The Walls That I Have Come Up Against

Anonymous, BrainLine
Dr. Jeffrey Kreutzer: Patience and Persistence Are Key for Caregiving

My husband suffered a TBI in a MVA in a military vehicle while stationed in Germany in 1976.  As a result was left with a seizure disorder and mental health issues.  Although he struggled to accept his seizure disorder and with bouts of depression, etc., he was able to manage his life.

In 1992, he went down in an episode of seizures and life for our family has never been the same. My husband began experiencing great difficulty in remembering how to do things that he had been doing daily.  He could no longer work or drive or relate to people around him.   At the time our sons were twelve and four.

I know everyone’s story, while different, can be similar in a lot of ways.  So I would like to share some of what I have experienced throughout the years.  I have found there are many ‘walls’ that I have come up against.  Some hit me right out of the blue with no warning and others crept up slowly.  But, once I realized what the ‘wall’ was, I always manage to find a way to climb over it.

Wall: None of my memories matter.

One of the highest walls had to do with memories.  Our lives are the sum of our memories or so I have heard.  But what happens when I spend my life with someone that ‘invents’ what he can’t remember.  You might say, “No big deal” or “It’s just a little thing.” Because while I am remembering, he is inventing.  While in no way a deliberate act of deception, he is literally ‘making up’ memories.  Filling in the blanks for himself.  This is how he survives. How do I survive when I hear these invented stories knowing the truth and sitting quietly while he states with vivid detail what never happened?

Wall:  What is the point of making new memories when they are going to be changed anyway?

My husband believes what he invents about the past.  To him it is all true, real, actually happened---it is his reality.  If I try to correct or prompt him to remember he will argue, become irritated and angry.  Then from anger to hurt and frustration.  To keep things happy I let him believe what he wants and thus, ‘his’ memories become life.  Sounds like a simple thing to do, right?  It is until you hit the wall.

The issue of memories is especially difficult for me when meeting new people and my husband is excited and wanting to be entertaining.  People ask questions and my husband invents answers.  Do I say to them, “You can believe this but not that,” and add, “If you would like to be friends with us just know you will always have to watch out for my husband.  Make sure he doesn’t get hurt.   Make sure he doesn’t get into any trouble.  Oh yes, be aware his stories will change.  Oh yes, and none of this is his fault.  And none of this is deliberate or in any way meant to deceive.”

Wall:  What is the point of meeting new people? Why would anyone, who is not related to us in anyway, take on such a relationship?

My husband does possess good manners and always wants to be entertaining, but there are times when he says something inappropriate or does something that just flat pisses someone off.  We have been asked not to return to a restaurant, escorted to the door at a western clothing store. Oh yes, Christmas shopping is not worth attempting anymore because my husband tends to become paranoid when in large crowds and thus ends up being followed by store security.  I thank God for online shopping. I remember one time when I literally had to stand between my husband and another man and say, “He has had a head injury, please just walk away.”

Making plans is something I tend to shy away from.  Going out depends on several things.  Is my husband well rested and in a good mood?  How much do we really need what we are going out for?  And the BIG one, do I feel up to a confrontation today?

Wall:  Is it really worth going out today?

I feel it is necessary to mention intimacy.  I am not talking about sex which ended for us years ago.  I could no longer handle the childlike behavior he developed toward sex. That being said, I feel his behavior was a result of his lack of ability to ‘put it all together’. Such as, how to begin or what to do next, likes and dislikes, things like that.

The intimacy I truly miss is lying in bed at the end of the day and having someone (who really knows and understands me and who truly understands what I am saying) to talk to.

Wall:  I have lost that ‘someone’ forever.

A few days ago we were helping our son move into a new apartment.  The apartment he was moving from was downtown in a major city.  It was after dark and we were loading a desk in the back of the pickup when a woman walked past talking on her cell phone.  I suddenly heard my husband’s voice trailing off and immediately turned to find him following and talking to the woman who was clearly not talking to him.  I had to stop him and walk him back to the pickup.  He had no idea what he had actually done.  No idea that it was inappropriate, that it was wrong, or what the result of his action could have been.  When the woman walked past, my husband assumed she was talking to him and he began talking to her as he followed her toward her car.  The only thing I could do was stop him in a manner that let her know there was something wrong with him, I was watching him and in control of the situation so she would not call security.

It took some time to get it through to my husband that he did not know the woman, that she was not talking to him and that it was wrong to follow her. Especially in a big city in a dark parking lot.

He thought she was the person that was working at the lobby desk and that she was talking to him even though she never looked at him and was hurrying to her car.

Wall:  No matter how long it has been, my husband still has to be watched.  He cannot be left alone because no matter how well things are going, at any time he can lose all logic.

Our oldest son recently called me aside and asked, “Mom, when did you accept the fact that ‘Dad’ is never coming back?”  He went on to say that it was obvious that I am no longer expecting him to ever be the person he was before.  He asked how I did it, wanting to achieve the same acceptance himself.

Our oldest son had twelve years with his dad.  He remembers his Dad coaching his little league team, taking karate lessons together, teaching him how to shoot a bow.  Our son went to school one morning and when he came home everything had changed.  I know I will never fully know what effect this had on our son because he tries to protect me so much.  But even now (he is thirty-four years old) I can still see the pain and hurt in his eyes whenever he talks about how things used to be with his Dad.

Our younger son accepts the way his Dad is.  That said, he has never known him any other way.  He does not have the feelings of missing what used to be.  He has grown up (twenty-six years old) knowing he had to always ‘look out’ for his Dad.  To make sure he was ok and safe.  He has stated in the past that if anyone asks he tells them he grew up in a one parent household. I cannot say if staying with my husband was the right choice for our sons or for me.  I can only tell you about our life.  Maybe at some point, our sons will share their story. 

For now, I am more relaxed.  ‘Events’ that occur now are not as devastating to me as they were in years past.  But it wasn’t until our son asked that question that I realized it is true.  At some point I accepted that my husband now is not the man I fell in love with.  He is not the man I married.  He is not the man I had children with and he is not the man I planned to share my future with.  And it’s OK. 

Do I still love him?

I did marry him. I did have children with him.  I will always take care of him.  This being said, I will be sixty years old this year.  My outlook and desires for my life are not the same as they were in my 20’s, 30’s, or even in my 40’s.  My children are adults now.  Life is easier now.  I have climbed walls and am now moving forward. At some point, I am not exactly sure when, I decided to stop waiting for those little sparks of ‘the man I married’ to appear. 

I no longer look for him and I forgive myself for that.

Editor's Note:  This piece was originally posted as a comment on Abby Maslin's The Not-So-Secret Confessions of the Caregiver.

Posted on BrainLine February 18, 2015.

Comments (8)

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You are an amazing women!! It’s not easy to be a TBI caregiver. There are many challenges in our way, without any doubt. However, there’s a God that gives us strength and motivation, on our daily basis, which is what makes us continue to move forward! My oldest son, is 32 years old and suffers from TBI as well. Two years a go, he was a happy and energetic person. Suddenly, due to a car accident-his and our world has totally changed. He struggles daily with short term memory, he cannot remember his daily routine, which causes him to be very frustrated with himself. However, I try to remind my son every day, that I understand what he’s going through, but this life experience must have a purpose in his life. In fact, Drs have stated that his prognosis weren’t the best, but God took over the situation and revived my son. He is restoring his brain in a such amazing way. The message that I’ve to pass to all of you, warrior caregivers, continue to acknowledge God everyday, because he can give you the hope and strength that we all need to help our love ones moving forward to this challenge life path! Never loose your faith towards God. He’s power is endless, and the miracle that he can perform in our life’s, is unique.
God bless everyone one of you.
Heloisa B.

Thanks very much for sharing your story, it has been a real eye opener for me & to find out that I am not the only one that has to deal with & goes through all the obstacles or “walls” from being the spouse & full-time caregiver of someone with TBI! I can relate to all the changes with our life & everything you said was so relevant! Sometimes I even feel like I’m the one with the brain injury or that I have TBI also, especially when it comes to communication!!! I just wanna give up sometimes! But still keep trying...

This is a really powerful piece. You put some truths out there, that a lot of us avoid saying or expressing. Thank you for your honesty. Through my tears...thank you.

Thank you for sharing your experience. This Awareness and insight from your perspective is valuable to me.
Everything you say is currently happening to me. We are three years in from a hypoxic anoxic brain injury after a cardiac arrest and our lives will never be the same again. I grieve daily for what once was and every night I go to bed with a stranger who has his own take on life - pretty much as you describe with the invention of memories and inappropriate behaviour that alienates even the best of friends. And then come all the well wishes who think life will miraculously return to normal the moment they walk out the door. That is the hardest. Not being able to get those who you care about to understand the hell you are living in. I'm over it and it's only been three years.
It's a hard life. Very little hope in reality. My son is 20 & had a severe Tbi. Nonverbal in a WC. He's happy albeit inappropriately at times. We will always have to care for him and forget about a normal middle age , retirement, grand kids etc.
God bless you...daily I fight alone through this, without support. Days can be scary and very alone. Know with this note comes my prayers and sincere heart felt "I Love You & Your Family!"
So much bravery on show in this piece and as a TBI survivor myself, your post was appreciated more than words will say. Thank you.