lilyjohn
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It has been a while sense I have posted. In fact I am very much behind in reading here. Spring and Summer have me pretty busy. The days are longer so I am working much more. I have been leaving home a little after seven and not getting home until after six in the evening.
I still have good days and many bad ones but I am coping. Not a day goes by that I don't ache for Johnny but that is something that I have learned to live with. I know the pain and loss I feel will never really go away.
Despite all that I have lost I can't help but feel that I am where I belong and doing what I am meant to do. Some of my new clients are in their 90s and one has been very neglected. My heart truly goes out to her. I am trying to make up for some of the care she has not had. She has some yeast infections that were never noticed or treated and she is unable to fix meals for herself. I guess her son is trying to do right by her but he not only doesn't know how but just doesn't spend the time to learn what her problems are.
I started with this lady three weeks ago. Sense then I have got her into the shower twice and have gotten her on a routine of clean clothes. I found her feet in terrible condition so I soak them and put lotion on them every time I see her. I am also fixing her things to eat to last until I get there the next time. Right now I only see her 4 times a week but I am hoping it will become 5 week days and someone else will go on the weekends. Right now I am going every Sunday. It is a 70 mile round trip for me from my home for just 2 hours pay but I just can't let this lady down. She needs care so desperately. She has insurance to pay for her care but I have to try to convence her son that she needs it. He is not an easy person to get things across to. Her neighbors told me that for months they had been trying to get him to get help for her.She wouldn't let anyone bathe her and wore the same clothes everyday and slept in them at night. It is easy to see why she got a yeast infection.
With this lady I have used all of my training and all of my experience both in my work and personal. Perhaps that is why I am here where I am now doing this. I just hope I can make a difference in her life. Each day when I leave she hugs me and says that she loves me. She thanks me all of the time. What started out as just another job has turned into much more. She told me a few days ago that she doesn't know what she would do without me. My training and experience tells me that it is time for someone else to come in once in a while. I know it is not good for her or me to get too attatched but it sure is hard not to.
I have tomorrow off. That will be my first full day off in 3 weeks. It is hard trying to keep up my home and yard but I am not too far behind. I sure hope I can catch up in my yard tomorrow the flowers are all so beautiful if I can only finish getting rid of the weeds.
I would really appreciate it if you would all update me on some of the people here. Spacificlly Dean Carl and Elaine and Frank Lamb. I know there are others but my mind is drawing a blank so if you can think of anyone that hasn't posted often lately please let me know how they are doing. Ray S and Kieth and Carleen too. Just so many and so little time to read up on everyone. Just know that my thoughts and prayers are always with all of you. I just never knew there was so much cancer. I seem to come across someone everyday who has it or has lost someone to it. I pray that soon a cure will be found to end this nightmare, maybe then I will be able to find some peace with the pain the monster has caused in my life. God bless and keep all of you safe, happy and healthy. Lillian
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I understand so well how you feel. As they say, been there done that, and many times I still am there. I wish you all of God's blessings and hope that someday we will all find a measure of peace. God bless you. You will be missed.
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Shelly I am so sorry for your most recent loss. It seems sometimes like certain families are targeted for tragedy. I pray this is the last loss you will have for many many years and the very last you suffer because of this beast.
As the others have said it is time for someone to set up and take notice and do more to prevent this monster from growing more. There has to be a way to find more of the causes and ways to control this beast. Seems that somehow LC always gets lost in the shuffle when research and new treatments are needed most.
Again my heart goes out to you and your family. Lillian
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I don't understand. If it is just in the one lung why didn't he just remove the whole lung?
Stage 1V means it has spread somewhere. Did they tell you it has spread? Doesn't sound like much of a doctor to me. Too eager to just give up. I would think about Cancer Treatment Centers of America. They have a very good reputation.
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I think the anger is something that I still have to deal with after two and a half years. At the time I really believe that the anger wasn't so much depression as it was frustration. I was there for Johnny and did everything for him and I didnt' mind that. I love him and wanted to do everything to help him and support him. The problem was that he wanted and needed his kids and he got nothing from them. I would get so angry because I saw how much it hurt him. A part of me was jealous too. I was there and would do anything for him why did he need them so much when they treated him so badly?
Most of the time I have come to terms with those things now but there are still times when I remember the hurt his kids caused and the careless way the so called medical professions treated him that I want to throw something.
We as cargivers are put in a situation that drains us physically, mentally and emotionally. Every where we turn we have to face people who want us to stop believing that the one we love will survive. We have to stay positive for him and try to hold ourselves together. Often we have to do those things at the same time we battle to get the every day things of life done. We have to do it while dealing with treatments and side effects from those treatments and when there are kids that not only don't give any physical support but no emotional support it becomes so frustrating that the anger takes over.
Johnny even asked me one time if I was mad at him. I told him that I could never be mad at him but I was mad at the situation. He confessed that he felt the same way. An aide told me that I should go to Goodwill and buy and old doll and kick it, beat it and throw it around to rid some of the anger and frustration. I never got the chance to do that because things went down hill too fast but sometimes I still wish I had that old doll. I could sure give her a run for her money
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I just saw your post or I would have posted this earlier. Johnny had COPD and I know that he did very well while on the Prednizone when he was getting another drug with it. I just recently found this article that explains why. The drug he was taking was Theophylline and I'm sure stopping that was one of the things that led to his anxiety problem. It relaxes the air ways and makes it easier to breathe. This study I found may help you know what to ask for. I do know that the Theophylline worked. I'm not sure if it was just working on it's own or if it was because it broke that barrier and allowed the Prednizone to work. You can read about the research here http://news.bbc.co.uk/2/hi/health/4408107.stm
Best of luck. I sure hope this works for your mom.
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It has been not quite two and a half years sense I found myself where you are now. Beyond a doubt it was the most difficult time of my life. I know that right now nothing anyone says can really bring you comfort. I felt that life and everything about it had lost purpose. There was no reason to go to bed and even less to get up each day. I felt like I had some wild animal inside of me eating it's way from the inside out.
Time does make it better. You will never really heal but you will learn to cope with the change in your life and it is when you accept that that things do start to get better. There is no time limit on grief and pain. As time passes you will find that the most severe pain comes less often. Even now after so long I still have days that are just like they were in those first days and weeks. I have learned that when those times come it is best to just let them take over for a while. Let the tears flow and bury yourself in the memories for a while. Then start thinking about the next minute or hour. After a while you will be able to think about tomorrow. I still don't allow myself to look too far into the future. That is just too frightening. Imagining a life without the one who is so much a part of you is just too much.
Eventually you will find that reaching out to others who are going through what you have will help. Helping will bring back all of those painful memories but it will make you feel like something is coming from experience besides the terrible pain and loss you feel now.
As for sleeping with his cap. Never be ashamed of that. It brings you a small measure of comfort and that is what you need. I still sleep snuggled with Johnny's robe every night. It is a habit that I just can't seem to break.
My first unusual experience that made me feel that Johnny was still with me took place the day after his death. I have been fortunate to have had many extra ordinary experiences sense his death. Still I question myself about them. There is always that small seed of doubt. I am always looking for conformation that he is still with me. These experiences and expectations are talked about much more openly today than just a few years ago. I think that is a very good thing but I also know that there are some things that we are probably never meant to be totaly sure of. I think that is because there are some things that we just have to take on faith.
My heart truly goes out to you. I know only too well how lost you are feeling. May God give you what you need to get through today and then again tomorrow. There is not much else that we can ask for but as time passes you will see that as hard as it has been you are still a surviver and that is what it is all about.
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I just wanted to tell you that our Homehelpers newsletter came out. As I said before I mentioned this site at our monthy meeting. There is a small article in the newsletter. It simply states "For those who are interested in the lung cancer support address here it is" then it gives our address and below it says"this is a place for patients, family members and care givers of those with lung cancer to get support. You will find both support and a lot of valuable information there."
Not a big article but it does reach quite a few people. It will be interesting to see if anyone joins us because of the publicity.
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For the shortness of breath ask your doctor about Theophylline. It relaxes the airways and is often used long term for people with asthma. It worked great for Johnny. Also a word of caution. Oxygen can help if the SOB is bad on a low setting but a high oxygen setting can increase the risk of inbalance of blood gases. That can be dangerous.
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This truly does seem like the end of an era. I wish him the best of luck. Wouldn't it be something tho if he would find this site and read some of the stories here? No one could be in a better position to help to get the word out about some of the issues that concern all of us here.
Breaking that stigma and getting more research into other causes and more treatment options could well get attention if he would mention those things. Maybe when he is better able and past the initial shock he will do a program about lc. That would be something that has been needed for a long time. That is if he would cover all of the issues not just the smoking connection.
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It seems that I do not know how to use the quote option!
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I certainly agree with your statements about the tobacco companies and the government. Having been a smoker I can understand it only too well.
I know that lc can strike anyone, smoker and non smoker alike
Yes we all know that so having said that I have to ask. Do you or anyone seriously believe that the only reason someone would have lung cancer is because they smoked thrity years ago or because they smoked one cigarette? Can you or anyone believe that knowing that the air we breathe, the water we drink and the food we eat are full of things that were never meant for human consumption?
We all know that smoking is bad for us. We know that second hand smoke can harm others but we also know that there are other things that cause lung cancer!
I think the fact that so many have bought into the idea that smoking is the only cause of lung cancer is the reason so little research is done to find other causes. How can we ever expect to find a cure when we don't know all of the causes?
How many people are diagnosed in the later stages because they were not exposed to tobacco smoke so they are not tested for lung cancer? Yes, let's understand the dangers of smoking and pass that knowledge on to others but at the same time let's demand that research into other causes is escolated.
It is bad enough that that stigma is attatched to those with lung cancer by the rest of the world but please let us remember that there is much left to learn and that can only be done when people get past the cigarette conection and search for the other causes
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I have no advice but am sending a lot of love and prayers.
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Keep that miracle going Bill. We all rejoice at such good news.
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Hang in there Dave. As you can see you have a lot of love and prayers coming your way.
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I have been thinking a lot lately about life and choices. I want to share those thoughts with you. I know there are some who will think "oh no here we go again". To those people all I can say is stop reading now. For those of you who have gotten something from my past ramblings or who may be interested in what I have to say please continue to read.
Many things have brought us to this board. Some came for support, some for information and some because they find if not safety some comfort in numbers. Many came for all of those reasons. The one thing that we all have in common is that Lung Cancer has played havic in our lives one way or another. We share one common enemy, Lung Cancer.
No one here is the enemy. I know at times our convictions about certain issues can make it seem for a while like we are enemies but in our hearts we all know what the real enemy is. We may not always agree but that is what makes us individuals. Each of us brings our own life experiences. Those experiences have shaped our convictions and our beliefs. I know as well as most and probably better than some that circumstances can change our convictions and beliefs in a heart beat. A very wise person, whose name excapes me right now, once made a statement that goes something like this "I may not agree with what you say but I will fight to the death for your right to say it". That my friends is part of the very basis of our country.
Every circumstance is as unique as we are as individuals. What may be right for one can be wrong for someone else in similar circumstances. Life often gives us choices, very hard choices. Who is to say witch of those choices is right or wrong? It all depends on the unique situation and the individuals envolved. When and if the time comes that only one solution is seen as the right one we not only lose our individuality but a part of our humanity!
The fact that we are so different is what makes this board so great. We each bring something of value because we have had different experinces and because we come from so many places. There are people here from nearly every state and from around the world. Those of us from the United States know that the very reason for our existance is freedom of choice.
Our constitution guarantees us the right to Life, Liberty and the Persuit of Happiness. When one of those rights is threatened they all are. Thousands of people have died to assure us those rights. Many others have died to try to give those rights to others. If we lose one of those rights their deaths will have been invain. Our whole way of life will change and not for the better.
Every day of my life I struggle. I live on the edge of depression and have to fight it every day. I work hard and barely make ends meet. I often have to decide if I should pay a bill late or buy something that I really need. I have no medical insurance because I just can't afford it. If I let myself think about how dangerous my situation could become I fall into that pit of depression. I ache for Johnny with every heartbeat. I am 2600 miles away from my family.
Now let me tell you what is good about my life. I have faced heartache and more loss than most people ever know in a life time but I have survived. I am not weaker because of it but stronger. I am more humble and feel more compassion but those things don't make me weak they make me strong. I have learned to value life more than many do. When I talk to my family or see them the time we have together has become much more meaningful. Many of them have become not only family but friends. I have more friends than at any time in my life. Not friends because of birth circumstances or marriage but by choice. My choice and theirs. I keep the memory of a love in my heart that many have never had the honor of knowing. Things that I would have never taken the time to see before bring me joy. I have a relationship with my God that I would never have thought possible.
There are many who would judge my life as having no quality. They would judge only by what they see is wrong not what I know is right! Others would judge because they may think that I have no value to society. No one has the right to judge my quality of life. I reserve that right for myself. I think everyone deserves that right. God and God alone can judge my value to others or society.
Should God decide that it is time for my life to end I think I would be at peace with that but I believe that I have much more left to do. On the other hand should someone decide that they view my quality of life as too poor to continue or that they have the right to end my life when they choose they will have one hell of a fight on their hands
That is how I feel now. These are my convictions but as I said circumstances could change those beliefs and convitions in a heart beat.
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Oh what wonderful news
Grandchildren are a most special gift. I hope that your daugter will give you the most precious healthy grandchild imaginable.Just a thought about your dad. I heard it said somewhere, maybe on this board, that when someone passes they become the guardian angel of the next child born in the family. Just a thought that I hope adds to your joy.
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Oh boy bioethicists are envolved. That says it all. They believe that a peson should have a year to decide it they want to keep a child or kill it because it is non person at that time. Well folks if you listen to them and let them make decisons you will see that in their eyes most of us are non persons and deserve to die!
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I am afaid that you missed my point entirely. I don't believe that she should have been kept alive for so long especially if she stated that she would not want to be. I just think that there were plenty of oportunities to let her die natrually. I am very afraid that allowing someone to decide when and how someone will die and making it happen will lead to serious abuses.
I know personally that people are not always treated fairly and their wishes are not carried out. I think allowing this to happen will make it easier for people to make that decision for others and do it more openly. That is what I see as wrong. As I said before letting someone die and deliberately deciding when and how they will die are two very different things.
As for Morphine I have no doubt that it has it's uses. I know that when a person is ACTIVLY dying it eases them out of this life with less stress. When given the RIGHT amount to control pain it is very good. When too much is given or when there is no pain it can and does kill and not always when the person would die if not medicated into a coma.
This is a very serious issue. I really don't think that she should have been kept alive for any amount of time if that was her wishes. The fact that she was points to the fact that there was more than her wishes being considered.
Thank God that she is no longer suffering. I know that most cancer patients actually die from starvation. We were told that when Mama died. That was natural she had a serious illness and it took her life. Starvation may have been part of her death but it happened naturally. From all that both sides have said Terri had no serious medical problems. Starving her was just not the right way to do it. If they really wanted to kill her they should have done it honestly and given her an overdose and got it over with. No one knows for sure that starving was not making her suffer. As far as I know there has been no one who has starved to death and came back and said it was easy
As far as the brain damage I will tell you that I saw with my own eyes that they can still feel. Harry was much worse than she was yet when his brain could not control his body temperature and it would go from 92 to 106 degress he would shiver and it was VERY obvious that he was in distress.
I really respect all of your opinions on this subject. I too think that the circus made around this poor woman was a disgrace. I just think that you have to have a place where you can draw the line. Let a person die if that is their wish but don't keep them alive for years then kill them deliberately when it is convient to you!
You mark my words when I say that this case was only the tip of the iceberg. This will happen more and more now and in some instances where there is not nearly enough reason to end someones life. A right to die will become a duty to die. When that happens we all lose!
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Okay I guess everyone thinks I have really lost it this time and just don't want to say so!
I just know that what happened last night was very unusual and there seems to be no explaination for it.
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It's over. I just heard that Terri has died. I pray that this is not going to be the way of the future. God bless this dear woman. She deserves to be at peace
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How many people are there in jail right now who have helped a loved one die? I remember hearing about several cases where a person just couldn't stand to see their loved one suffer. In those cases the person was in agonizing pain and begging for help to die. One man I remember was in his 70's and was given a long prison sentence. Why is this different? Why can these people chose to take someones life and not be punished for it?
As I said before there is a big difference between letting someone die and taking their life. Not to mention how cruel this way is. How do they know that she is not suffering? If they think she is not suffering why are they giving her morphine to ease the suffering? That is crazy they are contradicting their own claims!
Once you legalize taking someones life you open a door that can not be closed again. I know for certain that this happens a lot but is never admitted to. If this case sets a precident it will get worse. People will be chosing when and how someone will die and do it openly and there will not be one damn thing that their loved ones can do to stop it. Where do you draw the line?
One more thing. Even if Terri did say at one time that she would not want to be kept alive artifically I would be willing to bet she didn't mean that she wanted to be starved and dehydrated!
Who will be the next one who finds it more convenient for someone to die? You can bet this won't be the last time we hear of this
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. I have to tell you what happened last night. As you know I have had some pretty strange things happen but this was one of the strangest!
When I come home from work Misty always gets excited. She follows me around whining and barking until I set down and take my shoes off. Once I do that she knows I am staying home. She settles down and goes to sleep and pretty much ignores me until it is time for her to go outside or she sees me eating something. Last night was very different.
She didn't seem to be settled all evening. When I would go to the bathroom she would follow me and set by the door whinning. Every move I made she watched. Then later it got even stranger.
I went to the bathroom and she again followed me. She whined the whole time I was in there. When I came out she followed me whinning and grabbed at my leg with her feet. When I sat down she started whinning and couldn't settle down. She would put her feet up on my love seat and whine and look at me in the strangest way. I would pet her and she got really excited. When I told her to lay down she would for a minute then start all over again. This went on for about a half hour then she just lay down and acted like she always does.
I have to say that the only time I ever saw her act like that was when she hadn't seen Johnny in a while and I took her to the nursing home to see him. She was so excited and looked at me so funny. I really think that she was seeing Johnny instead of me. Could it be that he was letting her see him and when I petted her it was the only way that he could? In other words to her was it Johnny petting her instead of me? I know that sounds crazy but it is the only explanation I can find for the way she was acting.
She has acted strange a couple of times before but never to this extent. I have to tell you while this was happening I could feel Johnny near. Could he have somehow imposed himself on me so Misty could see him and feel him pet her?
Well one more episode in my continueing saga! Please let me know what you think.
Stopping in to say hello
in GRIEF
Posted
Thank you Haylee and Don. I try to come here and read once in a while but there are so many new people it is hard to catch up once behind. My time is so limited and there is just so much going on in my life right now. I will post about some of those in the general forum.
I try to find news of the people who have been here for a while but I haven't had much success. I'm still hoping to hear from some of them. Don you and Lucy are truly an inspiration to those who are new to the journy. Lucy is really someone who gives hope to many. Sometimes I believe that we all have a roll to play in this life and what we go through along the way prepares us for that roll, obviously yours and Lucy's roll is to provide hope for those who need it so much. God bless you both for that.
I am very proud to report progress in the lady that I mentioned. I have been seeing her only 4 days a week but starting tomorrow I will go each day during the week and someone else will go on the weekend. I have talked to her son and he has bought her a lot of the things that she needed. I really don't think he realized just how bad the situation was. She had very little food other than things that need to be cooked and she doesn't use the stove nor know how to operate the microwave. Many days she was just filling up on orange juice. Now she has a variety of snacks available when no one is there to cook for her. He bought her new underwear and a new gown to get her out of the tight girdles and pants all of the time.
I have her on a routine of showers and each day I bathe the area where the yeast infection is and put medicine on it. If things keep going like they are it should be well soon. I can see great improvement there. Her feet are normal now. There are a few very dry patches of skin (I think that has to do with her age of 91) but there is no more dead skin. I still soak and put lotion on them, not because they need it any more but because she likes it so much. Her neighbors tell me they can see a great change in her. She smiles a lot more and she looks so much better with clean clothes and a shower and head wash regularly. I just feel so honored to have been able to help this dear lady. It is such a good feeling each day when I leave her and she hugs me and tells me that she loves me.
Now I really do feel as if something besides heartache is coming from the pain I have suffered the last few years. I thank God for giving me this.
Bless all of you and please keep me informed about the people I miss reading about here. I do worry about all of you. Love Lillian