Chapter 12: TBI – Baby Steps, One Day at a Time

From my Journal, April 4, 2013:

Well it seems that the reason you were brought to the Glenrose was not because you are ready to be here but because the doctor here agreed to check you out for a while because the doctors in Mayerthorpe weren’t sure  how to go about getting you to Ponoka, and it sounds like an exception was made to see if they can get you to improve enough to benefit from rehab, so that in some round about way you might get to go to Ponoka eventually. But it’s also possible that you won’t.

I have the impression from discussion with the doctor here that he doesn’t have a lot of hope for your response to their program, and he is basically going to see what happens over the next two or three weeks and then reassess. What he saw today from his assessment was obviously much less than it needs to be for you to participate in the program, and he said that based on the fact that over three months you are still not able to be consistent about time, place, names, date, etc. and muscle responses are weak, he is 99% sure that you would not go home after the three month program here, if you are even kept here.

My car became my crying space at the end of each trying day.  I couldn’t allow Pat to see my struggle because I wanted him to only have positive attitudes and words around him and not to worry about me or about what was happening.  He had no idea how seriously injured he was, and I wasn’t sure he would ever know, so I kept my walls up throughout each day and let loose once I was alone in my car getting ready to leave.

I had packed myself up again and was staying in the city so I could still be with Pat every day, and I wanted to be available to help with his therapies and learn any extra exercises or work that I could do with him during our visits so he would get as much stimulation as possible.

The physio team started working with him that first weekend, having him strapped into a special lift that held him up while they worked on getting his legs moving, walking him slowly and beginning to teach him how to put one foot in front of the other by moving everything for him themselves.  While watching this encouraged me because it seemed like such a great start right off the bat, it saddened me because I began to witness the extreme effort that every single movement or series of movements was going to take for someone whose brain no longer functioned normally.

Pat’s first swallow assessment didn’t go well and he was still unable to take either food or water by mouth after more than three months.  His neck fracture was healing but very slowly so he still required the neck brace, which was also an obstacle for swallowing exercises.

Around this time – about ten days after the transfer – I was struggling with suggestions from others who had dealt with the medical system that I would need to fight for Pat to get what he needed, and I started to feel stressed and confused about that because I didn’t know what I was to do and I didn’t want to miss anything.  I spoke to our social worker about my concerns and expressed to her that I wanted to be a good advocate but also that I didn’t want to be fighting with anyone, because I preferred to assume that they were going to do their best for Pat.  She understood my concerns and referred me to the nurse who was in charge of the Brain Injury unit, working closely with the doctor.  I again explained that I wanted to do what I should do for Pat but that I didn’t want to fight with anyone, and she assured me that I didn’t need to worry about that because there was now a whole team of people fighting for Pat’s recovery, that I could relax and not carry that stress with me, and know that I was doing all I could for him.  I felt reassured that everyone was doing their best for Pat, however, it was also clear that we would have big mountains to climb along the way, as Pat wasn’t medically stable yet.

From my Journal, April 22/13 – I am starting to feel hopeless. I see you making progress with physio and getting stronger, but then hear that because you are not medically stable you aren’t an appropriate candidate for rehab. I don’t have unrealistic expectations, I don’t expect you to ever work again, or even to walk independently again. I know that you will have several disabilities and that things will not ever be the same as they were before. My hope would be that you would get well enough to be able to come home and live with me again, even if you are in a wheelchair and need me to care for you. But I am afraid that we are getting closer and closer to a different result, and that you will need to go into long term care. I am trying to do my best to make sure that doesn’t happen, but as time goes on and things move so slowly, and I see how difficult it is to keep your medical issues under control, I am beginning to lose my hope of ever having you back home.

After three weeks, I made the decision to move back home and drive into Edmonton each day, to try to find a routine that would work in the longer term, since Pat would be staying at the Glenrose for an initial four weeks and I would then find out where we would go from there.  As we were moving from the early stages of his awaking from the coma into what was now the opportunity for recovery, I was realizing that this wouldn’t be like other stories I had heard, that he wasn’t going to come back to me the way I had hoped.  As I became more involved in his rehabilitation exercises and daily activities, I began to learn what it was going to be like to live with his disabilities and that the further we moved along the path of recovery, the sooner the window for the most noticeable results would close. I wasn’t sure anymore that we would have a good end result and with all the driving, along with emotional stress, I was dealing with chronic grief and exhaustion that left me heading towards hopelessness while trying to keep from falling into it.  I had to keep reminding myself that we were only a few months in and this was going to be a long road.

From my Journal, April 23, 2013:

I came home to Mayerthorpe tonight and will drive back and forth to Edmonton to see you for a few days, then take a hotel again for the weekend. I am so lonely here without you. I am not alone, Kate is here, but nothing seems right because you are gone. Everywhere I turn I have memories of you and seeing your own things around the house makes me ache for you. I thought it would be good to come home and sleep in my own bed for a few nights, even though driving will be tiring, because at least in the evenings I would have some sense of normal, but I just miss you so much. I’m trying to be strong and to accept things as they come. But at the same time I question why we have to lose so much, why we can’t just have some of it back. Is it too much to ask after everything we have lost, to just be able to live in the same home and share our time together as it is now, instead of having to be separated from each other for the rest of our lives? The pain of that is just so heartbreaking. It seems like a cruel twist, that you should survive this tragic accident and go through so much recovery, only to end up in a facility and not even be able to come home with me.

It is very hard for me to stop myself from feeling resentful and angry. Yes, you have survived and come a long way so far, but for what quality of life if in the end you can’t come home? It will be awful to go on for the rest of our lives, visiting each other in a facility and each going our separate ways afterward. That isn’t how it is supposed to be. Of course I am glad you survived, I just don’t understand all this pain and suffering if we can’t be together at the end of it all.

Chapter 11: TBI – 3 Steps Forward, 2 Steps Back

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There were some nurses who, during this time, were working hard to help get Pat physically strong enough to be ready for rehab, even though their main job at our hospital was acute care. They were proactive in getting him dressed in regular clothing, teaching him to use his own muscles to help move his body around, and using a mechanical lift to get him out of the bed and into a special chair so he could sit up for increasing lengths of time, which allowed us to walk him around a bit and give him a chance to leave his room.  At first he couldn’t tolerate it for long, but he got more and more comfortable with it the more we did it. They began to track his progress because one of them was familiar with the application process for rehab and she was getting necessary information and then trying to make sure Pat was learning what he needed to learn to meet certain requirements for acceptance.  We felt supported and encouraged in our efforts to get him strong enough to have a chance at going.

His own doctor was away during this time, but his replacement was on board and very proactive as well, making sure we knew what Pat was entitled to from the medical system, and advocating to make sure he got it.  When I met with him to ask how to make connections for Pat to be assessed for rehab, I found out he was already planning to be in touch with the Glenrose. After that he regularly contacted them for advice on Pat’s brain injury care and on preparation for him to get an opportunity to have their help and, like his regular doctor, held onto the goal that Pat would get everything he needed for his best chance.

Pat was starting to discover things on his own, and one day when we went to visit, we stopped outside his door to watch when we noticed that he was trying to pull himself up in the bed.  He had swung his legs over the edge and was trying to pull his upper body into a sitting position.  His nurse walked by and saw as well, and she told us he had been restless and moving around a lot, so we all went in to where he could see us and he wanted to sit up.  She helped us get Pat sitting up on the bed and we sat with him for a while so he could look out the window; he said he felt great and comfortable.

He heard the nurse mention that his “lines” were going straight back and wanted to know what the lines were, so we showed him the IV in his arm and the gastric tube in his stomach.  He hadn’t noticed or asked about them before.  It seemed to be a significant incident and the nurse noted it in his chart.  She was glad that we were there when he had tried to sit up, because without physio approval, they couldn’t do that kind of exercise with him, but they could allow family to do it if we chose.

I don’t remember for sure when he first made the connection between my face, my name, and that I was his wife, but eventually it was obvious that he knew.  It was clear all along that he knew me and was most comfortable and settled when I was with him, and I think he always knew on some level who I was and where I fit into his life, but connecting all three things took some time for him. During this time he began to vocalize the connections more clearly.

His overall health was still volatile, nutrition needed to be managed and changed here and there to keep his electrolytes balanced, and he still wore a brace to protect the neck fracture that was taking its own very long time to heal.  He continued to have good days and bad days and therefore so did I.

From my Journal, March 20, 2013:

Each day I get up and hope you have a good day and I do what I can to help you and each night I come home and miss you so much it breaks my heart. My heart is so heavy and I feel very lonely. I want to be with you and I want you to be OK. I want everything to be the way it was before the accident, but I don’t think it ever will be and I miss that. I love you so much and I hang onto that every moment. Whatever happens I will always love you.

One weekend near the end of March we noticed some significant changes that were encouraging and showing us that Pat was becoming more alert.  He was speaking more clearly, remembering a few short term things and starting to express himself in ways that were normal for us to see and hear.  Kate returned from a mission trip and when he saw her he remembered that she had gone to Jamaica to “work for the church”.  He seemed to remember things that had been discussed in his presence and could say that he had been in a car accident and that firemen had rescued him.  When we got him up and into the wheelchair, he wanted to go home and each time we took him outside he asked for us to bring the car around.

When visitors from work came he was able to make connections and we saw him smile and laugh about old jokes he had shared with them.  It was good to see how different people stimulated different memories for him.  He recognized several people from our church who came to visit which made us feel good about his developing ability to put things together from his past.

At the same time, it was hard for me to feel happy about small gains and still be so sad about the huge losses.  There were so many mixed emotions watching him learn, and start to notice things about himself, and I tried to keep my own pain away from him so he only saw good things and never knew my suffering.  I would later learn that all along he was very intuitive about my state of mind – when I was happy and when something was wrong – which I had learned from others wasn’t necessarily the typical ability of someone with a serious brain injury.

From my Journal, March 31, 2013:

When I visited you tonight I was hugging you and rubbing your back and I started to cry but I was trying not to let you see. But you could tell and you asked me what was wrong. I try not to let you know how upset I am about all of this so I wasn’t sure how much to say, but I told you that I missed having you at home and I just want you to get better. You seemed to understand and I told you not to worry about me, and that you are getting better all the time, and we just have to be patient. I guess that the more aware you become the more you will see my pain and I don’t want to upset you.

On April 2nd we got word that Pat had been accepted to the Glenrose and would be taken two days later.  It was news I had been waiting for but when it came I was apprehensive because I didn’t think he was actually ready to go and had trouble believing it was going to happen.

They transferred him on April 4th, I packed up and moved into the city to prepare for the next leg of our journey, and the first day we were there, it became clear that my initial response was warranted – this wasn’t a typical situation, Pat was not well enough to be there, did not meet their admission requirements, and he had only been accepted on a trial basis by a doctor who wanted to try to help him get well enough to eventually go to Halvar Jonson in Ponoka, but it didn’t look good.  In one short conversation that first morning, my hope went from higher than it had been in weeks, to a crushing low that left me feeling isolated and alone, unable to imagine the next step.  Pat was unaware of the whole thing and simply lay in his bed, giving the only responses he could to questions that were determining a course of action, and they weren’t good enough.

Chapter 10: TBI – Waiting with Uncertainty

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At the time Pat was transferred to Mayerthorpe, he was unable to sit up, had no core muscle strength, no short term memory, and remembered only bits and pieces from long ago.  He recognized us, but had basically little to no recollection of the previous 28 years we spent together, and making the connections from faces to things like wife, son, daughter were difficult. He could recall prayers and songs that he had known, so we tried to sing with him lots to get his memory working on something that was triggering it.

His right arm, broken in the accident, had remained stationary for the entire coma, so now had no muscle strength.  He continued to wear a neck brace while his fracture healed – it would be months before it was safe to remove it.  His legs were moving but he was often unable to distinguish between them enough to respond to a request to move either the left or the right.  He was not oriented to time and place; he was vocalizing needs, but had no understanding of what had happened, where he had been or where he now was, why he wasn’t getting up, why he couldn’t eat or drink (he had a gastric tube for food and water that he was unaware of) or anything else that was going on.  He couldn’t hold onto information given just seconds before, so I found myself answering the same questions several times within only minutes, most often when he asked for water.  He had always been a huge water drinker, so the fact that he was getting water directly into his system didn’t compute for him and all he wanted was water in his mouth.   I don’t remember him asking for food, so I wondered if part of the fixation with water was a connection in his brain to a familiar habit.

When we got to Mayerthorpe Hospital, he did recognize his doctor who felt that his responses were better than they had expected from the notes they received, and he arranged for the physio therapist to come in right away to check on him.  She asked about my schedule and I assured her I would be available to help with whatever I could and we met the next day so she could show me things that I could do with him on my own to give him further exercise apart from the times she worked with him.  She had no predictions about recovery but was willing to work with him and do what she could to get him started.

I tried to remain hopeful that this time in Mayertorpe would give Pat the recovery he needed to be a candidate for rehab, and being back in my own home was a mixed blessing because he wasn’t there. I spent most of every day at the hospital with him as I had since the accident, to help keep him settled and to try to help him get stronger physically and mentally.  I knew that whatever happened down the road, I had to fight for him to get every possible chance at recovery, so I would always know I did my best for him, and wouldn’t have to look back and wonder if I missed something.

I avoided being in public as much as I could because it was difficult facing people with the same questions over and over again while I was still so volatile emotionally, and I found that many people became focussed on the fact that he was back in Mayerthorpe so I must be “happy to be home”.  I was anything but happy.

From my Journal, February 22, 2013:

Missing you terribly each day and night, but hoping for good news eventually that you will go to rehab. I feel like I am in mourning, because I have lost you as I knew you, and there is no way to know how much of you will come back to me. So many people don’t understand, even though they do try to be supportive and kind. No one can understand if they haven’t felt this themselves. Sometimes I just need to cry so hard and get it out, because I have lost you at this time, and people try to make me feel better by telling me everything will work out, and that I have lots of support, and that I won’t be alone, pointing out progress you have made etc. But the fact is, none of those things comfort me in that moment because I DON’T HAVE YOU. I am thankful for all their help, but right now what I need at those times when I break down, is for the people around me to just listen and acknowledge the pain, without trying to take it away from me, because they can’t. Then once I have cried and relaxed again, I can feel stronger to go on with the day. But I need to be able to get it out, sometimes daily, or the pain builds up and makes me so unhappy and stressed that I just want to scream.

I began to notice the exhaustion I was feeling each day and we suspected it was because for the first few weeks I was running on adrenaline and now that I was home again my body was giving in to the exhaustion that had built up all along.  I was sleeping through the night but waking up sad as I pulled myself out of bed to start all over again.

Over the next while, Pat was able to identify himself and family members in photographs, identify colours, read the clock on his wall to know what time it was (and watch it if he had been told one of the nurses would be back in a few minutes) and I found out by accident one day that he could still read.  I had taken in a child’s book, at the suggestion of a friend, hoping to get him to point out pictures of simple objects, and when I opened it up in front of him, he read the title on the page: A is for Apple. I was more excited than I was when our children learned to read because that is expected as they grow, and nothing could be “expected” with Pat.

There were good days and bad ones; sometimes Pat didn’t respond to me, other times he interacted with me for a few minutes at a time and drifted off to somewhere else.  There were difficult times when he would be hollering and we couldn’t reach him or calm him and other times he would be content to sing with us or just listen to us talk.  The nurses said he was much calmer when I was there compared to when I was not, so at least that gave me some sense that I was making a difference.

Chapter 9: TBI – The Unsung Heroes

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Nurses and doctors are surely life savers and have things covered on the front lines, with their gifts of knowledge, experience, and ability to use their intellect for our benefit in times of crisis.  Many of them also offer their time and counsel when we are distressed, and help us sort out the things we don’t understand.  Therapists in all disciplines – physical, occupational, speech, psychology – come together as a team to help people rebuild their lives from the ground up after an unexpected event takes so many things away.  They have patience beyond imagination and their specialized skills are a necessary component in any recovery program.

But I had a general idea that social workers helped make sure children had safe and healthy homes, handled adoptions, and did some counselling on the side. What I had no knowledge of before this experience was that from start to finish, they would be there beside me, to advise, to advocate, to listen, to encourage, to support, to provide me with necessary information I didn’t even know enough to ask about, and finally to make sure everything that needed to be done was done.  I think they are often unsung heroes in the battle for sanity and some sense of safety in the midst of tragedy, quietly working, often behind the scenes, to help all the other parts come together smoothly.  They are perhaps as close to the front lines as anyone else, but sometimes not as easily seen or appreciated because their work doesn’t always produce the clearly visible results and progress that we notice in other areas.

Obviously, this was all new to me.  Not only was my husband unable to be present to me – the one who always kept me calm when I was scared or worried, assuring me everything would be OK – but I was now literally responsible for his well being, and for all decisions to be made on his behalf at a time when I myself was most vulnerable.  There is no training for that moment when you find yourself in a situation that you could only responsibly prepare for ahead of time by signing paperwork and filing it away safely, hoping you will never need it.

Thankfully we had taken care of all that the previous year, trying to anticipate what might be necessary in the event of an unexpected tragedy.  It was all in place and I just had to enact it.  But you don’t think ahead of time about what that’s going to feel like, because you can’t know the desolation of actually handing over a personal directive, or enacting a power of attorney including a statement certifying that your loved one is now incapacitated and no longer able to do anything for themselves, until you have to do it.  You just can’t know the daunting tasks that you will face at a time when you are least emotionally equipped to face them, when they are real and your life as you knew it is over.

Right from day one there was a social worker there, approaching me to offer help.  She wanted to meet with me to make sure that I was getting any help necessary, and she had lists of things that needed to be taken care of that she went through with me to make sure that I had either prepared to do them, or was already doing them.  She offered insight and counsel and helped me with forms I needed to sign.  She answered questions and was a liaison between myself and the doctors in the I.C.U.  She checked up on me every now and then if I didn’t approach her, just to make sure of how I was doing.

When Pat was transferred to Mayerthorpe hospital, it wasn’t long before a social worker came to his room to talk to me, offer me support information, and encouragement, and in this case the person had actually worked at the Halvar Jonson Centre for Brain Injury in Ponoka himself, so had a lot of experience in brain injury rehab and family related issues.  He gave me hope and options available for possible future circumstances and assured me I could contact him any time I needed help with anything and that he would check in with me on his regular trips to Mayerthorpe.

When Pat was eventually transferred to the Glenrose hospital, the social worker was a member of his rehabilitation team. She double checked on our previous paperwork, made sure things that weren’t able to be done early on because of date requirements were then put into place, she was a liaison between myself and the rest of the rehabilitation team, she was our advocate, and she became my counsellor, offering guidance, encouragement, and a safe place to fall at those times when things were just too much to bear.

In Ponoka, I again found solace and comfort in the help and guidance of our social worker.  She triple checked our paperwork, and fulfilled many of the same duties as the others before her, but as our stay there was the longest of all, she became a friend.  Successes were shared and many tears were shed in her office, which was open to family members and patients any time, and I know without doubt that I wouldn’t have made it through with my mind still in tact, if it hadn’t been for her presence there.

She brought together the necessary arrangements when it was time for Pat to be discharged, and even once we were back in Mayerthorpe for the final leg of our journey, she was still helping with the transition from a distance, making sure that Pat and I had everything we needed.  When we left Ponoka, the goodbye I had to say to her was the hardest one of all.  I still miss her.

Prior to this experience, I wondered how anyone could be a social worker, dealing with broken families and suffering children every day – my original idea of that job –  and by the end of it, having known her, I felt that if I ever had the inclination to go back to school, I would want to be a social worker like her, in a place like that, where every single day just her smile or a kind word could make such a difference to broken hearted people.

Chapter 8: TBI – What They Do Tell You and How

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Just as I was getting used to being on the ward and settling in to what I thought would be another long process with good results at the end of it, a resident came into Pat’s room just twelve days after the move from I.C.U. to do a test and I was told that the doctor in charge was getting ready to move Pat out to Mayerthorpe hospital.  No warning, no discussion or explanation, just the fact.

When he left the room, I cratered because I had assumed he was still in a coma and couldn’t imagine how they could just send him off to Mayerthorpe in that state.  I knew that the hospital in Mayerthorpe wasn’t equipped to deal with brain injury or a coma and I was scared.  When the nurse came in I asked her about it, and she said it wasn’t a coma anymore, that Pat’s eyes were open a lot, that he was aware when others were in the room and that he was trying to communicate, all of which indicated he was technically “awake”.  I was confused because no one had really been keeping us updated about his coma status, and going through the delirium it seemed that it was just taking time for him to wake up.  No one told me he was now considered fully conscious.

My cousin explained that Pat was out of the coma but fluctuating now and only gradually regaining full consciousness.  I was happy to know that the coma was over, but apprehensive about what was going to be next because even though he was now awake, it was very much unlike what I had hoped for all along; he was definitely not OK.

I was advised by a friend who had gone through a similar experience to be proactive in contacting Pat’s doctor in Mayerthorpe to let him know what was happening and ask him for input.  He had taken the time to come and visit Pat in the I.C.U. and left me his cell phone number so that I could contact him if I needed to.  When we spoke he said that ideally Pat would go straight to a brain injury rehab program, but it might take longer than we wanted, and he didn’t sound too sick to be cared for in Mayerthorpe if that’s what was decided, but he stressed his preference that he go from the U of A right to the Glenrose.

On my cousin’s advice, I requested a family meeting with doctors at the U of A to get more information, and he gave me suggestions about specific questions to ask about follow-up care and a discharge plan if Pat was being sent home, to ensure the continuity of his care.

While we waited a few days for paperwork to be processed, Pat showed small signs of improvement.  He was making statements about wanting to get up and wanting to walk, he called the kids by name and remembered some lines from familiar songs when we sang them.  I waited to hear him say my name.

The occupational therapist explained to me that they wouldn’t have had Pat assessed for admission to the Glenrose because he wasn’t yet responsive enough to be able to participate in the rehab program, and if an assessment is done and a patient turned down, it is then harder to get them reassessed.  But if he went to Mayerthorpe hospital and recovered more, an assessment could be arranged later on from there.

The family meeting didn’t happen before we left, but I did get a chance to speak to individual doctors.  The neurosurgery senior resident was patient and kind in explaining things to me.  He confirmed that beyond being out of the coma, the extent of damage wasn’t known and there was a long way to go in recovery, but he felt Pat was stable enough to be discharged to Mayerthorpe. Detailed notes and continuing care plans would be sent, and he assured me they wouldn’t be making the transfer if he didn’t feel that whatever care Pat currently required could be done in Mayerthorpe.  Of course he had to mention that if Pat didn’t improve, there were long term care facilities.  That was the path I couldn’t travel down in my mind; it was the end result I couldn’t bear, and the one that my cousin and I had put aside so I could focus on other possible outcomes.

But the next day, when another doctor came in to see us – one who had worked with the neurosurgeon but had not personally met us – she was business-like about the whole thing and presented it as if it was just a matter of course that Pat wasn’t a candidate for rehab, that “maybe” later on he would get to a place like Ponoka where they work with people long term and, if not, there were long term facilities for him.  Same information, different presentation, and she left me feeling like they were just giving up on him.  It was as if she was talking about the other things just to get to the long term care part.  It kept coming up no matter how hard I tried to force it away from me. I was choking while she talked and as soon as she left I just cried.

From my Journal, February 19, 2013:

I just cried and cried beside your bed, broken hearted at the thought of never having you come home with me again and of visiting you in some facility for the rest of your life, not being able to help you get any better than you are now. I think you somehow knew I was crying, because you were looking at me and you kept squeezing my hand. I usually try to cry away from you so you won’t be scared or upset, but today I couldn’t help it. I just miss you so much and I want you back with me. I wonder if you know there is something wrong – sometimes I think you must know, because you want to get up and you can’t, you see and hear nurses in your room, working on you and talking to you, so I’m not sure it is a bad thing for you to see me cry, because if you already know something is wrong, it won’t surprise you.

I went out to the car and had a huge melt down. I screamed until I could breathe again and then I just cried my heart out. This hurts so much I can’t even describe it in words. I still can’t believe this is all happening.

Tonight when we came back, you were calm, and when I prayed the rosary you tried to pray along with some of the prayers – first time I have noticed that. We sang the Our Father a couple of times too. And when I played music for you, you started to sing along even before I was singing. When I left for the night, I asked you for a hug and lifted your arm so I could get mine underneath, and you moved yours across my back and rubbed it a bit so I don’t know if you were doing it to hug me on purpose or not, but it felt really good. I love you so much.

The following day my cousin and I talked through what that particular doctor had said and the way it made me feel, and then focussed again on hope. He also helped me to see the good things about Pat being in Mayerthorpe: him having people around that he knew to help stimulate his mental progress, and me being back in my own home instead of displaced.  He had helped me all along to be hopeful while not dismissing the realities in front of me, and to just keep the latter aside in my mind while I focussed on the signs of progress and possibilities for better outcomes that were not yet ruled out. So I tried to see the move to Mayerthorpe as a temporary thing in hopes that Pat would recover enough in time to be transferred into a brain injury rehab hospital.

That afternoon I got a call from Pat’s doctor in Mayerthorpe to let me know that the doctor who had spoken to me earlier – the one who upset me – had recommended to him that he begin paperwork for placing Pat into long term care and he had insisted she speak directly to me about what she was telling him.  He assured me that he had no intention of filing anything until he got Pat back in Mayerthorpe to see for himself what was happening, observe him for a while, arrange physio for him and see what could be done to help him get better.

That evening I spoke to the senior resident again and he explained that sometimes even before paperwork is processed, a person has improved to the point of no longer needing to go to long term care and that some who are there can still improve and perhaps eventually move out of it, so his way of presenting it was much more encouraging, less final, and I was grateful.

The care Pat received at the U of A was probably the best available anywhere, and they certainly had the expertise and experience to do everything they could for him.  I never doubted that he was in the best place he could be for that time.  But I learned that the information presented to me was often short and sweet, with little consideration for how it would hit me, and that if I wanted to understand things beyond the initial conversation, I had to search people out for explanations.  Somehow I couldn’t imagine my cousin, who had been helping me all along to understand, ever making a patient or family feel lost and scared for lack of compassion.  I would learn as I went along that there were indeed more doctors like him than not.  From there on I took more control and became grounded in my position as Pat’s advocate, knowing that I had behind me the support of his doctor in Mayerthorpe who would help me fight for Pat to get whatever he needed.

Chapter 7: TBI – What They Don’t Tell You

taking a break during a walk along the seawall in Vancouver

Taking a break during a walk along the seawall in Vancouver

Some medications would improve one part of Pat’s system and then cause another to react negatively, requiring adjustments or changes that caused other side effects and the day to day ups and downs dragged me through one emotion after another.  A tiny bit of hope here, a crash there.  I didn’t know at the time that this was just the beginning of the emotional roller coaster I would ride for the rest of his life as one carrot after another was dangled in front of me only to be snatched away as if I was part of a cruel game.

Had it not been for my cousin – a doctor in Vancouver with many years experience in cardiac I.C.U. – there are many things I wouldn’t have understood.  There are typical procedures and treatments, body system responses and reactions that are expected during the time after a trauma, and for doctors and nurses these are routine.  But for us, as family members, they are completely foreign and difficult to piece together.  So having regular contact with my cousin, who was able to explain whatever I was being told and how Pat’s body was responding and reacting to certain drugs or procedures, made the situation more clear and I was able to start looking at his recovery in blocks of time, rather than placing too much emphasis on each day’s specific events.

He was able to give me reasons for the way particular things were handled or explained to me by the I.C.U. staff, and warn me ahead of time of things that could happen as a result of Pat’s metabolic acidosis, things that might alarm me but were normal treatments.  And he explained what Pat could experience – and along with him the rest of us watching – coming out of a coma that had lasted so long, that it could be frightening for him and for us.  That in itself was a warning I would have been lost without.

Pat’s condition and response levels continued to fluctuate day by day but once certain things looked good enough, they would make a change in treatment, gradually weaning him from the respirator and moving the feeding tube from his nose to a more permanent plug in his stomach suitable for long term use.  After nearly a month in I.C.U., he was considered well enough to be moved to the Neuro ward across the hall and it happened suddenly, at least that’s how I experienced it.

The move was upsetting for me because I had grown used to the I.C.U. atmosphere (they called it ICU-itis), the staff, the routine, and the fact that he had a nurse with him twenty four hours a day.  On the ward, there were six patients for every nurse and I was very nervous about him ever being left alone in the room.  I had to keep telling myself that if the neurosurgeon who had cared for him all this time deemed it safe to move him, then he would be safe, and by the second day, after meeting some of the staff and watching their routines, I felt more comfortable.

Pat was starting to wake up, although no one ever told me he was out of the coma. I still don’t know when it was actually “official” but he started to respond in very small ways over the next three weeks.

From my Journal, February 5, 2013:

You were very restful most of today and I tried not to disturb you too much by talking or hugging you for long periods so that you could be peaceful. Sometimes you are agitated and I don’t know if you are in pain, frustrated, or just trying to move around, but your breathing gets faster and you seem uncomfortable so when you are restful, I feel better because you look calm.

I had another bad melt down today. I am getting worn out emotionally and not doing a very good job of being patient in the day to day waiting. I miss you so much. I was at Michael’s and when he came home I was a mess so he spent the evening with me at the hospital and then we had a late supper together. I don’t know what I would do without the kids right now. They have been so awesome in taking care of me, listening to my anxious thoughts and being there for me when I can’t stop crying. You would be so proud of them.

I haven’t had any sign of response from you the past three days, but tonight when I was leaving and you were agitated again, you seemed to calm down for a little while when I kissed your face and talked close to your ear. Michael noticed too. That made me feel good. I know this will be a slow process, but even a tiny little thing once in a while gives me something good to hold onto until the next time. I have to believe you will wake up.

He began around this time to show signs of delirium which would have sent me over the edge if my cousin hadn’t warned me about it and explained that while it would be disturbing for both Pat and our family, it was a good sign because it meant that he was waking up.  It was no longer an unconscious state, but a stage between that and becoming conscious. The fact that I had some advance warning about what might happen didn’t prevent me from experiencing my own distress at not being able to prevent his.  Again, I held onto hope that once we passed through this stage, he would be awake and on the road to recovery, that he would be OK.

Pat would get agitated, which escalated into moaning and hollering – sometimes we heard things like “help me” or “get me out” – trying to move around on the bed and requiring restraint.  His eyes would widen to a horrified stare at nothing in particular, he would cry, thrash, yell, and nothing calmed him.  I would be there holding onto him, talking to him, trying to reach him, and getting no response. And then, suddenly, he would hear my voice, and I could get him to look right at me and for just two or three seconds he was there with me, calm, breathing slowly, listening.  But then he was gone again.  It was so obvious, the change in his facial expression in those moments from blank and disturbed to calm and aware.  This cycle went on and on for days.  Each time I got a few of those precious seconds I would try to tell him everything I could think of before he was gone again, including reminding him of important things – as my cousin had advised me to daily – that he wasn’t in the car anymore, that he was alive and safe in the best hospital, assuring him that his family was safe and that no one else was hurt.

It was during one of the longer sessions, when Pat’s distress was escalating to a higher point than usual where I was unable to reach and calm him for even a few seconds, that I was approached by a resident doctor who needed my instructions about his code level.  Right there, right then, in the middle of an already frightening moment, I was being asked what they were to do about resuscitating him if the need arose.

From my Journal, February 11th – You were very agitated again most of the day but there were no moments of awareness like on Friday and Saturday, so it was hard to watch you go through such discomfort. Your breathing and heart rate became a concern because you were having such a hard time without any calm breaks, so they called in a resident doctor to assess you, and she ordered a chest X-ray and blood work, along with an ultrasound of your legs to check for any signs of blood clots, in case that was causing your difficult breathing. After she left, another resident came back in to talk to me about my wishes regarding your resuscitation orders in the event that something happened and they had to revive you or put you back on a respirator. She explained that people can’t go for a long time with such a high heart rate and the accompanying breathing issues, and wanted to confirm that you would be on full resuscitation, which of course I confirmed.

But when she left I cratered. The whole discussion just about finished me off. Thankfully Michael was there and he helped me to see that the questions probably should have been asked from the beginning but there must have been a blank on your record and they saw it and wanted to make sure they knew my wishes ahead of time in case of any serious concern.

Eventually the delirium seemed to pass and things got calmer.  Pat started to speak and respond in simple ways and while we had no idea how much he understood, we could at least take comfort in knowing that we were moving forward, but towards what, we had no way of knowing.

Chapter 6: TBI – Music, Dreams & Memories

Pat&Ann

I read something profound recently that fits right here so I will try to paraphrase it the best I can.  It suggested that a light gets turned on when we’re born and it shines on throughout our lives, and that if all goes well, nothing gets in the way of the light.  But if something bad happens, part of us is trapped at that time, forever alone in the dark, still alive, while the rest of us moves on.  It makes sense to me somehow.

I don’t know exactly when I noticed that, for the first time in as long as I could remember, the music in me was gone.  I couldn’t sing.  I couldn’t listen to anything.  I had lost my passion.  It makes sense, I guess, because music has always been so connected to my heart and soul, and the tragedy of Pat’s accident and ongoing condition disconnected many things inside of me.  During the early days after his accident, when I was still able to hang onto the possibilities that hadn’t yet been taken away, I tried playing the piano a couple of times in a lounge just outside the I.C.U. but only in hopes that Pat might hear it.

I remember the night I heard a particular song on a television program and I realized by the end of it that it was the first thing I had been able to actually listen to from start to finish since his accident.  It spoke to me, especially the chorus, and I decided to make it our song; as it turned out, I would sing it to him every day for the remainder of his coma, usually putting one side of my headphones into his ear so he could also hear the music:  “…I have died everyday waiting for you, darling don’t be afraid, I have loved you for a thousand years, I’ll love you for a thousand more …”  Strangely, most days I was able to sing it to him without crying too much.  Months later I played it for him and he seemed to know the tune, which makes me believe he must have heard it while unconscious, because it wasn’t a song he would have known before. To this day, when I start to sing it, he usually sobs.

Gradually, over time and seeing the need for Pat to have music, I was able to play and sing for him, and in situations with other people when he was there to enjoy it.  I started keeping one of my guitars in his hospital room just a few months after the accident because he began asking to sing almost daily and still does. I can sing anything for him and rarely break down because I am able to disconnect myself from the music and focus on his enjoyment of it.  But I no longer have the desire to play anything for myself, and I still can’t listen to music just for the sake of listening, unless I’m with Pat and we have it turned on for him.  Then it has a purpose for his entertainment, and when I’m with him, I’m able to hide my own emotions most of the time so that he won’t see my suffering, much like a mother shields her child from knowing the truth about her pain.

From my journal, October 16, 2014:

I sat down to play the piano while I was home alone today.  I was in a good mood and just thought I should.  Of course it opened up a door I didn’t want to go through, and I thought if I just sat there and cried it out, I would move forward through it and be fine.  I did feel the music again as I played, but it will never be the same and the experience didn’t fix me.  I haven’t done that since, but I probably will again eventually because I know that I need to live some kind of life of my own.  I just don’t know how.

I’ve tried a few times to listen in the car when I’m driving by myself but it rarely stays on.  Most of it brings pain and feelings to the surface that I can’t bear.  I’m beginning to handle some of the bouncy tunes with no deep meaning in the lyrics, and last Christmas I actually tolerated our regular Christmas repertoire at home for the most part, depending on the day. Out of necessity, I have learned to force myself not to feel certain things, for my own survival.  As the quote above expresses, I know there’s a part of me still alive but trapped forever at that tragic moment, alone in the dark.  Maybe that’s where the music is too, and maybe that’s why it hurts so much because once I open up that door too many other things get through it.

Your eyes are wide open, you are waking up, talking to me, holding me, I can feel your warmth and your love and the peaceful relief that you are yourself and everything is going to be okay…I’m startled awake, my eyes opening to the darkness of the room I temporarily sleep in, and the tears flow time and again, dream after dream.  Nothing has changed, you are still in a coma.  

The dreams changed over time, sometimes they were about Pat waking up and being fine, and then I would wake up and realize it wasn’t true and the sadness was unbearable. Sometimes they were frightening flashbacks to the night I saw him zipped up into the padded bag waiting for STARS to fly him to Edmonton. Once I woke up suddenly after seeing him on that table in a dream, his eyes wide open looking to me for help, knowing I couldn’t do anything.  I can still see his face from that dream.

There are still flashbacks, moments when my mind plays through the whole ordeal from knowing he was too late getting home all the way to the ICU in a matter of seconds: the wrenching pain in my gut, the shortness of breath, the fear, the panic, the anguish, it all comes back along with the memory.  There will be no end, no erasing this memory.  It comes to me each time I hear a siren, each time I see the STARS air ambulance, each time I hear of a car accident nearby, each time I drive on that same highway from Whitecourt to Mayerthorpe and make that same left turn, unsure of my own judgment and never feeling confident that there really isn’t any other vehicle coming towards me. It is that part of me that is trapped in that space of time, alone in the dark, but still alive.

Chapter 5: TBI – The First Trip Home

Enjoying a family game, acting out a clue

Enjoying a family game, acting out a clue

I heard someone on TV last night share a quote about grief that went like this: a single person is missing for you and the whole world is empty.

There was a point in my journal writing that I noticed I was no longer just telling a story about Pat; I was actually talking to him, in my thoughts, in my words, as if I was thinking that someday, when he was better, when he was rebuilding his life, he would be able to read it and know all that had happened to him and to me, to our family.  I knew he wouldn’t remember most of it, if any at all, and I wanted to be able to share it with him down the road when we were back home and had adapted to whatever was coming.  That day would never come.

From my Journal, January 20, 2013:

I had to make a trip to Mayerthorpe to pick up my car today, which meant I had to leave the hospital for longer than I wanted to, but it was necessary. I thought I could take care of whatever mail there was at home, deal with some bills and be back on the road in an hour or so, but it took way longer than I planned. Then leaving Kate there was very emotional and I knew I was going to get back later than I wanted to and I fell apart. She had been having stomach issues since the day before and I felt so badly for her but I couldn’t do anything, and I didn’t want to leave her alone but I had to and she was crying and I was crying and I drove to my parents’ house to pick up Michael because he was driving back with me. I knew if I went in at all I would be a mess but I had to say hello and of course I lost it. Michael was trying to hold onto me and help me but I just couldn’t stop. My dad was holding onto me and I think I had some anger and frustration to get out because I couldn’t stop crying and I started to yell and scream as hard as I could until my throat was raspy. Then it seemed like I was able to breathe better. I just need you to come back to me.

I didn’t want to go home.  I knew what walking into our house that first time without Pat was going to do to me and I didn’t want to leave Edmonton where he was and be that far away from him. Michael had come out with us so that I wouldn’t have to drive myself back alone, and once it was time to head back we all faced the pain of separation.  It didn’t matter that they were adults, they were suffering and grieving along with me and we depended on each other.  Michael was trying to take care of Kate and I and being together gave us all comfort.  But I had to go, and it was more painful than I had imagined.

I fell apart at my parent’s house when I arrived to say hello on the way out of town, because the unfairness of it all and the frustration I had been choking down came out.  Pat was supposed to be there with me, he was supposed to be home, safe, forever.  It wasn’t supposed to be like this.

Kate started having stomach problems as the day got closer because it meant that she was going home to stay – alone.  We had all been together in Edmonton for two weeks and she was agonizing over having to leave and go back to work.  She didn’t want to be away from us, and she knew she would be on the front line back in Mayerthorpe, where our family tragedy was now public knowledge.  She feared being bombarded with attention from well meaning people who didn’t understand how badly she needed her privacy to be respected, and facing random inquiries made out of curiosity.  Her fears became reality from day one onward. Thankfully, there were a few people who approached her just to give her a hug and ask how she herself was doing or if there was anything she needed, rather than to ask for information, and those kindnesses were very much appreciated.

I’ll never know what that was like for her, because by the time I eventually got home three months later, she had already borne the majority of it herself, and I was able to hide from most of whatever was left because I didn’t have to go anywhere but the hospital unless I chose to do so, and those infrequent trips to public places were hard enough.

Once I got back to the city that night, I would face my first of what would be many nights living away from home, on my own, and each of the kids would face getting back to their own work schedules and continuing to help me as much as they could, while dealing with their own pain.  After being in our house and experiencing the loss of peace that I use to feel there, I knew that nowhere I stayed would be “home” for me now because my heart – broken in pieces – was held by Pat, missing for me but still alive.

Chapter 4: TBI – “If”

2010 - Lonsdale Quay in North Vancouver

2010 – Lonsdale Quay in North Vancouver

Spending most of the day, every day, in the I.C.U. with Pat meant that I was aware of every blood test result, every time they tested him for responses, and I reacted in some way to each little thing that went on, asking as many questions as I could to keep myself in tune with whatever was happening.  There were times that I was asked to leave because they didn’t want me to see certain things, concerned that I would find them difficult, but after they got used to my presence and knew that I understood certain procedures, they eventually let me stay.  I remember the first time I questioned why I couldn’t stay while they checked him for responses and was told that sometimes they have to pinch and prod and some people think it’s mean.  I assured them that if they thought kicking him in the butt would wake him up and bring him back I would gladly do it myself so they could go ahead and do whatever it took and I wasn’t going to say anything.  I might have shocked them, but after that they let me stay.

I learned that different nurses had different ways of explaining things, and that some paid more attention to details and family needs than others who, while still doing their jobs carefully, missed the fact that we were suffering too.

From my journal, January 10, 2013:

I found out today that the answers I get from nurses depend on the questions I ask and how they are asked. I have been of the understanding that Pat is being kept in a coma by sedation because of trauma, but today it was explained that it is not an induced coma, but that he is in a coma all on his own. The sedation is administered to keep his breathing from becoming erratic. Therefore, the state of his awareness that I witness when they interrupt sedation regularly to “wake him up” and assess his responses is his actual state of consciousness. This was a devastating thing to hear as I have been holding onto hope that once sedation is completely taken away, he will be able to be roused to a conscious state.

Also, they said that there is a word used in his file that indicates things might take longer because in a high speed collision the brain is often shaken around to the point where certain things can be torn, possibly swell, and then need to heal back together, somewhat like what happens when a person has a concussion. So I have been trying to focus on the “small bruise” that was first mentioned to me and now realize that there could be more damage unseen…

Last night, after five days of holding his hand and trying to stretch over everything just to kiss his forehead once in a while, a nurse asked if I would like her to adjust things so I can get closer to him and hug him. I have needed to hug him since Saturday night and I guess no one thought of it before, while I have been trying to stay out of the way of all the cords, tubes and machines. She lowered the bed rail – so simple – and I was able to put my arm around him and lay my head on his chest and next to his face. This made a big difference for me and gave me strength.

I learned eventually to ask fewer questions (not because they didn’t want to answer, but for my own sake) because I wanted to spend my time with Pat peacefully and not concerning myself with one detail after another.  I knew he was in bad shape overall and that things would continue to fluctuate day by day, and that I could trust the doctors and nurses to take care of him.  They were diligent and I was confident they knew what they were doing.  So I began to focus more on just being with him, talking to him, and doing things I thought would help him to be comfortable.

And then on the morning of January 18th before I had left the hotel, I received a call from the Intensivist asking for permission to move the breathing tube from his mouth to his trachea, and telling me that the MRI hadn’t shown anything new.  They were seeing no reason for him not to wake up.  I said it is just a matter of time then, waiting for when he decides to wake.  She responded “or if”, because with such a bad accident brain trauma can be worse than they see.  Her “if” was enough to crush whatever little bit of strength I had upon waking up, and I crumbled in a pile of tears.  The logical side of my brain (and my daughter) told me that they have to say these things and not give false hope, that they can’t say words that will later be recalled as promises they shouldn’t have made.  But the emotional side of my brain lost ground as soon as she said out loud something that I had already feared but dismissed — in attempts to stay positive that he would wake up and be OK because God had saved his life — and I was bluntly reminded that I could indeed lose him completely to this unconscious state. They had no answers and I had run out of questions.  All I could do was wait.

Chapter 3: TBI – “No Life Threatening Injuries …”

Pat loved Phil's Challenger and enjoyed riding in it.

Pat loved Phil’s Challenger and enjoyed riding in it.

“No life threatening injuries.”  That was the report I received while riding in the car to Edmonton that night, from my son.  He had turned around after confirmation that Pat was being flown to Edmonton and he went straight to the University Hospital to be there when STARS arrived.  At that moment it calmed me somewhat, but looking back I wonder if I always knew it couldn’t be that simple.  It certainly wasn’t.

“Small brain bleed…”  When I arrived that first night, the doctor explained to me that after the CT scan, it was apparent that things were more serious than they had originally thought.  Pat had a broken arm, dislocated elbow, broken back, broken neck, broken ribs, severely bruised kidneys and a small brain bleed.  The latter is the one I hung onto, the one I wanted answers about, and the one about which they could predict nothing.  And for the remaining weeks of his coma, as his bodily injuries began to heal, they still could predict nothing and had no explanation for his ongoing unconsciousness.

My friend stayed with us until early morning when we finally went to Michael’s apartment to try to get some sleep.  I remember walking in, laying down on the bed and trying to stop myself from crying so that I could fall asleep and be stronger when I woke up.  Waking up was awful.  I had about three hours of sleep and when I opened my eyes in that groggy state of needing more sleep but knowing there was a need to get up, I think I was hoping to find that it had all been a bad dream.  As I looked around the bedroom, I started to cry because I knew it was real and that this was just day one.

That morning my brother contacted my son to let him know that he had taken care of all the arrangements at a hotel right across the street the next day to make sure I had somewhere to stay that was close by.  I was so thankful he had stepped in and taken care of it for me.  I had little concept of time and couldn’t think past the next minute or two so making any kind of plan was beyond my capacity.

For the first few days I walked around in a daze, I was confused and disoriented, and had it not been for my children who led me around and watched over me constantly, making sure one of them was with me at all times, I would have forgotten to eat, drink, sleep.  I felt like my brain was broken, I couldn’t connect things together properly. I was present but disconnected in conversations, as I heard people talking but experienced things as though I was out of my body watching it all. How was the world still spinning?  How could people be coming and going and living their lives like normal when time had stopped for me?  How could life continue in one place after another when Pat’s was on hold with so many uncertainties?  I was trapped in my own mind, in my own pain, and for me, everything had stopped and there was no life if Pat wasn’t living it.  I broke down crying in public places, I was overwhelmed walking through the cafeteria or across the street to the hotel.  Every simple thing was just too much.

From my journal, January 6, 2013:

I need to be close to him. I find that even though there is nothing I can do at his bedside, just being close to him gives me some peace and keeps me feeling connected. As soon as I leave for the waiting room I feel scared and agitated…I don’t know if I am coming or going, I can’t think straight and I can’t make small decisions. I am following people around as they are helping me get from one place to another so that I eat and rest. I keep waiting to wake up from this nightmare, because I can’t believe it is real. It has been my worst nightmare, that he would not come home one night and be lying on a table somewhere when I finally got to see him. And it came true and now I can’t seem to shake the image of him being hit and thrown across the road and how scared he must have been in the moment when he realized he was going to be hit.

Family, and friends who are family, came to be with us.  Some took us for meals, some brought food, some prayed with us, everyone listened.  Most importantly, they were just there, no questions asked, no campaigns to cheer us up.  They just showed up from the first morning on, taking care of us and making sure that whatever we needed was being done.  I was overwhelmed by the generosity of Pat’s workplace, our parishioners, and the wider community who had set up, maintained, and donated to a trust fund to help us with the unexpected expenses incurred by such a sudden tragedy.  I received notes and cards with more donations, some from people I hardly knew, and I remember thinking that I have never been a person who could just accept things like this without needing to pay them back, and there I was, in a situation where all I could do was say thank you over and over again, humbled to know how much I would need the help, and finally realizing that the people somehow needed to give it.

All of that helped me to hang on to the idea that God was taking care of me, sending me help, sending me people to take care of me.  I was scared out of my mind, but still trying to be thankful for whatever good was happening, trying to see signs of God’s help in the kindness of others.

For the nearly five weeks he was in a coma I did not feel anger.  It surprised me.  I felt many things, but not anger.  I even asked my friend to pray that I wouldn’t get angry.  I held onto the fact that the accident was bad enough that he should have died, but that God had saved his life, so he had to wake up and be OK because nothing else would make sense.  There was a reason he didn’t die, and the only reason I had was that he was going to be OK.  It was the simple logic in my mind so shaken and scattered that I couldn’t even think properly.