Just when I thought things had eased up a little it all came crashing down again. He is not doing well at all. His color is not good and he is sleeping a lot during the daytime. He is very clear on the he is ready to pass on and go "home". He is not scared of dying and has finally accepted the fact that he is going to go soon. He told me last week that he knew this was our last Christmas together. So we have really been putting some effort into enjoying every minute we can together. I asked his nurse what we needed to be watching for so I would know when to call the kids in. She gave me a list of 5 things and only one has he not done yet. That one was a rattle in his breathing. I asked if that was only when they had pneumonia and she said no that they all rattle. I hope she was not talking about the death rattle you hear when they are passing away I really need more notice than that! But the other 4 are here already. From everything I have read he is in what they classify as "the final stages". It really seems to have whipped up on us! Some of the other signs are 1- shallow breathing (his is very shallow) 2- they run a fever (his comes and goes so I consider that a plus). 3- sleeping a lot during the daytime (and at night). He sleeps a lot in the daytime and always seems so tired. 4- Is the one I can't remember right now. But the good thing I found out was that if you choose to go the natural way and not do all the machines you go peacefully in your sleep. Many family members of many ALS patients say it is peaceful and easy on them. But if they choose to do the machines/ trac/ and all these other things to extend their lives then they are the ones that get pneumonia, a P.E. (blood clot), heart attack and such like. They are the ones who have a hard time. When we found all this out Dan had filled out and signed his medical advance directive and his DNR a couple of days before. Now we are really glad he has decided to go all natural. At first when he decided it I was upset but I agreed because it is his body and his choice. I wanted that extra time with him. But I have to put him first because I love him. I thought about it and decided for myself I would much rather have him go peacefully in his sleep that chocking to death with pneumonia. He had a PE before and it was so painful he cried I can't imagine how much more so it must be to kill him. And I have heard a heart attack really hurts!! I don't want any of that for this dear sweet man that I love. Yes, this is hard but that is not part of this equation at all. I want the best for him. As long as he is alive I will pray for him. But now that he wants to go back "home" my prayers have changed. Now I pray that he will be happy (so he will want to be here still) and that he won't have any pain. That is important to me.
Here is a couple of pictures of him with our latest grandbabies.
This is him with Jaclyn. Our babies baby. She really loves him.
And this is him with 3 month old, Madison. She will just sit in his lap and lay there forever.