Nine months post surgery

May 22, 2014

While I need to do another update on Deb, it is such a hard thing to write about...

People ask how are things or how is Deb, and there is no easy answer. If we look back just over 9 months ago when Deb had her surgery, then yes, she has improved drastically, no longer in ICU, walking and talking on her own.

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But if we look back since her coming home at Christmas and what has improved, its hard to put your finger on it...

there are days when her attention span is longer or she recalls something that recently happened, but not a day has gone by that she hasn't asked where the boys are, if they are home or if they were just with us.

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At this point she still cannot be left alone and is hard to keep motivated. For those that are caregivers, we are not sure when to push her and when to let her rest.

Although I do have those days that I speak a little more blunt when reminding her where the boys are for the 10th time, I have also learned, with Gordon's assistance to make her answer her own questions, for this is the only way we can help her learn.

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The days are long with Debbie.  There are accidents and mishaps, there are questions and frustration and there is sadness, lots of sadness. Sadness from her when she gets confused or doesn't understand. Heartbreak when she feels picked on at a doctor appointment while we try and explain her progress. And then there is our sadness, wanting Deb back, wanting to be building new memories with her and not feel so defeated when she says, "I didn't get to celebrate Easter" for the 20th time.

With TBI - traumatic brain injury, there is no instruction manual, or specific steps to endure while trying to help her. Gordon searches daily for what he can do to help Debbie progress.

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Occasionally I feel betrayed by the medical world, the surgeon, and all that gave us this false hope that all Debbie needed was this surgery to remove the tumor. We were never given a timeline of after the surgery progress, what to expect, or what she will need. In fact they never gave us anything to proceed from, no clear direction on recovery or how much recovery she will have. 

Recently Gordon and I decided we need a new game plan, a new direction because we want what is best for Deb and we are blindly trying new things to turn her in a new direction.

We will not give up or stop trying to improve her life, and all our thoughts will be in what we can do to help Debbie. We are learning there is not a lot of help out there after the surgeon is done with the procedure and the radiologist completes his mission,  we are the ones left to pick up the pieces and try and form a new life again.

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