Monday, May 11, 2015

Some days are hard on all of us

Yesterday was a hard morning for Dan.  Some days are like that.  I have found that we have no clue whether or not tomorrow is going to be a hard day.  He just wakes up like that.  I think that Dan is just trying to keep me on my toes.  But last night he was able to get out of the bathroom without help and used big steps.  Well, big for him anyway.  He hasn't done that in a while.  Things like that are so hard for me because they give me hope that we are going to get thru this and that he is going to live for a long time.  Then he will have another major setback, and it is usually the next day or the day after.  So now I live in fear of what it is going to be.  All I want is my dear, sweet do anything for anyone husband back.  Not this angry, sometimes mean fellow who has taken his place.  And I get it.  I don't want anyone to think I don't but it is so hard to set apart the man who is sick for the first time in his life and having a really hard time dealing with what is happening to his body to my awesome husband who never would have yelled at me.  I have to consciously think "this is not my husband it is his illness" but when I don't think it fast enough then I get my feelings hurt and that starts a really hard cycle to get out of.  Usually takes me a day or two and I always want to snap back at him "I am doing the best I can" or "I do everything for you why isn't that enough".  But why say anything since it won't change anything and it will just upset him. And he cries so easily.  Bless his heart it is hard for him to not cry.  Yesterday at church there was a lot of our old friends there and he cried a lot.  Seeing them as they came over to shake his hand or give him a hug made his day.  He was so happy but the tears came.  He also laughs easily and once he gets started he has trouble stopping.  He and our youngest get going and set each other off.  The worst part is his little boy attitude like "letting gas" really tickles him or the other day he pooped in his pants and that really tickled him.  All the while he was saying sorry he laughed.  Makes it hard to believe him.
          ALS lesson of the week.  A Hoyer lift is great but wow is it hard to use.  Order it early so you can have time to practice.  I practiced on my son in-law and even with him being able to move it still took me 6 tries to get him to where he would move like he is supposed to.  It works much better if it is not on carpet.  We are going to use one of the plastic things for the floor that Dan used his computer chair on.  We are going to get the biggest one we can find.  We were told we could use plywood but then I would have to wear shoes all the time.  And I hate shoes but I hate splinters even more!
          Lesson learned this week about death.  I found out that if your spouse has served in the military you can have them cremated for free and they will then put them in a vault at Leavenworth for free.  And did you know that they charge you per pound to cremate? A friend of mine just had to go thru that and at the last minute found out the military would take care of it. Thank goodness since they were going to charge her over a thousand to cremate him since he was so heavy.  He had swollen up the last couple of weeks.  BTW: He didn't have ALS.  Not sure if they swell or not and I am not looking forward to finding out. 

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