Tuesday, July 7, 2015

Here we are again

Things are getting better around here.  Dan got the paperwork needed to get our handicap van.  We are just waiting for a guy to put his john hancock on it and we are done and can pick it up!! It is already paid for and everything! YAY! Then some guys from church was over and helping us get Dan inside on our way home from church.  And he said "I am an engineer, can I build you a ramp" Of course I said yes! So he came over, measured everything, his brother came and they designed it.  They have already gathered things they needed to make it (people donated) and they are coming Saturday morning to put it up! I am so excited! Dan can come and go by himself! That will make things so much easier!  Then our contractor came today and is ready to put in his bid to get the house redone and ready to put Dan downstairs where it is safe.  So that is moving forward too. I have a lot of work to do to get the Family room ready to be redone but it is in motion now and that is wonderful! And we now have 2 CNA's and a nurse coming and seeing us! One CNA, Melissa comes every morning to help me get him up and going and does his PT.  The other, Ruby comes 3 days a week and does his baths, shaving, nails and rubs his feet. I feel so blessed! Things are really starting to come together!
      We are having to put his meds in the tube now, We were hoping for a few more weeks without it but that was not to be.  Even with all the trouble the tube has been I am really glad we have it now that he is choking more.  Putting the meds in the tube sure makes things easier for me, too.  I am also having to hold his head up to brush his teeth.  He just can't hold it all the way up by himself.  Bless his heart he is really folding in on himself more and more.  But we are getting it done. Some days are hard and some are harder.
      Today I heard a couple talking and she said "this is my love (introducing her husband).  We have been together for 60 years" and I thought wow! Dan and I had planned to make a lot of years.  We thought it was doable since we had married so young (I was 18 and he was 21).  But now when I hear things like  this sweet couple I cry because I know that I won't have that.  I will probably have a lot of years alone and that makes me so sad.  I have only ever been part of a couple.  We married the same week I graduated high school.  We had plans and they were good plans and now that is all going away because of some stupid illness that no one can even figure out where it comes from or how to cure it.  I have never hated in my life but I really hate ALS.

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