Feeling Sad

Scott gets a little worse everyday. 

He is not eating or drinking much any more. He has a very difficult time swallowing most of the time.  Hospice has asked us to not give him anything to eat or drink, due to his high risk of choking.  Of course, if he asks, we do our best to help him get it down. He is having a very difficult time swallowing the medications he is given to help him be comfortable.  The nurse commented yesterday that he is starting to show some signs of dehydration. 

He continues to be very swollen and is swelling more on whatever side he is turned to or leaning towards.

He ran a fever the other night and was drenched in sweat, but that seems to have resolved now.

He is very jaundiced.  The whites of his eyes are now completely yellow. 

He did get up out of bed yesterday and shower.  This completely exhausted him and he didn't get out of bed for the rest of the day. 

He sleeps most of the time and when he wakes most of the time he recognizes people.  However, for the first time ever, he did not recognize immediate family recently.  Our cousin Tommy came to visit and Scott recognized him and called him "Tommy Tinker" which was the nickname Scott has always called Tommy.  It made me smile when I heard that and feel sad at that same time. 

Part of me wants Scott to be completely unaware of what is happening to him. I've asked my Mom many times throughout this if she thinks that Scott realizes or understands that he is dying. (Maybe my real question is does he accept this???)  My Mom does not believe that Scott does really know that he is dying.  Mom has said a few times that Scott is young and that the human body just naturally wants to live--to survive. This thought is incredibly hard, something I have struggled to process. I think her statement is true. I just really pray that Scott is truly comfortable and feels peaceful and there is not some inner turmoil. It seems so cruel. I know we have a loving God, but man, I just don't get this. I have to tell myself and believe that somehow God is making this work out and be okay for Scott. 

I've had to go back to work, back home, back to "life", and it's been torture.  Now that I am away, my mind is constantly focused on when I can get back to Scott's. Every time my phone rings, my heart drops.  I feel obsessed to "see him one more time".  I feel like I need to tell him goodbye and that I love him again. I don't think I will ever be satisfied with my "last goodbye"  

When I was with Scott, it was okay to suddenly burst into tears--everyone there understood.  It was okay to be sad.  I didn't have to pretend to be any other emotion than what I was truly feeling at that moment.  I can't do that now and sometimes I feel like I'm breaking inside and smiling outside. I hate that.  I'm sad my brother is dying, I'm sad I can't be there with him every moment. I don't want to do anything else right now, or make plans for the weekend, let alone tomorrow night. Somehow, planning something "fun" makes me feel like I am taking something away from Scott. I can't explain it....I'm just........SAD.  I think we are all validated to feel this way and "deserve" too.  I don't feel one bit bad about it. 

Melissa and I attempted to go black Friday shopping.  We woke up early.  We drove to Ogden.  We went to the first store.  I didn't have really anything that I truly wanted to buy.  When it became a decent hour we called Mom for the report on Scott.  We didn't feel much like shopping after that.  Because we were asked to do so, we went to one other store to buy Scott a new white shirt.............
Even though I hated what this meant more than anything, in some small way it was nice to feel like I could "do something" for Scott.   

The other day my in-laws were talking about our upcoming Family Christmas Party.  For many years Scott  was part of our party serving  as Santa.  I was always very proud of him.  Last year at the family party we had a not so great "fill in".  This year Eric (Melissa's husband) is going to be Santa for our party.  As I was talking about this years party with my brother in law, I suddenly felt this grip around my chest and literally felt like I could not breathe. For the first time, I thought about the possibility of having a Christmas without Scott and that thought made me feel like I was drowning.  I  went home and looked at all the Santa (Scott) pictures from our past parties and sobbed and sobbed over our "used to be normal" life.

My Mom said the other day that "life is never going to be the same".  I've written all these words, but she couldn't have said it better.  



April