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.
We had a tough week here. It has been a few weeks since we had anything bad happen so I thought we were mostly stable and wasn't as worried as I could have been. Soooo what happens? It all comes raining down on us. His feeding tube got infected and then the next night- he had blood coming out of his penis. A lot of blood! So here came the nurse again. The next night he started aspirating and gagged for 15-20 minutes. It was terrible!!! Tracy, our LPN said we were testing her to see if she always wore her uniform even to sleep in. Now every day some of his skin gives and he gets another sore. He only has 2 so far but is having problems with those two. So a whole week has gone by and we had problems every day!! Yesterday we were talking and he wants his DNR put back in place. He said "I am ready to go home" Since we were sitting in our living room I can only assume he means back to live with Heavenly Father. He tells me he is tired and wants rest. He doesn't say "to rest" he just says rest. I know this has been a long battle for him (and for us all) and I think that he is ready as he says. He has told me he has no reason to fear and I know this is true because he is a good Christian man who loves the Lord. I asked him to try to stay at least thru Christmas so that the kids can have one more Christmas with their daddy. But I don't know if he has the energy to try anymore. It is so hard for him to even get a word out and he has a lot of pain now. He hurt from 2 am until 630 when he finally gave in and let me give him some pain drops. He usually doesn't want to take them but gave in this morning so I can only assume it was pretty bad. We will be praying for God's will to be done. But I sure don't like to see him suffer and I know the kids and Jeff don't either. So we pray he won't suffer and that he can find some happiness in every day.
Yes I know this title seems selfish. But I want to wake in the morning to hear Dan singing in the bathroom because he forgot he is home and not in a hotel in some other country. I want to hear him whistling a happy tune as he is doing service for someone who stopped by because they needed something. I want to walk along holding hands with my sweet husband while he looks over at me and smiles. I want the bathroom door to open and the smell of MAN to come out. I want to shave ( I do a terrible job and he is so good at it). I want to sit in the quiet of my house with the smell of supper cooking while I wait for Danny to come home. I want the things that we put off for later to be able to do. I want the vacations we were going to take when we got older. I want old age with a husband who loves me. I want the Danny of old. But that is not to be. And I am sad about that. But I still love Dan with all my heart. I wouldn't trade every day together for anything. I want every day I can with Dan. I thank Heavenly Father every night for letting us have one more day together. I am blessed and I know that but I sure would have enjoyed old age with Dan by my side.
Dan has run fever the last two nights and I thought I was paranoid before but I sure am now. If I walk out of the room for anything I am scared to walk back in for fear that Dan is dead on the other side of that door. Now I am terrified! I hate it when he feels bad. But when he is sick it is so scary!! Every time we face something new it is just terrifying. But we face it and get him well. So we washed him and cooled him off, then gave him some aleeve. And waited and waited. Finally his fever broke and all I could feel was relief, a deep Ahhhh. We had made it past another scare. Then the next night it came back and we went thru it all over again. Today he is looking good so we are praying that we are thru with that. But I sure wonder why?? But that is part of ALS wondering what is coming next and why and how are we getting past it. What do we need to do to keep Dan alive and well. Every day a new adventure.
Many people have told us that as the bad weather comes in that ALS patients heath goes down. But so far Dan is stabilizing. I love that. I thought we had a problem but it turns out that I was putting him to bed to close to brushing his teeth. He always drinks water then and the water was causing the choking. So now that I figured it out and shifted when I brush his teeth not more choking sounds and no more gagging. So far so good. We have decorated for Christmas and He is loving out new outside lights. We got the projector lights so no climbing and not hard at all to start and stop. I love it, too! Our tree is up and lite and that makes him happy, too. I think we are going to be okay but we are not going to get out much and that really seems to help when it is cold outside.