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I need to talk. I am losing control I'm so desperate


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I just need someone right now. I am so alone and so deperate. I handled the day okay until a short while ago. I was able to keep the memories from overwhelming me. But now as what was the last few hours of Johnny's life last year are upon me I just can't keep it under control.

There is no one to talk to. No one who understands. My children tho loving are far away and they didn't know Johnny and can't concieve of the love we shared. His children just want to forget and go on. My niece is reachable by phone but talking to her is impossible. She lost her husband almost four years ago and still has problems talking about it. Anything I say about Johnny upsets her and she is bi polar. Johnny's niece has been my rock but she is taking care of her dad full time and dealing with her mom's medical problems too. So there is no one. I am as alone tonight as I was this time last year. I am still seeing the same images and still hearing him call me time and time again. Everything that happened that day is tormenting me.

That morning he got so upset because his hands would jerk and he couldn't hold onto anything. I have learned sense then that it is called Myoclonus and is caused by morphine and some other drugs. While I was gone in search of something to eat his tray was brought to him. When I returned to his room the sitter informed me that she had ordered another tray for him because he had spilt his cereal all over himself and the bed. She said it with such disgust. When I got to him he had tears in his eyes and he said "I'm sorry mama my hand jerked. I didn't mean to spill it>" My heart was breaking for the pain that caused him. I told him that he had nothing to be sorry for I told him that I understood. When the new tray came I mixed his cereal with milk and fed it to him with a straw. He ate and drank everything on both trays. He was so hungry and so determined to make himself well again.

Why did they have to torment him? That damn doctor that came to his room that morning made no attempt to help him. He just tried again to talk him into signing a DNR. Then he made him think that he would have a machine breathe for him the rest of his life and have to live with those jerking movements. They tried everything to scare him into doing what they wanted and still he refused. Because he wouldn't co-operate they just made sure that he stayed without monitors so long that he would die and they would not have to honor his wishes. I was there. I saw the pain that decision caused him. I saw him struggle with seeing himself like that and seeing himself die if he did what they wanted. I held his hand and I was there. No one else just me!

I watched him toss and turn and try to sit up and then lay down again when the sitter pushed him back. I heard him call me over and over again. I watched when the nurse tried to put pills in his mouth and he pushed her hand away telling her that he would not take it unless she let him do it himself. I heard him question her because he was afraid that she was giving him Ativan again or codiene. Neither of us knew at the time that codiene comes from morphine. We never questioned when they gave him that garbage without him asking for it. They just kept saying it was to calm him down. They had him so drugged up with that and the Vicodin but still he knew enough to question them. Still he had the strength and determination to control his hand long enough to take my hand to his lips and kiss it. He wanted to fight for his life and he wanted to stay with me. He was happy for once in his life. He didn't want to die. He just wanted a chance and they robbed us both.

I sit here and watch the clock and see the time and I know exactly what was happening at this time last year. I see it all and it is tormenting me. I can't stop the pictures and I can't stop hearing him call me.

I have tried everything to get someone to at least look at what they did to him but no one will help. I have went through the channels with the medical board and I have written to members of congress and the media. All anyone is interested in right now is war. Just one good man who was tormented and died too soon means nothing to anyone. All they care about is war and the coverage they can get.

I can't get his kids to help. They have questions too but they were not there. They didn't live through the horors that I did. They didn't watch him struggle to live and they didn't see him die. When they found out that the attorneys don't want to touch it because he had cancer they just let it go. I offered to pay for his medical records but they never would get them.. I have no rights because we were not married and if I did have any as his domestic partner they were swept away because I was his legal caregiver and the state was paying me. There is no where I can turn for justice and no where I can get the anwers to the questions that haunt me.

Everyone thinks that because it has been a year I should "be over it". My God it is my life they are talking about. How can I get over that? How can I stop those pictures that play over and over? Who can I turn to? I have so much evidence if only someone would take the time to look.

I am so sorry for going on so much. I just don't have anywhere else to turn right now and I feel like I am losing control. I have to be strong because I have to make a living and a life for myself but sometime it is just so hard to be strong when I hurt so much. When I need my Johnny so much. Lillian

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I am so sorry for your pain and that you feel so alone. I wish that I could be there for you to hold your hand and validate your feelings. I know what you are feeling is REAL and it will just take how ever long it takes. Don't worry that others think that you should be over it. YOU are the one who "writes your own story". You will know within your self when It becomes less painful.

God Bless and Take Care, Shelly

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There is a void which lives within me and there are my memory's which each time when I taste them are precious...but they too let me realize why I am thinking them.And that then always hits home.

there is no way out ....

I feel much the same about the medics as you do. Why do they give for example chemo therapy to someone who is so seriuosly ill that he than dies 5 days later?????????What the hack for??

Why bitter his last days?They can not in ernest have thought that this would have cured him of a desease which is up to this day fatal.

I am still hopping on that subject....but it does not touch or bring back Richard any more.

In general there is not enough done in research against lungcancer.

In particular if you feel, know, have evidence to proove lack of attention may be you could consider asking a legal person about your possibilities?

Just trying to think what I would do in this case.As it happens I have a lwyer friend so I would natuarly end up on this route.

Lily, I have got a job now and am amongst people because this very lawyer thought I needed to brake out of my shell before I was going to drown and turn bonkers (crazy - in England).

As of monday it still has not brought any relief ...more over it makes me realize how people don't want to touch subjects with me in case I could end up in tears.

I am still with the same sequence in my head every morning ....I still see Richard in his last minutes, I still pull him up in his bed towards me, but before he could sit he died ....it burned his last whiff of oxygen.

I thought about one thing which for me seems good and that is that he at least achieved being with you .That you had found each other again.

I know that it was only for such a tiny amount of time but it was there.He finally found his love ...at the eve of his illness but think how it would have been without you.

You were able to give him so much.

Richard told me so many times that he would not have dreamed to go through all of his treatment without me at his side.

He got all my strength and his together to fight.

It helped .Now I am sitting in this empty world wondering about what sense it all makes.Why do we have to get hurt so much ?Richard had similar thoughts when seeing an 11 year old girl in chemo therapy.This is what I cannot understand.

What did he do to have to go so early out of a happy life and marriage?

And in your case it is tragic to have not found him again earlier.

But all our if's and but's don't help us a bit. I know ...even so I am doing that all day.I am looking for finger prints on things in the house.

I keep his tooth brush and morning gown next to mine.

What can I say to you ?I can internetingly put my hand around yours for a moment telling you that you are not totally on your own ....we are in similar circumstances.I need to close now and prepare for tomorrows job.

Speak to you again in a few days time

Ciao Bettina

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Savor the time you DID have together, we all know that a MILLION years with the ones we love would NEVER be enough.

"If you live to be a hundred, I want to live to be a hundred minus one day, so I would never have to live without you." (Winnie the Pooh)

I understand the pain of losing someone you love, REALLY love, with all your heart....watching a piece of you die along with them....a vise on your heart....the shattering of the same. It's like you've shared the same breath for so long it hurts to even BREATHE without them... But it will lessen....the hurt won't be so acute, so "vicious". And you'll NEVER forget, but remembering won't hurt so much.

Hang in there, Lily. "Life" will be here when you are ready to rejoin.



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