how could so many things go wrong?

[lilyjohn]

I know that many people are put off by my remarks about Johnny's death not being from the cancer. I have often mentioned some of the treatment or lack of treatment I blame for his death. I hope you will all bear with me. If you read what I am writing I hope you learn something that may be helpful to you. I warn that many of the things done to him are quite disturbing even to someone who never knew him. Yesterday November 20th was the second aniversary of the day Johnny asked to go to the hospital for help with the anxiety and the addiction to Vicodin. That was a fatal. As many of you know I have been writing about Johnny's treatment and death. I even posted my story about his last two days and his death. So many things that happened that last two weeksno only contributed to his death but made his last weeks a living hell. I'm not sure why I feel the need to share some of those things with all of you. Maybe it is because so many of you have suffered the same kind of loss I have or maybe it is because everyone has questions. I think most of all that as the aniversary of his death approaches I need desperately to share some of the painful memories that are hammering at me again.

Following is what happened the day after he entered the hospital. I hope you bear with me as I post these things. There will be others. If you read them fine. If you don't that is fine too. I know only too well how disturbing some of these things can be.

Thursday November 21,2002

I want to back track a little before I go on to the events that took place once Johnny was in the hospital.

The last week or more that he was home the anxiety attacks were less often. Most if not all of the attacks were associated with the time the Vicodin was due. He was convinced that if he didn't take it every four hours that he would have either an anxiety or panic attack. If he was late taking it and realized it an attack would start. His addiction to the Vicodin was much more mental than physical. He did still complain of feeling short of breath at times but seemed better able to handle it. He depended totally on the nebulizer and the Vicodin to control the attacks. I suspect that sense he had been on the Paxil for a month it was finally working. Had he not gotten addicted to the Vicodin his anxiety may have subsided completely.

The problem at night was different. He wasn't really having attacks. Mostly he was stalling trying to get the nerve to go to sleep. Unless you have been in that situation no one will ever understand what it was like. Normally Johnny was a very strong man even at that late time. It was just when he had an attack that his problems started. He was very afraid of dying, especially of death. I believe that is because of the way he had been taught the Bible. He had made mistakes in his life and knew it. Anyone else would have gotten over that but Johnny believed in Hell and feared it. Sleeping was a time of vulnerability. He knew that he could not protect himself if he was asleep.

I have learned too that it is a very common condition in people with lung cancer. It is due to anxiety and the shortness of breath that they feel. Most people with lung cancer or any kind of lung problem have the sensation of shortness of breath even when there is no clinical reason for it. I also read a story by one man who was on Taxol and had to stop because he would stop breathing at night. I wonder if that was happening to Johnny. With the anxiety that would really explain his fears!

The Tuesday night before Johnny went to the hospital the next day his oldest son came to visit for a while for the first time in weeks. While he was there the nurse came. Normally she would have come earlier in the day but for some reason she was running late that night. When she examined Johnny all of his vital signs were good. I also asked her if he was moving air all the way down in both lungs and she said yes. She also told me that he sounded good. That told me once again that even if the cancer was starting to grow again it was no where near as bad as it had been when he was originally diagnosed.

I was up early that Thursday morning. I had a lot of things to do before I could leave for the hospital. When I had stopped at the store the night before I had gotten change so I could do our laundry. I had not been able to go out for any and had forgotten the night I had gone to WallMart while his son was there. Our laundry hadn't been done in two weeks. We were desperately in need of clean clothes. I had my coffee and took our dog out for a walk then got all of the dirty clothes together to take to the laundry room. I had planned on vacuuming and dusting that day. I wanted to keep our home very clean. I knew how important that was to Johnny's health especially while on chemo. I was still hoping to talk him into coming home instead of going to a nursing home.

At 8:30 I called to talk to him. He was awake and sounded alert and told me that he had had a fairly good night. He assured me that he was doing better and told me to stay home until I got my housework caught up and then go to see him for a while. He also told me that he just wanted me to visit him then go home. He said he would make out fine without me spending the night. That conversation left me a little confused about my feelings. I felt that maybe him going to the hospital was not such a bad idea after all. He sounded better already. I also had the feeling that he was a little too sure of himself. I felt like he was telling me that to make me feel bad for the things I had said to him the day before. I felt like he was distancing himself from me and that bothered me. Still I was pleased to hear him sounding so much better and told him I would be there to see him later that afternoon.

I was on my way out the door with the laundry when the phone rang. It was the social worker from the hospital calling to talk to me. She told me that Johnny had asked her to call and talk to me. He had told her that he had checked himself into the hospital because he had psychological problems and needed help. He wanted her to tell me that he had admitted that to her. He had also told her that she needed to talk to me so I could tell her what had been going on and she could reassure me that he would get the help that he needed.

We stayed on the phone for over and hour. She asked a lot of questions and I answered them all honestly. I explained to her about the anxiety and panic attacks and when they had started. I also told her that I knew why they had started and told her about the nurses remark that had started the problem. I told her that Johnny was very afraid to die and that he was addicted to the Vicodin. I explained how badly the episode with the man from mental health had gone. She told me that she had heard that he was one of the best but knew that what he had done had been the wrong thing. She told me that she knew someone else who may be better for Johnny and she would make an appointment for him. She also told me that any counseling that he started while in the hospital could be continued if he went to a nursing home.

I was very pleased and relieved when I hung up the phone. After two full months of trying to get help for Johnny I thought that we finally had what he needed. I was pleased that not only had he admitted that he needed help but he wanted to make sure that I knew that he had. I finally felt like I could relax for a while.

I took my laundry to the laundry room and put it to wash then went back to our apartment and warmed myself another cup of coffee. I was just getting ready to start vacuuming when the phone rang.

I answered the phone and it was Johnny. I knew when I heard his voice that there was a problem. He was almost in a state of panic. He said "I need you to get here right away. I don't want to stay here alone anymore". I said "Johnny what on Earth is the matter? You were fine when we talked earlier." He answered " I had a bad attack and these people just don't know how to handle it like we do. I need you here with me." I told him that I would be there as soon as I could. I explained to him that I had our clothes in the washers and could not leave until they were finished. He told me that he understood but added "Just get here as soon as you can. I don't want to stay here alone with these people anymore. I need you." I assured him that I would be there with in the next hour or so then hung up.

By the time my laundry had finished an hour or more had passed. I had all of my things ready to go. I had walked the dog again and made sure that she had food and water and left for the hospital. I made one stop to get the flowers for him that I had seen the night before. I knew that he would like them.

I went straight to his room and found him still very upset. I again asked him what was wrong. He told me that he had had a very bad attack and that all of the nurses had been with him trying to help him get over it but they just didn't know how to do it like I did. He was still shaking and I asked what had caused the attack. What he told me upset me so much that I knew that I would not leave him there alone again for any length of time even had he agreed to it. He told me "The therapist came to give me a treatment. Instead of the pipe he had a mask. You know I can't take the whole thing at once and I don't like that mask. I took the mask away from my face and took it just a little at a time like I do at home. The therapist got upset with me and held the mask on my face until the treatment was done."

Johnny got so upset telling me about that experience that he had another major attack. I tried to talk him down but it wasn't working. The nurse came to his room and together we talked to him until we finally got the attack under control but he was still very upset. I was too. He was claustrophobic. Holding that mask on his face was not only illegal but cruel. I knew that I would not leave him alone again and was certain after seeing what he had caused that it would never happen again. I should have gone to the patient advocate and filled a complaint. The truth is I didn't even know they had such a thing and it never entered my mind to file a formal complaint.

After the attack was under control the nurse called the doctor's office and got permission to give him Xanax as a supplement to the Paxil. It was prescribed for him only as needed for breakthrough anxiety that the Paxil couldn't handle. He took it twice that day and I believe once each of the two following days. He never had a problem of any kind taking it. His condition steadily improved.

There was still one thing that concerned me and I kept waiting for them to do something about it. That was the addiction to the Vicodin. He asked for and received it every four hours. Instead of bringing him one or asking him if he wanted one or two they automatically gave him two. The five or six that he had been taking at home was increased to eight. Everyone knew that he was in no pain but they gave it to him when he asked. I kept waiting for them to start trying to cut back on it. That never happened. I had thought that they would give him a placebo because it was so obvious that his addiction was mental. I even asked about it but never received an answer.

We told the nurses that I would be staying with him and requested something for me to sleep on. A chair that made into a bed was brought for me. It was not as comfortable as the recliner I had at the rehab unit but it was a place to lay down and get my feet up. At least I wouldn't have to worry about the swelling in my legs returning.

He called his son and told him that he was in the hospital. I had to go outside to use my cell phone because the calls I had to make were all long distance calls. Cell phones are not allowed in the hospital. I called his niece and my niece and told them where we were. I knew they would be calling and wonder why they couldn't reach us at home.

I left him that evening long enough to go home and take Misty out for her walk. I stopped and bought myself a sandwich on the way home. I hurried back to be with Johnny. I thought him being afraid to be there alone would keep him out of the nursing home. I was wrong. He was still talking about it that day. To avoid an argument and keep from upsetting him I just avoided the issue for the rest of that day and the next.

At home he had been eating less. I know that part of the reason was because he just didn't want to have to go to the bathroom. The other reason was because of the Vicodin. It had caused him to be constipated. He was eating good already that second day in the hospital but getting uncomfortable from not having a bowel movement. I told the nurse and she got an order to give him Milk of Magnesia. He would have that several times the next few days. It took until Sunday morning for it to finally work. He had been over a week without having a bowel movement and he had not stopped eating.

Friday morning I left him just long enough to go home and walk Misty and make sure she had food and water. I had a quick lunch and supper in the hospital cafeteria. Other than taking time to make phone calls I was with him constantly. There was never another problem with the breathing treatments. I'm not even sure if it was the same therapist that came to his room after that first time. All in all he had a very good day that Friday. Other than my concerns about the Vicodin and the nursing home I was beginning to feel much better about his condition. He already looked better than he had in weeks.

He called his son's several times. I bought another calling card so he could call his family from his room. He talked to his niece and his sister. He also used it to call his two sons that lived 80 miles away. He waited but no one came to visit him. We spent the time alone together in his room.