Chapter 17: TBI – When the Light Goes Out …

Pat loved the indoor fairy garden we made for him to keep in his room.  Chaplain Marty had brought hers in to work just to show him, and he was fascinated by it, so we made a small one for him.

Pat loved the indoor fairy garden we made for him to keep in his room.                          A staff member had brought her outdoor one in to work just to show him, and he was fascinated by it, so we made him a small one of his own.

In January of 2014 I recognized that Pat would need to go to long term care, that I would be unable to look after him at home.  It was a devastating realization, and one I had to come to on my own, over time and through experience, and it was for me the end of the only thing that had carried me through day by day, the end of the work to get Pat home.  That part was over and what remained was to learn to prepare myself to place him in a facility and learn to live with the horrible feeling of separation and the knowledge that no matter how hard I worked, no matter what we tried, the force working against us was stronger and had all the power.

In February, I found myself in a dark place emotionally. It was different than just being sad, and I believe that for a time I was suffering from the depression that is part of grieving.  I had lost my sense of purpose; Pat was still being stabilized and could hardly interact with me, and I was simply going through motions day by day with no light at the end of the tunnel anymore.  I was exhausted, helpless, and I dragged my feet down the long hallway every day wondering what else I would have to face, instead of briskly walking in anticipation of what new thing he would have learned or accomplished as I had done so often before.  I couldn’t focus, I could hardly think or make decisions. I cried more and more and began to wonder if I would ever again know what “happy” felt like.

Pat’s doctor had told me before that I needed to think more about my own needs because staying around to watch the effects of his manic episode would drag me down and through it all along with him, that there was nothing I could do to change it, and that I needed to be strong enough when it was over to hold my life together.  So I started taking more breaks at that time and trying to find ways to take care of myself, knowing that while my presence and involvement had previously been effective with Pat’s physical recovery, there was nothing I could do to fight the chemical imbalance that was now taking away from me what was left of him.

But it wasn’t enough.  Finally, when I expressed my concerns about the despair I was feeling to the social worker on our unit, she told me I needed to go home for a few days, to spend normal time with Kate and see my mom, to relax and do something fun, and try to regain my strength.  I conceded and went home. When I got to town I stopped briefly at my mom’s house where my brother and some cousins were visiting, and received some much needed hugs while I cried until I couldn’t cry anymore.  When Kate got off work, I went home with her and crashed.  I don’t remember doing anything the next day but sleeping.

It felt to me that everything we had gone through was for nothing.  Yes, Pat was in much better physical condition than at the beginning, when long term care was first introduced as a possible end, and certainly that improvement would help him to have a better quality of life even in a facility than if he had remained in a bed with no rehabilitation opportunity.  But somehow, after having worked so hard for so long to still end up with living separately forever seemed a cruel twist, when there had been so much progress towards another end.

It was a final blow to any shred of faith I had left.  I knew God had the power to instantly do something – ANYTHING – that would fix it, and He wasn’t doing it.  Pat didn’t deserve any of this; I had worked hard, I had been faithful, and we had come so far only to now experience what just felt like a huge slap in the face in the end.  Had I not forced myself to remember that whoever and whatever God was, He wasn’t cruel or unloving, I might have expected He was laughing at me for ever having hoped at all.

2 thoughts on “Chapter 17: TBI – When the Light Goes Out …

  1. Waiting to read the rest of how you have coped with all that has happened in your life with brain injury. So interesting how you disscribe this it should be a book for others to try and understand. As you know no one knows until they have been there hope you are doing ok


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