Abstract
‘When The Sun Rises’ describes the impact a traumatic brain injury has on a marriage and how unwilling and unprepared the medical community can be to deal with those impacts. This essay challenges us to look beyond rehabilitation of the injured person and offer solutions to help the couple support one another in their new lives.
My husband was hit from behind by a car while jogging with his friends. The car hit him so hard that it knocked him out of his shoes, sent him up into the air where he spun three times, then landed in a prickly bush on the side of the road. While the bush scratched his face and body, it also saved his life.
I was on my way to a work event when I received the call telling me that my husband had been hit and was in an ambulance headed to the nearest trauma centre. When I arrived at the emergency room (ER), he was in what they called a memory loop, replaying the last thing he remembered. It was very traumatic for me to watch him yell, ‘Help the man! Help the man!’ over and over again, until they eventually gave him some medication to calm him down.
The ER doctor then told me that he had sustained broken ribs on his right and left sides; broken bones around his right eye, which had been pushed back several centimetres into his head; and injuries to his brain. They would be moving him from the ER to the intensive care unit (ICU) for treatment. It was shocking to hear these words from the doctor. I knew the ribs would heal and thought there might be something they could do for his eye, but had no idea what an injury to the brain entailed.
After 2 months of many hills and valleys in the ICU, one of the doctors notifies me that my husband will be transferred to a rehabilitation facility soon. I am told that the rehab facility specializes in weaning patients off the ventilation machine and that there are very few facilities near us that will do this. ‘What about his brain injuries? When will you start dealing with that?’ I remember the doctor pausing, then saying
‘Imagine that you are travelling on a train at night. As the train moves along, you look out the window and see nothing but darkness. Eventually, the train stops and lets you off. It’s dark and you can’t see what’s around you. As the sun rises, you look around and can see where you are. Now you can begin to figure out how to get from where you are to where you want to go. The sun hasn’t yet risen for your husband’, he said.
When the sun rises. ©Karen Grazionale
His answer was not what I was expecting. In fact, I found it more confusing than helpful. A few days later, my husband was transferred from the ICU to a rehab facility not far from our home. He weaned himself off the ventilator, the first night that he spent in the rehab facility, by pulling the tracheostomy tube out of his throat. The doctor told the nurses to cover the hole and monitor my husband to see how he did on room air. He did just fine. No weaning necessary.
The facility provided him with an hour of physical therapy, an hour of occupational therapy, and an hour of speech therapy each week day. There was no therapy on the weekends. Just long days broken up by visits with family and friends. My husband occupied his time surfing the internet and calling people to talk to them on the phone. He was irrational and delusional. Often those calls were disjointed and confusing to the person on the other end. Our adult children worried that their dad was saying strange things to people. I told them not to be concerned. ‘If those people are truly our friends, they will understand.’
As the days went on, rather than getting better, my husband became more agitated. I sought help from the facility’s neuropsychologist, but she was able to see my husband only once in the 2 weeks he’d been there and he needed more. He needed help understanding what had happened to him and what was happening to him now. Unfortunately, those resources were not available. He was scheduled for 22 days getting weaned off the tracheostomy tube with standard physical, occupational and speech therapy. The facility was unable to adjust their treatment plan to meet his needs. So, after just 2 weeks, he checked himself out of the rehab facility and came home.
His general practitioner did her best to refer him to various specialists that she thought would help. Those specialists were mostly focused on his body and not on his mind. As his body healed, his mind deteriorated. He became more combative, impulsive and said hurtful and inappropriate things. He did not remember the accident or his time in the ICU. His only memories were of the 2 weeks he spent in the rehab facility, so he thought I was exaggerating when I talked about what happened and that I lied when I told him he had a brain injury. ‘What brain injury? I’m fine. I just need to work out and build back my muscle mass,’ he’d proclaim. Yet, I noticed problems with short-term memory, lack of attention, inability to complete a task, problems word-finding, and what looked like post-traumatic stress disorder.
As he found himself struggling to do things that once were easy, his frustration turned to anger and his anger emptied out on me. What was once a happy, loving home, became a dark and lonely place for both of us. He became deeply depressed and I became sad and afraid. No one told me this is how it would be. No one prepared me to deal with this kind of anger and verbal abuse. This wasn’t the guy I married. A year after the accident, at the end of one of his angry rants, I very calmly say, ‘I cannot continue to live this way. I will not abandon you, but I need to figure out how to get the help you need and still take care of myself. I will let you know what I come up with.’
Fortunately, we were able to participate in a research study on the impacts of a traumatic brain injury to a marriage. It was being done at a teaching hospital nearly a 2-h drive from us that specializes in head injuries. The first appointment involved an initial assessment, followed by 6 weeks of couples counselling, then the same assessment retaken. Once we agreed to participate and signed the appropriate forms, we were given the questionnaire and seated in different areas of the room. The questions were about our relationship with ratings of 1–10. Tears filled my eyes as I read the questions. By the end, I was sad and emotionally drained. As we walked to the car, my husband said, ‘You must have taken a different test than I did’.
We began counselling the following week. In one of the sessions, I learned how singularly focused the brain-injured are. The counsellor shared a story about one of her clients who, in a rainstorm, grabs the umbrella and runs from the building to the car, then waits for his wife and two small children to join him. The wife waits, thinking he’s coming back with the umbrella, but he doesn’t. She eventually picks up one of the kids, grabs the other one by the hand and runs to the car. When she gets in the car, she’s soaked, cold and angry. Her husband doesn’t understand why she’s so angry. To him it’s simple. She should have had an umbrella like he did. Sharing this story helped me realize that my very thoughtful and helpful husband no longer exists. Rather than being angry with him for not noticing things and helping me, I need to be very specific with him about what I need him to do. It’s not a judgement of his character or how he feels about me. It’s just how it is.
Towards the end of the 6 weeks, we covered the topic of intimacy. It’s something both of us were looking forward to. The counsellor guided us through an Intimacy Style Quiz to help us learn one another’s love language. I learned that my husband feels loved when we do fun things together or when I show a real interest in what has to say. He learned that I feel loved when he says kind things to me. We both feel loved through physical touch. With those results, the counsellor suggested we start by holding hands.
Through this exercise, I learned that my husband did not like to hold my hand because he thought I was trying to help him stay balanced while he walked. In other words, I was being a caregiver and not a wife. When I thought about it, I realized that he was right. After that, I began reaching for his hand when we sat in bed in the morning having our coffee or on the porch in the evenings watching the sunset. After doing it for a while, we both began to reach for one another more often and more naturally. I still help him balance when he needs it, but I also hold his hand just because.
At the end of the 6 weeks of counselling, we went back to the researcher’s office to retake the assessment. She seated both of us in separate areas like before and gave us the questionnaire. This time, I answer all of the questions in a hopeful and positive way. No tears. No sadness. No anxiety. I felt energized and empowered. As we left, we both thanked her for letting us into the research project and expressed our hope that what we’ve shared will help other couples. We know how fortunate we were to have found this research study and receive counselling from someone who understood how brain injuries can impact relationships.
As I think back, the ICU doctor who talked about being on a train and getting left at the station in the dark of night perfectly described that first year for my husband and me. As I’ve spoken with other family caregivers, I’ve learned that even when their loved one has completed in-patient rehabilitation, the transition to home still feels more like being left at the station in the dark. No one is prepared for the long arduous journey ahead, not the family caregiver or the general practitioner. This is all new territory with a language of its own. There are a myriad of specialists and sub-specialists that focus on the neurosciences and not all of them are easily accessible. For many, not knowing that a specific therapy or treatment exists is a barrier. For others, distance is a problem and it may take months before an appointment is available.
In the meantime, individuals with brain injuries and their loved ones are in the dark, alone and afraid with no one coming to help them. Someone needs to meet us at the station with a light to get us through the darkness and the fog. We need help long after discharge from the acute-care and in-patient stages. We need assistance that is long term and able to evolve as needs change. We need the medical community to rethink how post-rehab care is done today and create a more holistic programme based on what is already known about life after a brain injury.
As the sun rises over the train station, I grab my husband’s hand, smile and say, ‘Come with me. We’ll figure this out together.’ He beams, takes my hand, and we walk towards the sun. Not fully knowing where we’re going or what we’ll find along the way, but confident that whatever it is, we will conquer it together.
Biography
The author is retired, after 30 years as a change management professional. She currently cares for her husband, Victor, and their dog Riley. She is on the Community Brain Injury Services Board of Directors and serves on several advisory councils. She also provides peer support to caregivers in the hope of easing their journey.