Friday, September 25, 2015

Communication is the key

Last week was a rough week.  I honestly didn't think I would make it.  Between the chest pains and the flu on top of the doctor putting my on a new medicine for stress and anxiety, which by the way makes me sleepy if I take it in the morning and keeps me up if I take it at night.  Either way I am blurry.  I feel like I am on drugs which I guess technically I am.  Anyway- My being sick got the message thru to my kids that I am not young and can't continue to do everything.  So I am having more help around the house which is super nice. 
     Dan is talking softer so I can barely hear him most of the time.  His head falls forward and when he picks it up it rocks all directions and he can only hold it up a short time.  It is super sad for him and I can tell it makes him tired really fast.  He also had his first catheter change out here at home and when he cried out I wanted to cry, too.  It was pretty awful.  He gets tired faster.  He has been getting sponge baths since it is so hard for him to stay up but asked tonight before bedtime if he could get a regular shower tomorrow so he would feel cleaner.  So we are going to try.  Last Saturday I had to hold him up while she washed him.  Not easy on either of us.  Some times his legs go to sleep and then getting him up is almost impossible.  His legs almost always stays bent now when he is kinda upright.  So he looks like an S.  And he has lost a lot of weight.  He is down to 194 from 244.  So they are watching his diet more.  There seem to be more changes than anything around here.  The one good thing is that he is not talking in paragraphs anymore, well not much anyway.  He mostly talks in one word or a sentence.  He also spells a lot which basically means that I start at A and he nods when I get that letter right and then we go to the next letter and I start guessing at A again.  I never realized how much all the letters rhythm until he got sick.  We were talking the other day about if he could get just one thing back what would it be.  I choose speech.  I think he would love his hands.  Both of us wanted a way to communicate.  I never realized how much time we spent just talking to each other.  Whether early in the morning in the bed, on the phone while he was away or late at night just before sleep.  I miss that more than anything. I want to know what he needs, if he hurts, how to help him.  All the things I took for granted hearing from him, I want to hear just one more time.  But it is not to be and I have to get used to it.  It took me months to get used to not hugging anymore.  Something we had done all the time but starting hurting him so we had to stop.  Or holding hands because his fingers cramped up.  They are not in a curved shape so we kind of hold hands again now.  Now we are adjusting to something new.  Every week something else new.  Some days  I think I can't learn one more thing and then I do.  You can feel so overwhelmed! Now he is tube feeding, which by the way you start with a half can just to see how they tolerate it and work up to a can and then more as needed.  Flush with 60 cc, one can and then flush again with 200 cc.  Jeff can do it as good as I can now.  Learn as you go.  Learn one thing at a time and you will surprise yourself by all you can do!

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