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.