Sunday, November 29, 2015

Things keep changing

So while we were in Louisiana we found out that drinking Lemon water (its a natural diuretic) will keep the swelling off Dan's hands and feet.  In the beginning when we were first on Hospice we found out that Papaya juice will lower his phlegm.  Sounds like Dan needs to drink a lot of juice.  So I thought we were doing pretty good but I think I was just trying to not see the new signs.  It is so hard to see them and know that he is doing worse and there is nothing I can do about it.  Every night now he aspirates. He chokes and chokes and it is getting worse.  I will have the nurse check him out tomorrow and see if there is anything we can do.  He is talking less and less, he just doesn't have the air to do it. Once again I am watching him get worse and I have to adjust to something new and pray this is  not the thing that is going to kill him.  I want him to stay around until we are 90! I just want to grow old with this man of mine. 
    Today the weather was bad and I gave the decision to Danny whether he wanted to go to church or not.  I knew that letting him go out in the weather ups the chance of him getting pneumonia which is what kills most ALS patients.  I felt very strongly that when a spiritual question comes in that that decision needs to be made by the person.  So he had to decide.  When he woke up the weather was a little better but not great and he decided that he would rather stay home and be safe.  I will admit I was so glad.  I know it hurts him and makes him to sad to not go to church but I just want him around for a while.  When the ramp was icy I felt like I could just say no but when it was mostly clear it was his call. 
     He is doing more leaning so that is not good either.  It won't be long (we have been putting it off for weeks) before he has to stay in the hospital bed instead of going up the stairs on the lift due to safety.  I hate when that day comes.  My mom has been here for a few weeks and it has been wonderful.  She is so good with Dan and they sit around and she talks and he smiles.  I take a nap so it works for us all! :) 
     We are hanging in here and wondering what change tomorrow will bring.

Monday, November 16, 2015

Vacation to Louisiana and Mississippi

We had a wonderful vacation filled with people who loved him enough to come a ways to see him.  He loved being loved so much.  He really basked in the attention.  We saw people who we hadn't seen in forever.  I think that it is a case of they didn't want to wait until it was to late.  Plus, they realized that there might not be a tomorrow that they can see him in so they needed to do it today.  What a great lesson for us all to not put off until tomorrow what we should be doing today.  So if you have a dress you want to wear, a dish you want to try or use or anything else you are putting off. Stop it!! Do it now and enjoy your life!! 
   This week Dan went into the Neurologist for his check up, and found his reflexes are down from 2.8 to 1 something which of course is a concern.  When they tried to take his blood they couldn't get any out of his good arm after a few pokes gave up and went to the bad arm and got it there.  But that was a little concerning too.  His speech is going more everyday but he is learning to smile thru it which is great! I really hate when he is sad! I wish you could have seen his face as his sisters tried to figure out what he was saying and laughing with him.  He was really enjoying it.  Maybe we have reached a plateau there so he won't be so frustrated.  For some reason the last two weeks have seemed a touch easier.  I have found bed baths are hard but if I do it while he is on the toilet it is way easier! So we are adjusting to make things easier and anything that could do that is my friend these days.