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.

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5 thoughts on “Chapter 10: TBI – Waiting with Uncertainty

  1. Hi Ann,
    Im your old neighbor. I have been following your blog for a few weeks now. Knowing that this is your personal journey has allowed me to see an aspect of perhaps what my family went through when my mom was in her car accident. You have found a way to put the emotions behind the words, i love how you write. I was 14 months old when that accident happened and i know nothing of the past other than what family shares. Thank you for bearing your heart and soul!
    Catherine

    Like

  2. Affectionate greetings dear Ann, and Kate and Michael. This blog is a witness to the depth of human suffering. Thanks so much for your raw honesty. I love you.

    Like

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