Brain Injury and Divorce
Brain Injury and Divorce
Do you remember the nursery rhyme….Humpty Dumpty?? You know the one where all the king’s horses and all the king’s men couldn’t put Humpty together again?? Well..that’s what I felt about Dan’s brain.
Brain injury is one of those terms that mean “whatever” to “whomever” does the interpreting. It’s one of those diagnosis that can have a stigma with it that evokes fear or pity or an “I don’t want to know” attitude in others. The first time I heard those words were in the hospital a few weeks into Dan’s state of coma back in ’91.
I was standing beside his bed and the Doctor gave me the report. He told me how Dan had suffered 2 contusions to his frontal lobes and 1 contusion to his brain stem. He said how grateful I should be that Dan was alive and how the “least” of my worries was the “Head Injury”. We had rejoiced at the fact that Dan had moved his body which meant his contusion to his brain stem had not left him paralyzed. We had rejoiced that he was breathing again on his own, even with a tracheotomy. We had rejoiced that he would be moved to a rehab center. But, the fear in the pit of my stomach stayed with me…wondering what “TBI or traumatic brain injury” meant.
Dan was in the hospital and Rehab center for 6 months. When he came home, he remembered who we were and his long term was intact, he still had his sense of humor, and could walk…even though he couldn’t walk a straight line. He had made a remarkable recovery and was regaining his strength every day. But, Dan suffered inside. You could not see it. He had sustained a contusion to his frontal lobes that messed with his personality, his state of reality, his ability to remember short term, his self-control, his thought processes,and in turn…his marriage and his family life.
For the next 8 years, Dan was hospitalized several times. There were times when I had to have police take him to the hospital. I watched him suffer “internally” and I could do nothing about it. I tried taking him to the best doctors, hospitals, praying, reading, researching, hoping, and never realizing a cure. The counselors would tell me that 90% of couples divorce after a brain injury. I was appalled at them even suggesting that. There was no way that I would become a statistic.
But, the brain is a mysterious thing. One cannot diagnosis it, treat it, or prognosis it. And yet even more thought wrenching were the questions….”with all the healing…why God… why did you not heal his brain?”
The doctors would prescribe what they called “cocktails”. It was a mixture of drugs, for paranoia, delusions, memory, drugs for side effects from the drugs…it was a circus for years. By this time, people didn’t know how to handle the diagnosis and all it’s complications. Friends began to pull away from us. The church couldn’t put God in a box for this situation. So, they put us in one….the one where you feel like a “leper”. Stay away…for there are no answers. I felt so abandoned. And then Dan began to have delusions about me. His fears became “reality’ to him.
When the “episodes” got so intense and there was violence in my home, I knew that I had to let go. Even though I suffered emotional and physical abuse, I would also face “survivor’s guilt” for moving on. But, I had to leave. My kids needed me and a stable home environment. They needed safety.
Yet, Dan continued to live within his “dark brain injury” alone.
For the past 11 years, I have raised my 3 kids alone. I have suffered loneliness, fear, confusion, and pain deeper than what can be explained. The thing about brain injury and divorce is that the “grief” is hard to resolve. You still have kids together and each life event is to be shared. This is where it was difficult for me. Within these past years, I have still cared for Dan…not like a wife would…but like a friend.
As a family, we would help him…getting an apartment for him, cleaning it, helping him get help, advocating for him, visiting him in hospitals and jails, welcoming him at our family events, encouraging him…and riding the journey of brain injury with him…the ups and the downs.
My kids have loved their dad …and always will. Brain injury and mental illness are not pretty. It can be scary watching a person talk to themselves or swear at others, live in an unkept place, drive a car full of items and trash, talk about a bizarre world, or just “look” different. But, one thing we understand is that “brain injury” does not define Dan. He is still their father, a brother, a son, and a friend.
These past 2 years, ’09-’10, have been very hard for us. You can read about it in my post titled “homeless”. Dan has been missing for over a year. He has not contacted us and we can only imagine him living homeless on the streets somewhere out west. The law protects Dan and his individuality. He cannot be mandated to take medication, accept social security disability, or help. Because of all of his “protected choices”, we have suffered with the discontinuation of any financial disability support for the kids. Our family now faces new challenges of living life and those “moments” without him. It is another unknown pain we face. We continue to search for him and let go. Can you do both?
In the midst…I have found “butterfly moments” of hope and faith and love. These are the moments I hold onto. They give me courage to move daily and see “life” in the midst of pain. My daughter graduated just two weeks ago from MSU.
After the divorce, in ’00, I swore I would never were “gold” again. I exchanged my beautiful diamond gold wedding ring for silver. Silver is for the average person…an affordable jewelry…one that I now love. I look at these rings and am reminded of their meanings….I twirl them on my finger and I panic when I think I might have lost one of them. For some reason, they bring hope to me.
There are 3 separate rings…each printed with words…faith…hope…love.
It’s like.. I am not alone…like God has not left me even though I do not understand him…even though I could not save my marriage or ….save Dan.
I have to believe …I want to believe…I do still believe…in faith…hope..and love.
Butterflyesprit's Blog 
If there’s one thing I know, it is what you say Kathy..”God has not left me”
December 23, 2010 at 10:08 pm
My heart breaks for what you have had to walk through and yet I am rejoicing how God has helped you walk through the last 20 years. Thank you for having the courage to share your story. I will continue to pray for you and your family and for Dan.
January 17, 2011 at 6:14 pm
Cheryl….your smile has always lifted spirits…and your encouragement brings strength…Thank you!
January 17, 2011 at 10:44 pm
Thank you for sharing. My husband filed in December. After a series of head injuries our life has changed slow and steady down hill for several years now. He no longer has the ablity to hide his negative ways and has become an alien in his own home. My children are now adults and are dealing with his abandonment, moving in with another woman her kids.Its a mess BUT the peace that has come to our home is un questionable!!
My Lawyer says he sees this type of thing all the time as I told him about the accidents leading to his mixed up emotions and weird thinking. His refusal of any sort of help. For him its just another case. for me its a head injury out come. frontal center lobe and right frontal.
January 29, 2011 at 8:25 am
Wow. Sounds like a similar difficult experience. I’m so thankful that you have shared with me. I have been hoping to find others who have experienced pain…and be able to talk about it. Sometimes, people do not understand the complexity of head injuries and yes…it is us who live it that truly can relate. I’m encouraged by your blog too! I am new to blogging…so I am excited about learning more. Feel free to email if you ever want to unload. Thanks again for sharing.
January 30, 2011 at 10:37 pm
I appreciate you putting your story out there. My husand suffered a TBI in 1994 and I have been by his side ever since but it has not been easy as you know. We’ve been seperated numerous times but the guilt of leaving him and becoming the statistic has kept me from divorce. But now it has strongly effected our 7 year old beautiful girl. Even though I know he loves her dearly he cannot give her what she needs from a father. He has no patience what so ever, he doesn’t enjoy playing with her – he gets very annoyed and agitated and as you know he says the most awful things. I need so much help but nobody understands what I am going through. His parents turn a blind eye and are in such much denial. They keep saying, “Oh he’s getting better.” Actually he’s getting worse. I’ve had to call the police several times because he starts smashing things, hitting himself and is absolutely out of control at times. We have seen numerous counselors, social workers, psychologists, psychiatrists and neuropsychiatrists but nothing helps. I don’t know if he can help himself but now I find I cannot help him either. I just feel so alone with no support.
February 22, 2011 at 11:41 am
Thanks for sharing. I tried emailing you and couldn’t get through, so, I’m responding on here. Honestly, you are in a tough spot. I would encourage you to continue to see the Dr.’s and don’t be afraid to make “that call” in moments of danger. However, even with the support, you are the one on the battlefield (so to speak). I found that when I accepted the fact that I couldn’t control TBI and the fact that I could only be responsible for me… and for my kids…I felt more in control … and less alone. Being able to invest my energy into my children’s lives was my way of loving…even though I could not love enough to cure the effects of brain injury on our marriage…And, taking care of myself, became the vehicle of strength to carry the load of single parenthood. Feel free to email me at the address on my home screen if you would like to talk more. Thinking of you tonight.
March 1, 2011 at 11:21 pm
Thank you for sharing your story. You must sound like an incredible woman to have survived such a heartbreaking series of events and still managed to raise your kids! I have a similiar story, my husband at the age of 23 was in a car accident 2 1/2 years ago leaving him with brain injury and in a coma for 2 months. He is now at a nursing home after I tried to care for him at home for 3 months and realized I needed an army to care for him. I love him so much but I am aware that the day he had his accident, I lost my husband. So I have somehow morphed from a young wife into a caregiver-still leaning how all of this works.
June 3, 2011 at 6:08 pm
Kristen, I appreciate YOU sharing your story with me! When I started this blog, it was for the purpose of my own healing and to encourage others towards their own healing…and in the process, I have stumbled onto other stories of women in similar circumstances. I have to say there is a feeling of comfort in knowing that I am not alone. I am encouraged by others like you! Morphing is a great word. I believe we have to adapt in order to survive…yet, hold onto who we are. Maybe, that means reinventing our love for that someone. It can still be there…but in a different package.
June 11, 2011 at 2:35 pm
Thank you for your story. I have a similar story to yours. My husband was in a motorcycle accident on Father’s Day of 2007. He had a “miracle” recovery, and I took him home after about 3 months in the hospital. I took care of him for about 2 years while my life fell apart around me. He became very unhappy with me and the children (we have 4) and ended up becoming verbally/mentally abusive and a few times physically abusive. I divorced him and moved on with my life. However, I continue to be his friend and have the children visit him. As soon as the divorce was final, his mother (a woman who he did not care for and did not speak to for years before the accident) manipulated the court and had him deemed a ward of the state. He now lives in a nursing home. This is where my guilt begins. I struggle daily with the fact that I did not stick with him “in sickness and in health”, and I read blogs of other women who quote the Bible and do stick with their husbands. I have lost friends and family members who believe that I was happy with him as long as he was healthy, but left him not wanting to be with someone who is disabled. I am a good person, and I felt like my decision was to raise my children in a loving stable environment or stay with my husband. The 2 options did not fit together as our life was not normal, and my children would most likely grow up mal-adjusted. Anyway, this is the first blog I have read that helped me to feel a bit more “normal”. Thank you for posting your story.
June 27, 2011 at 10:31 am
Wow. My heart goes out to you. I have known the pain and the guilt of it all. Making the decision to provide safety and stability for my kids was a priority as I’m sure it is for you. Sometimes, I think that the before TBI Dan would have wanted the same. That brings me some comfort. Being on the other side of the divorce which was 12 years ago, I can honestly say I did the right thing. My kids are healthy, emotionally and physically secure, and very compassionate towards others. They love their dad so much and continue to have a healthy relationship with him. Boundaries are a good thing. Thanks for sharing. I will keep you in my prayers. Feel free to email me anytime if you’d like.
June 29, 2011 at 5:04 pm
I have found it interesting to read all of the stories and heartbreak around TBI. My husband as well, of 26 years, once a happy, mellow, kind-hearted, giving, loving man suffered an electrical explosion at work which put trauma to his frontal lobe. Within a few months I started noting changes in his behavior, his lack of being able to handle stress, etc… he became very angry, but his outbursts were kept somewhat hidden from myself and the boys. He went through what I woudl describe as a mid-life crisis only he became so angry and distant having an affair with a very much younger woman. He wanted nothing to do with us for 2 years. In this time I filed for divorce, my boys didn’t know what to think, and our grandkids don’t have a grandpa anymore. He sees them rarely and continues to carry out a ‘hate’ campaign if you will, with me. He refuses to speak to me, and blames me continually for it all. He now lives, and is engaged to this woman and has alienated his family. At times I have felt that God had left me and the boys. That he didn’t understand the pain that I had been going through and was convinced that HE would want us back together as a family. His symptoms and behavior is puzzling because he has not severely changed in his personality, just some things. He fought me tooth and nails in the divorce to not help me financially at all, he took my car away from me as I was laid off from my job during this whole event. He put our family dog of 9 years to sleep, and sold everything that was our together on garage sales/ebay. He basically just deserted us after 26 years together. Just ilke that……….walked away.
Not conscience, no guilt, no care in the world. Lives a life of luxury, vacationing, partying (we never did that type of thing before) and forgets we existed!
I continue to pray, but have felt hopeless that things would turn around, and that he would come out of this. It has been very hard to let go of our hopes, our future dreams as o ur adult boys have left home. We had so much we wanted to do when we got older. I have not met anyone since my divorce in 2009. I do hope God has someone for me so that I can enjoy life and a love again. it is very lonely for me. I have done all I can, and I am our boys/grandkids’ most stable person in their lives. Thank you for your helpful site!
August 7, 2011 at 12:03 am
I am so sorry for your loss, your own pain, and what you and your family have endured. I can feel it right now. In some way, we have found each other. A common challenge and mountain to climb. Thank you so much for sharing your story with me. It still amazes me that there are others who have been through such similar experiences. We do need each other. I look forward to hearing the good things that come in your life as I share those new dreams too. Thanks again.
September 17, 2011 at 3:23 pm
I too, am a wife of a brain injured spouse after a motorcycle accident. I can relate to each and every description of the verbal and emotional abuse, irrational thinking, refusal to get help, medications, etc. When my children would literally come home from school and hide from their father, I realized there was no other choice but to separate. We all knew the head injury was to blame, but it became unbearable and very unhealthy. I think I pursued every avenue available to find help. I tried to keep a connection between my husband and kids, but unfortunately, his verbal abuse has continued and they want nothing to do with him. Currently, I am going through a divorce and struggle with the idea that I don’t want to be divorced! My husband feels justified to have new women in his life, a side of him I’ve never seen before. I cannot continue to be the only person left in our marriage. How do you deal with the loss? I hate to say it but I think my daughters and I are the victims, and my husband feels no remorse whatsoever. He has regressed into a teenager who parties to self-medicate and makes very poor decisions, even losing his job due to his anger. Any words of encouragement or wisdom are welcome!
September 10, 2011 at 7:11 pm
Wow. I am hearing what you are going through and I can sense your pain. Know that you are not alone. I have found many other women who have suffered like us and am amazed at how they are finding this site…we are resourceful women. We know how to look for help, support, and solutions! What a question…how do I deal with the loss? Everyone deals with it differently. For me, I found my strength in my writing by venting my fears and pain. I found release in my dancing and creative energy outlet in my photography. I just shoot with my camera and then look back at what I’ve taken and am intrigued by what the pics say to me. And I pray…everyone has to find that spiritual core and hold onto it. Of course, I love counseling and have enjoyed the time to just talk with someone. She has helped me to focus on solutions and not just the problem. I am learning to be a survivor…not a victim. It is a process that we must trust. Just think…that butterfly that emerges from you is in the process of being created. That is encouraging.
September 17, 2011 at 3:35 pm
Your story was encouraging to me today. My husband received a TBI 9 years ago, a few weeks before our son was born. We just recently separated. There is more guilt than humanly phathomable. It is hard to describe such ambiguous loss. Very few people understand and I have such a hard time articulating the cognitive changes. Sometimes they are subtle other times profound. How do you explain conversations with broken logic? When things almost make sense but something is a miss that reminds you that the logic cannot be trusted. I feel like he exists in a world that I cannot reach and I in one that he will never be able to rejoin – each of us silently co-existing. My son does not understand why I can’t just see that “dad is the same person” and doesn’t understand why I’m breaking up the family. How do you explain brain injury to a child? Brain injury is so complex. There will always be more questions than anwsers. I too have been nearly crushed by my faith. I’m hanging by a thread – trying to learn to live again. Thank you for sharing your story. There is comfort in sharing with those who have walked the same journey because when words are few – the understanding can be great.
January 9, 2012 at 12:29 pm
The broken logic is a good way of putting it. The brain seems to be reconnecting and then a spark triggers a random response. I came home from work one day to find my windows nailed shut. He feared I was leaving at night through a window. Senseless. For him and for me…Yes, I believe it is normal for your child to react like that. Your experience is yours and your children’s experience is theirs to own. I always encouraged and supported my kids and their relationship with their dad. It was good for them to see him as “dad” and nothing else. I could handle the TBI for them. As they have grown up, they have come to accept the limitations and understand more…I pray for you as you continue on your path. Find life for you and your son…it is there.
January 21, 2012 at 1:29 pm
Hi, I am new to your blog, having discovered it yesterday while googling “divorce and brain injury.” My husband has had TBI since a high-speed MVA in 2006. Our world went off the tracks. I tried so hard to keep our family together and as “normal” as possible. I surrendered in September, filing for divorce after the police removed my husband from our home. He had become so violent and abusive, we were all frightened.
I never called the police before or told anyone because his PCP and neurologists said his outbursts were part of “the condition,” so I thought my young son and I just had to learn to tolerate them. A neighbor and friend contacted the police. (The neighbor had known about his abusive tendencies all along and said she always worried for us.)
I felt terrible. A police woman kept assuring me that our family did not have to put up with his abuse just because he has TBI. A strict restraining order is now in place and he is staying with a relative of his.
Our first divorce hearing was last week and, while I know it is the right thing, I am having a hard time accepting all this. Sometimes I blame myself for so much going wrong, not being able to handle the cards I was dealt, etc. it is a tough subject to talk about, especially as you and the others on this blog are the first people who seem to understand how our lives have changed over these past six years.
You are so brave to go public with your story. I don’t feel so all alone and you are providing me with some hope and courage. i am afraid going forward, but I plan to keep checking back here to read your poems, your entries and the posts by the others who are going through the same horrible thing.
Thank you for sharing your story and bringing so many of us together. xo
January 19, 2012 at 5:31 pm
Wow! I am so glad you found my blog! I am amazed at how many suffer silently. And yes…going public requires courage! Many times I have feared I said too much and wanted to delete a post. But, it has been the most raw authentic words that have brought people to feel safe to share with me. I thank you for your courage! My divorce was precipitated by violence too. Same advice for years from my Dr.s. But, they didn’t walk in my shoes. There are some challenges that take professional intervention and I realized I had to let go of the unrealistic expectation others had for me. Yes, I was a supportive loving wife, provider financially, mother of 3, friend, and just me. I can feel good for that. Now, it has been over 12 years since the divorce and even the professionals struggled to help. He has been in and out of hospitals, the judicial system, and homeless. So, I am at peace for my choice to focus on stability for my children and myself. That is something I could affect positively. I still struggle with “survivors guilt” and try to do what I can for him. He’s currently in adult foster care with a state appointed guardian. That has helped to get him the care and reconnect him with our kids. Quality of life…big debate…big questions…purpose..all those continue to swarm in my head. But, looking back, I do not regret my choice. There was lots of life lived in our home…and that could only have happened through my courage. Keep believing and hold strong to a faith…
January 21, 2012 at 1:52 pm
OMG How I have longed for one person who could understand. I have read this blog with tears flowing for all of us.My husband had a brain anyrism in 2002,stroke, spinal menningitis and other complications followed. I have been considering leaving for years. The guilt and shame have eatin me alive. I have felt like such a failure. I have two daughters, I thought it more important they have a father,than anything else. they are 20 and 15 now ,and I wonder how much damage I have done by staying this long. I just want s o bad to be happy and free of guilt and constant bickering, rebelion,and resentment from a stranger that occupies my husbands body.The isolation and fragmented coversation makes feel as if I will lose my mind. Thank you so much for sharing your life each and everyone of you are such precious, courages women, to have lived through this, with this,and then shared this.
June 25, 2012 at 6:40 pm
Welp…Story never changes. but in my case, I am staying married. To the man that repulses me. To the father of my little son and step father to my adult children. To the man who was abusive and hooked on drugs BEFORE his head injury. To the man who was 2 weeks away from trial for our legal separation. To the man who knows he’s married to me but only knows my first name. To the man who knows some of his children, some of the time. To the burden. To the one whose entire history has been erased.
3 years ago, my husband fell from a roof and suffered a catastrophic brain injury. My story is the same in many instances. I am a single mother with 3 children. 1 in college, 1 a Senior in highschool and a 7 yr old. My husband was on life support 17 days, full blown coma for 5 weeks and technical coma for 3 months. I live in Tucson and he was in the hospital and rehab in Phoenix. 2 hrs away. I have never left his side through his recovery. He now resides in a brain injury group home still in Phoenix. I take care of him, from another city, work full time and raise our 3 children. He recovered physically. Listed in the miracle category for that. However, has no short term nor long term memory. Can’t remember anything accept some of our names and relations.
I’ve reached down deeper than I ever thought possible and have completed all the everyday tasks I’m stuck with alone, with grace and elegance. I’ve had to spend $20,000 to obtain guardianship due to the fact that my mother in law contested it. She felt I had put him into an institution and thrown away the key. I must have…….I’ve taken over $30,000 of non-paid time from my job to take care of him. I’ve spent countless hours on the road back and forth from city to city. I’ve given up the last 3 years of my life to take care of a son of a bitch that treated me like shit and now is sappy and begs me to take him home.
The sorry truth is that I’m staying married for financial reasons. I receive his workman’s comp and social security. If I divorce him, I have nothing to raise my son with. I’ve faced the reality of this and there isn’t any real clear cut rules that lay out this situation in the bible. As my Pastor says “I think this is between you and God”. I figure that if He wants me to be with someone, then he’ll put someone in my life. I’m 48 and not looking to marry, but desperately miss having someone to make and share memories with.
Having said all this, it’s pretty much a buzz kill trying to meet men. To lie or not to lie.
February 19, 2012 at 12:29 am
I am so glad to hear you say it like it is. This is a place, a safe place to talk about these tough issues. Yes. I can feel your pain. I can relate to the anger. I can see your strength. The fact that you choose to step up and carry the load, fight for guardianship, and visit him shows character. You didn’t run away from it…you ran with it. Someone told me that it is harder to paddle upstream and fight against the current. By choosing to go with the current, you can steer your “kayak” where you want to. It sounds like you are moving with the current, accepting, and doing the best you can. Maybe, now you can steer it where you want to go. What are your goals? What can you do to refuel? What new dreams can you envision. You are valuable. Thanks for sharing!
March 17, 2013 at 1:50 pm
Thank you so much for your blog! I am planning to divorce my husband of almost 23 years. His TBI was 5 years ago at work. He never had follow-up care after the initial emergency care. He closed his L&I claim 3 years ago thinking he was fine because he survived.
Last summer his verbal abuse was so out of control I threatened to leave him if he didn’t get an assessment from a TBI clinic (a suggestion from my son’s counselor).
Frontal lobe damage was confirmed and he started therapy with a team of doctors, who filed to reopen his L&I claim. He was fired New Year’s Eve after 18 years for his mistakes on the job, so now we don’t have medical coverage. Until L&I decides to cover him, he can’t get treatment.
He is trying really hard to control his behavior, (which is obvious, unfortunately)so I feel guilty for wanting to divorce him. But, he is not the man he was before. Our kids and I feel more like a parent to him. He doesn’t realize (as far as he will admit) that he is so different, beyond getting distracted.
We share memories, a history, but I love him more as a friend now than a wife. I’m planning to wait until he has a solid support system before I tell him. I am so afraid he will be so hurt, will use guilt that he’s been “good”, and not understand why I want a divorce when he’s been trying so hard. Any advice?
April 7, 2012 at 12:37 pm
I am so thankful I have found somebody who understands.. My life is broken up into 2 differrent parts, BTA (before the accident) and ATA (after the accident). Married now for 25 years next month, about 4 years ago my husband sustained a traumatic brain injury on a bike. We are big into biking and we were out in nowhere when it happened. Although we always wore helmets, it did not matter. He flipped off his bike at a high speed and sustained several fractures, broken bones, contusions and cerebral bleeds. His frontal lobe was damaged and little did I know what a TBI would involve. Thankful he was not paralyzed, he was in a rehabilitation unit for a while. He had to learn to eat, drink, walk, talk all over. This recovery went rather fast, it was the emotional recovery that nobody told me about. What was once a gentle man, kind and loving, became full of anger and temper tantrums towards mostly myself. I cannot explain this, it was like he woke up from being intubated and in a coma to almost hating me and having something against me. At the same time of the accident, I lost my mother. I had been her caregiver since my father had passed a few years earlier.
The next few years have been so difficult. His outbursts and violence intensified. He moved in and out several times, would be gone for months at a time and then come back home. About 16 months ago he filed for a divorce and we have been in a bitter battle since. He took every bit of money we had on this divorce and not SEEING his injuires a divorce attorney was only too happy to take it. I have spent all my money and effort to keep the divorce from proceeding. I cannot explain it but I always want to forgive the violence and assults and think this will get back to “normal” again but they just never do.
Gone is the dream home we shared with our 5 daughters, 3 of which are still at home. I went from having to work for fun to now trying to budget and optimize my hours with full time employment. I try to not get caught up in what we have lost but I am overcome with hurt and anger. If we had only not gone biking that one December day. The if only….
I too have learned how to pump gas, he always took care of that, mow a yard, paint and pump air into my tires. Paying bills on line has been a new experience for me. Why was I only told his tastebuds might change, why was I not warned of what could possibly happen, I have all the emotions, hurt, anger, resentment, loneliness and thinking that starting over late 40s is just not where I am suppose to be.
It is hard to live in fear of the what if, what is on the other side for me and the girls, what if we stay together, he will leave and become violent again I have seen rage and it is not pretty. I am paralyzed by my fear and without much of a support group, I appreciate all of you who have blogged about this and were willing to share!!!
July 21, 2012 at 9:40 am
I am amazed and humbled by what I have read in the stories all have shared on this blog. I lost the wonderful husband I knew to a frontal lobe brain injury in 2009 followed by a motorcycle accident. We were very happily married for 27 years and he was so kind, gentle, smart, funny, successful and athletic and the most incredible husband and very involved father to our two beautiful daughters. That all changed drastically after the accident and he became very detached, hostile, illogical, combative, sarcastic and began making very bad decisions. He immediately separated our once joint checking account believing that I had been hoarding money from him our entire marriage and accused me of having extra marital affairs! Both were obviously untrue but in his mind, he really believed it. He refused treatment after he was diagnosed by a top Neuropsychologist even after my daughters and I begged him. He withheld money from me and I struggled to pay the bills. His sales job took him away for three nights a week and he began living with a wealthy woman and her two daughters just four months after the accident and we had no idea until months later. His behavior got worse and worse and he would not listen to reason. He also made no apologies or explanations for his behavior and has no remorse at all. I divorced him in 2011 after a bitter battle. In the midst of the divorce, I lost my job with further complicated the financial struggles we were experiencing. The grief I have experienced is profoundly sad and yes, very hard to resolve. I lost my best friend, my mate, 32 years of history and I still have moments where I still can’t believe what has happened. While struggling with the grief, I had to find a new job and comfort my two daughters who were dealing with their loss as well. I now have to sell the beautiful home we built and decorated together. He left me and my daughters struggling and proceeded to take luxury vacations with his new “family”. They purchased a mercedes for him and he now wears designer clothes which is so out of character for him. His once very successful sales career is rapidly declining. He has been totally non compliant with the agreements in the divorce decree and has lied time and time again. One of the saddest things for me is his once beautiful smile is gone and has been replaced with a flat, far away look in his eyes. He looks right through me now. He is gone on every sense of the word and is not coming back. To say it has been a nightmare is an understatement! During my journey through this tragedy, I have also experienced butterfly moments of hope, love and faith and I too, hold onto them. We’ve continued to celebrate all of the wonderful occasions in life as a family and are moving on day by day. Thank you for this wonderful blog. It was very comforting to read similar stories and I pray for every victim of brain injury, their spouses and children. I am certain that we will all prevail, recover and experience love, joy and most of all peace in our lives again. The key to getting there is acceptance of our circumstances and to look back with gratitude on what we once had.
January 5, 2013 at 8:17 am
I enjoyed reading your story. Thank you for sharing. You definitely have a positive attitude while still feeling the raw emotions of your loss. I am so sorry for you and all of us who learn to accept a loss that comes with complicated grief. Seeing your husband as a different person, moving on with someone else, abandoning you and your kids…what I think makes it that much more tough. I saw the same in my situation. The mistrust, the accusations, the abuse. It was a very scary time which has affected me in ways that I continue to address. Yet, the acceptance like you shared is key to opening the door to new dreams, new hopes, and what I’ve found..a humility in knowing that I don’t control life. There is freedom in that. Keep on keeping on!
March 17, 2013 at 2:12 pm
First off I am so emotional right now, because I found other people who are or were going through things that I am going through right now. My husband was in a motorcycle accident in Oct 2012. He was diagnosed with TBI after many surgeries on his head. He was not wearing his helmet, he gave it to him passenger who survived the accident and is perfectly fine. In Nov he was transferred to Rehab and he came home in Dec. Every doctor we meet tells him how lucky he is, how he is a walking miracle. I feel differently. He is different. He use to love being with the kids, now he yells and pinches them. I tell him to leave and then I feel guilty. I feel so, I can’t even think of the word. I don’t want to say I feel sorry for him, but it’s something like that. I have realized that I have taken his verbal and mental abuse, but now that he is acting out on the kids I can’t allow that. I had his case manager refer him to Behavioral Health and that was useless. He went in and answered everything correctly, came home yelled at me, called me every name imaginable and went back to yelling at the kids. I can’t feel bad for him anymore. I need to think of my children. I am ready for divorce. I have not been married for as long as others who have been posting. We have been together for 8 years and married for 4, but there comes a time when you open your eyes and this is my time. I read somewhere that when someone is diagnosed with TBI you need to mourn the death of the old person and welcome the new person that emerges after. I didn’t want to accept this, but now it seems it’s time. I hope someday soon I am able to have the strength to make it through the difficult road I have ahead of me and be on my own as so many others have. Thank you all for helping me understand that I am not alone, that I am not the only person who lost someone to a TBI.
January 23, 2013 at 4:14 pm
Wow. To think that you are right in the midst of the hardest time of a TBI. Makes me say…I am right there with you!! Be emotional. Go for a drive by yourself. Write. Go through old photos. Be in the moment. It’s an important part of recovery and accepting the reality of a TBI. I have come to understand and appreciate that each brain injury is different. Some are more extreme than others. Yes, some may say mourn the loss and welcome the new person. It may work with them. I hope it does. But for me, looking back…it was too much for a spouse to carry. To expect the two to go together? Really? Mourn who has died and then be expected to go home with someone who looks the same yet is a stranger in your bed. Marriage is intimacy and trust. By giving up our safety zone, we endanger ourselves emotionally and our children too. Until the medical community can treat brain injury with medications/therapy that prevent outbursts caused by frontal lobe injuries, spouses will continue to divorce in order to protect the family that is in survival mode too. That’s enough for my soap box! Please know that I am with you…thanks for sharing.
March 17, 2013 at 2:33 pm
Hi Vanessa! I just read your story and I know exactly how you are feeling. You eventually think there is something wrong with you. I have been married for 30 years and my husband suffered TBI in 1999 (14 years ago) and I thought the situation will change but it is becoming worse. Now its time to move on …. we only have one LIFE and is all the sadness, un-happiness, ill-health and sadness worth it?
June 19, 2013 at 9:52 am
THANK YOU.
January 25, 2013 at 3:13 am
I documented above my story, we divorced and his addiction to me has never gone away. A few months removed from the divorce, he says he is better and he is healed, he is no longer hostile, angry and the sexual aggression is gone away. He wants back and wants to remarry me. Divorce was so hard, something so painful I never imagined. I always love him and wonder why do I want this and yes I am considering this. He says he cannot move on with anyone else, I have tried and find it difficult. Am I just too emotional to see?
March 24, 2013 at 2:04 pm
I found your blog this afternoon as I’m sitting here at work thinking of my boyfriend. He was in an accident several weeks ago and is now medically stable, although he is not talking or responding to commands yet. He is moving wildly. So much to be thankful for at this point. He will start passive therapy soon and be moved to rehab sometime this week. I know I should be focused on his recovery, how HE will recover. Focus on getting him up and active, back to caring for himself, if it is possible. The doctors say he will be able to walk in a few months and return home this year. But my biggest fear is that he will be different. That he will not be the man that loved me, that showed me more than any other man I’ve been with. The man that I love. I am heartbroken. I feel guilty because, before everything else, I hope that he will want me after all is said and done. It is selfish. I’ve read so much about how the personality changes, even when the body is healed. We worked so hard to overcome issues in our relationship and were finally on the right track. Will he hate me? Will he hate his family? Will he abandon us.. me? It is all wait and see. I try to stay positive when talking to everyone, updating them on what new thing he is doing today and positive notes from the doctors. But inside I’m filled with trepidation. Am I about to embark on what might be the hardest journey of my life with a man I so desperately love only to be hated and torn apart years from now by that person? I cannot turn away now. I can’t. I can only hold on. I cried reading all of the previous posts. It makes me sad to know it is likely. But I also see hope here for others that have been through much more. Thank you everyone for your posts. I hope that all of us can find a balance in our future lives.
April 1, 2013 at 3:28 pm
Precious.
November 29, 2015 at 10:14 pm
Wow I have jsut come across your blog and I am absolutely relieved to know that I am not alone in this world. I have not read the entire blog, because I have 2 kids, aged 5 and 2 who are very demanding and interupt me all the time, because I am now a single mom after my husband contracted bacterial pneumococcal meningitis in June 2011 and suffered epilpesy which resulted in his brain damage. Never ever did we know what the road ahead would be like. We were just happy that he survived as my baby was 10months old when her dad got sick. From 8 weeks in ICU my husband was transferred to rehabillitation centre where he learnt how to walk, talk and eat again. He was discharged in Sept 2011 and came home to us. What a nightmare, he did not recognize the house, he kept wanting to leave and go to work, kept thinking he woke up in a different place, kept asking why I was at work at 2 in the morning when it was 2 in the afternoon even though I explained the sun was out and it was daytime not evening. He packed cupboards and did silly things.Then the agression kicked in and it was aimed at our then 4 year old son. My poor child was so traumatized and told his play therapist he has a “new daddy”. My husband would lash out at the kids and me. Later the agression against me turned into pysical violence and he almost killed us by pulling up the handbrake on the car while I was driving causing it to spin, Then he was arrested at the airport on our way home after the nightmare family holiday for hitting and pushing me. I left him at the airport to spare my kids the trauma and was “crucified” for it by my mother in law and accused of not giving my husband his medication. The agression became worse and again and again he lashed out, towards my mother in law, his sister etc. He eventually moved in with my mother in law because it became too much for me and the kids. The last incident when he came to the house and asked me for his bank card which we had to remove because he was impulsively drawing money all the time, he slapped me through the face, pushed me around and grabbed my by my hair and hit my face into the cupboard. I am scared of him and cannot trust him anymore. I try and focus on my work and keeping myself and the kids sane.
My husband died in hospital and I don’t know this stranger. Its heartbreaking and especially for my kids who will never know their dad like I have. I also know he would have wanted his kids to have the best life.
April 26, 2013 at 3:37 pm
You are not alone. Keep making the tough choices. You are strong.
November 29, 2015 at 10:15 pm
Understand completely! Even those traumatic rings.. Give thanks and travel the road.
May 16, 2013 at 10:46 am
We seem to have a similar experience. Mine being a little different that since 1999 I have been trying to deal with this situation alone and has seen the traumatic effects it has had on my children (who are now adults). I have never felt so much sadness, un-happiness and ill health and now I have a granddaughter and my promise is not for her to be traumitized and now I have to get out. No-one knows the difficulty and effects it has on the family when dealing with someone like this and it is the least to say, traumatic!
June 19, 2013 at 9:30 am
Wow, I am amazed by these stories. I am amazed because I am living this very same nightmare. My husband was severely burned in 2004 and because of complications from the injury he was overdosed on blood thinners. The internal bleeding caused him to be deprived of oxygen, hypoxia. He went to a neurological rehab specializing in TBI. When he was discharged from the rehab their recommendation was a nursing home. I refused and took him home. He was unable to walk and had to wear diapers. I cared for him in this condition for about 9 months, while working nights at the hospital, and caring for our 5 & 10 yr old sons. About a year after he came home his irrational, paranoid behavior began. I have been accused of cheating and stealing his money. His verbal abuse is outrageous. Prior to the accident he was kind, funny, the best dad around, and my best friend. We were married for 10 yrs before his accident and another nine years since his accident. He has moved out a few times but always acts nice and changed begging go come home. The reason I haven’t divorced him is the guilt. My now 19 yr old son won’t even speak to him and he lives at home with us. My 14 yr old only really remembers his dad this way so he’ tolerates it a little more. I know my children are suffering because of this environment. I am torn because my in-laws have not been around at ALL for his recovery so I am afraid he won’t get proper care. My in-laws,who live in the same town as us, only call him once a month to say things like why do you have to contribute to the bills since you only get social security. They are not mentally healthy people either. I know something has to give but I’m just so sad and I miss my husband and best friend! One of the hardest things is when people say how lucky we are that he survived. They don’t understand my husband didn’t survive. I didn’t get a mourning period, instead I was supposed to be overjoyed that he was alive. There haven’t been many days I have been overjoyed about anything. Thank you for sharing your story and helping us all to not feel alone..
June 30, 2013 at 2:43 pm
You’re right. People say the most ridiculous things. They don’t know what to say. But, we know better. Tough choices. Tough life. Keep taking care of that which you can control! In the end, that’s all we are responsible for.
November 29, 2015 at 10:17 pm
I’m just sitting here crying. These stories are my story with different characters. Like you all I loved and loved until it was unhealthy for me. His erratic behavior with money, his distrust of me. At the end he accused me of not feedng him. Get real! His addictions he had before his car accident became worse. Hiding alcohol, hiding money, making decisions like a teenager some days, and as a man on his good days.
It was hard on the good days because I knew it (the good mood) was going to end. He loves me one day and tells me I’m terrible for leaving him the next.
Today I got temporary sole physical custody of our 4 children. Its not always fun to win. They love their dad, and wish he never had his accident or brain surgery. I swear I can’t see a future, but reading your stories makes me see there are more “me’s”.
July 10, 2013 at 8:33 pm
what an emotional rollercoaster which i can relate to. m partner suffered a severe brain injury in 2008 with frontal lobe damage and contusions. even though he loved our children his lack of patience aggression and verbal abuse is taking its toll we havent had much assistance since 2010. my eldest is now 12 and i can see the effect its having on him tonight i have gone to his doctor to plee for help in a last plee to save my family
July 23, 2013 at 5:14 pm
Reading this brings back so many emotions I’ve kept buried for so long. My mother suffered a stroke when I was around 12 years old and was left with pretty severe brain damage. It was a terrible experience having to grow up with a mom, someone who’s supposed to be a loving and caring figure, who was more of a monster to me than anything else. I’m 20 years old now, my parents are divorced, and it’s rough seeing my own mother on her own- and even scarier is how little sympathy I feel towards her. People don’t realize when someone “recovers” from something and is diagnosed with brain damage, it is not a miracle. If anything it’s a curse, morphing a person that you once loved into an insane, angry, abusive, shell of the being that they once were. It has left me with broken and damaged parts of myself that I know will never heal, but being able to connect with someone who has experienced the same pains is always comforting. Thank you so much for sharing. God bless.
September 11, 2013 at 6:49 pm
I’m so sorry you have gone thru this painful experience! People do say the rudest things.. But all in ignorance. They have no idea what we deal with. May peace find you this season.
November 29, 2015 at 10:21 pm
I found your blog after looking up TBI and divorce to see and read what others are going through and I can’t stop crying right now. I hurt so badly after reading what everyone has gone through. The pain, the guilt the horrible emotion. It’s awful! I met my husband in 2004, and learned he was a TBI survivor. He sustained a motorcycle accident in 1990 and I immediately began reading about TBI’s and survivors and coping and learned everything I could. We’ve been married for 10 years now. Happily married. He is my best friend, my partner, my lover and I’m also yes his caregiver but do my best to support and make way for him to explore his independence, and family life.
Most days are good. We have two sons. One 7 year old together and one 15 year old, my son from a previous marriage. My son was 4 years old when I met and married my husband. For the most part my husband has been wonderful, there have been times when anger got in the way as my oldest was growing up. But we always worked through it and always communicated our needs, wants, fears, feelings, what’s right and wrong. I know it sounds bad, but like teaching a young child, I have to remind my husband what’s inappropriate what’s not.
In the past two months I’ve suddenly noticed a switch in my husband. He’s unhappy it seems. He is upset more. And he’s begun fighting with our teenager. Today took the cake. He was outside talking to me, happy, and then went inside and all hell broke loose. He got in our sons face, grabbed him, was trying to get physical. My son told him firmly back the hell off, but he refused to listen, he just raged (my husband) unlike anything I’ve ever seen before. It was extremely scary and upsetting for the entire family, including my son’s girlfriend who was here.
My husband went to calm down, he fell asleep. He woke up after I fed the kids. My eyes were almost shut from crying so much because I felt so helpless. I sat down to talk to him about what happened, and he didn’t remember any of it.
I lived in an abusive relationship for 12 years before meeting my husband. He has taught me how to value myself. How to be a better person, how to love myself. The thought of having to go through this more and more, having to call the cops on him, I couldn’t bare it. He’s my husband and I love him. But I also do not think having a brain injury excuses his behavior but I don’t know what to do. On top of it all our youngest (son) was born with mild cerebral palsy, sensory disorder and bipolar disorder.
I’m so tired. LOL
What makes all this hard is I feel I can’t tell anyone. I can’t talk to anyone. Nobody understands brain injuries. They don’t understand the frustration someone goes through forgetting, not being connected to their feelings, not remembering day to day. Being trapped in what is a good body but a bad brain that has no control.
March 5, 2014 at 11:44 pm
Wow! You have got to be one strong woman. To be raising kids and taking care of your husband. I can hear your strength and desire to love. And. I can hear your exhaustion. The need to parent your child and keep your kids safe must be your number 1 priority. Your husband needs professional help. It’s hard to accept that TBI is uncontrollable with love. It just takes more support than what we can give. I had to call the police on several occasions. They understood he was head injured and they took him to the hospital for help. It was traumatic for me, but I couldn’t handle his rage and I definately didn’t want my children dealing with it. Your kids need you and YOU need YOU. Know that you are not alone!
March 22, 2014 at 8:14 am
So glad I found your blog. I too, am married to someone with a TBI. My husband’s TBI is a result of a automobile accident in 1994. I did not know him then. We were married in 2007, so I went into this relationship knowing he had a TBI. Things have never been normal, but things have gotten worse. Over the last 2 years, he has been accusing me of having affairs, (which I’m not) and has even gone so far as to confront the people he says I’m having the affair with. Also, one day I was getting ready and I heard something at the window and I looked out and it was him messing with the window from the outside. I asked him what he was doing & he said he was checking the window, because he knew the neighbor had been coming in to sleep with me after he’d go to work. A week ago, he accused me again of having an affair & let me know this by text while I was at work. When I got home that afternoon from work, my 4 year old daughter came to me and said “daddy said you have a boyfriend”. This is where I lost it. I told him to leave & he refused to leave and started trying to act nice & said he was just joking. I left very upset & went to my parents house and called his sister to come get him out of the house. It’s been a week now and he is still out of the house, but he comes by to pick up our daughter on his days off. We barely say 2 words to each other. He is very angry with me for kicking him out & says I’m doing a bad thing to our little girl. I do feel guilty, especially when she cries because she doesn’t want to leave home to go with him. People tell me he needs to see a psychiatrist and get fixed. But my question is there anyway to fix someone that is mentally “broken”?. He is on anxiety medicine and has been since he started accusing me of things, but it doesn’t seem to be working. Accusing me of cheating is only 1 problem in our relationship. We went to a counselor while I was pregnant in 2009 because of problems & the counselor talked to me alone and told me back then that I needed to get out of the marriage. I’m basically just a mess right now and not sure what path I will choose – divorce or to reconcile. It’s very lonely at home with my daughter gone and I’m trying to stay busy so I’m not crying. I’m trying to take it day by day and praying about it and asking that God direct me.
March 7, 2014 at 4:29 pm
I appreciate you opening up and sharing this. Your story took me back to when my windows were locked with a nail! He thought I was crawling out the window to have affairs with the “plant nursery” workers. I knew that his fears were actual delusions. That medication was needed. The painful thing about brain injury is that it is forever cycling. You’ll have a good few months after finding the right “cocktail” of meds and then the brain will adapt to it and a few months later, a new “cocktail” is needed. I know. I lived with it for 8 years and another 15 years post divorce. The separation and divorce helped protect my kids and I. It was so needed. And even though we were divorced, we had 3 kids together that kept our paths constantly converging. The courts gave me full custody and allowed their dad supervised visits with the kids. We went through years of visiting him in the hospital, jail, and waiting 2 years to find him when he went missing. After that, I knew I had to petition the court for the state to obtain guardianship. At this point, we are in a good place. I am moving on. My kids know he is safe and they visit when they can. The important thing is that my kids are safe and living their life as they should. Brain injury isn’t like any other injury. It’s painful to admit that we can’t control it. I know these decisions are difficult. You may want to read my post about “tough relationship decisions”. It’s under the brain injury and divorce tab. I’m new at all this blog stuff and am working on it! Please know that you are NOT alone and that we are with you in this tough time.
March 22, 2014 at 8:02 am
Maybe I’m in the wrong place, but here it goes… My mom & dad have been married over 20 years. My dad got into an accident at work when I was only four years old at the time, my sister was 11 and my daddy’s son from another woman was 18. I’m now 21 she’s 27, & he’s 34 or soon to be 34 I have no clue because he has never came around that often. My dad had an accident at work on Nov. 2, 1997. An air compressor exploded while he was working on it. He barely survived but he’s suffered from a brain injury since…he had major bleeding & swelling on the brain…he was transferred nearby where they couldn’t do anything for him so he was air lifted to another hospital for emergency brain surgery & plastic surgery. His right ear was barely hanging on. The doctor there didn’t guarantee anything. My daddy was still on life support and the doctor said he done everything he could do. He gave my mother a choice to take him off life support…which they (my mama and daddy) had not long discussed before daddy’s accident that if either one wasn’t breathing on their own to pull the plug, BUT my daddy was fighting & was breathing here & there on his own…so then they moved him to a more specialized hospital & they did more surgery because of swelling & bleeding. The doctor there said he couldn’t guarantee to what % or capacity that my daddy would be himself. He said he may become a vegetable.My mama said if he’s not breathing or doing anything on his own that she didn’t want him in that vegetable state. My daddy was in a coma in the trauma center for about 6-8 weeks on the breathing machine still breathing some on his own. He still had to keep having surgery because of the swelling & bleeding on the brain & my mama thought we lost him many, many times. He wasn’t responding & hadn’t responded since day 1 of the accident. I don’t remember any of this I just go by what I’ve been told by my mama & sister. One day I was in the the room playing & daddy FINALLY moved. He moved his hand or leg & it was like he heard me. Not long after that they said they needed him to get to a rehab center. He was still semi comatose so they couldn’t do much for him either. They tried to work with him but he was extremely violent toward the staff & his own family. I do sort of remember, although it is a blur, him biting me one day. I think that’s one reason why I suffer from panic & anxiety disorder. My mama also said he swung at her before. He still didn’t know who we were then, but they started working with him trying to teach him our names & such. It took years before he knew who we were. He didn’t stay there long because he wasn’t on the scale that he needed to be but they kept him for as long as they could. He got too violent & they couldn’t work with him any longer so he got sent to like a rehab/learning faculty for brain injury patients. NOT a nursing home. He probably wouldn’t survived in one. He has been there since like 1998. They started working with him & he still didn’t even know how to feed himself or anything. He would put too much food in his mouth & choke. He was also in diapers. Like he knew he had to brush his teeth, but he would pick up a hair brush instead of a toothbrush. He had to learn EVERYTHING all over again. Even how to use the bathroom all over again. He was basically taught who we were cause we were STRANGERS to him. We have drove all the way to see him & he would be ranting & raving & had bad days & didn’t want to see anybody. He was still verbally abusive for a while there. When he finally started eating his appetite came back good. He’s had to learn to breathe, see, hear, feel, love, hate, roll in his wheelchair, & now walks with his walker…he now bathes hisself, walks, talks, goes to the bathroom on his own, knows about all the oldies & has some memory but not much. He has came a long way though thanks to their staff. When it first happened to him we went to see him every Sunday, but as myself & sister have gotten older my mama doesn’t go see him but about three or four times a year if that. He’s only a little over two hours away from where we stay. I know it’s not her responsibility to take us anymore because we are grown, but she also has been in other relationships although she is STILL legally married. I’ve never had a real connection with any of the men she chooses to be with. None of them have ever really tried to be a father figure. They are always so much younger than her & very immature. Also, they have all used her and treated her wrong including the man that she has let come back in after doing her dirty several times. It’s like she has to have a man around no matter how wrong they treat her. We actually had a long talk today about this current situation & she said she still hasn’t made a decision about being with him but she may as well because he has been back staying here for about two weeks now. She doesn’t even call my dad but yet she says she still loves him but it’ll never be the same & he’ll never know her like he once did. She said she doesn’t plan on getting married to the man she is talking to now BUT note she is still married to my daddy. She will be 50 in five days & I don’t see the point of being with somebody at her age if they don’t plan on getting married. She asked me what I would do if it was me, but I really can’t answer that because I’m not in her situation. I do know that it is not right in God’s eyes. I just don’t understand so I found this page & I’m here for opinions about her situation so please don’t hesitate to be honest about it.
March 19, 2014 at 10:32 pm
Thank you for sharing a daughter’s point of view. You have seen pain and have lived through it. I can hear it in your story. I have 2 daughters myself. The one was just 4 at the time of the accident too. She could relate. She loved her daddy and still does. Even though her love for him looks different now. As far as your mom, I believe “Love” takes many forms and that we can’t box it up with neat tidy bows like marriage. That’s just my perspective as I’ve lived around many different relationships. You can support your mom by encouraging her to search out her own heart and make the decision that brings her peace. As for you, you have the opportunity to create your path now. Your love now. That’s what you can explore and how fun that will be! Keep being who you are, exploring your pain, and embracing your future.
March 22, 2014 at 7:41 am
I have no words to describe the feeling of finding this page. Amazing! There are people…several women who have similar stories to my own. Your own story hits much too close to home. My husband’s head injury happened in 2009. Right now I do not know where he is. I have four children that I am raising on my own. Thankfully, I have wonderful supporting friends and family.
My husband fell just a few feet at work in August of 2009. He was diagnosed with a mild concussion and sent home. Within a week, he could not remember one thing about his life before the injury. He would have complete retrograde amnesia for 14 month. The worst 14 months of my life. I say mine, because after 14 months he regained most of his memory, but lost any memory of those 14 months. I am the only one who really remembers what that time was like. I could go into all the running away and suicide talk, the temper problem, seizures, and so much more. Pain and suffering for himself, the kids, me. I hid as much as I could from the kids. Once he regained his childhood memories we all believed a miracle had happened. All my praying had finally paid off. Sadly, this was just a new stage. He began to be convinced I was seeing someone. He tapped my cell phone, put a tracking device in my vehicle. When none of this led to any discovery he would simply rage at me for hours. He would scream and yell at the kids. This was NOT the same man we had trusted and love, but it was…yet he was really not inside anymore. I had grieved him when he first lost his memory. Now, I grieved him again. I moved out. To my Father’s, where we could all be safe.
The divorce was horrible. When things did not go his way he physically attacked the kids during a visit and lost all visitation, pending a mental health exam. He didn’t bother, just disappeared. We haven’t seen him in over 2 years. The kids are safe and moving forward. I still wish we could do something to help him, but worry about the kids safety keeps me from hiring an investigator to find him. Part of me doesn’t want him back in our lives to cause trouble.
My guilt is no less than any of yours. Things became dangerous at home. I needed all of us to feel safe and secure. We called the police, the crisis center, his family, whoever could help. I took him to countless doctors to get help. Yet, I will always feel a part of me gave up on a beautiful man, a hardworking husband and loving father that deserves so much more.
With difficulty I am moving on. I own a business. I pay bills, for counselors, college books, teenager’s car insurance! Things that are not easy alone. I am thankful every day that my family is here to help, that I am strong and healthy so I can take care of these kids. That I still have faith enough to believe that there is life…beautiful, smiling life after all of this sadness.
I am so happy and thankful to have found these stories tonight! Thank you all for being brave enough to let others know you are out there, surviving!
July 19, 2014 at 1:19 am
Wow! This is so much like my story! You are right! I have tears in my eyes, pain in my heart as I read your story. I applaude you for persevering. I so want to meet you! To put a face to this story. I think we need to start an online support group…or something like that! Did you read my entry about homelessness? Dan was missing for over 2 years. My daughter was going to get married and she wanted him to walk her down the aisle. So many nights we prayed. We placed his name on missing persons list. Yes, those years were without violence and yet…the pain and guilt of not walking with him through his brain injury led us to try to find him. Once we did, we were able to get psychiatric care and guardianship with the state. For the past 2 years, he has been stable. He has attended his son’s football games, comes over for visits with his kids, and was able to walk his daughter down the aisle! That has been worth the pain of admitting him and going to court to fight the battle for him. I am thankful that after 13 years of being divorced, with God’s help, I was able to advocate for him. For my kids. For my grandkids. He is a wonderful man with a horrible affliction. I don’t wish this on anyone. Anyway, please know that you and your family are in my prayers. Keep sharing.
July 24, 2014 at 1:31 pm
Thank you for your story. So many that have been posted ring true of my own in some way. I pray that you do find that beautiful smiling life, I too am on that same journey to find it. 🙂
June 6, 2015 at 8:10 pm
It is painfully incredible to realize there are others who understand the agony of TBI that is impossible to sort through. My husband of 29 years suffered a serious TBI in 2006. I am a nurse and navigated my husband through the best rehabilitation possible. The disability we can deal with. The anger, hostility,verbal abuse and violent outbursts are a tortuous different story. I don’t think anyone can make sense of this aftermath. One day at a time dealing with his misery and the impact on everyone around him. Just a crazy mess where you try to scratch some quality of life out of it. No matter what path we choose staying together or living apart it will surely be difficult.
July 19, 2014 at 8:24 pm
You are right. It’s crazy making…a head injury. Sometimes, I just wished that it was his legs and not his personality. The fears that the violence brought on and the fact that no drug could heal him made me feel so out of control. I do think that both paths are difficult, stay or live apart. You must choose what you think is best. There are options out there that you can take. We divorced and eventually I was able to petition the court for the state to take guardianship. He is in an adult foster care home. Taken care of. I have moved on and my kids have a safe violent free relationship with him. My encouragement to you is to seek a safe path for you. You are responsible for you. My heart goes with you!
July 24, 2014 at 1:19 pm
What an interesting and heart breaking blog. I am responding from the other end of the spectrum. Maybe you can find grace in your hearts for me to be here. I’m the one who suffered an internal TBI which severely damaged my right frontal lobe. I went from a dynamic traveling writer and teacher to someone who only feels safe in my own home. I can’t remember how to cook and reading recipes is next to impossible. I can’t remember the amounts from the time I turn from my cookbook to the measuring spoons and ingredients. My ability to do mental math is gone. I played several musical instruments—all gone. I can drive but only when I’m sure I’ll be seizure free. I deeply feel each of these losses and of the extra burdens they put on my now retired husband.
My husband cannot bear the extra responsibilities and I can hardly blame him. I have asked for someone to come in and clean our house once a month because my ability to organize things is gone, but am denied. I will be trying to resolve one little mess and I get distracted with other things that need to be done. At the end of the day, no matter how hard I’ve tried, the mess is still there. Some call me lazy, not realizing how much sleep a brain damaged person requires. My husband taunts me for wanting to sit in a corner and read or write. The heck of it is, those are my limitations—what I’m left with.
He has always been shy and will not go out and enrich his life on his own. I deeply need quiet and security to carry on. I have thought of suicide several times to rid him of me. But I don’t think that’s God’s way and I can’t stand the thought of hurting my family.
All this to say these stories go both ways. It is tragic. I try to make myself small and unobtrusive, but I’m busted and there’s no way of denying it. I have a marvelous cadre of docs caring for me. I’m wondering how/if any of you will respond.
October 27, 2015 at 4:43 pm
Thank you for sharing your perspective. Of course you are welcome here. TBI affects us all in different ways. It’s ugly and something we all wish went away.. Cured.. Forgotten. But it is our reality even though we wish to escape it. Someone once told me that being responsible brings freedom… I guess my desire to run away does the opposite. You have a mountain to climb… Looks a bit different than ours but it is a mountain and we can relate. The big issue here in many of the spouses of TBI is the abuse and behavioral changes that affect the relationship. When these variables threaten the safety of the home, it is best to seek professional help. No one should have to face it alone. even you. Sometimes we believe in the fairytale love that is all miraculous and that just isn’t so. Don’t get me wrong, I believe in miracles… And still hope and pray for one. Meanwhile, I do all I can to Love my kids and allow myself to be human. Dan, who I continue to love in our way, is getting the care he deserves. And his children see him, love on him, and will always be there for him.
I hear your pain. Your struggles. You are not alone. Keep reading. Keep writing.Keep cooking. Empower yourself with tools to remember. Pray the serenity prayer. God is your greatest best friend. He is the only one who can be there for us when we are alone, scared, confused, and hopeless.
October 31, 2015 at 11:34 pm
Hello, I googled “brain injury patient’s wife takes care” and your site popped up. I am so distraught, My husband was injured in the army and went through 3 brain surgeries in 1993. Since then, he was misdiagnosed when he presented for blood clots and passed 11 through heart and lungs about 4 years ago. It has been a long hard road. His family has not been there at all, brothers, or anyone else for that matter . Our children are grown and I used to think my worst nightmare was that he would forget me. Little did I know that he would and could become mean to me. The thing I don’t understand is that it is usually and only directed at me.
He on the surface has some functional problems, seems to have short term memory accept remembers his childhood like it was yesterday. Overall he doesn’t look physically sick as he is.
I have had to take a job out of the home and still maintain his care myself, which I haven’t minded but he doesn’t let anyone else really help him. What I am getting to is that now he tells me that I absolutely disgust him, that he can’t stand me, that he doesn’t want to be with me, etc… he has packed some things up now 4 or 5 times to leave yet doesn’t but continues to verbally destroy me inside. That is just one moment and the next, he tells me how much he loves me. It seems to be getting harder by the day and sometimes moments.
I try and talk to one of my oldest daughters now 32 and I can see the heartbreak in her voice and eyes when I confide in her for she loves us both. It seems like no one understands the hurt and loneliness I feel.
I am in a lose lose situation. I love him and I lose if he stays for he is very hurtful and getting worse; and I lose if he leaves for again I love him; I will also lose for I will probably lose our home if he leaves for his pension and social security pays for it.
I really don’t know why I am writing this for I don’t know what anyone can do for me. I just don’t understand anymore. I just needed to vent;
November 2, 2015 at 1:07 pm
I can feel your challenges and pain!! But, do not give up hope. Your children need you even if they are grown. You can find hope in this tough situation. I did. Look to what you can control. Look to the possibility. Choose life.
November 29, 2015 at 10:13 pm
My heart goes out to you! We are not perfect beings. with and without a brain injury. If you are safe try to appreciate that your family is in tact. If you are not, talk to those good doctors. Your husband has lost the same part of you that frustrates you. I hope he is in counseling. Have a professional find some things of your own to do in the community. Don’t let his shyness define you. Have a therapist break down your cleaning into 15 min increments. You will continue to make progress. Choose to live in hope. We can’t change our spouses, but we can choose to love our friends and family and let God lead the U.S. hour by hour.
November 1, 2015 at 1:58 pm