you, refuses to attempt to change, refuses therapy or any other strategies to improve your experience, then you leave. You do not deserve to be mistreated or verbally abused your whole life. If you want to try and make things better while you are beginning to strategize an exit plan, then keep your messages to him very short and very repetitive. The message is simple and the same, all the time. Don’t wind up and get into it with him. Keep is simple and calm. When he snarks, you reply, “That is not kind. That is a mean thing to say. You are choosing to be mean to me.” Enlist the help of someone in your wives’ club or a trusted family member or friend to begin to prepare to leave if you must in a hurry and to begin to figure out how you can make it on your own. Only when you have the freedom to go will you know if you want to stay. If you leave and you wish to hold out hope, then tell him you will be willing to listen again when he comes to you with kindness. When he gets himself some help. When he honors and respects you. Right now it sounds to me like he has a great deal of anger, probably around his injury, and he’s simply taking it out on you. That is common. I realize that many made vows to God to stay through sickness and in health but I truly believe that God did not want anyone to stay in an abusive partnership. Everyone deserves to be treated with warmth and care and respect. Choose you. Choose your life. Choose your future. Just be safe and careful and don’t put yourself in a situation where you tell him you are leaving and he can become violent. Do what you have to do to be safe. To get safely to a future that involves someone who adores you. I am wishing you well. Please write back and let us know how you are doing. Kara

      Comment by karaswanson — November 22, 2015 @ 10:20 am | Reply

  29. As I read this. It feels exactly like my life. No one but the wife really understands what a head injury has done to her husband. He is physically there, but the person you knew and loved is dead. THe sanrkiness and fighting happened to me everyday as well and after about 3 months of it, I too, had to tell my “husband” (stranger) to leave for my own sanity. I still cry everyday. I don’t know where you are but I would love to tlak with you and cry together and work through the rationalization fo how in the world to move forward.
    My heart and soul ach for you beavcuse it is like aching for myself.
    Margaret

    Comment by Margaret — November 22, 2015 @ 12:32 pm | Reply

    • Hey, Margaret. Thanks for writing this. I’m sorry you had such a similar experience. Maybe Selena will contact you for support. We are all cheering each other on here. Thank you so much for reaching out and offering to help her feel sane and supported. Kara

      Comment by karaswanson — November 22, 2015 @ 6:00 pm | Reply

  30. My husband had a stroke 16 months ago. Me, my 15 year old and 3 year old was just so happy he was alive. The doctors said he would never be able to walk or talk again and would not leave the hospital alive. He can walk a little and talk enough people can understand him but he was very mad about having his stroke and very mad at everyone around him. If me and our kids did not set every minute with him and talk to him he would bang on the walls and cuss. He banged on the walls all the time. He hid his guns and said he wished he was dead. I had to give him showers, wipe his butt,feed him with a tube in his stomach because he refused to eat, and give him his meds. He is 6ft 5 inches 315 pounds. Im 5ft 1 inch and 105 pounds. He wanted me to help him walk.He wouldn’t take no for a answer to anything. He didn’t care that our 3 year old was under our feet and he could fall on him. After 7 months of my kids hiding in the house I talked him into going into the nursing home. Now he needs me there everyday. He always uses the excuse he needs more food even though I keep him plenty of drinks and snacks. Anything that will get me there he will say. I was going everyday for a while. And answering 30 to 40 phone calls a day but i just cant do it any longer. He wants to know every day what time im coming the next day. I cant make any plans to do anything with the kids because were always getting ready to go to the nursing home. Ive always believed in till death do us part,but what do you do when your husband is mean to your kids and to you. When he makes sure you and your kids cannot have any kind of life because hes mad because of having a stroke. Hes hurt my 4 year old a couple of times since hes had his stroke and didnt even care. He is always wanting to have sex (when hes home) and has even exposed himself in front of our kids. He puts his hands up my shirt, and in other places right in front of our kids ,then ask can we, can we? And I cannot make him stop doing it ! I dont know what to do anymore. If I dont go to nursing home every day he calls begging me, screaming and crying. Im burned out, stressed out, and at the end of my ropes. This is just the short version of what hes put us thru since his stroke. Those people who judge us when they have not been in our shoes should be ashamed of themselves !!!!!

    Comment by Bunny Mitchell — November 25, 2015 @ 9:58 am | Reply

    • Hey Bunny, you won’t be judged here. We get it. We welcome you here and we feel for you. I could feel your pain in your writing. I’m so sorry to hear of your experience. How awful. I can only imagine the levels of stress and strain on you, having to deal with all this and yet trying to be a good mom at the same time with your kids’ having their own needs….
      Often times, doctors at nursing homes don’t really see the patients much or they want the patients to go out of house for doctors’ exams. The kinds of therapies they offer at nursing homes usually specialize in physical effects from stroke and many simply cannot help their more-complex cases. It’s obvious your husband is suffering from a lack of impulse control and a high-anxiety stress level which makes him feel like he has to see you all the time and constantly call you and demand your attention. Are they medicating him for this? Ativan or something that would afford him some peace so you could enjoy some as well? I know a lot of people are against heavy meds but, if this goes on, you will simply give up going to see him at all and his kids won’t want to know him. Hats off to you for hanging in there so far. Maybe you can investigate his meds and see if his doctor can’t step in and give you some help here. If he’s not going to get some kind of therapy/counseling to begin to trust your boundaries and schedule, then maybe his doctor can prescribe a better anti-anxiety med so that he can begin to appreciate fewer visits on your part because you have to tend to the kids. I’m interested in what happens. Let me know what kind of meds he’s on for this, if any. See if they are giving him something to reduce his anxiety. Sounds positively awful for both of you. Kara

      Comment by karaswanson — November 26, 2015 @ 6:42 am | Reply

  31. He is on zanax,3 to 4 times a day. If i go to nursing home he doesnt need it. If I dont he takes all 4 during the day. And he always lets me know he had to have them because I didnt come to see him. I brought him home for our 4 year olds birthday party and he kept me running getting things for him. Even though he can get them himself. He said he didn’t feel good and wanted to go back before i even got the cake out. Then kept asking to go back when we were singing happy birthday. My daughter took him back and all he could say is i didn’t say 2 words to him the whole time. When actually i was having to split my time with him and our 4 year old and everyone that showed up for the party. Hes doing alot better as far as his health but he still wants it all to be about him and he wants to come first. But i refuse to make my child come last anymore because he shouldn’t have to when his daddy is doing so much better and can wait 5 min till i can get through doing what im doing,then wait on him .

    Comment by Bunny Mitchell — November 26, 2015 @ 12:27 pm | Reply

    • Hi, Bunny. Sounds like he needs to re-learn the rules of social etiquette. He is acting like a child and that can be from the injury or the emotions surrounding the realities of the recovery. Installing boundaries is not easy. You are taxed to the gills already. However, it is worth a shot if you are willing. Pick a time of the day when he can count on you to be there, on the phone. Every night at seven or whenever. Tell him that it is like when he was back working. You both work during the day and didn’t get to talk all the time. Now you have to work during the day and take care of the kids. He has to work during the day getting better. Catch up on the phone at the pre-established time every night without fail. Determine if you will call or if he will call you, say, at seven. Before that and after that, you don’t answer the phone, even when it’s hard. Explain to him, when he fusses, that it is not seven. That you two talk at seven. When it is seven, give him the undivided attention he craves and needs and the updates of your day, whatever. Reinforce the rules. “I’ll talk to you tomorrow at seven.” Keep the message clear and simple. Be mentally prepared before you talk on the phone at that time so it is positive and encouraging. Make it a reward for him to have waited the whole day to hear your voice. The rest of the day, if he calls a hundred times, don’t answer it. Decline the call. Answer it at seven. If he fusses that he called you a hundred times, tell him it was not at seven that he called and that you picked up when it was seven. Don’t abandon this, even if it is difficult at first. See if he can catch on. If he tries to emotionally blackmail you by telling you he required Xanax to get thru the day because you weren’t there for him, tell him that you hope he works on developing coping skills so that, in time, he won’t require the medication. Be calm. Always calm. Don’t allow him to bait you. See if this works. Let us know how it goes. Kara

      Comment by karaswanson — November 27, 2015 @ 7:44 am | Reply

  32. I will definitely try that. I see my life in so many of these stories. I dont know why our husbands think its alright to abuse us and that they can just because we are were wives. My husband smiled at me and said,you do have to talk to me, when I told him I was not gonna talk to him when he was screaming and cussing at me. He acts like I have no other choice but put up with his cussing, screaming, and having fits. Now thats hes in the nursing home he never treats anyone like that except me. And that really makes me mad that he can control himself around everyone but shows his tail around me n the kids. As soon as someone comes around he acts like hes fine. Finally my friends and family has seen it all so they know what weve been through. I just wished the nursing home would see the real him. I am so glad I found this sight. It has been a God Send !!!

    Comment by Bunny Mitchell — November 27, 2015 @ 2:02 pm | Reply

  33. People will bully us and abuse us…until we refuse to let them any longer. No one deserves that. No one gets to do that, brain injury or not. I don’t know how much a part of your husband’s behavior can be attributed to his injury. For that, always remember to keep your message clear and concise. He sounds manipulative and only you know if that was present before his injury. In any case, refuse to engage in any of his negative behavior. He has learned that you “have to talk to him” but he hasn’t learned yet that he has to talk to you-calmly and with respect. It can be as easy as, “When you are ready to talk to me as a mature, respectful adult, I will look forward to what you have to say.” Remember that, when people are scared, often men, they get angry. Like a wounded lion roaring. They lash out when they fear. I suspect he fears that you and the kids are going to move on without him and that is a real fear. You may wish to start planting seeds such as, “I miss the husband who used to just talk with me….” Encourage the kind of behavior you seek. Choose your words so they are always moving him in the right direction. Good luck. Keep letting us know how it’s going. Kara

    Comment by karaswanson — November 28, 2015 @ 9:10 am | Reply

  34. I am currently with a man I love who had a brain injury last October in a work accident. We were engaged and very happy. He then had an affair for six months. I guessed but couldn’t prove it until finally he slipped up. There are naked pictures of this woman on our computer and also numerous photos in his cell phone of them having sex. They are all gone now except one which I saved. He told me it was over but now a month later his cell phone bills show he has been talking to her daily. I am devastated. He admits it but blames it on not being able to talk to me. I feel I have been supportive and caring of him after his accident and totally there for him. He lies a lot about everything. Is thcis a symptom or just the way he treats me. I love him despite what he has done and I feel so afraid to leave and start over again. I just turned fifty. Any thoughts?

    Comment by Cher — December 1, 2015 @ 10:58 pm | Reply

    • Hi, Cher. I’m so glad you wrote. It is true that some particular areas of the brain regulate our moral compass and affect our choices and impulse controls. Not knowing your husband’s damage, there’s no way to tell. However, I’m more troubled that he seems to be well enough to successfully hide an affair from you and be able to get sex photos on a phone and onto a computer. That sounds to me like a pretty high-functioning survivor…I’ve heard spouses, both sexes, lament that, after an injury, their loved one didn’t want to be with them anymore and went out and found someone else. Sometimes, a person doesn’t want to be around the one who knows them how they were and how they now fail to measure up. They want to start fresh and be able to construct a relationship that doesn’t have the injury as such a part of it. In your husband’s case, and I’m just guessing here, he may be reclaiming some power and self esteem with a torrid affair. He may be feeling he’s entitled to such “desserts” because of “all he’s been through.” There could be a lot of reasons. Maybe, when he was being taken care of by you, he lost the equal partnership balance and now needs to get out there and find someone where he can be an equal. In any event, he has now seemingly cheated on you in two on-going stretches. He has not shown remorse. Rather, he has blamed the affair on “not being able to talk to you” and then he went and resumed it. You are fifty. I turned fifty this year. All I know about fifty is that we are too old, not to be starting over, but to settle for anything less than a respectful and loving and adoring relationship. If I were you, I’d be more afraid to spend the rest of my life with someone who does not respect me or our relationship. You reported that he lies about everything. Do you really want to be with someone who lies about everything and who is giving his best already to someone else? The brain injury was a trauma to both of you and to your relationship together. It appears that he has already chosen how he wants to start over. Now you owe that same gift to yourself. You deserve to trust your partner. To be adored and appreciated and not lied to at every turn. Give yourself the gift of that. Give yourself a chance with someone who wants to be with you and wants to come home to you and wants to appreciate you. This isn’t the guy, Cher. You can leave because you did what a good partner does. You helped him through the crisis of the injury. You allowed for some pretty serious consequences of that injury. You don’t have to feel guilty. This isn’t some drunken flirtation to forgive. This is an on-going relationship. Another life he has constructed. Go get your own happy ending. Look yourself in that mirror and promise that gal that you deserve truth and happiness and respect and honor. I’m cheering for you. You deserve much better than this. :)) Kara

      Comment by karaswanson — December 2, 2015 @ 10:57 am | Reply

      • I will be 58 in 3 weeks. I cannot tell you how everything in your letter sounds EXACTLY like what happened to me. The only exception is that my husband was more tech savvy and was/is able to hide what he is doing. I always trusted him totally with the computers, but right before I asked him to leave he was on his iPad or cell phone constantly and tried to turn it away from me when I even walked by. Not having an on-line affair, I think NOT! He NEVER acted this way before his accident. This was a frontal lobe injury and quite clearly the center for adult reasoning, shame, remorse and compassion have been destroyed. He is only able to think about himself as though he has reverted to being a teenager again. He has assured me that the person who was my partner before the accident is never coming back so I need to get over it. Out right cruelty.

        I feel your pain. I am having such a hard time accepting the fact that this IS his new self. It is over and it is OK for me to move on. Especially with 3 teenagers in the house who cannot understand why Dad is acting this way and has totally turned against Mom.

        Comment by Jean — December 2, 2015 @ 12:22 pm

      • Well its been months since ive been on here. Kara, you and everyone elses responses ive read helped me so much. I felt like I was going absolutely crazy ! My husband had another stroke and passed away on December 16th. I pray for everyone that is still going through taking care of thier loved one who has had a stroke. Thank you for making this websight.

        Comment by Bunny Mitchell — March 22, 2016 @ 7:19 am

      • Ohhhhhhhh, Bunny…..What a long and painful road you have traveled. I’m so sorry to hear about the death of your husband. What a dizzying blur of feelings you must be experiencing. I’m so sorry for the loss of all the things you loved and will miss. I wish you sweet time to heal and a light growing bigger, promising a road ahead that awaits you with peace and happiness. Please keep us in the loop. Wishing you the best. Kara

        Comment by karaswanson — March 22, 2016 @ 7:35 am

      • I placed my wife in a nursing home several years ago with her TBI and it was the best thing I could have done for both of us. She became incontinent and my son and I just couldn’t handle the care-giver tasks. She has flourished in her new setting and I have been making a better life outside of the home in my retirement years.

        I thank you for the advice you provided me years ago and and glad to call you a Blogging Friend!

        Michael J

        Comment by contoveros — March 22, 2016 @ 7:40 am

      • Glad to hear you are all doing better, Michael. None of this is easy. None of these decisions come without pain and remorse and guilt and fear and grief. I’m glad that your wife is flourishing in a place that can help her. I’m glad that you and your son are able to resume your quest for some type of new normal. Good luck to all three of you. I hope you all stand tall so that happiness can find you easy and hug you all up. :)) Kara

        Comment by karaswanson — March 22, 2016 @ 7:46 am

  35. My heart aches for you, Jean. For all of you. I know you are suddenly faced with having to hold a marriage together and a family together and there is nothing easy about this. There is the added weight of all the guilt around leaving someone who is sick. Nobody can decide for you. There are no easy answers. We take vows…We make promises….All of that plays a part. Sounds like your kids already get it and won’t blame you for anything that comes after now. You are not expected, by any God or any person, to live the rest of your days in with someone who is cruel. Your life and your happiness count. They matter. Your kids have already lost the dad they knew. Don’t let them lose the mom. If you aren’t going to leave him and he’s safe alone or safe with the kids, get out and get yourself a life you want. You need to keep the hope. You deserve that. Maybe you can find a way for you and your husband to set out on an unusual course, to go separately but amicably. Nobody’s happy. You both deserve to be happy. Your kids need to see happy some way. They need some hope and a safe place to land from this, themselves. You know I’m wishing you well. Let me know how it goes. Kara

    Comment by karaswanson — December 2, 2015 @ 5:07 pm | Reply

  36. I have a few comments I’d like to make. First, this is by far the best blog I’ve come across to address my specific issue. I reached out to Kara three years ago when my life was turned upside down by a similar situation, and it was the most meaningful advice I received. Second, I’m glad (Kara) that you’ve started to make your advice public, rather than privately messaging the responders. You have so much to offer and your voice of reason needs to be heard. Third, I followed the advice I gleaned through these interactions and can say two years later, I’m so thankful I did. You only get one life to live. All of these wonderful women and men that are seeking the right answers and trying to do the right thing deserve to be happy and enjoying your one life. Thanks to everyone that’s written in for the perspective I needed to make the decisions I did. I wish everyone on this journey to find the same peace and acceptance in their lives and with themselves.

    Comment by amy — December 2, 2015 @ 8:00 pm | Reply

    • Amy, your note brought tears to my eyes. My heart is leaping for you, so happy that you have found the strength to make it through your storm and create a happy life for yourself. So happy to read your note!!!!!! Thank you for your kind words but you are the one, all of you are the ones, who are making it and working it and summoning the strength to survive and thrive again. You are an inspiration, Amy. You have just given a great gift to all these people here suffering like you were. You have given them hope that there IS a happiness out there with your name on it. Thank you so much for writing with your update. You have absolutely made my day!!!!!!! Kara :))

      Comment by karaswanson — December 3, 2015 @ 9:00 am | Reply

      • Yes, I thank you too Amy. I am beginning to heal by telling myself that the person I loved, and the person that loved me died when the brain injury occurred. The body is still alive and the person in there knows who I am. However, the part of their brain where we connected as partners has died. The brain has healed, but the neural network has mended in a way that that my partner does not exist any longer. The hard part is seeing the body of the new person and expecting them to be the person that we once knew and loved.

        Comment by Jean — December 3, 2015 @ 12:43 pm

      • Boy, that’s a great way to look at it, Jean. Gives new meaning to word “chemistry” when describing why two people connect and fall in love. The chemistry which brings two together can be altered by time, by choices, by growing apart, differing perpectives, alcohol/drugs, brain injuries, experiences…..Sometimes the best thing we can do for a relationship is to realize when it is over and to let it go. To wish each other well and allow each other to go find our happiness with someone else, somewhere else. This is not always a failure. Sometimes it is simply the most gracious, self-less, loving choice.

        Comment by karaswanson — December 3, 2015 @ 12:49 pm

  37. Thank you for your comments. I really appreciate them and it is good to not feel so alone. I am struggling with accepting that this has happened and I remember the wonderful times we had. He admits now to being a complete asshole and he is sorry. I am confused and I admire you Jean for getting out. I feel so paralyzed and had a total breakdown myself over all this and was in the hospital for six days. I am now on Quetiapine to keep me calm and stable and Trazodone to help me sleep. I feel so scared of starting over again. My problem is that I feel like his affair was my fault because I didn’t do whatever it is that he needed of me. I am thinking of going and staying at my sons for a week and yet I am afraid to leave. What am I so afraid of? How does one find the inner strength?

    Comment by Cher — December 2, 2015 @ 10:36 pm | Reply

  38. You, my dear Cher, are already so damned strong that you need only look at what you have suffered and survived in order to realize how much of a rock-hard warrior you are!!!!! HIs affair is NOT your fault. Blame the injury. Blame him, if he’s well enough to be responsible for his choices. But don’t blame yourself. I’m concerned that your situation is causing you to melt down and require medical intervention. This is a HUGE red flag and not to be ignored. We aren’t meant to simply suffer our relationships to the point where they are breaking us down and breaking our will. When you are so deep in the tornado, there is no way to imagine the calm. Go stay at your son’s for that week. Go nurture yourself. Heal. A little distance might return to you the gift of perspective-of how your life one looked and how you wanted it to look and feel. There are a thousand things worse than being alone and starting over. Being, instead, in a relationship that causes you such heartbreak and physical and emotional hardship cannot be any better than that. Don’t be another casualty of this injury. It may have claimed your marriage but it doesn’t need to claim your life and your health as well. i’m concerned about you. Please keep writing here. Kara

    Comment by karaswanson — December 3, 2015 @ 8:38 am | Reply

    • Thanks Kara! Your words were a comfort and I did go to my sons. At first I thought I would die from the grief and crying. It has been so painful and he is so selfish! Certainly not the man I fell in love with. He is impossible to have a conversation with because he feels so sorry for himself and he can’t help me get over what he has done because every conversation is all about him. I am coming to terms with the man he has become and I am not prepared to live the rest of my life living with his lies as I can no longer believe anything he says. I am so heartbroken and I believe things happen in life for a reason but I can’t figure this reason out. I have found a suite to rent and will be moving myself out by the end of the month. Strange that this decision has actually stopped my crying. I faced something I was so afraid of which is letting go and living without him and facing this has taken some of the fear away and brought me some peace. I think it has to do with finally making a stand that is right for me. Thank you everyone for your posts as it is so good to not be alone!

      Comment by Cher — December 10, 2015 @ 12:25 am | Reply

      • Cher!!!!!! I started reading your note and I swear the Rocky theme started playing somewhere….!!!!!!!! I loved your line about how your decision, strangely enough, stopped your crying. 🙂 I’m sure your tears were not just from grieving the man you had fallen in love with but those tears were probably also for the woman this situation was creating in you. Now you have gathered all your courage to take a step for you and for your self esteem and peace of mind. You have no idea how many spouses will read your note and feel a kinship in their darkest place. Thank you for that. You had to take one awful, scary step and it’s something that is soooo hard. Maybe this stark change will invite him to realize how awful it has been for you and he may even begin to hear what you have been saying. Who knows. The important thing is that you have just established a boundary that is healthy for you. Regardless of where it goes and where you go next, you have decided to set boundaries that allow for you to exist and be heard. I admire your strength and your new commitment to your self and your happiness. It doesn’t mean all the sadness is gone but it sure means that you have evidence to show yourself of just what a rocking, warrior of strength you are!!!!!!! Keep letting us know how you are doing. You have lots of people here cheering you on and hoping for good things to come your way. :))))))))) Kara

        Comment by karaswanson — December 10, 2015 @ 7:42 am

  39. Dear Kara, I have been sitting here reading for about forty-five minutes and still have no clue of how I found it.It is like finding out you are not the only one with these issues and reading all of these letters wondering why the hell no one ever told you about this forum.My journey into TBI with my husband began August 17,2003 the night of his massive stroke.We had been married 15 years when it happened.I did everything to help him recover or rehabilitate to the point of having a complete breakdown and feeling if I did everyone would step past me as if I were invisible.In fact for a few years that is how I saw myself “invisible” unless there was something I needed to be doing for him or anyone else.He has punched me choked me beaten me up for no reason or because I made him mad because I spoke to him.He can no longer speak due to his stroke but he can still roar at me or anyone when trying to figure out what he is trying to say.He does nothing but sleep and sit on the couch and watch tv all day and night.I do everything cook, clean, pay bills, shop. When we go somewhere he is not like that to others.I can’t tell you how many people tell me how sweet he is.It like he is Dr.Jekyll and Mr. Hyde but whenever he chooses. He says I wont give him sex yet he is impotent.He wanted me to go see a doctor to see what was wrong with me.Even if he coul have sex I don’t want to do it because I dont trust him because I never know when he will act out.I just don’t know what to do anymore to help him.I love him with all my heart but it is so hard to give everything and never get any love or compassion in return.There is so much more I could say here but it doesn’t really matter because no one ever listens or offers solutions. thanks for letting me vent.Debi

    Comment by Debi English — December 21, 2015 @ 11:12 pm | Reply

    • Hi, Debi, welcome! I’m so glad you found us. Sorry to hear you have been in this mess for twelve years now. That’s a long time to be struggling and giving and not getting what you want to feel happy and safe and loved. I’m concerned that you report “loving him with all your heart” when it sounds like that is a truth from the past. The truth from the present is that you are married to someone who has choked you and punched you, someone you don’t trust and someone you don’t wish to have sex with. After twelve years, it seems like the majority of his healing after the stroke is done. What is left is someone who gives sweetness to others but not to you. It’s hard to change. He seems to have settled into patterns which do not serve you. The questions, I think, to ask yourself now, heading into a new year, are these: how does this situation serve you now? Do you “love him with all your heart” and, if so, why? Is that statement all about the past or are there things in the present you love? Begin with that. Begin with what serves you about staying. What is it you get out of staying? Is it simply relief from guilt? Is it just easier after all these years? Only you can know. If you are willing, write down five short sentences that begin with, “I want to be married to someone who….” and see how you complete those statements. I fear for your safety and I wonder if it is safe for you to begin a conversation with him that shares those statements. Begin the new year with those statements and, going from there, start to ask yourself if he is the one who can be that partner? If it is safe to do so, begin to ask him in short, calm sentences: “I want to be married to someone who is kind, supportive, helpful, respectful to me. Are you that person?” Whatever your statement is. Keep it simple. Keep the statement short and simple. Begin a conversation with him that brings an attention back to you, where it hasn’t been for so many years. He probably doesn’t even see you anymore. I can guess the reasons you serve him but it’s important you find out why and how he serves you. Let’s go from there and see if we can start the new year with some truths on which to base an action plan. We are all here and cheering for you. Be safe there. That is the #1 thing. Be safe in beginning a process which has action in it. Movement. Movement toward something better, whether it is to stay and improve the situation or, eventually, to go. Let’s just take this one step at a time and see if we can’t help to make things better this new year. We’re right here for you. Kara

      Comment by karaswanson — December 22, 2015 @ 3:13 am | Reply

      • Kara,
        Even though I have written in several times and each time helps me to feel better for a while, the pain of losing my husband (emotionally) it so acute here at the holidays. I cannot stop crying.
        I have one question, is there any research that you you know of that explains WHY the person with TBI focuses all of their anger and negative emotions on their partner/the ones that love them the most? What is the psychology behind this? I am killing myself with the constant question of WHY?

        Here’s wishing for a much better 2016 for everyone that has written to you. It can only get better, right?

        Comment by Jean — December 22, 2015 @ 1:00 pm

  40. This is what I know from all the so many thousands of stories I’ve heard, from my own experience and from having a great therapist to bounce things off of…..
    All situations are different. Your answer could be any of these or some combination of them:
    Often, after injury, the support circle of the survivor is reduced due to losing their job, losing their social activities and the people who make up those networks. In some ways it’s just numbers: they are around their spouse and loved ones the most so, unfortunately, they get the brunt of the anger that has built up.
    Some survivors are dealing with cognitive processing and memory issues which inhibit their ability to progress and make forward steps. Often, their days are the same, one after another in terms of what they recall.
    A lot of people, men especially, lash out when they get scared. TBI is terrifying so there often ends up being a lot of lashing. Many survivors are unwilling or unable to get/afford/reach therapy where they could process their losses, fear and anger in a safe place. So it has no healthy release. It festers and spills over into all his/her relationships. Often brain damage involves emotional “faucets” which turn on and off our emotions. Many survivors, instead of rage, cry as a response to everything. Similarly, their “governor” might be damaged and they lose the social etiquette which keeps “normal” people from spouting and pouting and acting like children having a fit.
    You can drive yourself crazy asking why. Instead we have to ask, what now? Survivors may need relearning, may need cues, may need medication, may need therapy, may need all of the above. They may need their support circle to make changes to encourage better results. It’s a learning process with everyone needing to be willing to change. Usually some combination of tools really can help most survivors and their loved ones. But there is a lot of trial and error and their has to be a commitment on the part of the survivor, if he can muster it and choose it, to recognize his behaviors and identify them and install strategies to improve them.

    Comment by karaswanson — December 22, 2015 @ 4:54 pm | Reply

  41. Thank you for this post. At the very least it validated my own feelings. I have never met anyone who shares my exact situation, but everything you wrote fit perfectly. My husband became ill almost 5 years ago. The illness caused severe inflammation of the brain leaving him with permanent damage. He functions now like a preteen with some autistic behaviors. We have three children. It is challenging and lonely. We have very few resources in our area. I choose to stay for many reasons, the first being for the benefit of my children. A seperation would only add to their distress. Thank you for letting me know what I feel is normal.

    Comment by Lyndsay — May 2, 2016 @ 12:51 am | Reply

    • Oh, Lyndsay….I’m so glad you wrote. What an awful situation to find yourself in. I feel for you. You described it as challenging and lonely…I can only imagine how much! I worry about you withering. I wonder if you have help. Do you ever get time off? Does anyone take the kids for a weekend or take your husband for a weekend? Those are the things that were running through my mind when reading your note.
      You must be exhausted. Five years is a lot. I admire you. I hope you will find some comfort here. There are a lot of people dealing with some very challenging spouses and partners. You can vent here safely or I will give you my personal email, if you need. There has to be an outlet for you to stay sane. Keep on writing here. We are cheering for you. Kara

      Comment by karaswanson — May 2, 2016 @ 6:29 am | Reply

      • Thank you for your response! We lived in AZ near my husbands family when the illness occurred. After two years that proved to be a hinderance more than a help so we moved to another state to be near my family. So I do have a support system with my kids. My husband recently started spending long stretches of time with his parents- 2 months here, one month there, etc. That has been very helpful. It gives me a huge break from the stress. He has a lot of cognitive issues and struggles with what he wants. He feels torn between the world of an adult-which he knows he is, and the world of an adolescent- which is how he feels. I wish there was a ‘How To’ book on exactly what to do in situations like this. My goal is to do what’s best for everyone which seems to change as his personality does. Our home life is not typical but as long as life feels normal to my kids I am happy enough.

        Comment by Lyndsay — May 2, 2016 @ 10:35 am

  42. hi karaswanson..can we have private conversation?Your blog post is exactly what i am searching for the answer to many question in my mind and i actually relate on it..my email add is jaz_lady12@yahoo.com. Im looking forward for your email msg. thank you in advance!

    Comment by jaz — May 28, 2016 @ 6:37 am | Reply

    • Well, hey there, Jaz. Check your email account. I’ve contacted you there. 🙂 Kara

      Comment by karaswanson — May 28, 2016 @ 9:21 am | Reply

  43. I am a spouse (wife) in this position and it has aggagerated mental illness that was challenging before the accident but blew up AFTER the accident 11 years ago. We have gone through all of these things and has reached the point where he is getting senile and when he is lucid he is in denial and he wont get help for himself. I have been married for 34 years and now I am married to an emotional 4 year old and I have 3 children ages 16,17, and 20, who have lived almost all of their life in this dysfunction My 16 year old is autistic. I would just love to boot him out the door because I am exhausted with this life, but he really doesn’t have anywhere to go. I have gone to counseling and am active in Al Anon because it is like living with a dry drunk. He doesn’t remember any conversations that aren’t light and fluffy. What can I do???? I read this blog over and over because it validates that I have some real ambivalent feelings about our marriage continuing. I just don’t want to DO THIS ANYMORE!!!

    Comment by Mary Eavey — June 15, 2016 @ 12:27 pm | Reply

    • Dear Mary: I’m so glad you wrote. Your note stuck with me. I feel sick for you and all you have had to deal with. I was struck with the statement that he is in denial and won’t get help for himself. I’m guessing you cannot leave because of the kids needing an anchor to return to, even as they are growing older now. Your autistic son is going to need your help, I’m guessing, for a long time. You really don’t have to feel anything bad about just NOT wanting to do this anymore. It’s hard enough for a healthy couple to raise three healthy kids. You are absolutely amazing to have done what you have done. When this thread gets posted, know that you will have people feeling for you and cheering for you all over the globe, literally! I know you said your husband really doesn’t have anywhere to go…I’m sure you would feel guilty just kicking him out, even though you are over the whole mess. The thoughts that are coming to me, off the top of my head, are just to create space between you. Can you move him to your basement? Is there an adult day care or activity center you can send him to so you can have some separate time without him? I keep thinking that you are the one with the power, even as you feel powerless. Maybe write down for yourself a list of things that would make it better right there for now. Maybe it’s just time you don’t have to deal with him or specific help you need around the house. You have the power to start laying out your boundaries. Brain injury survivors often do best with routine and not being allowed to just make up the day as we go along. You might consider telling him that you are extremely unhappy for whatever your particular reasons. Keep them to three and short and concise. Give him a list of the things you want him to do every day, even if it is just to fold the laundry and empty the dishwasher. Give him a week to do it.Remind him near the end of each day what hasn’t been done yet. See if he starts to turn. It can even be you want him not to be around you or talk to you from this time to that time of a day while you are having your morning coffee or nightly unwind. Just pick three things that you can start with that would improve your situation. Let me know in a week how it went and we’ll go to plan two. :))) We’re going to find a way to make things better, Mary. And, if that means eventually sending him away, we’ll figure out a way to do that so he’s OK and you don’t have to feel guilty. Let’s just keep talking and see what we can figure, OK? Kara

      Comment by karaswanson — June 18, 2016 @ 10:00 am | Reply

      • I was thinking, Mary, that maybe the conversation with him starts something like, “I’d like us to try and improve things around here…..” Maybe ask him when he is most unhappy there and then follow when you are most unhappy. Ask him specific questions. He may not have good ability to choose from a thousand different choices. Things might not have occurred to him to do. With busy teenagers around and the here and there chaos of an everyday family, he may get lost in it. I know you have gotten help for yourself and you said he won’t help himself. Have you and your kids installed strategies that might help him in spite of himself? One of the simplest is what I was saying about not giving him choices. We have trouble with countless choices. Instead ask him, Do you want chicken or fish? He may not be able to self-initiate which means, he might just sit there all day and not think of something to do. He may need a list of “chores” or a schedule for the day. That schedule can include things which help you like, “Work outside from 10 am to noon” if that’s the time you want to yourself….If you can, let me know more about how he is specifically and how he spends his days. Kara

        Comment by karaswanson — June 18, 2016 @ 10:21 am

  44. Thank you for being so gracious to me!!! Now for the “rest of the story” I wrote this on day 13 of a 16-day hospital stay which started by sending my husband to the hospital by ambulance due to a very sudden blood infection that happened overnight. He came home a couple of days ago and is doing well. Re-reading my post, I can see that much of it was fear talking. Due to his condition right now we are going to concentrate on just getting him better. Your post really hit a lot of nails on the head and I have been thinking about or doing a lot of the things that you mentioned. I did visit the local senior community center and when he is feeling better, I am going to insist that he get involved there. They have about 100-200 people that are there daily and an active membership of 2000. All kinds of activities from playing Bunco to popcorn and a movie to exercise classes to crafts. They have lunch daily for a minimal donation and they even have a bus service for those who don’t drive. It is a happy, busy place.

    Right now he is doing his twice daily antibiotic infusions himself. He will do them for 6 weeks minimum. He had to do this a year ago when he had his last infection, so he knows how to do it. I am concerned about his health conditions and his/our future, but right now I’ve got to put those things on hold and just help him help himself to get better. This shows me that he really does have it in him to do the right things; I just think he needs to have more structure and hope in his life so he will do the little things that keep life moving forward!!!!

    We have had 11 years of non-stop chaos since his accident and I am not sure what is actual brain injury and what is psychological. The MRIs and the neurological tests that have been done seem to indicate “malingering” instead of actual injury, which has been a source of great frustration to me. He has constant pain from his permanently injured nerves in his legs and heart issues and weight issues. It is just very complex. However, for right now, I am just going to concentrate on today, tomorrow, and next week. I will let you know after that what has and hasn’t worked on the plan that you suggested we take. Just not ready for that yet.

    Many blessings to you!! Reading your blog and the other posts/responses touches so many things that I thought I was alone in; everybody thinks by now he should be “better”. I need to learn what my expectations should be adjusted to and how to accept the realities of the differentness of life that made a drastic change in May of 2005.

    Comment by Mary Eavey — June 24, 2016 @ 9:43 am | Reply

    • Jumping ahead to the new year: still struggling with what is acceptable and not acceptable in my expectations. The me last June wanted to get in a car and drive as far east without looking back. The me last October want to get in a car with my kids and drive as far east as possible without looking back. The me at the beginning of this new year just wants no more medical stuff to deal with and wishing he would not forget everything we all say or places we have been or injuries he has had but doesn’t know why it is important for the doctors to know key things, like heart stents and prior surgeries, etc. He is still a very ill man.

      The specialists all came to the conclusion that he did not have an infection; he has veineous insufficiency, which means that blood pools in his legs and due to excess fluid pressure he was getting ulcers on both legs. Had a vein ablation done on his left leg and he was starting to look and feel better. Then before Christmas his infectious disease doctor didn’t refill his antibiotics and due to the holidays went 6 days without his med despite our pleas for refills and now his legs look worse than ever. No infection, huh???? We are going back to family doctor tomorrow to “start over”.

      He still wont do basic things to help his memory and his physical condition and that is still my bone of contention. I have told him how I feel and he doesn’t seem to grasp it. So I gave him a paper that told him what my issues were and he just tosses it aside. He does seem to be a bit nicer to me and I am a bit better in accepting it, I think. Before when he would try to do little things and I accepted it then he would stop doing the improvement things that I want him to do to improve his quality of life. I know from Al Anon that I have to accept the things I cannot change, but boy is that hard when sometimes I think he opposes me just for the fact of opposing me. I think he feels like everything he wants is being taken away from him and if he can refuse to stop eating ice cream and not wrap his open wounds, then he is still alive because he can still make choices, even if they are bad choices.

      I am going to try some care-giver support groups in the future. I am not giving physical care but I have to make the boat to continue to float and be at his appointments and work late because I don’t want to lose my job. I would say the last 10 months have been a constant code red and it is very stressful. I do try to take care of myself and go to a quilting outing every now and then and etc. The next couple of months, I am sure, will be stressful as we figure out what we can do to bring healing and restoration and peace to our house.

      Comment by Mary E — January 3, 2017 @ 7:28 pm | Reply

      • Hey Mary! Nice to see your post. Sorry to see that your struggles continue. I feel for you. Sounds like there are some real struggles continuing…A couple things jumped out at me from your letter: that you gave him your issues and he tossed them aside. That’s gotta hurt. He either cannot or will not meet your needs right now and you have needs. I’m glad you are considering going to some care-giver support groups. They get it. A survivor may not be able to grasp your needs or he may be incapable of trying to meet them. He may not know how to initiate meeting your needs or a whole handful of other possibilities. I learned long ago that the people we think are supposed to meet our needs will often hurt us with disappointment. I have been delighted so many times when my needs were met by surprising people and things. I can see part of what you need is a break and I hope somehow you are enlisting the help of people in your life (his family?) who might step in and help. Nobody can do this all alone. You need time alone and time away and time to focus on your kids when this whole series of events has gobbled all of you up. It’s tough to be in constant crisis mode. I hope the doctors can get his leg sores and that whole situation under control so you can begin to install strategies that will help on the other end. A day center or other outside events where he can be with other people and you can catch your breath would help so much. I sure am cheering for you. I hope the new year brings many positive returns. Keep dropping by and letting us know how you are doing. Really wishing you well. Kara

        Comment by karaswanson — January 3, 2017 @ 8:27 pm

      • Update on our situation: we finally found out that in addition to his heart and circulation issues that the doctors said that were causing the sores on both of his legs: that he is diabetic. Not extremely so, but he is on a diabetic medication now (Metaformin)(sp???) and he is eating more healthy foods. As a result, he has lost a lot of excess fluid in his legs and is feeling better. And he is not SO MUCH in a fog. Diabetes can contribute to short term memory loss and other cognitive issues. We are going to get him tested next month to see what level his issues are at and what to do about them. It is been about 5 years at least of having to remind him of every little thing, so I have been feeling pretty frustrated. I think it would help if we knew what was going on instead of it all being a mystery. I can hang in there and be civil for another month! I have not tried the care-giver groups yet, but I plan on it when I am not so crazy-busy every night after work. Seriously. After all of this time he is finally starting to let go of the denial that he is not going to be “better” but adjust to a “new normal”. He is not so explosively angry and that is a relief.

        Comment by Mary E — March 15, 2017 @ 6:21 pm

  45. My husband has a severe TBI 2/19/16. He also suffered an MRSA infection to his shunt a couple of months after and it made us go backwards in everything he has been able to accomplish. He is bed confined and has little movement on his left side. We have two daughters one of them is his biological daughter and she is four. My daughter which he also adopted is eleven. This past week has been hell x 100,000,000,000. He tells me he wants to blow me up or kill me and hopes I burn in hell. He is home on home health due to insurance and the wonder world of insurance rules and regulations. He will be eligible to go back to IP rehab in 25 days. I can handle him cussing me out but now he has started calling our oldest daughter a F*#*ing brat. He also said that he wishes this house burned down and everything in it including our kids. My mother has moved in with us to help me with him and the girls. He also calls her a fat B#8th and hopes she dies too. Is this anger and rage possibly just temporary? I pray it is. We have been married nearly seven years. I don’t want to give up and walk away. I would pray if it was me like this he would stick it out and hopefully it get better. We are only four months out so I hope this is just part of it. His neuro is no help. All he basically says is this is just part of his TBI.

    Comment by Christy Parsons — June 25, 2016 @ 12:27 pm | Reply

    • Oh boy, Christy, what an awful situation you have been dumped into. I am sorry to hear of all of this. A lot of survivors suffer damage to their “governor” so their emotional faucets are all messed up. He may have damage which makes him react to every instance, good and bad, with anger (my mom, after her strokes, reacted to every instance with crying). He likely has a lot of fear which often presents as rage. I’ve seen that a lot in men where they don’t want to appear vulnerable. He may be lacking a filter so he’s just saying anything that comes to mind, even the mean things. It can be a lot of different possibilities. I’d try keeping your statements very short and saying the same thing each time he is mean or rages. “That is a mean thing to say. I don’t deserve that. I am trying to help you get better. I won’t stand here and be abused. Let me know when you are ready to be kind.” And then leave the room. It’s important, early on especially, that your statements regarding anything be short and easy. Don’t give him a ton of choices. Choices, often for survivors, can be torture. Ask him if he wants chicken or fish, not just asking him what he wants for dinner. Begin to keep a log of when he rages and is mean. Time and what is going on. Look for patterns. Is he doing it when he’s frustrated with something? Or when his sugar is low? Or after a particular medication? Please keep in touch here. We’re going to see if we can’t help you as you go along here. Hang in there!!!!!! Kara

      Comment by karaswanson — June 25, 2016 @ 1:03 pm | Reply

      • Kara, thank you. I know we are “newbies” but this is some scary stuff!!! I have thick skin, but a girl can only take so much. I will try your suggestions as I am desperate! Thanks again. Glad I found your blog.

        Comment by Christy Parsons — June 25, 2016 @ 1:10 pm

  46. Christy, you may have thick skin but you shouldn’t have to. And you shouldn’t have to be a girl who “can only take so much..” These are tough injuries but the people trying to help shouldn’t end up on the short end of rage and anger and meanness. That’s not cool under any circumstances. It’s just plain hurtful. A lot of recovery has to do with finding out what is the reason for the behavior. Is is the damage or the response to it? That’s why the log can help to see patterns. And then, once you start responding with those short statements, you will find out if he is able to process and adapt to it. He may need to relearn social norms. He may need to get some help in processing that anger and fear and loss. In any event, you and your loved ones need not be at the brunt of any meanness. That’s just not cool. K

    Comment by karaswanson — June 26, 2016 @ 9:16 am | Reply

    • We are blessed to say this passed! Before it did though, it hit rock bottom. I was applying deodorant to him and I did not do it right, I assume and he punched me in the stomach! That was it. I had him admitted. They changed some of his meds. They took him off Keppra which is known to cause rage. A few days once he came home he was him again. Or his new him. He will never he him again =( He went to IP rehab a few weeks later. He was able to learn how to get up and transfer from bed to chair. He still has weakness but he is working on it at home with home health still. We have moments still. He had bad days still, but they are not a constant, daily thing anymore. I will take this. He is no longer abusive. He will cuss still at times and I remind him quickly, no don’t say that. I know we are in for a long battle possibly lifetime but if he works on it I am willing as well. He did not ask to fall and sub stain his TBI. As long as he is willing to always seek help or is willing to get it when I have to get it for him I will never leave him. I know once he is more mobile we may be in for more issues but until then I am happy.

      Comment by Christy Parsons — August 28, 2016 @ 12:42 pm | Reply

      • Thank you for your response, Christy. You bring up a huge important point. That none of us, nobody, deserves to be abused. Not for any reason. Kudos to you for nipping it in the bud and for shining a light on it. You are a strong woman and a great example. :))) Kara

        Comment by karaswanson — August 28, 2016 @ 2:14 pm

  47. This is me, my life. I am married to a TBI victim, and have never seen my life in the written form. This is so hard to explain to people, they don’t understand. It has been a lonely place having no one to relate to. Sometimes this condition is invisible to anyone other than immediate family, due to less exposure. I can’t tell you the weight off my shoulders just having someone else that understand and that “gets it”. Thank you for this incredible gift.

    Comment by Krystal Newman — July 13, 2016 @ 7:48 pm | Reply

    • Hey, Krystal! Thanks for writing. I’m glad you stumbled upon us here where we all get it. Consider yourself immediately cheered and understood. I may be the one with the TBI but I’ve also cared for both parents after their multiple significant strokes. This whole thing is a mess. For everyone involved. You are right-so many people don’t see the invisible damage and all the havoc it wreaks. It’s really a cruel injury. I hope you have help and are able to get away and nurture yourself so that you don’t disappear. No one can do this by themselves for long before burnout and dismay start to creep in. Please keep writing here. I will help if I can. Kara

      Comment by karaswanson — July 13, 2016 @ 8:21 pm | Reply

  48. I read your post and everything you wrote is what I’m going through, it is so hard to explain it- my husband suffered a ruptured brain aneurysm which caused blood to go all over his brain. He had a stroke and has a large amount of brain damage. It has been a year and we have 2 young children – only two and four. He has full time caregivers and has severe aphasia. It has been so hard on our 4 year old daughter, who “doesn’t like” her “new” dad. He is not violent, he is actually very childlike. I am currently living with my parents and the kids because he was too overwhelmed with our toddlers making a lot of noise and playing. He actually improved once we left but this is not a permanent solution. We will have to sell the house he is living in because of all of the debt and medical bills. I simply don’t know what to do next ! Do I move him to an apartment close by? Try living under the same roof? I am in so much pain, still grieving the husband and father we have lost. Any advice would be appreciated

    Comment by Grieving young mother — August 25, 2016 @ 11:22 am | Reply

    • Oh, my dear……What a tough tragic turn in your life. My heart sure aches for you and your family. Every one of you! While you have the job of keeping it all together and there are a lot of people looking to you, please know that you have to keep YOU safe and healthy and sane. Nice that your parents are helping you out some. God Bless them. More and more, there are residential housing units cropping up all over the place where people in your husband’s situation can stay with a little supervision or help when needed. I have a condo unit at my complex here where two young brain-injured women stay and caregivers come and go off and on. I don’t know all the financials but I think they are paid for with disability money and government help. Depending on how independent your husband is, can you secure a studio apartment with the proceeds from the house? Then, at least, you could take the kids to see him as safe visits until they are no longer scared of him. It sounds like, after the sale of the house, you cannot have him living with you guys. Is he receiving disability benefits? If you could get him into a studio, then maybe enroll him in adult day care activities so that you can have the time to do what you need to. I’m sure the whole mess must be overwhelming. Does he have family and friends who could help you? Maybe there are parents of his who might help financially to get him into a smaller place so that you could use more of the house proceeds to do what you have to do. If they are close by, perhaps you could ask them to take your husband in for the time being while you get all this sorted out and to save you some cash. This cannot be your problem alone. I hope you’ll keep updating here. you have a lot to work through and I/we would love to help if we can. There’s a lot of people in this blog community who are going to read this story and just feel such compassion for you and what you are going through. Hang in there. Keep writing and let’s see if we can’t help you figure this out. Kara

      Comment by karaswanson — August 26, 2016 @ 8:03 am | Reply

  49. I am so glad to find this blog. I have been feeling so alone. Thank God for the internet, so we can find each other. My partner of 6 years had a TBI/stroke 10 months ago. In this case, he was misdiagnosed by the system which did not believe he had suffered any brain injury at all, but rather attributed his sudden, erratic behavior to mental illness. He was hospitalized with many tests which “ruled out” brain damage, and he was put on many strong psychiatric meds. Due to this, it was very hard for him and me to tease apart what was wrong — whether it was symptoms from the medicines or a brain injury or mental illness. Under supervision of his regular doctor, we weaned him off all of the powerful medicines. then we got to see what was left. I took care of him, this was so stressful. His mental state was confused, and I was afraid he would set the house on fire, or pee on the sofa, or take the car and get into an accident; I still had to work all day at my job and leave him alone. His family abandoned us; his adult children all “have lives of their own” and also what I found was if you are not close to the person, you don’t realize all the subtle changes. I was very close to him and knew him better than anyone, so these changes were all too obvious to me — but his family denied he was any different. I’m younger than he is, very fit and healthy, many years of career ahead of me, and he suddenly was thrust into “retirement.” He spent most of his time sitting on the sofa, watching re-runs of old TV shows, even though he previously did not watch TV. He lost his drive to initiate activities. He became very passive and dependent and clingy. His personality changed in those ways which are described as “subtle,” but oh, so significant. The most significant in terms of our relationship, is that this loving, warm, spiritual man lost his “spark.” His eyes no longer twinkled, the sexual passion between us — poof! — GONE. He still wanted sex, but it was for me sex with a stranger who was not connecting with me spiritually or emotionally. So devastating, as we were so much in love. This was not a relationship of “roommates,” but a passionate, balanced relationship where we were each other’s best friends, sharing intimate parts of ourselves in long, deep conversations. And now I felt like my best friend died. I have been grieving for this loss, yet I am not a widow; it is like an invisible grief that no one sees or understands. It is so very lonely. My young adult children also did not understand, and could not accept this relationship. The rest of my family also did not give me any emotional support and they told me to just pack his things up and kick him out. My friends also told me to “just leave.” Now, you may have gathered by the way I am writing in the past tense that yes, this relationship has ended. What happened was a cruel combination of my partner’s new delusions and accusations about me. His short term memory was absolutely shot; we could not have ANY “relationship discussions” where we could progress and move forward. From one day to the next, he would totally forget what happened in a previous discussion. His mind remained “stuck” on these delusions that I (when I go to work during the day) am cheating on him. I NEVER cheated on him. I have loved him from the day we met and there has never been even a thought in my mind of cheating. But his brain injury tricked him into thinking I’m unfaithful. I started to realize, there is no arguing with him or persuading him. I could not be angry with him, because this is not his fault, and I also realized I can’t convince him of the truth. He got angry one evening and stormed out of the house to go “stay with a friend” and he said “there is no point in this relationship,” and what I did, was I allowed him to leave. I allowed that to happen. I allowed him to break up with me, even though that was the hardest thing in the world. When he returned a few days later as though nothing had happened, I told him, “you broke up with me, and I think that is for the best.” Even though it broke my heart to say and do that. I know he will never get better. And I know he will never understand. There can never be a restoration of what we previously shared. That man I loved is gone. I feel so sad and grieving. Yes, I have had to deal with my guilt and my sense of duty. I nursed him for six months while still working full time, wanting so desperately to “bring him back” but I can see that is not going to happen. I know that if certain circumstances were different, I could definitely have continued on as his caregiver and “roommate” for a much longer time — but the circumstances that have tipped it in this direction for me are that I was forced by my family to choose between him and them. I have children I love deeply, and they ran away from me when this crisis hit. I have known my children far longer than my partner, and I have a strong duty to them, as well. They are young adults but they are not yet fully launched. This was a terrible, terrible choice. And it is even quite a bit more complicated than I’ve written here — which is to say that, sure, I know that people judge, and they honestly have no clue of what I’m thinking or feeling or the complexities involved. It is, to them, as though this is a snap decisions and easy to just turn my back and walk away. And nothing could be farther from the truth. This was an incredibly hard choice. I still question myself every day about it. I know in my head that this is “for the best” and I know that my partner is safe where he is, with his friend. But I miss him every day. I still dream about him. In these dreams, he is who he was before. And then I wake up, and he is gone. And I remember that he is now a stranger — but the love is there, and it is very strong. My family and friends think I’m over him and ready to date, and that is like the hugest insult to injury. I don’t know why they can’t see that I am in many ways like a grieving widow. There is no respect or understanding. I will heal, and it will take some time. I’m not going to rush this process — I love and honor this man and our relationship too much. I think what I really want to emphasize here is that, for all of us who wrestle so hard with these decisions to leave or stay, with the guilt and duty and love and loss, is that although we are in some ways “abandoning” our spouse/partner who has the TBI, if this weren’t so devastating for us, then you (who judge) could think that we did not love the person. But we love them SO MUCH, this is such a strong love, not just a physical attraction, not just a duty (for better or worse, til death do us part), but a deep, VERY DEEP love — the highest form of love, this experience teaches us what love is, and I am now at a point where I’m aware that I’m being judged, but I know that anyone who judges has not lived this experience. I don’t wish this on anyone, I really don’t. Bless them for not understanding — how could they know what this is like? I will always love him, I will always care about him. Leaving was so hard. And staying would have been hard, because I would have lost my relationship with my children. No one should ever have to face “choices” like these. And at the same time, have to “keep it together” and take care of myself and my own health, and keep up my performance at my job since I am now the only financial contributor to pay the bills. My heart goes out to all of you, and thank you Kara so much for writing on this topic. My heart also goes out to every TBI survivor who undergoes a personality change.

    Comment by grieving for him still — August 27, 2016 @ 7:24 am | Reply

    • I am so glad you wrote!!! You are a gifted writer and there is no doubt you will help many many people with your post. I am so grateful. What an impossible situation for you, for so many….This injury is such a bastard. I was especially moved by the spark you spoke of and how it is missing now. The subtle nuance in any relationship. The special connections we share with our lovers and partners. My heart aches for you. Seems so many carry such heavy guilt when these rotten situations have so few endings that can make everyone whole and happy again. Please come to choose to forgive yourself when, to me reading that, I felt only cheers for you. The fact that he is in a safe place now is a gift to him. Another gift you could give to him, perhaps, and to you and your family, is to enlist that awesome writing talent of yours to compose just such a letter as this and teach them all what you have shared here. To teach them about grieving the death of someone who is still living. To share with them what an intimate wound this experience has caused. For young adults going forward, you may just give them the gift of a compassion life will, one day, ask of them. YOu have moved me this day and I wish you and everyone in your situation all the best going forward. Thank you, thank you for giving us such a gift. It is truly appreciated and I think you are extraordinary. Kara

      Comment by karaswanson — August 28, 2016 @ 10:09 am | Reply

    • God bless you. You have described the exact situation that I have been living since my husband’s bicycle accident 18 months ago. (He moved out a year ago in almost the exact way you have described.) He is never coming back. He is alive, but he is dead to me. I still think of him everyday and grieve for our relationship. You are so right – others do not see the subtle nuances that made this man my partner. He doesn’t even know that part of himself is gone because he is in a new place with his new thoughts. I too have 3 teenagers that I still have to launch. They see him as “changed” but still Dad and they don’t really understand why he left, nor do they feel the daily pain I have in my heart. I will always love him. The hard part is knowing he is out there, my beautiful husband, but someone else is in his body.

      You are not alone – believe me. Anything else I could write would sound so cliche, I am sorry I do not have the magic words to make it all feel better. If I did I would have used them on myself a long time ago.

      This forum is the best place you could have found for helping yourself to try to come to terms with what has happened and is still such a huge part of your life.

      Comment by Jean — August 28, 2016 @ 12:12 pm | Reply

      • Thank you, Jean. God bless all of you. You are helping a lot of people today. May your kind words and shared pain be returned in goodness and love and light a thousand times. Kara

        Comment by karaswanson — August 28, 2016 @ 2:08 pm

      • I appreciate your responses, Jean and Kara. This has been the hardest experience to go through, because I have felt I am going through it alone. My close friends and family do not understand at all. As you might imagine, I have “googled” all over the place, trying to find answers, understanding (I mean, that I want to understand what happened to my partner, to be able to help him, to get us both through this crisis, to have a grasp on what might be the prognosis, since doctors we have encountered have thrown us entirely off track). I have landed on “stroke survivor” websites, and “cardiac bypass surgery survivor” websites, “caregiver support” websites, “TBI survivor” websites, and all of these have sufficient pieces of the answer that I could put together to get a big picture going (and it is not pretty), but it was not until I landed here, and read everyone’s story, so similar to mine (yet different details), that I finally felt that I am not alone — I finally found the compassion I was seeking. But my heart does weep for all of us going through this — the survivors and the loved ones trying to help and cope and hope and grieve and process all that is happening. My partner was my biggest support of all, always, he was the one I turned to during the occasional times I was having a “bad day” (!!!) and then…. once this crisis hit… oh yes, HE was the one I wanted SO MUCH to turn to. But he wasn’t there. And I needed to be there for him. Of COURSE I was. I love that man. I would have done anything for him, to help him restore and heal. I felt like I had an endless capacity to give. But you know what? I didn’t. I have a limit, oh I wish I didn’t, but I do. And I miss his loving support of me. We were a team, each other’s biggest cheerleaders over the past several years (since we met later in life). I wish I could still be there for him. You know, just as in couples therapy, it is the “relationship” which is the patient rather than the individuals who are part of the couple — I still do think of us as a unit, and in my mind when I think those loving thoughts about him, I send love to both of us — this is hard to explain. But we were both traumatized by this health crisis, both needing compassion. I am now my own compassionate support, since he is no longer there.

        Comment by grieving for him still — August 29, 2016 @ 8:43 am

  50. This blog is what my life has become. I was a single mom of two when I met my husband. I guess I should say spoke instead of met. Why? we never met in person till months later. We talked over the phone for hours. The courtship and conversations were like none other. We would fall asleep on the phone like teenagers. We were not by any means! I was very hesitant to get involved with anyone. I just didn’t trust a strange man around my children. Not only did I fall in love with him but he fell in love with me, and my children. They loved him. He didn’t have children but always said he wanted a family. We were great together. I had been abused as a child repeatedly and have some very deep seeded trust issues. He accepted my woes and strife with open arms. Things were great for two years. We planned our wedding for October 2011. I became Ill and we had to change the date. We decided on Dec 31. On December 26th my husband and daughter were in a car accident. They were delivering a forgotten Christmas present to my autistic nephew. On the way home after dropping it off, a man going 45mph in a mall parking lot went through a stop sign and t-boned my husband in the drivers side door. The man was in a truck. My family was in a Yaris. He went up on two wheels, jumped a curb, two trees impaled him through the windshield in the head and face, then he hit a metal salvation army bin head on. My caught was not injured but my husband was seriously hurt. The police said they pried the door open and he asked if my daughter was OK. They said yes. He passed out. When he finally came home, I was so ready to take care of him. I am a nurse who had worked with tbi patients before. Let me tell you. No amount of my professional experience prepared me for what was coming. My friends told me to run. I was deeply in love with him. I wanted to take care of him. I still wanted to marry him. So we did, on March 24th 2012. In May 2012, he tried to commit suicide after a doctor wrongly prescribed him chantix. He was wading through the stream behind our condo screaming my name. I was at work. The police, state troopers with dogs, and rescue people were looking foir him. The condo unit decided to evict us. This was my home for three years. He moved in with me. Now we are homeless. We move to an apartment that seemed nice. Two months in, new people moved in above us. Now we had roaches, mice, and ants running through our house. We sued the landlord and won. No new landlord would rent to us due to us suing our last one. We were homeless again. September 2012, I’m pregnant. Surprise! I was on birth control. Now we are offered to come and stay with my nephew. I told him no. My family is awful. There is always an ulterior motive with them. He made me go. He didn’t want the baby to be born in a shelter. So we moved in. Big mistake, but I knew that. March2013 we moved in. June 2013 my nephew and niece changed the locks and destroyed our belongings over an unpaid utility bill. My nephew was charging us 300 a month on top of the 330 a month he got from the state for letting us live there. The home belonged to my sister in law that recently passed away. The home was in foreclosure so no rent was being paid. I didn’t find that out till later. My son was born already. He was six weeks early. He still weighed 9lbs 14oz! Healthy boy! They attacked my husband physically. Thge police came and we were foirced to leave. We were homeless again. We moved to my husband homne state. I lklkeft everything and everyone I knew. His parents owned a hokhokme thgthgey rent to us. Great our own home! They were excited. I was scared. His behavior was already quite erratic. Now I had no support and 3 kids and him to take care of. I was very depressed. I began to despise him. He refused to get help. He would talk his way out of the psych unit. He would throw things and call me names. Tell me I was useless. Tell me I didn’t love him. Tell other people I was just hanging around for his lawsuit settlement. I.think I hated him. He became physical. Pushing me and spitting on me. I fought back. He threatened hiuhius father. They called the police. But went and goit him from thgthge hospital. Enablers. Not at all helpful. He tried suicide again. 5months after that attempt we found his dad dead in his home suddenly. He went nuts. He’s an only child too and was cloise to his dad. That was Jan 2014. Things kept getting worse. Nov 2015 pregnant again. Yes on birth control. We hadn’t had sex in over a year. Just one time. I admit, I was livid. No way I wanted to have anothganothger child with this man. I had left and come back many times. He would threatren to kill himself if I didn’t. This past March he threatened to kill me. He has since been out of the home. Court order. I filed for divorce. He has been in couseling. As have I. He has improved and we tried to work on it. Tried. I can’t. I just can’t. Too much has happened. I can’t trust his behavior. I love him more than anyone I have ever been with. But that man is gone. Now I have no one. No friends, no family, no support. He is livid at my deception. He says I lead him on only to break his heart again. I tried. I just can’t. I have nothing left to give.

    Comment by TR — October 3, 2016 @ 11:09 pm | Reply

    • Hi TR…Your letter ended up in my spam bin and I’m just finding it now. Your saga is unimaginable. There are so many elements which would have been devastating just on their own. The totality of your story is shocking to me. Sometimes we can love people but not like them very much. Sometimes loving someone doesn’t mean they are good for us or healthy for us. As you go forward, your past must serve to remind you that you can do anything. You are wildly strong and due for some good stuff coming your way. It’s going to be tough from here to better but start to fantasize, each day, what your ideal looks like, where and with whom. Each day reserve yourself some quiet time amidst the kids and chaos to picture what your future looks like according to you and you will take the steps to get there. You may think you have no one but you have you in your corner and I’d bet on you any day. You have those kids to keep you getting up every morning. You now have a great community cheering for you, as soon as I post this. And you sure have me sending lots of great vibes and well wishes. Please keep us informed on how you are doing. Remind yourself that any relationship that is not serving you and nurturing you and gifting you is one to leave without regret. You deserve better. You deserve to feel safe and peaceful. He has abused you and threatened to kill you. Love him for what you once shared but choose yourself and choose your kids who need a stable, sane, happy parent to pattern after. I’m glad you are both getting therapy. Therapy might start out with us thinking it will fix us when, often, it shows us how we must determine not to return to unhealthy relationships. You know in your heart you deserve better. Keep heading towards better. Every step. None backwards. Keep heading for better. I’m cheering for you. Kara

      Comment by karaswanson — October 11, 2016 @ 7:26 am | Reply

  51. My husband is a severe brain injury survivor but I am still working out how to survive his brain injury almost 6 years on. I am certainly at a cross roads as his lack of insight and that every thought is sadly egotistical and purely about his self gratification ….I find it unbearable. I love who he was but need to work out how our family survives this! Our 6 year old daughter (only a baby when it happens) does not have a relationship with him and is desperate for his love. The man I married would be devastated to see how this is destroying me.

    Comment by Nicola — October 8, 2016 @ 11:09 am | Reply

    • Oh, Nicola….how weary you must be. I can’t even imagine your plight when it includes such a young daughter too. I’m sure you must feel at wit’s end. You say you are at a crossroads and that suggests to me that you are planning for a change. Six years is a long time and no one who knows anything about this rotten injury would ever blame you. We get you. Is there any members of his family that he could start staying with on a regular basis so that you and your daughter could enjoy some “normal” time? Are there any adult activity centers in your area that he could attend on a regular basis so that you could have the house to yourself and work on your own life and your own sanity? I know that, here at my condo complex, there is a condo that houses two young women who have cognitive challenges. They have helpers who come each day to check on them and their families come to pick them up for weekends sometimes. Even if you divorce him, you would want, I’m sure, for him to be in a positive situation. That would give you peace of mind. You have stated that right now it is unbearable. Start with steps that would make it easier on you. A weekend away from him once a month where he stays at his folks’? Maybe work up to every weekend? There’s no way you can continue to do this alone for another forty or fifty years. YOu won’t make it with nothing to look forward to and no one to give you a break. You can start the conversation with him and with his family that you need changes in small measures or they will come in big ones. I’m glad to hear that you are starting to save yourself before nothing is left. Please keep updating us. We are all cheering for you here. We want to help, if we can. Kara

      Comment by karaswanson — October 9, 2016 @ 9:57 am | Reply

  52. I cried the whole time I read this. I thought I was alone and that no one understands what I’m going through. My husband and I were involved in a semi truck accident on June 14, 2016. I broke my pelvis in three places and have permanent nerve pain in my left leg. My husband has a TBI. We r both not working so that I can take care of him. He has hallucinations, angry outbursts, sometimes never sleeps or sleeps too much, he has suicidal thoughts but worst of all he’s almost never happy. One thing I can take away from this experience is that we have never been closer. I will never ever leave my husband. Through everything… I know that we have a strength no relationship has. I probably know more about my husband than a couple married for ten years would know. We are connected on a deeper level and understand each other. He has a brain injury and he does crazy stuff. But I will never not love him any less.

    Comment by trueartistry23 — February 10, 2017 @ 12:17 am | Reply

    • Well,trueartistry23, you sound extraordinary. I’m sorry for the accident which hurt you both so badly. I’m certain your testament will inspire many in your shoes who read this. I wish you both continued windows and doors which open up to new healing for both of you. Best best wishes to you both. Hope you will write back from time to time and let us know how everything is going. We’re all cheering for you both. Kara

      Comment by karaswanson — February 10, 2017 @ 4:53 pm | Reply

  53. My story is a little different. Was only shortly dating a girl when while we were on a weekend trip together at a lake. She and her friend were hit by a drunk boat driver while tubing. I helped as much as I could that day in keeping her alive until medics arrived and they were airlifted out. Both have suffered TBI and slowly regained consciousness. I went to hospital every single day for 5 weeks. Then her family didn’t want me there anymore. Telling me they were worried she wouldn’t recognize me. I would still receive updates and then was told I would receive no updates at all. Been 8 months since accident and 3 months since I have heard a word on how she is doing. I’m sure I will never see her again but I guess I just need help with always wondering how she is and trying to move on with my life.

    Comment by Jeffrey — April 2, 2017 @ 5:51 pm | Reply

    • Hi Jeffrey: I was touched by your story. I’m wondering if you might write a note to the family and ask them to give their daughter a note when it is appropriate saying that you wanted her to know how you went to the hospital every day for five weeks. That you respect her family’s wishes that you allow her to focus now on her recovery. That you wanted her to know you think of her and always wish her well.

      None of this is easy for anyone involved. There are no blueprints when each situation has its own dynamics. You gifted her well. We never know what grand part we are meant to play with people. Perhaps your part was to give her fun and care leading up to and then including the accident crisis. You were there for her and then some. I’m sure this has been horrific for you in so many ways. Perhaps if you can send the note to her family respecting their wishes and requesting that they give her your letter when it is appropriate, you can feel some peace. I’ll bet that, when she’s well enough, she will reach out. I hope she can. Sounds like you are a good man and she has been lucky to have you. I sure wish well for everyone involved. Please drop a line and let us know how it all works out if you hear from her. Best to you. Kara

      Comment by karaswanson — April 4, 2017 @ 7:48 am | Reply

  54. I have never posted to a site like this before (but today I read Debi’s story and had to reply). This is my story. 15 years ago I married a man that I loved that is years older than me. After a lot of tough years of straightening out his life, raising his kids and working every day and putting my time, money and love into this family- he had a stroke (8 months ago). He is left with no use of his right arm, some use of his leg and severe aphasia. He has the mental capacity of an 8 year old. He can do some things for himself, but has no understanding on safety. I have learned recently that he lied to me a lot. I knew of some lies and almost left 6 months before the stroke, but he asked for one more chance. After the stroke his family went from liking me to not speaking to me (they live in the same town), somehow blaming me for what turns out to be genetic and his bad choices (smoking, high blood pressure he didn’t control, etc.) No matter how many times I ask for help they won’t help- not even 30 mins. They say I don’t ask for help, yet I am standing on their door steps crying -telling them I need a break. I work full time and then care for him when I am not at work. The only help I get is from my mom while I am at work and she runs to her car when I come home. He is not very nice to my mom most days. His Dad is retired and lives next door and his kids live within 20 mins. I really don’t understand any of this. His family just keeps saying he is fine and can’t tell me why they haven’t been around for the last 8 months ( I have asked, they actually say- I don’t have a reason). I have been there for everything during this horrible event. I have been to the rehabs and learned every thing I could and he just doesn’t care about doing his rehab or exercises. I have been to the doctors and researched any thing I thought would help him. I have spent all of our savings trying to help him. He only cares about eating and watching t.v. I am so stressed out–I don’t eat. I don’t sleep (even with sleeping pills). I can’t stop crying and I can barely function most days. I am very depressed and I hate every minute of this life. On top of all that stress, I found out that his dad gets to decide what happens to our house (something that happened before we were married and I can’t undo). I am going to go through all of this and end up homeless! I have always done right by him, his kids and his family and now I am being treated so awful. I worked very hard for this life and it has all unraveled because he lied and then had a stroke. I trusted him and I am so angry that he betrayed me. I feel guilty being angry at him because of his condition. I want to leave, but the only option I have is to give up everything, including my job (which is pretty good). I will never be able to stay in this town with all his family and kids. It will ruin my reputation and I know get me fired (they know some people in high positions where I work). I know in this state of mind I could never survive the gossip and I could never be free of any of this. I feel like I am trapped on a sinking ship. I don’t know what to do. I am heart broken and angry. I feel so guilty and overwhelmed. I cannot believe that his family is treating me so badly and that it has all been left on me and my mom. I would have never thought this would be my life. I welcome any advice. Melissa

    Comment by Melissa — April 7, 2017 @ 5:11 pm | Reply

    • Dear Melissa: Your story makes me just sick for you. I can only imagine how unfairly trapped you must feel and how much hopelessness that breeds. I’m so sorry your life has taken such a turn. I know you are terrified to start over but this stroke has already made you start over. If you start over again, it would be with your choices and your power. Often times we just stay because it’s most comfortable. Because huge change is so overwhelming. It sounds like you already know what the next ten, twenty years of your life looks like. If your husband dies, you don’t even have a place to live…
      Sooooooo….My advice is to start your plan. Even if you never leave, just starting a plan and knowing you CAN leave will give you some of your power back. Part of the plan has to do with peace of mind and by that I mean…being able to tell yourself you did everything you could to make the situation work. People will tell themselves whatever they must to ensure they are not the bad guy. I’m sure they are rationalizing their lack of help and participation. I would consider drafting a letter to send to all of them that will make the narrative the same for each and one that you control. Don’t accuse in it. Don’t be angry. Just tell them you wanted to provide them an update on your husband and your situation and ask for their help. You don’t want to lay down ultimatums. This is for you. This is for your peace of mind. Remember that thru each sentence. State in it the ways you have attempted to help your husband without belittling him. Express compassion for him and for them, stating in there that you realize how hard it must be for them to see him this way. Explain that you are trying to enlist their help in providing your husband more broad-based support and engagement so that he can jumpstart another level of healing and wellness. Explain, without blame, how you do not want to get to a point where you are not helping him any longer because you are simply burned out. Explain to them how, in all your research on this topic, everyone suggests strongly that a caregiver be able to have some mental time off so that he/she can stay sharp and helpful to the patient. Pick a day of the week when you would most benefit from some family help and then, in the letter, ask for it. Just a small window. Maybe you ask for them to contact you and arrange for a four hour window every Sunday or whenever is best for you. Ask them to take him out for a meal, to a park, whatever. Then wait. If nobody contacts you, then everyone has the same narrative and everyone will know that nobody helped.They can deny that truth to everyone in that town but not to themselves. Next, begin to figure out your finances if you leave. I know you have a good job there that you don’t want to leave but, if you go to another state where family can help you, begin to look at what that entails. Is your mom going to go? is she part of the picture? Start putting away a dollar or five whenever you can. Leave it for safekeeping with your mom, if that feels right. Finally, focus on your husband. Are there adult daycares in your area that you can send him to so he can socialize and give you a break? Part of his brain damage may have affected his ability to prioritize and choose. If all he does is watch TV and eat all day, try giving him one thing each day that you present as needing help with. Make it small. Make it one thing. Write it down. Make it pleasant. Can you please tighten the loose kitchen cupboard while I’m at work? Or will you please sweep off the patio while I’m at work? One thing. Simple task. No brow-beating if he doesn’t do it. Ask him again tomorrow. Leave a note. Make it about how you need his help. Many times the patient cannot choose out of the thousands of options before him. They also feel so resentful of how they have to be taken care of that they strike out at the very people caring for them. Sometimes patients cannot even remember the first part of the sentence by the time you are done with the last part. If you are going to leave, you want to be able to say you did everything possible so you can reduce the amount of guilt that always comes. In your letter, give them three options of what would help you. Maybe they join you for dinner and then go take him out for a walk or an ice cream after. Small projects for everyone from your husband to his family to see if any progress can be made at all. Powerless comes when we don’t feel we can change anything. You can start changing things right now so you can feel like there is better than this ahead. Have your mom start a savings for you in secret. See how she might be part of an exit strategy if she wants to escape this mess too. Even the narrative by sending the exact same letter to all the players at the same time and make it pleasant and even-tempered. See if they respond. REduce the amount of options for your husband and see if he cannot manage to execute smaller tasks by framing them in a way where he is helping you. Reread that letter over a number of days before sending it. Make sure it does not accuse or scream. Always remember that you are painting the picture of the escape, should you choose it. You will want that picture to show how extensively you tried and how rationally you researched and attempted. See if these options feel right to you and how you might use them to begin an exit strategy that you may use or you may simply enlist as a comfort, knowing you can go if you need to. Please then write back and let me know how it’s going. I’m cheering for you. Kara

      Comment by karaswanson — April 8, 2017 @ 9:10 am | Reply

  55. Kara,
    Thank you for your reply. I have talked with his family and while they acknowledge that I am burdened and overwhelmed, they can’t help. They all work and are busy. They have no compassion for me or for him. His father only wants to talk about the things he did to them in the past; which I have not seen him do anything except try to make up for the past. His dad told me that they have never had any problems…which sounds so strange, because my husband had said different and from all the things his dad said he did to everyone, seems like there are issues. I really don’t know what is wrong with this family. His father almost enjoys seeing me this broken down. At about 2 months in to the stroke, Mike’s daughter needed a place to live with her baby because her husband was in jail and I had to go back to work. I let her stay with us, if she agreed to help. I paid all of her bills and took care of her daughter and Mike while she was at work at night (turns out she wasn’t always at work) and this was after I worked all day. I kept asking her for a break and she would say this weekend and then she would take off and stay gone all weekend. I ended up supporting her and her baby and babysitting all the time. Even taking the baby with me to work sometimes, while she was supposed to be at his rehab with him (turns out she wasn’t there either, she would drop him off and leave). She was using us for a place to live, a babysitter, to get her bills paid and to have a vehicle to drive. I found out that she was also spreading gossip at my work about how she did everything and I was useless. I never asked her for a thing, not to clean, cook or pay for anything. The final straw came when she asked for he husband to move in and I said only if I get a break first. I took 5 days off after dealing with this for months to go to my daughters house and recover -20 hrs away, at the time the only place I had to go, my mom was not here yet (my 2 daughters are military and can’t come home to help, since they used their time when he first had the stroke). While I was gone Mike’s daughter told everyone I quit my job and ran off- so my boss was calling me freaking out that he thought I just took a break, not quit. It was not very relaxing, I ended up so much more stressed out. I was shocked. I told her that they all had to move out. That I couldn’t do this anymore. Mike was mad at me because he was unaware of what she was doing to me. His dad even had the nerve to tell me I ran off and my plans must have fell through- because Mike’s daughter didn’t tell him the truth. I can’t believe her behavior over all of this and when I asked her about it she said she have no idea why they thought any of those things. She watched me cry daily, struggle financially and was fine with taking advantage of me. No when she does call she offers to help and when I say okay, she says not that day I’m busy. I don’t need her drama. I am not sure her kind of help is worth is. The only break I ever get is when I go to work, which is not a break, because I am working. I also cannot afford to have Mike stay at an adult day care or rehab. I make just enough that he qualifies for nothing. If I leave and his family has to insure him (he is currently on mine), he will qualify for programs and/or Medicaid. My mom is only here to help me. She will stop when/if I leave. She has an apartment here and tries to help me in this situation and will leave when I no longer need her help. I do have some money saved and a daughter to live with in another state. It literally means starting over with nothing but a few dollars and maybe my sanity. I am willing to quit my job, move thousands of miles away and start over to not lose my sanity. I am just afraid that something will happen to him. His daughter told me that his family and kids said if I wasn’t here they would help and they don’t right now because I’m there. I am not sure if this is true or another one of her hurtful lies. I really don’t know what I did to these people, but I almost think it’s easier for them to blame me and be in denial about this situation. I do know that a letter to these people would result in doing not one ounce of good.I really think I would be trying to empty the ocean with a thimble. I also really think that my emotional state is not helping Mike at all. I have noticed that Mike is starting to have more bad days and staring off in to space. I am afraid that I am going to be even more stuck if I don’t leave now. I think maybe it would be best for both of us if his family had to step up and help him and manage his money and bills. I think I am worried about being selfish or about being the bad guy. What do you think? Thanks again, Melissa

    Comment by Melissa Parker — April 10, 2017 @ 2:09 pm | Reply

    • Dear Melissa: It sounds like you have already made your decision, really. Sounds like there is guilt and pause but, if one of your reasons for guilt and pause is the fear of what they will say after you, sounds like they have already trashed you and spread their take on the situation. I’m not sure there’s anything more to worry about there. If you leave and they all talk then who cares? You’ll be gone. I know you don’t want to lose a job that pays and start over but, right now, you said you are struggling to pay the bills so it’s not really paying you enough. If your burnout and resentment and frustration cannot be relieved and end up hurting your husband and his chances at some kind of better, then hang on to that if you leave. If he can get better programs and better help without you, hopefully they will try to do that for him. Did I read right that it’s only been eight months since the stroke? That’s not much time and there is hope he can recover more if given the right help. Sounds like they are already trashing you so leaving isn’t going to change that other than you will not have to deal with it anymore. They sound like knuckleheads. It sounds like a lousy situation all around. If you don’t have to sell the house because your husband’s dad owns it, that is one less entanglement. No survivor benefits from being cared for by someone who is resentful and burned out. Without help, any caregiver can fall this way. It’s just a really terrible situation all around. Maybe your mom can move first and get to where you both might start over and you can tie up your loose ends and join her. I know you are worried about being selfish and being the bad guy. To be honest, you will probably always feel guilty on some level. But if you are leaving him with people who will then have to band together and start providing the help you begged for, then you are not leaving him worse off than staying with him as you grow increasingly exhausted, burned out and resentful. Nobody can walk in your shoes or judge you. My brothers and I took care of our dad for nine years, twenty-four/seven, after his strokes. I know how hard it is. You can only get through it if you are surrounded by people who don’t judge because they cannot know and who gift help and compassion for what they must imagine is harder than hard. When resentment builds, there is no helping the patient then. Patients cannot advocate for themselves in most cases. I always suggest that caregivers get out, get help, get time to themselves. In your case, when those attempts have not worked, then you can hang your hat on the fact that you tried to enlist the help. Needing the help is not an issue. It is a fact that nobody can do this alone. Perhaps, if you leave, they will all have to pitch in then and he will benefit from a broader circle of assistance. If you do leave, just get as far away from the gossip mongering as you can. You don’t deserve what they will say. We can only do so much and I’m sure they are happy to not have to deal with it as long as you are holding up the entire fort. Shame on them. My only suggestion here would be to have your plan entirely in place before you share it with them. Faced with the reality that you are leaving, my bet is they will panic and offer to help then. They will blister you with every guilt thing they can, once they know so get your ducks in a row. I’m truly sorry for the whole mess you are in. For both you and Mike. Lord knows nobody wants any of this and it is harder than hard from any angle. I sure wish you all well and healing. Let us know how it goes. Kara

      Comment by karaswanson — April 11, 2017 @ 7:12 am | Reply

  56. Kara,
    Thank you for your honest opinion and thoughts on my situation. Yes, I do think I have made my decision, but I am also crippled by fear of giving up everything I know. I have already stressed my daughters and my mom out with my emotional state. Both my daughters are afraid that something is going to happen to me because I am so stressed, overwhelmed and depressed. I don’t even recognize myself anymore. I am never happy at all. I know 8 months does not seem like a long time and he could still get better- but I think you have to want to get better and work at it. I am tired of begging, crying and humiliating myself to try to get his family to help. I think you are right about what you are saying. It hurts my feelings about what they are saying because it is not true. At one time I would have done anything for Mike and his family (and I did). I decided to leave 6 months before the stroke, I only stayed because my youngest was in boot camp and I didn’t want to upset her and her chances for a career. That was obviously a mistake. Mike actually had the stroke on her first visit home from boot camp and tech school. My daughter told me- you keep putting everyone ahead of yourself and one day you’re going to be so far back in the line you won’t be able to find yourself. Before the stroke I know I should have left. I just feel so sorry for Mike in this situation and so guilty for not wanting to be here anymore. I am resentful about everything that happened before and that is happening now. I try not to blame him and try to remind myself he is in a bad position and needs help. I do get angry sometimes and I try not to take it out on him. I am cautious about what I say to him in the state he is in. Mike only seems to have 3 moods, this weird dazed happy; really, really mad or really sad. I feel like I am walking on eggshells in my own life and at any minute I may snap and go crazy. I think the whole situation comes down to one thing…that I feel like whatever decision I make may decide his life… If I leave, maybe he will get better being around his family and get the help he needs OR maybe he will get worse, get depressed and not survive this. I feel if he gets better that would be great and I did the right thing but if it turns for the worse- it would be my fault for leaving. My mom said this is in God’s hands and I am not God. That whether I stay or go, what is meant to happen will happen and I can’t think any of this is my fault, that I didn’t cause any of this to happen. and she said God will deal with them all for what they are doing. I know that Mike may get better without me here and that is what I want. I want him to have a happy life. In my emotional, sleep deprived state I think I have allowed myself to think the worst about myself and believed that I am a bad person for wanting to leave. I know if I stay I will be even more miserable, resentful and angry at everyone including Mike and myself. I am depressed and hate every day of my life. I can’t even control my emotions when people ask me how I am. I am starting to forget the happy, positive person I used to be. I know that I don’t want to feel this way. I will have to find the person I was before this family and muster all my courage to do what I need to do – Leave! I think I have not looked out for myself since I have been in this family and I allowed all of this to happen to me. I have always made excuses for everything he did and why I allowed it. I think it is time I quit feeling sorry for Mike and myself. I think I need to make sure I survive this, that my life is just as important as his. I think if I stay I will end up stressing myself to death or giving myself a heart attack. Kara, thank you so much and I will do what you suggested and have everything in order before I walk away. I want you to know that hearing someone else (that is not required- like my mom and my daughters) tell me that I need to walk away is a perspective that I needed to hear. That I have tried to do everything I can to help him, tried to get his family involved and that I can’t force any of this. Thank you so much for your insight and compassion on this situation.

    Comment by Melissa Parker — April 11, 2017 @ 12:36 pm | Reply

    • Although I cannot really suggest anything, given that I have so little time with you guys, it makes a huge difference that you were planning on leaving him before this happened. That is key, in my eyes. The other thing that really sticks with me is that it’s only been eight months. I truly believe he can still benefit and improve if given the kind of help you cannot provide. If he is able to enjoy some additional rehab as a result of your leaving, he may still reclaim some functioning. I hope his family investigates this and explores what kind of services he may qualify for in your absence. After only eight months, many are still adjusting medications and, often, just revealing the types of depression and adjustment issues that come with realization. I’m hoping his doctor is still on this and invested. After eight months, I still was not driving and I had yet to go through rehabs to learn to drive again, balance retraining and alternative vocational training. He could still make some great strides! Please, for his sake, as you go, encourage his family to research these for him. Or drop a note to his doctor. It may be your biggest gift to him and one that might alleviate your guilt going forward. I sure wish well for all of you. Kara

      Comment by karaswanson — April 12, 2017 @ 7:46 am | Reply

  57. I was (am?) the girlfriend of a TBI survivor. We had dated/ lived together for 18 months before the injury occurred. After 2 failed marriages, I thought I had finally found the perfect man for me. Then he hit his head.

    When he was in the hospital, his fiercely protective grandmother said all of the right things (I would be involved in his care, etc.) We were in agreement on most of his care. While he was in the hospital, she would visit him every day. I would work during the day, so after work I would drive an hour to the hospital, stay the night with him in his room, and the next morning I would get up and leave from the hospital to go to work, and then home for the evening. I stayed the night with him every other night, so that I could technically see him every day. It killed me the nights I spent at home away from him. While he was in the hospital, his grandmother told me that he could come and stay with her upon being discharged from rehab, and that I could stay and help with his care after work every day.

    His grandmother allowed me to accompany him and her to his Rehab. At some point during his rehab, she decided I could not stay at her place with him after he was discharged. Then she decided I would not be helping him shower; she or her husband would do it.

    I didn’t understand the shift in her support at the time, but months later I would learn that the staff at the Rehab hospital kept telling her that I would leave him eventually. According to her, everyone she spoke with said I would leave. I suppose that many people in my situation would, but I did not want to leave him. I still don’t.

    At Rehab, I started getting a lot of friction from her within a week. When my TBI sweetheart would become disagreeable, I would pull him aside, look him in the eye, and ask him why he didn’t want to do the rehab. He, of course, had memory loss, so he would explain (as best he could with his limited speech) that the rehabilitation wasn’t working, so why bother? I would explain to him how far he had come, and eventually I could convince him to at least participate. My method worked.

    Grandma would just insist he do the work to get better and try to force him do it. The more he fought doing what he needed to do, the more she would push and argue. I once tried to calmly suggest a different approach when she and I were alone, which she responded to with major hostility, and nearly forced me to go home. She said so many mean and hateful things to me while he was in rehab. At one point, she told me I was “disgusting” for allowing him to see me naked, when I changed clothes, as he had the “mind of a child”.

    I stopped trying to help her help him, and instead just treated her with as much kindness and respect as I could muster, so I would not lose my sweetheart.

    Just before he was discharged from Rehab, she let me know that I was only allowed to visit him for 2 hours a day. Then, once he was staying with her, she tried to cut it down to 1 hour a day. On New Years Eve he wanted to see me. She did not understand what he was asking of her. He wanted to come and spend the night at our home, instead of at her home. She could not understand what he was asking, so he got frustrated and tried to hit her.

    I was not allowed to come and visit him that night. I video chatted with him, and he cried and cried and cried.

    Afterwards, I explained to her that I did not appreciate being used to punish him for his bad behavior. She argued that she was not punishing him, she was removing a reward, therefore not rewarding him for bad behavior…which is completely different…?

    She then enlisted back-up from my sweetheart’s sister-in-law. She agreed that not allowing me to visit (thus withholding a reward from him) might help control his outbursts.

    I wanted to scratch their eyes out, quite frankly. Here they sat with their perfectly healthy husbands, and they were punishing (I’m sorry, not rewarding) my TBI sweetheart because he would get frustrated. I wonder how either of them would feel if someone tried to keep them away from their injured spouse?

    As he continued to improve, his hostility towards his grandmother and her husband grew. She did finally allow me to help him shower, as he flat out refused to let her help him any longer. By the end of January, he had convinced her to (reluctantly) let him move back in with me. His injury occurred mid-September.

    Mind you, at that time I had a full time job outside of the home, and was not able to be home to care for him as much as I would have liked. We lived with a roommate who was unemployed at the time, so he was there in case of an emergency. There were a couple of nights I awoke to find him laying on the floor in the living room because he tried to go to the kitchen or to let the cat out and fell. I don’t think he was fully aware of how injured he was. Fortunately I am a light sleeper.

    Grandma has come full circle in this situation, and has apologized several times for the way she treated me during that horrible time in our lives. We are extremely close now. I understand her side: I was just a girlfriend, and would likely jump ship very soon. At least that is what the hospital and rehab staff told her over and over again.

    In her defense, he was her grandson for over 20 years, and my boyfriend for only 18 months. She had raised him. She knew how to get through to him.

    Well…the old him…

    In my defense, I had lost my partner and best friend, and I felt like I had NOBODY during this horrible time in my life. The person I always talked to about the big stuff couldn’t even remember how he met me, how to talk, how to breathe, how to eat….

    I was blessed to find a job working from home, and my sweetheart is getting so much better with time. He is still kind and supportive, which are 2 of my many favorite things about him.

    Because we came into this as a couple, he only gets 1/4 of the financial assistance from SSI that he is qualified for (around $200 per month).

    We are no longer intimate because he lost that ability when he hit his head. It may come back some day. Our relationship is more of a parent/child relationship now than one of a couple, but I really enjoy his company and his personality, so I don’t see any reason to leave. He is still my best friend.

    I explained to the Social Security Administration that we are no longer living together as a married couple, but are living together as roommates/friends. I don’t feel like there is an appropriate label for our relationship. He is not my partner any longer, but I do love him, and he obviously cares deeply for me, even though he has no memory of our relationship prior to the TBI. I am hoping the Social Security Administration will change his relationship to me from “Married” (which we are not, never were, and will likely never be) and will increase his financial benefits as a result so I can actually pay the bills.

    I feel like SO MANY PEOPLE have tried to push us apart. First, his family tried to push us apart. They are fully supportive of our relationship now, but they weren’t in the beginning. Perhaps this is because of the emotional trauma they were experiencing in the situation. Perhaps it is because so many professionals (Hospital staff, Rehab staff) put ideas in their head. Then, the government placed a huge financial burden on me when they labeled us as “Married,” which is crazy – why does a disabled person get so much less financial help if they have someone that loves them??? Furthermore, any new friend I make kindly suggests I leave him because, in their opinion, he does not put in enough effort to recover. They opine that he is not motivated enough. Whatever. I do not complain; I am content with our life. I know that he lost A LOT with this brain injury; I don’t hold his disability against him. I focus on what a great person he is, and how far he has come. They weren’t there; they don’t know what he has been through.

    I feel guilty and have great difficulty watching videos or looking at photos of him from before the accident. I LOVED that guy, and it breaks my heart that I lost him. Then I feel guilty because I LOVE this new version of him too. I don’t want to compare the new him to the old him; I feel like that is unfair to him, and I feel like he does that to himself enough. I try not to even think about that the original, as I am with version 2.0.

    I probably need therapy.

    Comment by Sara — June 1, 2017 @ 4:40 am | Reply

    • Dear Sara: You actually sound very well-balanced and healthy to me :)))) Given the extraordinary chain of events you have been through, it sounds like you are a wonderful advocate and partner for him and a terrific example for his family to learn from and appreciate. When TBI comes to call, loved ones get thrown into a situation that they have no experience to handle well. Mistakes, sometimes horrific ones, are made. You are so well-spoken, I would suggest that you send a very calm but thorough letter to the head of that rehab facility explaining, in great detail, how their sharing of assumptions really endangered your bf and strained all types of family relationships. They need to be retrained and badly. You could do some real good….As for the disabled label, that is a curious one. It might be worth a trip to a disabled attorney. Find one that doesn’t charge until you win your case. He/she might be able to help you get him re-labled for the government’s purposes and, who knows, maybe even get some backpay if they determine he was labled incorrectly. It might require a letter from his doctor and maybe even his rehab place before going to the attorney to start but it’s worth a shot. You may also wish to take advantage of the disability’s willingness to pay caregivers for certain household duties that you now perform for him. Make a detailed, weekly accounting with times and dates, in an easy format. I’m sorry to hear your story but encouraged, as well. You sound extraordinary and your story will give survivors hope that they won’t lose everyone to this dastardly injury. I think there is help out there and an attorney might be a good step, just to see where you’re at legally with caregiving regulations. Please please keep us informed of how it is going. We are a big group here and we are cheering for you. 🙂 Kara

      Comment by karaswanson — June 1, 2017 @ 7:20 am | Reply

  58. I know this is an old blog but it is so true my husband had his accident 5 years ago and it has destroyed us he is 36 and I am 34 we have been together for 17 years with 2 teenage kids he was my best friend we did EVERY thing together we laughed all the time we just loved being together ….. fast foward 5 years and I can’t do it anymore he is mean ,he has cheated a couple times he has gotten physical and we do nothing together he doesn’t listen to anything I say and EVERY thing is my fault it is so bad we no longer sleep in same bed or even speak to eachother ! I am just looking for advise this is my family and I get little bits of the “old” him and keep thinking he will one day come back to me I lost my best friend I can barely look at him now and my heart is broken I planned on growing old with him if someone has been thru this I guess I’m looking for reassurance that I shouldn’t go or it will get better I just don’t know if I can ever love someone like I love him well the “old” him

    Comment by Haley — June 22, 2017 @ 1:35 am | Reply

    • Hi, Haley! Thanks for writing. Your story made me sad. How awful to see such a great life together turn so upside down. I feel for you. It’s heart-breaking. It must be hard as heck to imagine how you would start over on another path. That’s daunting. But it sounds like you two have already started down separate paths with the not talking to each other, separate beds, him cheating, etc. There can be a lot of things going on. He may strike out and cheat to find someone who didn’t know him back before so he isn’t being compared. He may strike out at you because a lot of survivors blame the well loved ones around them for having the audacity to still be well and not understand what they are going through. Whatever his issues, you never should be in a situation where you are being physically attacked in any way. Nobody deserves that and nobody should have to absorb that. It doesn’t help for the kids to see that, either. You all deserve better. My advice in all these cases, and, sadly, there are so many….is to do everything you can so that, if you leave, you do so without any guilt or regret. Had he gotten any counseling for his meanness and anger issues? Would he? Have you? I’m sure you are overwhelmed just keeping the household together. What are the things that bring the “old him” back for glimpses? Is he reacting to losses and is mean because he doesn’t know how to express them? Job, friends, confidence, bread winning….To begin with, I would react calmly to each mean thing by saying, “That’s a mean thing to say. I don’t deserve that,” and walk away. Calm. Stop those moments by giving him a truth he needs to start appreciating. If you can swing it, go to counseling yourself so you have a safe ally to help you through this process if you begin the steps of leaving. Invite and encourage him. Say, “I’m sure you must have so many feelings still of anger and loss from all you’ve been through.” Give him the chance to start taking steps back toward you. There’s not a counselor in the world who would support his being physical or cruel to you. Is the structure of the household contributing? With teenagers, there’s gotta be a lot of noise and chaos. Is he worse then? He may not be able to express his inability to follow when there’s a lot of commotion and his tools to express are just anger. Obviously there are a lot of hurt feelings and broken bridges by this point. For you and for your kids, it’s important that you be able to know you did everything you could and yet stood for being treated well and right. Nobody deserves to be mistreated.Those kids are watching and they will learn what to accept and what not to accept and how to carry yourself in situations of hostility and chaos. Ask your husband if, because of the cheating and abuse, does he want to be off on his own? Does he want you to help him do that? Because, if he’s going to stay, the cheating and abuse cannot stand. period. He has to make the choice and take steps in that direction. He has to decide because you can’t spend a lifetime like this. Please keep writing here. I”m interesting in your story and cheering for you. Kara

      Comment by karaswanson — June 22, 2017 @ 8:09 am | Reply


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