One step forward

Two steps back...

Done with radiation... a huge step, yes, yet its been a few weeks and we haven't seen much improvement in anything else. In fact we are in a two steps back phase.

This week we've attended several support groups, a place where Deb can learn from others in a similar situation and where we, as her support, can learn how to best help her through each stage.

Sometimes I don't think Deb realizes why we are at meetings. Distracted by her phone, thinking about the kids and not paying much attention to her surroundings. There are those few times that she does laugh or respond, and she now says she is a survivor instead of referring to Shawn and his diabetes. She even laughed when another TBI survivor explained that he was a computer tech and now the only way he can repair a computer is with a sledgehammer... I think she related.

The meetings are a wonderful place to witness other survivors progress, to learn and to laugh. One group has a joke jar, it costs you .25 to tell a joke. At the end of the month they raffle it off, a way of helping with someones fuel costs.  They talk a lot about giving back are an inspiration to behold.

A TBI survivor joke "did you know I have a photographic memory, unfortunately nothing develops"

We still go through the endless series of repeated questions daily, and she always believes she needs to be somewhere other than where she is at any given time.  But we are all here to stay, to help her and to see her through the dark days and celebrate the light!

Gordon spoke up during the meeting as we all shared the things we are learning through all this.  Many positive things we have to remind ourselves to notice and talking about patience, something both we the caregivers and the survivors need. He continued to move many to tears, including  Deb  as he said "he's not going anywhere and going to see her through this".

Yesterday we had a great day together, we went to lunch, did some shopping and then went to all three of her therapies. She repeated what she got for lunch to the therapist, our burger at Lager & Vine was that good! She was fatigued after this and has been more sleepy recently. She questions herself and why she is tired, and I remind her she had a brain tumor and sleep is part of her healing.

Throughout this process I know I've been waiting to find my sister at the end and Gordon his wife... but we are learning that once she gets through this she probably won't be the same person we once knew and we need to learn to grieve the loss of that person and accept the new person she will become. A lot of TBI survivors call their accident their "death date" because that person died and a new one was born, and they really like that new person! 

Stages of grief

1. Denial

2. Anger

3. Bargaining

4. Depression

5. Acceptance

In 2003 when Joe went in for his brain surgery we were told it was going to be a long road to wellness when he got out. Lots of therapy and learning to walk and talk and remember all over again. We didn't get that opportunity with Joe and we now have it with Deb and for that I am thankful.