lilyjohn Posted October 24, 2005 Share Posted October 24, 2005 I warn you before you start to read that this it is going to be long and intense. I learned a few things this week. I think they will help me and I am hoping that if I can put them into words that maybe they will help someone else. Save someone from going through some of the anguish that I have. Anguish and self doubts. I had a special job assignment this week. I took the job because I needed the money. Now that it is over I think I got that job because I needed it for another reason as well. I have tormented myself sense Johnny's death because I know that I made mistakes. There are just so many things that I wish I could do over again. I have had a very hard time. I know that Johnny understood and forgave me. I believe that God understands and forgives me but I have never been able to forgive myself. Things that I learned on this job have helped me to put things into perspective. Maybe now I can start to forgive myself. I started this job last Tuesday. It was to be a 7 day 24 hour a day job. As it turned out I left a day early because I have developed first a sinus problem and now a cold. I couldn't stay because that lady has enough problems. The last thing she needs is to catch a cold from me. I will tell you a little about the job then explain why and how it may help me. Why what I learned may help others. This lady is 81 years old. She spent the last 10 weeks in first a hospital then rehab. Actually she spent time in both places twice. When first released to rehab they didn't have the safty stap on her wheel chair secured. She stood up, fell and broke her hip a second time. She also suffers from Parkinson's disease and severe dementia tho I storngly suspect that she has Alzhiemers. Not only does she have short term memory loss but also she is very confused. She can't get any thoughts straight and says some very strange things. Her husband is devoted to her. This is a second marriage for both of them. They married when he was 60 and she was in her late 50s. They married on Valentine's day 24 years ago. When I learned that it was like a stab in my heart. Johnny and I would have been married on Valentines Day had he lived until then. He is very good with her physical problems and is willing to do or have anything that she needs. Yet he does not know how to cope with the mental problems. He would not allow me to help with any of the housework or cooking. He saves that for himself. I know the reason because I recognized it. He can control those things. He can not control what is happening to the woman he loves. When she asks him to do something that doesn't make sense or to help her do something that she can't he runs to the chores and tells her he is too busy instead of trying to explain to her. He can't help this. It is the only way he knows how to cope. When I saw that I began to realize that I was not the only one who reacted badly to a problem like that. I am beginning to think that there are many others who have done the same. I was very patient with this lady. I could talk to her and explain to her some things. I could comfort her when she got frustrated because her mind wouldn't work right. I could even tease a smile out of her. At first that made my guilt about Johnny even worse. You see my problem with Johnny was that once the anxiety attacks started I lost patience with him at times. I could have so much patience with this lady and my other clients but I lost patience with Johnny when I loved him more than life. How could that be? Johnny's problem was different from this lady. He had his full mental capacity. When he was not having the anxiety attacks he was very strong. Probably one of the strongest people I have ever met. Yet those attacks made him so afraid that he just couldn't handle them. I learned to talk him down from those attacks. I could do that. The problem was I also knew why he was having them. He would tell me that he felt like he couldn't breathe but he would say the names of his 3 sons over and over like a mantra. When you can't breathe you can't talk. What I didn't understand was that it didn't matter if he could breathe. What mattered was that he felt like he couldn't. Some of the things that caused the attacks led me to believe that he could stop them if he wanted to. That is where my inpatience came in. Not always but sometimes and that was enough to make me torment myself for all of this time. Now I can see the truth of our situation. I had to handle everything alone. I had to care for both his physical and emotional needs with no help at all. I did that very well considering the circumstances. I doubt that anyone could have done as well as I did. I have known that in my mind all along but my heart has not been able to accept it. I just couldn't forgive myself for things that I said or for trying to get some help with him when he didn't want anyone but me. The truth is I went days with very little sleep. The anxiety attacks would come at all hours of the day and night. Sometimes 5 times a day and sometimes 20 or more. Every time I found a way to help him someone would come along and knock us backwords with a careless remark. Then I would have to start all over again. I stuck by him. I may have been impatient with him at times but I never left him. He always knew that I was there and that he could count on me no matter what. For so long I have felt like I let him down. Even in trying to get all of the things that happened to cause his death acknowledged I failed. I know now that everything was stacked against me. When Johnny really believed that he would get well he was. He improved daily. No one could believe how strong he was or the progress that he was making. Then one careless remark by a nurse ended all progress and lead to his death. You see one day that nurse told him that it didn't matter how good he was doing or how good he felt that he would never be well. That he would be on Chemo for the rest of his life. He said that he didn't want to get his hopes up My God isn't that what you are supposed to do is give someone hope when they are doing so well when they need hope to continue? All during his illness I kept my own fears from getting the best of me. I watched him and he gave me hope but when his hope was taken away my fear took over. I had battled that attitude from the beginning but I just couldn't do it anymore. I never told him how afraid I was. I thought that I was protecting him but what I was really doing was protecting myself. I had had that attitude thrown at me so many times. His case manager asked me more than once what I was going to do when he died. She did that during the time that he was making the most progress. She was a cancer surviver and should have known better! I ran to work too because I could control that but not what was happening to Johnny. I still did everything for him but the one thing that he wanted me to do the most. Just set with him. Just be with him. I told myself that I was making the home for him that he had never had. I wanted to do that and he did need it but he needed me more. I had already given him what he needed the most. My unconditional love but I just couldn't see that so I kept doing instead of just being with him. I know now why. I could fight everything for him and with him. I could do everything for him as long as we both had hope. I just couldn't fight that deadly attitude without hope. I couldn't fight the ego of a doctor that mattered more to him than his patient's well being. I couldn't fight the brainwashing that his ex wife had done to his kids that kept them from giving what he needed from them. I couldn't fight it when they finally realized at the last minute how much he meant to them and let their guilty concious lead them to make a decision that they had no right to make without asking Johnny or me. He was awake and alert. He had already made the decision that he didn't want Morphine. He had told them that and he had told them exactly what he did want done but his wishes and mine were ignored. How could I fight all of those things alone? I know now that there was just no way. I know that I did all that anyone could have done given the circumstances. Maybe now that I see I am not the only one who doesn't do all of the right things for the one I love I can forgive myself in time. I know I will always have regrets. I will always ache for the lost days, weeks and years but maybe now I just won't blame myself so much. Maybe that is what Johnny would want for me. Maybe somewhere is is smiling and saying again "Good job Mama." As for the lady I was taking care of I am very worried about her. I suspect that she is dehydrated from a week long case of diareha. I tried to tell her husband just how serious it could be but I think he is in denial. I tried to take a nap when I got home but I just couldn't sleep thinking about her and having all of these thoughts going through my head. I have a call into my boss hoping she will get back to me and let me know how this dear lady is. My heart truly goes out to both her and her husband. I am sorry that this is so long but I just had to put these things into words to see if they make any sense. I want to tell everyone one that when you love someone it is impossible to always do the right thing. You have to have help. You have to care for yourself and you have to find a way to deal with what life is throwing at you. If you lose the person you love just always remember that you did the very best that you could. Don't ever torment yourselves with the kind of guilt that I have without understanding all of the circumstances and that you are not the only one who may not have always made the right choices.. Life is not always fair and sometimes we really don't have any choices even tho we think that we do. Quote Link to comment Share on other sites More sharing options...
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