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how quickly the green grass dies. Johnny's death part 1


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I'm sure that anyone reading this will notice a change in the intensity of emotions as I wrote about that last Friday. That will continue as I write about the next days leading to Johnny's death. There is a reason for that. In the past chapters I was writing as if I were someone else looking on at the situation. Yes I was writing about myself and Johnny but it always seemed like I was another person looking on. I suspect that is my minds way of helping me so the pain would not over power me and make it impossible for me to write the details of our story.

As I started writing about the nightmare of that last Friday a change took place. Instead of just remembering and writing about the things that occurred I started to relive the emotions that were involved. At other times some of those emotions would come through for a while but then they would leave and I could continue to write in an almost detached way. This time that is not happening. I suspect that is because the emotion is so much a part of my story that it would not be complete without it. It is because of those emotions that I am remembering more detail of those days. Things that I had not really forgotten but that my mind had just put aside for a while. As my story continues the emotions will still be just as intense or maybe more so. I can't turn them off anymore. You will experience fear, pain, hope, desperation, shock and agony as well as love, faith and betrayal and an anger that I never knew myself capable of.

Saturday November 30th was a very good day for the most part. Johnny seemed to be improving as each hour passed. There were still some problems but they seemed to be things that could be controlled. He was awake and alert for most of the day. He did take several small naps but other than that he showed no signs of stupor or the anxiety that had ran rampant in our lives for so long.

While his sons were still there that morning he asked all of us ladies to leave him alone for a while with his sons. We left and spent about a half hour outside. It gave me a chance to get some fresh air and walk a little. I was still exhausted from the previous day's events and having no sleep.

Not long after we returned to his room Johnny's family left and we were alone. I was curious about his reason for sending us out. I asked him and he told me that he just wanted to spend some time alone with his boys. Just a short time ago Valerie made the remark to me that she would have liked to have been a fly on the wall that day and know what was said. I told her that I had been told by both Johnny and Johnny Ray that they really didn't talk about anything in particular. I have understood that ever sense that day but no one else really does.

For years Johnny had wanted his sons to show him attention and that they cared. There were many issues between them causing problems and he always felt like they held those things against him. He also felt that they didn't love him because of that and things that their mother had told them. That day they were all there. There was none of the hostility that had been so much a part of their relationships. By then both older boys had been told by him that he loved them and they in turn had expressed their love for him. It was the first time sense they were children that he felt at peace with all of them. He just wanted time alone with them to savor that feeling.

While we had been down in the lobby I had looked for something to eat. The cafeteria was closed. There were some machines with snacks but no real food available. I found some crackers on a table and there were soft drinks too. A dish was provided to put payment in. I took a soft drink and several crackers back to Johnny's room with me. That would be all of the nutrition that I would have until that evening. I hit the coffee pot at the nurses station very hard that day. I know that nerves were all that were keeping me going.

The therapist made one attempt to lower Johnny's oxygen. It had been set at six liters sense arriving there from Centralia the night before. Instead of lowering it gradually and not saying anything she turned it down to 4 liters and told Johnny when she did it. He immediately had an anxiety attack. She turned it back up to five and a half liters and no attempt was ever made to turn it down again. I know the anxiety played a major part in his reaction to the oxygen being lowered but I also think it was too soon. He had been on antibiotics and Lasix for less than twelve hours. If he really did have an infection or fluids in his lungs they had not had time to work. All of the medication he was on would play a part too. Everything he was being given other than the antibiotic and Lasix work on the central nervous system to slow breathing.

Whenever his vital signs were taken he got very nervous. He still thought that an oxygen reading below 90 was life threatening. By the time his other vital signs were taken he had himself worried about what the oxygen reading would be. Sure enough when taken it would be below 90 and he would start to have an attack. I would again remind him that he could control it if he breathed slow and deep and it would go back up into the low 90s. The lowest I recall seeing it that day was 87. All other vital signs were perfect. He had no temperature and his heart rate was always in the 80s. He also had a blood pressure that was almost book perfect. It is very hard to understand how he could have either pneumonia or bronchitis with no temperature and all other vital signs remaining normal.

When his lunch was brought to him I helped him because of the IV and he ate it all. We also requested a tray for me for that night so I could have at least one meal. I was told it would cost $7 but decided it was worth it. The cafeteria was closed all weekend.

There was another man in the room with us. He was also supposed to have lung cancer. He was on both IVs and a catheter. He was also very confused and loud. He talked out of his head all day. The sitter that was provided for them spent all of her time with that man. I was with Johnny and could tend to anything that he wanted so it didn't matter. The only time we asked for anything was when Johnny requested the urinal. I would close the curtain and he would get out of bed and use it on his own. Then the sitter would measure and empty it.

There was one problem that was starting to be evident as the day wore on. Johnny could be holding something and his arm would jerk violently. It got to be so much of a problem that he had trouble drinking his coffee. Those jerks were also starting to worry him. He had been shaky often sense being in the hospital in July but those violent jerks were something new.

I left him alone for about twenty minutes that afternoon to go outside and make phone calls. I also went in search of something else to eat. When I returned to his room I noticed that he had a diaper on. It was obvious that it irritated him and embarrassed him.

I asked the sitter why they had put that on him. I was told because when he used the urinal he hadn't finished and had wet himself and the bed. To keep from having to change either again they had put a diaper on him. Not one time did he wet that diaper. He requested the urinal and used it without spilling one drop. I would take it from him and hand it off the be emptied. I suspect that either his hand jerked and he spilled it then or they just didn't want to be bothered with the urinal.

Johnny still requested the Vicodin that morning. By then everyone was aware of his addiction and that he was taking it by the clock. Still it was given to him every four hours. That afternoon they brought him a Morphine pill. Not long after he took it he again complained that it gave him a headache and made him feel strange. Once again he said that he would not take it again. When brought to him again he refused it.

All day he talked about them giving him the Ativan after he had refused it. He mentioned it to everyone. It was very upsetting to him because of the reaction it had caused and he could remember very little else from the day before. As he improved he started saying again that he was ready to go to Seattle. He made it very clear that he no longer trusted his doctors or anyone at the hospital in Centralia. He was also questioning everything given to him at Capital.

Each time someone listened to his lungs I would ask how he sounded and if he was moving air all the way down in both lungs. I was told each time that he sounded better and that he was moving air down in both lungs. He was looking visibly better as the day wore on but those jerks that had bothered him earlier became more and more violent. I was getting worried about them and he was becoming frightened by them.

Once again I helped him with his meal. He ate everything on his tray and drank everything as well. He even commented on his apatite and again said that he was feeling stronger than he had. It pleased me to see him eating so well and that he sounded full of hope again. I was certain once more that God was answering my prayers. I was looking forward to the trip to Seattle as much as he was. He was also telling everyone there at Capital that he was going there the following week.

That night he was once again given his Remeron, and Marinol. I'm not certain if he had the Prednizone or not. I do know that he was still getting the antibiotic and the Lasix. He was also taking 2 Vicodin every four hours. Not once did he complain of any pain nor did he complain of being short of breath except when his vital signs were taken. He would still start to have an anxiety attack but learned to control them with his breathing and watched as his oxygen level rose.

After his medication he fell asleep. I went to the bathroom and then outside for a while to make phone calls. When I returned he was awake and we talked for a while. I was very tired and it must have shown because he requested something for me to sleep on. We were told that there was nothing available for his room and there was no room to put anything had there been. One of the nurses told me that there was a room down the hall that had a sofa in it and I could sleep there. I waited until about ten thirty and then left Johnny to try to sleep for a while.

I was so tired that I passed out. Johnny was doing so much better that I wasn't as worried about him as I had been. The last sleep I had had was Thursday night when I slept four hours before his call had awakened me. That was Saturday night. I slept hard until around one in the morning. I got up then and went to check on Johnny. He was awake but assured me that he was alright and told me to go back and sleep some more. I returned to that room and slept again until four thirty. Luckily for me that I got that sleep. It would be the last hard sleep that I would have for nearly a month.

Before I go on to write about the last hours leading up to his death I must warn you. The details are very graphic because of the emotions that I mentioned earlier. Every detail of that day is branded so deeply in my mind and my heart that I don't even need to close my eyes to see them. I live with them every day of my life. It seems no matter where I go or what I do that doesn't change. I can see his room in detail and the view out the window by his bed. The fog that had stayed for over a week is so real to me that I can feel it's chill. I see and hear Johnny and everyone who came into contact with us that day.

I will not only write the details and things that I saw and know for sure but I will add speculations. Those speculations are not just casual thinking. They come from seventeen months of research as well as people who I come into contact with on a near daily basis. People who have lung cancer or have lost a loved one to it. I have read and heard in detail descriptions of their diagnosis and how it came about. I have also seen how much worse off most of them were at diagnosis than Johnny was. Many tried numerous chemo medications as well as radiation. In some cases the chemo failed and the cancer continued to grow. Despite all of that many are still alive years later. I have read descriptions of the deaths of some of those people. Not one of the things they talk about did I see with Johnny that last day or minute. If anything I am more convinced now that Johnny was not as bad as when originally diagnosed and that he would not have died when he did if his treatment had been different. I know in my heart that the drugs not the cancer is what killed him.

The first thing I did Sunday morning after waking was go to Johnny's room to check on him. He was still sleeping so I left to get me some coffee and use the bathroom. When I returned to his room he was still sleeping so I sat beside his bed drinking my coffee. The other man in his room was finally quiet. He had been very noisy the day and evening before. That had disturbed Johnny but he had never complained to anyone about it. I was very thankful that he had quieted down and was not disturbing Johnny.

I had been with him about a half hour when he woke up. He was very alert and told me that he had had a good night. He said that he woke up a few times but always fell back to sleep with no problem. There was no sign of the anxiety. He seemed calm and talked again about going home soon and the trip to Seattle to the other treatment center. We had coffee together while waiting for his breakfast.

He had not been awake long when he asked for his mirror and hair brush. He wanted to make sure that his hair wasn't sticking up. He was still very vain about his hair and wanted to make sure that he didn't have the "frisbees" as he called it. I held the mirror for him and handed him the brush. When he raised his arm to brush his hair his arm jerked so violently that the brush flew across the room. That upset him and he told me that he was afraid that he was catching something. He used a word trying to describe what he was afraid it was. I asked if he meant Parkinson's disease and he said "yes that's it. Do you think I am getting that?" I told him that I didn't think so but we would ask the doctor if he ever came to see him.

I picked up the brush and helped him steady his hand so he could brush his hair. While doing that I noticed something very strange. He had not shaved sense Wednesday and his beard had grown. Once he had started chemo not only his hair but his beard had turned snow white. That morning I noticed that over night his beard had turned from snow white to black. At least half of the hairs on his face were black! When I saw them I teased him about that like I had done when he started getting black hair on his head. I told him that he was growing younger instead of older and that I was going to dye his beard and his hair white so he wouldn't look younger than me.

The very first reason that we were given for shipping Johnny to Capital from Centralia was because his doctor would be there. Not one time did either of his doctors come to his room to see him. If one of them saw him at all while he was there it would have been on Friday night when he first arrived there in danger because of the low oxygen. I doubt very seriously if he would have been the one there to treat him. I had not seen either of his oncologists do anything in the months that he went to them other than listen to his chest. His doctor was treating him by phone. He could have just as easily done that without putting Johnny through the physical and emotional trauma of shipping him to Capital. We could and should have both been spared the things that moving him had caused.

I decided it would be safe to leave him for a few minutes so I could find something to eat. The cafeteria was closed so again I grabbed some crackers to go with my coffee then went back up to his room. When I got to his room the sitter stopped me. She told me that she had ordered another breakfast tray for him. When I asked why she said in a disgusted voice "he spilled his cereal all over himself and his bed. I had to change him and his bed and order him another tray." I didn't appreciate her attitude one bit and let her know it by my reaction to what she said.

When I got to Johnny he had tears in his eyes and my heart ached when I heard him say "I'm sorry Mama I didn't mean to spill it. My hand jerked and the bowl just went flying". I told him not to worry about it because I knew that it was not his fault and if they didn't like changing him it was just too bad because that was their job.

There was no reason for her to humiliate him like that. It was uncalled for and just damn cruel. They were responsible for what was happening to him and talked to him as if it were his fault. She acted like she was completely disgusted with him. I don't even want to think what she may have said to him to cause the tears I saw in his eyes.

While waiting for his new tray I helped him with what was left from the first one. There was toast and jello as well as apple juice and milk. He ate every bite left on that tray and drank the milk and the juice. He also drank the coffee that came with his breakfast. When the second tray arrived I opened the milk and mixed it with his cereal until it was thin enough that he could suck it through a straw. I fed the cereal to him and the toast and jello that were on that tray. He drank the milk and the juice on that tray too. When the trays were removed he had them leave that cup of coffee. He would finish it later in the morning.

It was about eight thirty when the doctor on staff at the hospital came to see him. He checked his ankles for swelling and found none. Then he listened to Johnny's chest. He asked how he was feeling and Johnny told him that he was feeling better. As the doctor was leaving he told us that he had asked a pulmonologist to stop in to see him. That pleased us both. I had heard that there were breathing exercises that could be taught to strengthen the lungs and help get more air with each breath. I also knew that a pulmonologist would be more able to prescribe medications that would make it easier for him to breathe. We both thought that finally he would get some real help. We were wrong again.

It took less than a minute to realize the reason that doctor was there. He didn't even listen to Johnny's lungs. The first thing he did was ask him why he had not signed a DNR. We were right back to where we had been Friday night in Centralia. Everyone who came in contact with him was trying to force him to sign a DNR. They all wanted him to just give up and die. I doubt very seriously that he knew any more about Johnny's condition than the fact that he was supposed to have lung cancer. He had arrived less than twenty minutes after the first doctor left. Maybe he had time to read Johnny's chart but there is no way that he had had time to see his test results or ex rays. He was going by what he had been told. Nothing more.

Johnny answered him with the same answer he had given Jump. He said "I won't sign it because I want everything done to save me. I came to the hospital to live not to die". That is when he was told things that were not only lies but clearly used to try to scare Johnny into doing what they all wanted. He told Johnny that he should think very carefully about what he was saying. He told him that if he stopped breathing a hole would be cut in his throat and he would be attached to a machine that would breathe for him for the rest of his life. He said that once a person is put on a respirator they are never able to breathe on their own again.

Johnny was clearly very upset by his remarks. He was very quiet for a minute and I could almost see him picturing himself on that machine. I was having those thoughts myself so I know that he was too. After a minute he sighed then looked the doctor right in the face and said "I don't care. If that is what it takes to save my life I want it done". At that point the doctor told him that he didn't agree with him but the choice was his to make. Then Johnny asked him about the jerks that were getting so bad. He told Johnny that they were caused because his blood gases were so far out of balance. He told him too that he would have to live with them for the rest of his life. I'm sure that thought was just as frightening to Johnny as the thought of the respirator was but he refused to change his mind. He would remain full code.

Before the doctor left he told us that he was stopping all of Johnny's medication because they interfered with his breathing. He said that if he needed anything for pain he would have to ask for it but suggested that it would make his problem worse if he took it. Then he told us that he was ordering a new anti anxiety medication. I wish that I could remember the name of it but I just can't. As clear as the other memories for that day are somehow the name of that medication is lost to me. He also told us that he was ordering a blood test. A test that would check his blood gases to see just how far out of balance they were.

Johnny was very quiet after that doctor left. He didn't have to tell me what he was thinking. It was written all over his face. I was shocked and disappointed because that doctor had done nothing to help. I felt let down and frightened by the things that he had said. In the back of my mind I knew that something just wasn't right but at the time I couldn't figure what it was. After a while Johnny looked at me and asked "why is everyone so determined to let me die?" I said "I don't know Honey. I really don't understand." That is a question that I still ask. Why were they so intent on letting Johnny die?

At the time I knew there was something wrong with the things that doctor said to Johnny. I felt that he was trying to scare Johnny into signing the DNR and I was very upset because I could see what his words had done to Johnny. Now I know what it was that was bothering me. Just a few years earlier a very close friend had suffered a major brain injury. He had been put on a respirator. After having Meningitis and a bacterial infection that should have killed him as well as another brain surgery he was later removed from the respirator. He not only breathed on his own but lived for months after he was taken off of it. That doctor had deliberately lied to Johnny.

While searching for information on Morphine and the other drugs that Johnny was given I found more information. Many times respirators are used to stabilize a person then removed. They are the basic treatment for someone suffering from a drug overdose or an adverse reaction to some drugs. Morphine being the one cited most. The violent jerks that Johnny developed are named Myoclonus. They are also a sign of either a Morphine overdose or an adverse reaction to Morphine. The condition is usually reversed when the drugs are no longer in the blood stream. Another lie that was told to Johnny uncovered.

It wasn't long after the pulmonologist left that blood was taken for the test that he had ordered. Johnny remained awake for a long time but he was still very quiet. When his vital signs were taken they were all good except his oxygen reading was in the low to mid eighties. When he saw that he started to panic and once again I talked to him and calmed him. The reading went back up to 90 but the nurse had already written down the lower reading. When I pointed out that it was up she told me that she had to record what it was when she first checked him.

A small bag was brought and attached to his IV. When I asked what it was I was told it was the new anxiety medication. It was a cloudy fluid with a slight yellowish tint. I saw them put that in his IV at least three times that day it seems like it may have been four times but I'm not certain of that. I have looked up all of the anxiety and antidepressants and have found none that describes what I saw them put in his IV that day. The name slipped my mind but it seems that it started with a C or an H. There are very few that are given intravenously.

By mid morning Johnny was getting very sleepy. He would doze off and on but never really slept hard. Even when awake he was so groggy that he couldn't keep his eyes opened. He was also very thirsty and kept asking for water. As the day wore on he complained of a very dry mouth and I asked the nurse for something that would help him. She gave me some swabs and I swabbed his mouth whenever it got too uncomfortable for him. He never complained of pain or shortness of breath. The dry mouth was what seemed to bother him the most.

He still had the diaper on but never wet it. He kept the covers on most of the time so I wouldn't see the diaper. I know that it bothered him because he tried to hide it and he picked at it all of the time. When he needed to urinate I would ask for the urinal and close the curtain. He was still able to get out of bed but because of the jerking he couldn't hold the urinal. He asked me to hold it for him and apologized for needing my help. It was so hard to watch the indignities that he suffered. Not only did he have to live with fear but he was being stripped of every bit of his personal dignity. Asking me for help with the urinal after the incident with the cereal was even more humiliating to him. My heart was being battered just watching what he was going through emotionally.

It was late morning when his kids came again. They were all there at once the three boys and mates as well as the four grandchildren. The room was crowded and I needed air. I left them there and went outside. I walked around a little and placed calls to Pam and Jacci to update them on Johnny's condition. While standing in the parking lot I could look up and see Johnny's window. I always kept my eye on that window when outside. If there had been any unusual activity at the window I was ready to run back up to him.

I stopped in the cafeteria and grabbed some more crackers and a soft drink. I hadn't ordered another tray because I found the food tasteless and not nearly enough for the seven dollars that I had paid the night before. I figured that I could hold out for one more day. The following day was Monday and the cafeteria should be opened again by then.

When I got to Johnny's room I heard Tom say "it's alright dad. Lillian's here now." I went to him and asked "what do you need Honey. Why were you looking for me?" He said "I just wanted to know where you were. I missed you."

I saw Johnny Ray at the nurses station. He was talking on the telephone. I suspected that he was talking to Johnny's doctor. After a few minutes he came to the room and motioned for us to move away from Johnny so he could talk to us. He told us that the oncologist said that Johnny's blood gases were so bad that they did not expect him to live through the night.

I stood there listening to him in disbelief. Johnny was drowsy but alert. All day the nurses had been asking him if he knew who he was and where he was. He got angry one time and asked if they thought he was stupid. He was having no trouble breathing and complained of nothing but that dry mouth. How could they be saying that he was dying? It just didn't make sense. He had been so well just three days earlier. He had gotten through that first terrible night at Capital. His oxygen reading tho lower than it should have been was still above the danger level. I didn't believe what we were told and said so. I knew too that God had answered my prayers there was no way that He would let my Johnny die.

After talking to us Johnny Ray went to Johnny with a question. He said "Dad the doctor says if you can hold on until Tuesday there is a pill that is supposed to shrink tumors. Do you want to try it?" Johnny replied "yes I will try anything". I asked Johnny Ray if the pill was Iressa and he said "yes". I had read about Iressa when Johnny had first gone to chemo. The day that the nurse made the remark about him being on chemo for the rest of his life I had asked about Iressa. I was told that it only worked in about thirty percent of people with lung cancer. He just brushed my questions off. I have learned sense that anything that works on thirty percent of people is a big deal. Nearly everyone takes Iressa at one time or another.

Not long after that his kids left and Johnny and I were alone. The curtain separating the beds was opened so he could see the man next to him. They started a conversation. The man told Johnny about a place that he had lived and asked if Johnny had ever lived there. Johnny told him that he hadn't but the guy kept insisting that he had known Johnny when they had both lived in that town in Oregon. Johnny just dismissed the conversation saying that the poor man was really messed up bad. He was still remembering his experience with the Ativan.

When his lunch tray came I helped him and he ate everything on it again. There was some kind of soup so I fed that to him with a straw like I had the cereal earlier that morning. Watching him eat and hearing how strong he sounded reassured me. I dismissed what the doctor had told Johnny Ray. I knew that there was no way that Johnny was dying. I had been with Mama the last days of her life. I saw how she was not only not alert but not eating and coughing up blood. Johnny had never spit up blood. He wasn't even coughing that much any more and he was eating everything that was given to him as well as drinking everything.

It was around lunch time when the nurse came with a pill for Johnny. I saw it was a little blue pill and asked what it was. She said it was something for the anxiety. I never thought to question her at the time about why they were giving that to him when he was getting an anxiety medication in his IV.

Before long he became very sleepy again. He would stay awake for a minute then doze for a while. He never said anything about how the pill made him feel. He had been groggy ever sense the first medication for anxiety had been put in his IV earlier. I never questioned them about that medication even knowing that earlier we had been told all of his medication would be stopped and he would have to ask for pain medication if he needed it. I just assumed that they knew what he needed. I trusted them to do what was right for Johnny. At the time I had no idea what they were doing to him.

It seemed that either the therapist or the nurse were always listening to his chest. Between them and the telephone he would hardly get to sleep before being woke up again. Each time I would ask the same questions "How does he sound and is he moving air all the way down in both lungs?" I always got the same answers "he sounds better and yes he is moving air all the way down in both lungs." That told me again that he was getting better and that the cancer had not grown to be as bad as when originally diagnosed. What the doctor had told Johnny Ray was making less sense all of the time.

Just a short while after giving him the little blue pill the sitter moved the chair next to Johnny's bed and closed the curtain separating him from the other man. I thought she was doing that to make it easier for Johnny to rest undisturbed. I didn't realize at that time that she did that because she already knew what to expect.

One time after a short nap Johnny woke saying "they were right there. Right in that corner." I asked who was there and he said "they were there in that corner talking. God and Satan were both there." When he said that a chill went down my spine. Not because I believed that God and Satan had been there talking but because I remembered the Ativan and what it had done to him. I waited for more hallucinations but none came. He continued to doze off and on.

A short time later the nurse brought him two Vicodin. When I asked why I was told so he wouldn't get upset waiting for them and have trouble breathing. She wanted to calm him down before it got bad. She had to wake him up to give him those damn pills. Why didn't I see? Why didn't I question them giving them to him? Why did I have to be so damn trusting and not believe that a hospital would do something to harm him? God I should have known. I had seen what the Ativan did to him. I knew they had given that to him knowing that they shouldn't have. We had been told that all of that would be stopped because it interfered with his breathing. Why didn't I see? My God where was my mind?

After the Vicodin Johnny seemed to sleep more often but for shorter periods of time. I would give him water when he asked and help him with the urinal. I also continued to swab his mouth when the dryness bothered him too much. For weeks he had sat with the phone in his hand night after night waiting with tears in his eyes for someone to call and they never did. That day they all decided to make up for lost time. The phone rang constantly. Every time it rang it woke Johnny.

It was around three in the afternoon when his sister Mary called to talk to him. He talked to her for a while then her daughter came on the phone. I don't know what she said to him but he told her that he didn't want to talk any more. Instead of hanging up he handed the phone to me and said that she wanted to talk to me. I had never met her or talked to her before that day. After the things she said to me I really don't want to ever meet her.

She told me that I should try to talk Johnny into signing a DNR. I told her that I would never do that. I told her that I knew his condition better than anyone and I knew what he wanted. I told her about the treatment center in Seattle that I planned on taking him to. She listened then started again telling me that he needed to sign the DNR. She said that she was a nurse and saw cancer patients at times. She told me that it would be best for Johnny if he died.

I stood there with the phone in my hand and anger like none I had known before took a hold of me. I knew that Johnny could hear what was said and didn't want to say anything that would upset him. Instead I told her that I had to go because Johnny needed me. How dare she do that to me? Is that why Johnny didn't want to talk to her? We had been through a living hell Friday night because of Jump's insistence that Johnny sign a DNR and his refusal had sent him off to Capital against his will. That trip nearly killed him but he still was alive and he knew what he wanted. It was his life, his body and his choice. I felt like screaming I was so mad and upset. Instead I went to the nurses station and had all of his calls stopped there so I could screen them and keep the phone from waking him up again. There was no way she was going to talk to Johnny again.

I called Tom and told him what I had done about the phone calls. I just explained to him that the phone was keeping Johnny awake so I had it switched. I knew that he was supposed to call later to check on Johnny. I didn't want to upset him or alarm him. That was why I called him.

At four Johnny asked for the urinal again. When he tried to use it he couldn't because his hand would jerk so violently. I didn't wait for him to ask. I held the urinal with one hand and him with the other. That was the only way he could use the urinal. I had to help him knowing how upset and embarrassed he was. Our relationship had been very open. We were not shy with one another but he had always been private and made me look away when he used the urinal. Everything else that had happened that day flashed through my mind. I was just so heartbroken and angry at his doctors for letting the anxiety get so far out of hand that he ended up there in that condition. Why did he have to suffer such indignities? It is just so unfair!

I was sitting in the chair by his bed not long after that when he asked me to take him home. He said " Mama will you do something for me? Will you take me home? I feel better now and I want to go home and get ready to go to Seattle next week." I looked out the window as dark was falling and the fog starting to close in again. I still had no idea how to get home from there and I knew that even if he was better he was not well enough to leave the hospital. He was still on the IV getting both his antibiotic and the anxiety medication. As much as I wanted to there was no way that I could take him home.

I explained all of those things to him but he still asked again for me to take him home. I decided to tell him that I would take him home the next day. I thought that might satisfy him. He answered with "alright Mama. I'll go home tomorrow at four o'clock in the morning." I will never know where he got that time from. Why did he say four in the morning? Did he somehow know? Was asking to go home one last effort on his part to save himself? There had to be a reason for him to say that. There just had to be a reason for him to say he would go home at four o'clock the next morning!

The nurse brought him another of those little blue pills and he took it after asking what it was. He had started to get a little restless by then and she told him it was the medication that his doctor wanted him to take to calm him. He took the pill. As she was leaving I asked what it was. She said that it was Morphine Sulfate. I knew that he had refused it the day before and that he had complained about the way it made him feel. He hadn't asked what it was so I waited for him to say something about it making him feel strange again. He never said anything. Instead he became more restless.

I had brought his Bible in out of the car the day before so I opened it and read to him. I knew that Psalms were his favorite part of the Bible so I started reading there. The first one that I read was Psalm 25 the one we had read many times because it seemed to speak so much about his situation. I hoped that reading to him would help him relax and sleep for a while. He had been groggy all afternoon but had not slept more than a few minutes at a time. I thought a good nap would make him feel better. I continued to read and eventually turned to Psalm 23. I had gotten only as far as the words "Thy rod and Thy staff" when he started to doze off. He kept repeating those words over and over "Thy rod and Thy staff. Thy rod and Thy staff" Soon he was asleep.

He wasn't still for long. He sat up then turned to his other side. No sooner had he gotten settled there than he was up again. The first nightmare had started Friday afternoon with them giving him Ativan. That had lasted for hours and now another nightmare was beginning. That too would last for hours and lead to a nightmare that never ends for me.

Instead of turning in the bed he would sit up then lay on his side. Then he was right back up again turning to the other side. No sooner was he down than he was up again trying to sit on the side of the bed. The sitter started helping him to lay back down but he never stayed. It was up and down from one side to another and he started calling me. Up then on his left side "Mama Mama" up then on his right side "Lily where are you Lily" then try to get up." I need you Mom." then down again on the other side up and down up and down always calling "Mama.Mom Lily" He kept trying to get out of bed and the sitter pushed him back down. The IV tubing was tangling and the needle pulling out of his arm. Still he never stopped calling me or moving. He was just constantly moving and calling me telling me that he needed me. I kept talking to him and reassuring him that I was there.

The sitter got a piece of netting and wrapped it around the needle in his arm so it wouldn't come undone. Then she put the side up on his bed. Still he wouldn't keep still. Over and over he called me and I would tell him I was there and touch him. Nothing stopped it he just couldn't keep still and he was always trying to sit up on the side of the bed. His feet would hit the rail and he would try to go over it and she would push him back down. Then it would start all over again. Moving constantly moving and always calling "Lily, Mama Mom where are you? Lily? He was hitting his feet so much that the sitter took blankets and taped them over the rails. That upset him and she told him that it was to keep him from bruising his legs. Still he continued to move. He could barley open his eyes but when he did I saw fear in them. A fear like none I had ever seen before. He knew that something was wrong but couldn't say. He just kept moving and calling me.

That must have gone on for an hour or more and I was wearing down. My nerves were so bad that I was starting to shake and I felt like I couldn't breathe. I had to get down and get some air but I didn't want to leave him alone. Finally I just couldn't take any more I had to get out of there for a minute. I told the sitter that I was going down for a minute and that I would be right back. She told me that she wouldn't leave him while I was gone.

I got outside and walked out far enough that I could see his window. The sitter was on the far side of his bed so I couldn't see her and he was too far away from the window for me to see him. I just watched in case there was any unusual activity. I doubt that I was out for longer than five minutes. I had to get back to my Johnny he needed me and I didn't want him to think that I had left him alone again.

When I got back to his room he was still moving constantly and still calling me. I started to answer him but the sitter told me to just touch him and he would calm for a minute. I did what she said but the calm never lasted for more than a second before he was back up moving again or trying to sit on the side of the bed. His dinner tray came but there was no way I could feed it to him in the condition that he was in. Very slowly he started staying down a little longer each time.

The shifts changed and a new sitter came. It was a young man who was in nurses training. I remember him talking to the nurse and sitter about his four children. I thought that he seemed too young to have four children but I had little time to dwell on it because Johnny was calling me again and moving, always moving. The new sitter went to his bed side and the one leaving called me. She wanted to talk to me.

We walked a few feet away from Johnny's bed and she said "before I leave I want to give you some advice. You need to wrap your heart around the idea that he is dying." I told her that I knew better and went back to Johnny. He was calling me.

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