Sunday, February 14, 2016
Dan has passed on. It was different than I thought it would be. I guess I thought that because he was such an awesome man that none of it would be hard for him. But it was. But let me start at the beginning. On Wednesday night when everyone was gone and it was just the two of us, which never happens anymore due to the fact it takes 2 to put him on the toilet. We had a talk. It was a good talk for both of us. Things were said, straightened out, love was given and a lot of tears were shed. It all started when I asked him "if you could do anything tonight what would it be?" I was thinking if he didn't have ALS but he took it as a serious question that it was and answer after some thought "he would go home" Home to our Father in Heaven. Home where his hands, feet, and speech would work again. Home to his mom and dad, to my dad, to his brothers and sisters, to my brother, HOME. When he said he wanted to go home I knew exactly what he meant. So I answered him "then go" I told him "I love you and if you are staying just for me, don't! Don't stay here in pain, don't stay here unhappy for him. I love you more than life itself so it hurts me to see you unhappy or struggling." We cried for 30 to 45 minutes and then finished the conversation. I told him I understood that he was ready and that it was okay. I was going to love him forever and that wouldn't stop even if we weren't side by side for a short while. Within a couple of hours he had gotten a little worse. By 2 am on Thursday he was sleeping peaceful so I did, too. Thursday morning the CNA's showed up for his bath and he had changed some how. They got him in his chair and his was wheezing. He didn't sound good at all. Ruby (CNA) called and told Tracy (LPN) she needed to get right on out to check him. She got here as Ruby left. Tracy said that he had a lot of bad signs. She worked with him some and brought him some peace and comfort. By Thursday night he was on what is called comfort care. That means someone is here with us around the clock. Or at least that is how it is supposed to work. Friday night they said "he is sounding pretty good, his vitals are holding steady so we (meaning the nurse and her supervisor) are talking about just coming and checking on him every 4 hours." I asked her to stay until he woke up. She did and saw a different picture. She saw his struggle, his vitals changed, even his color changed. She didn't leave. But the next morning they left and we were set for the every 4 hour schedule. Until the supervisor came out. At that point I had worked with him for a couple of hours to ease his breathing and it just wasn't working. She worked with him for 4 and a half more before she got him where he could rest. We tried his chair which eased him for a while as Sam sat and held his hand (we had found in the days before that if I held his hand he was calmer), his bed and finally put him on his side and it eased. Kim sat down and held his hand then. Which she continued to do off and on for the next few hours. Our nurse left with instructions on what medicine to give him and when. Jeff and I noticed that his urine had turned black. That is when we knew he wasn't going to rally from this one like he had all the others. From then it didn't take all that long. The focus had changed from keeping him alive to keeping him comfortable. When they say "we just want to keep him comfortable" or when they just aren't hungry anymore this is all bad signs. When their skin gets so thin they get pink marks (that could turn into bedsores if you are not really careful) in strange spots (like on his ear) this is not a good sign. Their are so many that I wish I had known to look for. So many that if someone had told me to look for them I could have been more ready. Not that I wasn't because that last hour helped us all be ready. He was suffering, he had turned down pain medicine the whole time but didn't in the end. He wanted it then. I had never wanted him to suffer. I didn't want him to have any pain. It was what my prayers had been about. When I realized he wasn't going to get well I had changed how I prayed. I wanted him to go easy. Like he lived his life slow and sweet. But that wasn't to be. At least not exactly. Back to the bed. Once he was on the bed and everything had eased it was such a blessing. I was so glad that he was resting because he looked well when he was resting. His color had changed back to normal, at least on his face. And he didn't look scared. Mostly he didn't seem to see us but recognized our voices and the feel of our hands. Kim was holding his hand and had been listening to him breathe for hours. It is what we did and had been doing for a while. When she noticed that his breathing had slowed way down and gotten peaceful. She could feel it happening from just before his breathing slowed. she looked up but couldn't find the words to call out to anyone. But Scott looked up and saw that her face had changed and went in to see what was wrong. He called Tamera, who called to Mandy, who called to Jeff and around the house the calls went. Bill walked in the door and into the room with him just before he passed away. He was surrounded by the family he loved more than life. He had most of his kids with him. He wasn't alone and that had been on of his main concerns early in this illness. Now comes the hard part for me. I have to plan the funeral again, write an obit, and pick a tombstone and then plan a graveside service. My dear sweet husband, the love of my life is gone and I don't know what I am going to do. For the last 18 months we have been side by side, day in and day out. For the last 35 years I have been a wife to the most wonderful man I could have ever found on this earth. Right now I don't know who I am or what I am going to do. But in honor the God who loves me, my dad who raised me in the gospel, and Dan who told me to be happy and loved me as only he could do I will move forward on the path back to live with Heavenly Father and Dan and I will be together again. I will be okay because I promised Dan I would be. I will be okay because I still have our children and grandchildren by my side. I will be okay because I am the daughter of a Heavenly Father who loves me. Eventually I will be okay.