Who to Trust?

Who to Trust?

Eighteen months ago I found myself in a confrontation with my husband, and saw a look in his eyes that I had never before seen. He stared at me up and down, as if I were a stranger: a predator not to be trusted. And for the first time in our relationship, I took both a literal and metaphorical step back.

In this moment, the man that I had loved loyally for most of my adult life didn’t seem to know me at all, setting in motion a vicious cycle of mistrust that would quickly threaten to drive an irrevocable wrench into our marriage. If TC no longer trusted me, how could I trust him? His behavior was extraordinarily out of character, blindsiding me entirely by its suddenness. The husband I knew would never look at me this way.

This month I delve into an issue in which I’ve rarely ventured. For a long time, it felt too personal, too raw, to discuss the topic of mistrust. In my blogging, I’ve always approached my descriptions of my husband with caution. After all, TC has been a willing and patient subject of my writing for several years now. The respect I have for the man he is and the character he demonstrates is unparalleled. But, like the rest of us, he is not perfect. And neither is our marriage.

Of all the things I was warned about following TC’s brain injury diagnosis, no one suggested the idea of mistrust or suspicion. I didn’t anticipate waking up one day, twelve exhausting and painstaking months into his recovery, to find myself on trial, accused of harboring ulterior motives and secret plans to break apart our family. I consider myself a resilient person, but the accusations being tossed around by my most sacred partner were enough to completely unhinge me. I loved my husband. Throughout all of the chaos, I had remained both loving and faithful to him, even in times when I was losing faith in the outside world. It goes without saying that not every decision I had made in TC’s recovery was the right one. I wasn’t the world’s most patient caregiver every moment of every day. At times I greatly resented the set of circumstances I’d been handed, and, unquestionably, I was grieving. But I was still fairly certain that I didn’t deserve this upheaval.

Sadly, my experience with TBI mistrust is not unique or especially unusual. While perusing caregiving blogs, I have stumbled across heartbreaking tales of TBI-related delusion and suspicion. For some survivors, TBI is responsible for serious hallucinations and episodes of psychotic behavior, adding yet an additional layer of stress for families who are already under strain. For TC, this difficult episode seemed to stem from growing issues of confusion and self-doubt.

To talk with my husband now about this challenging period sheds much needed insight into his behavior at the time. TC openly admits to being confused and ungrounded during these months. While he was aware of the facts about how he sustained his injury, the first few months of his recovery were foggy. He relied on friends and family to fill in the gaps, understandably causing him to feel a loss of control over his own life. He was struggling to remember who he was pre-injury, how he might have reacted in various situations, and to whom he turned to as trusted confidantes. All of this doubt and uncertainty about himself quickly began to color his perception of other parts of his life, including his relationship with me.

I wish I could say that I took an objective, non-emotional approach to addressing TC’s mistrust. Rationally, I knew it wasn’t fair to hold him entirely accountable for this behavior. He was still healing, trying to pick up the pieces of a life that had been so violently shattered.  The truth, however, is that I still felt enormously betrayed. I had championed and advocated for TC during the hardest year of his life, and I was both physically and emotionally exhausted. Being put in the position of trying to convince him of my intentions felt preposterous and insulting.

There are no easy solutions when mistrust begins to breed in a relationship. Therapy, both individual and as a couple, are essential. In retrospect, I wish we had leaned harder on this resource. Wading ourselves out of the muck of that dark period has proved to be a lot of work.  It has required time, space, and heavy doses of forgiveness (both for ourselves and for each other).

I’m still uneasy discussing the ugliness of this phase of recovery. In many ways it’s a tender wound, one that is gradually closing, but exists nonetheless. We all have our breaking points and in the caregiving experience, this episode of mistrust proved to be my own Achilles heel. It was the moment I recognized my own fatigue and was forced to accept that I could not continue down this path without help. For TC, it was the moment he realized he could not entirely trust himself anymore. Although it’s been trying, I’m grateful we chose to put in the work and stay the course. With each day, we put a little more distance between our marriage and this difficult time. With each day, our trust continues to heal and grow. With each day, we are a little stronger than the day before.

Comments

So grateful for a little slice of your story! I hope one day you feel empowered to share more about it. My life partner (with whom I no longer live but for whom I have still become a primary support and advocate) displayed this kind of behavior, acted on it (out of revenge) about a year ago and...it was absolutely a sociopathic disaster. His TBI occurred but was never diagnosed as a teenager. It was, in fact, only diagnosed last month after some serious patient advocacy for an MRI. He is nearing 50. Inappropriate sexual behavior came through in his revenge...due to the misplaced mistrust and delusional (though not outlandishly delusional...it just felt like gas lighting) memories. Now I'm in a really weird place. It's quite isolating. I've studied TBIs and the brain SO much that I truly do see what happened as a symptom of his injury (and prior to last month I had come to see it as a symptom of mental illness) but his name has become practically unspeakable among the rest of my loved ones. I feel stuck and a bit thirsty for a grounded system of support... people who get it and are not afraid to talk about it. The journey to understand what happened has consumed me for more than a year now and yet...it's hard to talk about it with the people who love me most. Behavior stuff is hard. There's so much shame and vulnerability wrapped around it. Anyway, thank you for your post.

Reading this today, I look back at the months following my husband's TBI and remember vividly the moment when I realized my husband would never be the same again. We were in his Rehab room, watching a true crime show, and I had fallen asleep when my husband's bed alarm woke me. I helped home out of bed, thinking he needed the bathroom, when he started talking about the woman who had been murdered across the hall. I tried to explain to him that we were in the hospital and the room across the hall was empty, but he just became more agitated. Finally he took ahold of my shoulders and shook me, shouting "She's been murdered!" This from a man who had never laid a hand on me except in love. I called the nurse down and left the room to have a much needed cry in the chapel while she walked with him up and down the halls. It took him about an hour to really understand he had imagined the whole situattion.

This may save my relationship thank you. Survivor, Iowa

I'm in tears right now at how true this is for my fiance and myself. It doesn't help that I struggle with my own mental health issues or that my daughter had a massive 13 1/2 hr. brain tumor removed a couple years ago. Enough about "me". I will stick by him no matter what, even when no one else will. I love him unconditionally; period. I joke that he always has all my personalities so he will never be alone. Thank you for this, from the bottom of my heart! Go t to go. He started having a sleeping seizure again. Much love!

I am a caregiver to my husband. During all the mis trust hallucinations unknowns, here I sat watching our car get taken, I went and changed jobs, thank god for understanding landlords. My sister in law actually started feeding into my husbands hallucinations and mistrust towards me. ( I found out later) and to top it off, during a hallucination one night he confessed all his sins...cheating. He cheated previous to the tbi. Now I am not sure how to process it all. Don't know if I have yet..... Cat

What a great article!  It is admirable that you recognized this phase as a part of your husband's recovery and pushed through it.  Some are not so fortunate.

I'm so lucky that my husband has only had tiny flashes of this behavior.

From other carer's experiences it seems to be most common in those with frontal lobe damage. It affects the communication between the two halves of the brain. Its where the two hemispheres sort out how to react to incoming information. Usually one side is impulsive and the other side contributes the caution, the weighing up of consequences.

Once it is damaged it makes the sufferer blind at first to the consequences of their cruel words and impulsive actions. As the person recovers they become more aware that their thinking isn't  "normal". Its hard to trust anybody else when you cant trust your own brain.

Throw in perseveration, where thoughts or actions run on a damaged loop and its even more horrible. Perseveration is where the normal neural pathways are damaged but the brain tries over and over to send the same message without success. This can take lots of forms from OCD behaviours, repeating words or phrases through to those suspicious and paranoid thoughts. Thoughts that are repeated over and over. It's most definitely organic rather than mental illness. It can get better over time spontaneously or with behavior modification. Still it doesn't make it any easier for the carers now faced with trying to love an angry stranger.

Thank you for broaching this topic I feel I'm in the same place as you right now I don't understand how the medical profession can give these issues such little recognition and why it is so hard to find help. Four months after finally getting help our government cuts funding and we are back to feeling desolate and alone. TBI New Zealand

We are 19 months into my husband's severe TBI.  I wish I could get more info into the lack of trust issue our family is seeing.  None of our therapists have mentioned this as a side effect and we thought this needs to be addressed psychiatrically as he is presenting as bi-polar manic.  Didn't know this could be neurological and could resolve as his brain continues to heal?  Any resource info would be helpful.  There are days when this becomes a huge issue and we are exhausted.  His mistrust is directed at us, doctors, meds, etc

I am a TBI and I have experienced the mistrust element. Thank you for bringing up the topic. I thought it was just me. The caring and compassion of the partners of TBI is heartwarming!

Mistrust was new to my personality post TBI. I frequently question if the mistrust is a biophysical response to a TBI or a response to the experience of how the world treats a TBI ?

In any event, hyperbaric therapy(hbot)  helped. I experienced that Hbot helps a lot of TBI  issues 

Susan 

Thank you, Abby and TC, for sharing the affects TBI has had on your marriage. Your personal accounts will help countless others. I'm looking forward to reading your book. 

The mistrust is internal misperception. It is not psychiatric but nuerological. There is a self fix.

Well said, Being a caregiver is difficult. You are thoughtful to share this struggle and humanize this journey. Reinventing your relationship and self, although challenging, may also be invigorating.

This is EXACTLY what I am experiencing with my boyfriend right now...he is paranoid and accusatory. We are in therapy...and this article was timed perfectly. I just hope that he can recognize that it is his injury (and while its hard, I will try to see that too) and that I really am not out to get him or anything and we can work through this together...

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