If someone had told me that I would be dealing with the effects of a car accident years after it occurred, I would have immediately assumed it would be due to the obvious damage to a person that results in broken bones and wheelchairs. I would never have thought of the injuries that are internal, and especially brain injuries that are not visible except in the way they affect a person’s function. Now I am much older, I have sustained brain injuries that took years to overcome and I am married to a woman who is also dealing with TBI’s. I also have found myself as a volunteer working on access for disabled residents local to Albuquerque and the surrounding area who are also dealing with TBI’s. One does not realize the impact of such an injury until one is a survivor or caring for a survivor.
If I had not first experienced a brain injury myself as a teenager and had the long recovery experience in my past as well, I would not comprehend what was happening with other people that I know who are also dealing with the effects of head trauma or TBI.
The ways that head trauma can occur are as varied as our fingerprints. Usually no two experiences are alike and even similar experiences will produce different results in people. We have one friend whom I built a ramp for and remodeled his bathroom a few years ago who was injured in an accident while driving home. His car was broadsided by a drunk driver in an intersection traveling at approximately 105 mph. At that speed one would assume the impact would be fatal. But in spite of being hit on the drivers side of his car, our friend survived. He was nearly decapitated by the twisted metal of the door coming through his left side, (stopping just short of his trachea, esophagus, and spine) and the glass shattering and slamming in on him nearly took his eye as his head was impacted on the left side. His body was pushed through the center console and mixed with it and all of the metal and the front end of the drunk driver’s car were shoved to the passenger seat. What is visible is his wheelchair with the braces and straps to hold him upright, his backup oxygen strapped to the back of the chair, and his joystick to control his chair and a TV remote that his caregiver has provided for him.
The invisible wounds are the loss of memory and the majority of normal function such as social skills and cognitive thinking. It takes hours to get through a simple conversation with the poor man. My heart breaks for him. He was a successful businessman in sales and doing well with a wife and children and now he is sitting all day in a chair with no interaction or social enjoyment except in terms of what he can do with a phone. Once he got my number, he began to call me as often as every quarter hour. He was unaware that he had called just fifteen minutes before, and so I would patiently explain that we had just talked and would extract myself from the conversation and go back to whatever I was doing. Sure enough, fifteen minutes later, he would be back on the line. His live in caregiver would explain that the man would just go through his contacts and dial each one and continue to rotate through all day long. Which drove most people nuts! Some people blocked his number, others reported him, and others would try to make time for him. It is heartbreaking to be in proximity to the situation.
Going out and working on ramps for years and remodeling bathrooms for access for the disabled brought me in contact with many like our friend in the above situation. I also encountered combat vets from WW II forward that had suffered TBI’s and some were especially frightening to deal with. There is nothing like a combat vet trained in hand to hand and still strong assuming during his flashback that you are the enemy and finding yourself having to try and defuse the situation without being injured or even killed. And the situation is not limited to men anymore. With Desert Storm in the early 90’s and Enduring Freedom in these past conflicts, we now have female vets coming home with the same kind of injuries as men. One of the women, a nurse I assisted was riding in a Humvee with her medical team, when a IED exploded under the vehicle.
The explosion was so powerful that it drove the floor of the vehicle up and pushed her head into the top of the cab. She suffered a head injury, broken hips and legs as the floor came up into her body and her spine was fractured in multiple places with a accompanying compressed disc issue as well. The attractive and vivacious young woman is now barely ambulatory, (her doctors insist it is a miracle she can even walk) and hobbling about with a guide/companion dog and trying to integrate into society. She can no longer be a nurse due to memory and reaction time delay but she is getting a degree in business and accounting and is longing for the day she can be normal. I did not have to build a ramp for her floor level apartment or remodel her bathroom, but I had to open up a doggie door for her guide dog so he would have freedom to exit the house and be in the yard for his pottie breaks etc. Once she is in bed at night she cannot rise in the morning without putting on braces and going through a intricate maneuver to get out of bed. So with that in mind I recommended and the landlord installed a fire suppression sprinkler system in her residence to protect her and buy time for her in case of fire. We have to not only accommodate the immediate needs for the people suffering from the aftermath of injury, but we also must anticipate possible disasters that might occur.
Another gentleman whom I worked with would flinch, and often react violently when thunder sounded nearby or if fireworks were set off in the summer celebrations. I learned the best thing to do for him was to provide him with very good stereo music and a cable TV package with the sound fed through a set of headphones. That way he was able to block out the sound of July Fourth celebration or bad storms, (during which time the entertainment center was powered off batteries to avoid the possible damage by power surges from lightning) and he could insulate himself from the loud explosions and thunder. I had to improvise often. Sometimes trial and error were the only tools I had to work with. But with the wide variety of aids available today and the many electronic items available, I do eventually find a solution.
These are the things that we can be aware of as we observe people who are dealing with a TBI. What you cannot see unless you are in their shoes is the feelings, frustrations, disappointments, and the many failures to launch after starting the recovery process. If you are a caregiver, the clues are not always clear and so our response is not always appropriate for the situation. A million and one good times and right responses by a caregiver are forgotten often in the one failure. For the person in the bed or chair or even able to walk and move on a limited basis is this one issue, COMMUNICATION. When the person suffering the aftermath of a head wound-TBI, it is often very difficult to communicate what he/she needs at the moment. Even when able to talk, the victim of TBI is often having trouble articulating what is needed. If the caregiver is harried, tired, over extended, short on time, long on chores left to do and the list goes on, the caregiver will often begin to get short tempered, impatient, and frustrated. Especially if a task has to be tried and repeated multiple times in order to stumble on the right or desired response.
I started out married to my wife, married to a woman who was otherwise fully functioning other than being in a wheelchair. After four car accidents in 5 years and two major falls backward in her wheelchair on improperly laid out and maintained walkways, we began to deal with the after math of the multiple TBI’s. Life changed. A LOT!
I am still finding a new normal and I confess I feel a dismal failure at my progress so far. Our normal relationship is gone. In it’s place is a minefield of new experiences, feelings, and of the supposed normal marital relations other couples enjoy, they don’t exist anymore. We are finding our way in a labyrinth of difficult new challenges. I think the greatest problem is that loss of memory that was an issue with the first friend at the top of this article. What can we do except improvise? There is no other option! We find new ways to get around the challenges we now face.
What I never thought I would encounter in the past is the need for support myself in a very different way that would address the unbelievable stress levels I have had to deal with. I can even explain or describe what it is like now to most people because they simply don’t comprehend what is happening behind our closed doors. When I had my accident in July of 2014 and needed surgery myself and also could no longer pick my wife up or help her move, we had to bring in outside help.
But with the loss of my contribution to our finances, we could not hire someone so we asked my wife’s daughter to stay with us and make up what I lacked in being able to lift move or help my wife reposition. My wife’s daughter is 25 years old, and even though she is studying medicine, her life is on hold while I recover and my wife is needing extra care. The benefit for us in having her help is that she is able to monitor and dress wounds, and help with other minor medical needs. But the fact remains her life is on hold. And she has her own health problems to deal with that have often immobilized her.
I now look back on the previous years when I was the lone caregiver and honestly do not understand how I was able to stay sane and functional. Whether from the accident, or the compounded stress, or the depression I dealt with after losing my own mobility for two years or any number of other issues, I have found that I can function much better if I have a way to retreat and have some ‘me’ time. I did not have it for a long time. But now I am finding it necessary to have the private time for my regeneration or I cannot function in the roles and shoes I fill.
But that is the challenge, isn’t it? We do not have replacements. We are often alone and unsupported. What happens to us is a result of sacrificing and laying aside our own lives to care for someone who cannot fully function without help. An outsider would say there are rest homes. Well yes there are. We have all heard about those homes that abuse, neglect, or mistreat the residents. For many people the fear of their loved one being mistreated in any way is a powerful motivator for the caregiver to drop their own life in order to at least give some semblance of normal home life to the invalid. But there is that fallout, isn’t there? We find yourself without income of our own, without proper medical care, often misunderstood as to our intentions, and many times too exhausted to care anymore. We will meekly give ground when our own care is at stake and give up our own rights, but when our loved one suffers due to outside forces, neglect, or abuse our claws come out. I heard a friend remark a few months ago that because I was a Christian, I was an easy target for anyone to subvert and take advantage of, but then he said, “I would hate to be in the shoes of the person who hurts your wife”!
We are like that though. And we must be careful. Because just as the TBI of our patient is often invisible to the world around us, so is our own stress and internal issues that can destroy our health. We are more likely to suffer a heart problem or stroke than the general population. We are more likely to have exhaustion. We are often battling depression, simply because of the many issues that overwhelm us each day in the care of our loved one. We also lack our ‘me’ time, because we often are needed 24/7 at home and if we are working outside the home and also pulling a full shift at home we are usually suffering sleep deprivation and exhaustion. Those are deadly when sustained over an extended period of time.
The problem with TBI’s which include stroke victims by the way, is that they create an environment of worry and fear for the safety of the patient. I wrote earlier about a former pilot from WW II who was cared for by his wife. She eventually was freed from his care simply because he could not be left alone for even a minute after his Dementia was more progressed. In his mind he was still flying missions against the Japanese in the war and he was living those days out over and over. He was eventually placed in a nursing/secured facility and his wife, a dear friend was recovering from a heart attack and the stress brought on by his mental deterioration. Now they have both passed on and the house they lived in is gone and all is as if they did not exist except in a few family members’ memories.
I think that is what some of us fear the most insofar as our personal situation is concerned. We leave no mark on the world when we pass on. Our only claim to notoriety is that we loved, we cared, and we stood for the defenseless and helpless when all others walked away. Maybe that is the best kind of impact to leave in the world anyway.
I could really relate to this, my husband has TBI and I am an amputee. I have to take care of everything. I love him so much, and the hardest thing of all is that he doesn’t know me or remember us all the time. He gets angry easily and it is impossible to discuss issues with him. I feel very alone and fight depression.
Sharon. I know what you are missing. I know it is nearly impossible at times but you need to find a way to ease your own stress. So that you do not completely burn out. I hope and pray you find some emotional support for yourself. I find no matter how strong we are that we still need our own time to destress.
You need to find a support group or an understanding friend. I found myself burning out before my accident and when I did go through my own surgery I was melting down. I needed to be in rehab hospitals and facilities for a month and it really created some breaks in or relationship. I have had the same experience with my wife when she is out of her head with pain or other things. Please find someone to be a real friend. David