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.

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