So I never started. If I would get teary-eyed, I would blink back the tears and keep blinking until the feelings would pass. My doctor insists I haven't properly grieved for my sister and ever since she told me that a few weeks ago, I've thought really hard about it. She's right, I have never properly grieved for my sister. Not even close. Too busy being strong and all that. Heaven forbid I cry over my dead sister and make everyone feel uncomfortable. It's best just not to cry at all. The hardest I cried after my sister passed away was standing in the shower the next morning. It all came to a head and I stood in the shower and cried. It wasn't enough.
You see, because I feel with every fiber of my being that I was the one who killed my sister. There. I said it. Or wrote it. And the guilt I've been living with for eight years has been like nothing I've ever gone through in my 45 years on this earth. And trust me, I've gone through some pretty horrendous things.
So there we were, sitting in that blasted family room. If you are ever in the hospital and the doctors come to you and say "Can we talk to you? Lets go to the family room." Run. Run in the opposite direction as fast as you can. Because the family room is never a good thing.
My sister had been on life support for days. The prognosis was grim for her near the end of her life, but the day she crashed and my poor mother was in her room and had to make the call to either let her go...or put her on life support...was the grimmest of all. I remember just getting out of the shower that morning and receiving the call. My mother. Hysterical that my sister was not breathing and asking me what to do. My sister had made it very clear to everyone she did not want to be put on life support. But there my poor mother was, in that room, with my sister crashing and a nurse yelling at her "You can't let her go! We have to try and save her. You. Can't. Do. This. To. Her!" The commotion over the phone was unbelievable so I can only imagine what it was like to be my mother at that moment.
I said "No mom. This isn't what she wanted. Don't put her on life support." My mother was screaming and crying by this point "But I'm asking her and she's nodding she wants to be saved." I can't even imagine what my mother was going through at that very moment. So I said "Well then save her. I'm coming."
I drove as fast as I could to the hospital and ran to where my sister was. My mother caught me in the hallway and said they were still working on her. Trying to get that tube into her hardened lungs. Doing everything she begged us not to do to her. When they finally let us in to her room, I stood there with my hand clasped over my mouth and started to cry. It was so awful. To make matters worse, the nurse came in to give my sister something for the pain and my sister reached up to grab her arm to take the needle away. After that, the drugs came sooner to keep her from doing that again.
Two days later the head of the ICU took me aside and said "I'm talking to you because you seem to be the strongest. Your sister should never have been put on life support. Her organs were so damaged from the disease and drugs from fighting the disease that even if a donor was found...she would never have been a candidate." This did not help with the guilt of seeing her in that room with all those tubes hooked up to her. But I knew it was true.
The next day the doctors took us into...the family room. The dreaded family room. The head of ICU, my sister's doctor, my mother and her husband, Gregg and I and a priest. It's never good to go into that room, but when a priest is called in, you know things are about to get a whole lot worse.
The head of the ICU told us there was no longer any hope. That a decision had to be made to take my sister off of life support. Oh lord. Everyone sat there. My mother was crying and hysterical, her husband just kept saying "One more day. Maybe we'll give it one more day." Gregg sat there. And me. I remember saying out loud "I feel like this is a dream. A really really bad dream." I looked around and the doctors wouldn't look at me. The priest nodded. My mother still crying.
At the age of 37, it had been my first experience with death. I just could not grasp the thought of my sister not being here any more. How could that be?? We had talked about growing old together. Even when she was in the hospital we talked about what the future would hold. Joked that we came from a long line of family who live well into their 90's and that it would most likely be her and I sitting on the steps of a home in rocking chairs with her crocheted afghans on our laps. She was going to come to my children's graduations and weddings. She was going to be there with Gregg and I when we rushed to the hospital to see our grandchildren for the first time. We had talked of traveling. We had talked of so many things. It wasn't possible this was the end. They were telling me...in this stupid room....that all of our plans were never going to happen.
A decision had to be made though. They were asking us to make the decision to turn off her life support. To turn off all those dreams. I looked at the floor. No way was I going to make that decision. My mother's husband wasn't and Gregg wasn't. But my poor mother couldn't say it. She was crying and in hysterics and all I kept hearing her say was "Joy I can't say it. I can't do it. Joy I can't. You have to say it."
So I breathed a huge breath in and I said "We have to do it. We have to turn it off. She didn't want this. We have to let her go."
I will never forget the priest when she turned to me and said "I've never seen anyone more brave at a time like this." I didn't feel brave. I still don't. I still feel eight years later that it was me who killed my sister. I know it's not a rational way of thinking but I've never forgiven myself for saying those words.
But I said it. Turn off the machines. I sat there numb and feeling like I was about to lose my mind. If someone would have given me a gun at that very moment I would not have thought twice to put it to my temple and pull the trigger. I'm not joking. The pain was like nothing I had ever felt in my life.
The doctors left the family room, the priest left the family room, my mother and her husband left the family room and Gregg left the family room to go to where my sister was. But I could not leave the family room. I could not go and watch what I had just given permission for. I wanted to go and grab my sister and tell her how sorry I was. That I didn't want to do it. That I would have given anything to not have said those words. Oh man I was so so sorry. So I sat in that family room all alone. Knowing what was taking place not five doors away.
Eight years later I still live with this guilt. I haven't cried because I suppose I felt the suffering was my punishment for doing something so horrible to someone I loved more then life.
What keeps me going is knowing that when my day comes, my sister will be waiting for me. That she will walk towards me and tell me she has forgiven me and everything will be ok. Because no matter how rotten I was or how hard things got, my sister always forgave me and she always told me things were going to be ok.
For the first time in eight years, I'm sitting here really crying over the death of my sister. Will it finally help the healing process? I wish I knew.
To my sister Darryle, my rock and my life. I miss you today and I will miss you every day until we are together again.
So there we were, sitting in that blasted family room. If you are ever in the hospital and the doctors come to you and say "Can we talk to you? Lets go to the family room." Run. Run in the opposite direction as fast as you can. Because the family room is never a good thing.
My sister had been on life support for days. The prognosis was grim for her near the end of her life, but the day she crashed and my poor mother was in her room and had to make the call to either let her go...or put her on life support...was the grimmest of all. I remember just getting out of the shower that morning and receiving the call. My mother. Hysterical that my sister was not breathing and asking me what to do. My sister had made it very clear to everyone she did not want to be put on life support. But there my poor mother was, in that room, with my sister crashing and a nurse yelling at her "You can't let her go! We have to try and save her. You. Can't. Do. This. To. Her!" The commotion over the phone was unbelievable so I can only imagine what it was like to be my mother at that moment.
I said "No mom. This isn't what she wanted. Don't put her on life support." My mother was screaming and crying by this point "But I'm asking her and she's nodding she wants to be saved." I can't even imagine what my mother was going through at that very moment. So I said "Well then save her. I'm coming."
I drove as fast as I could to the hospital and ran to where my sister was. My mother caught me in the hallway and said they were still working on her. Trying to get that tube into her hardened lungs. Doing everything she begged us not to do to her. When they finally let us in to her room, I stood there with my hand clasped over my mouth and started to cry. It was so awful. To make matters worse, the nurse came in to give my sister something for the pain and my sister reached up to grab her arm to take the needle away. After that, the drugs came sooner to keep her from doing that again.
Two days later the head of the ICU took me aside and said "I'm talking to you because you seem to be the strongest. Your sister should never have been put on life support. Her organs were so damaged from the disease and drugs from fighting the disease that even if a donor was found...she would never have been a candidate." This did not help with the guilt of seeing her in that room with all those tubes hooked up to her. But I knew it was true.
The next day the doctors took us into...the family room. The dreaded family room. The head of ICU, my sister's doctor, my mother and her husband, Gregg and I and a priest. It's never good to go into that room, but when a priest is called in, you know things are about to get a whole lot worse.
The head of the ICU told us there was no longer any hope. That a decision had to be made to take my sister off of life support. Oh lord. Everyone sat there. My mother was crying and hysterical, her husband just kept saying "One more day. Maybe we'll give it one more day." Gregg sat there. And me. I remember saying out loud "I feel like this is a dream. A really really bad dream." I looked around and the doctors wouldn't look at me. The priest nodded. My mother still crying.
At the age of 37, it had been my first experience with death. I just could not grasp the thought of my sister not being here any more. How could that be?? We had talked about growing old together. Even when she was in the hospital we talked about what the future would hold. Joked that we came from a long line of family who live well into their 90's and that it would most likely be her and I sitting on the steps of a home in rocking chairs with her crocheted afghans on our laps. She was going to come to my children's graduations and weddings. She was going to be there with Gregg and I when we rushed to the hospital to see our grandchildren for the first time. We had talked of traveling. We had talked of so many things. It wasn't possible this was the end. They were telling me...in this stupid room....that all of our plans were never going to happen.
A decision had to be made though. They were asking us to make the decision to turn off her life support. To turn off all those dreams. I looked at the floor. No way was I going to make that decision. My mother's husband wasn't and Gregg wasn't. But my poor mother couldn't say it. She was crying and in hysterics and all I kept hearing her say was "Joy I can't say it. I can't do it. Joy I can't. You have to say it."
So I breathed a huge breath in and I said "We have to do it. We have to turn it off. She didn't want this. We have to let her go."
I will never forget the priest when she turned to me and said "I've never seen anyone more brave at a time like this." I didn't feel brave. I still don't. I still feel eight years later that it was me who killed my sister. I know it's not a rational way of thinking but I've never forgiven myself for saying those words.
But I said it. Turn off the machines. I sat there numb and feeling like I was about to lose my mind. If someone would have given me a gun at that very moment I would not have thought twice to put it to my temple and pull the trigger. I'm not joking. The pain was like nothing I had ever felt in my life.
The doctors left the family room, the priest left the family room, my mother and her husband left the family room and Gregg left the family room to go to where my sister was. But I could not leave the family room. I could not go and watch what I had just given permission for. I wanted to go and grab my sister and tell her how sorry I was. That I didn't want to do it. That I would have given anything to not have said those words. Oh man I was so so sorry. So I sat in that family room all alone. Knowing what was taking place not five doors away.
Eight years later I still live with this guilt. I haven't cried because I suppose I felt the suffering was my punishment for doing something so horrible to someone I loved more then life.
What keeps me going is knowing that when my day comes, my sister will be waiting for me. That she will walk towards me and tell me she has forgiven me and everything will be ok. Because no matter how rotten I was or how hard things got, my sister always forgave me and she always told me things were going to be ok.
For the first time in eight years, I'm sitting here really crying over the death of my sister. Will it finally help the healing process? I wish I knew.
To my sister Darryle, my rock and my life. I miss you today and I will miss you every day until we are together again.
*hugs*
Posted by: Mahala | May 24, 2009 at 05:49 PM
Heart wrenching post, Joy....
But I have to say - You didn't kill your sister. You let her go like she had asked.
Posted by: Karmyn R | May 24, 2009 at 06:01 PM
Joy,
This is the beginning of your grieving process. You put it in writing - I am so very proud of you. ((((HUGS)))). You will see each other again one day and she will welcome you with HUGS and love.
Posted by: BS | May 24, 2009 at 06:02 PM
(((HUGS)))
I'm welling with tears reading this...not for the loss, but because I read LOVE.
It was your love for her that made you decide for the right thing...I'm sure she'll do the same and that is what she wanted you to do.
It's been a while since I was here...got here through Fun Monday and was thinking I might visit old participants...then I read this post. I've dealt with some guilt due to a death of an old friend, nothing like this but I feel your pain...so I know. I also know, that pain is beautiful when one can rise from its depressions power, and as strong as you are, I'm sure you are feeling that power each day.
Posted by: Mariposa | May 24, 2009 at 06:13 PM
This is so painful to read.
You did what you had to do. I'm so sorry the decision was left to you.
(((hugs)))
Posted by: Stephanie Snowe | May 24, 2009 at 06:49 PM
I hope writing that has helped you. When my dad was in the hospital, I had to make this decision also. The doctors and nurses kept badgering about what was I going to do, how long was I going to let him suffer? You see, I did not know what his wishes were, they had to put him into a drug induced coma because of his pain. I couldn't ask him. Fortunately for me, when the decision to put him on life support came up, they couldn't find me or get ahold of me and they made that decision. And technically, they had to take him off the respirator after so long and we chose to put a trach tube in him. I wanted so badly to ask him what to do. I never got to. I still feel bad about it and it has been almost two years. But I also know that he would forgive me and probably did not want to be on life support like that. They took him off and his liver finally couldn't be stopped from bleeding, he was just too ill to have another operation. I miss him terribly, especially at night before I go to sleep. I mostly regret not spending enough time with him throughout my marriage years. He moved to Texas and we didn't see each other often enough. But the last thing he said to me before they induced his coma was, "Terri, you know that I love you." And I said, "Yes, daddy, I know that you love me and I love you." That is my best memory.
Posted by: junebug | May 24, 2009 at 07:29 PM
Oh, Joy, honey. If I could wrap you in my arms right now I would. It sucks when people have to make the hard decisions. You knew then what your sister wanted. You know it still. You honored her wishes. You were a good sister. When others could think only of their own pain and loss, you advocated for your sister. I have no idea what there is after we are done on this earth, but if we go to a place where we are rejoined with family and friends, then I believe your sister will THANK you. There is no forgiveness necessary that I can see. If you need it, I have no doubt she'll offer it, but I know that if everyone around me wanted to keep me alive on machines and my sister stood up and said "no. this is not what she wants" I would be very, very grateful. Your sister is at peace. And after eight years, honey, it's time for you to allow yourself to feel some peace as well. My heart goes out to you. You know my e-mail if you want to write. I'm here.
Posted by: Dawn on MDI | May 24, 2009 at 07:46 PM
I was there when we did the same thing --pulled the plug on my sister. I was 42.
There is a story there, too. Perhaps I'll tell it. I feel guilty, too.
I feel guilty about my mother's death, too.
I suspect that it is a common emotion.
I read your story, and see it is so obvious that you did not kill her. She was already dead. The machines were just pumping away -- and giving all of you the illusion of life.
hugs.
Posted by: Pamela | May 24, 2009 at 08:05 PM
I can't add anything that hasn't been said.
Many of us have been in a similar situation and you know, you'll never stop second guessing and wondering and worrying over it. And the fact that you can do nothing about it now doesn't help.
Please take the time to cry, to scream to rant... and don't listen to anyone who says stupid things like, "Time to get past it" or "Aren't you over that yet?"
I'm so sorry for your loss.
Posted by: Ami | May 24, 2009 at 08:44 PM
Hugs to my friend.... what a story to share. I wish I could take away your guilt. We made that decision for my Dad 3 years ago, and it was so hard to let him go... but thankfully I don't have the guilt. I know it was the right thing to have done. And somewhere in your being, you know it was for your sister as well.
You are so right... she will be waiting there for you when your time comes... with a hug and a smile and that special something that only two sisters share.
Again, hugs to you
Posted by: Nancy E | May 24, 2009 at 09:44 PM
You are welcome to come cry with me....
and I do recall saying to you the when we had supper one night the same thing you Dr. said to you. I also do not believe that "time heals". I think time is time, regardless. So, take your time.
Hugs to you...
Posted by: Deanna | May 24, 2009 at 09:56 PM
My heart and prayers go out to you, Joy. We are all here for you. I am sending hugs. May you find peace in your own way...
Posted by: bermudabluez | May 24, 2009 at 10:13 PM
Thank you for sharing your story. I hope in the sharing you have helped the healing process and through the tears, grieved like you should. Hugs to you.
Posted by: Dawn | May 24, 2009 at 10:43 PM
Joy, I hope writing about this difficult time has helped relieve some of the guilt and pain you must feel. I hope you find peace soon, you deserve it.
~S
Posted by: ~Sheryl | May 25, 2009 at 06:17 AM
I read this last night, but I didn't know what to say. Then...I thought about this post all evening and morning long. It is one of the most "real" posts I have ever read. It must have taken a lot for you to write it. I'm glad you did because I think it will help you.
If I had a sister I would want her to be just like you. Also, for what it's worth, you did exactly what she wanted and you know she doesn't blame you.
Love and Peace
Posted by: Beckie | May 25, 2009 at 11:32 AM
Joy, thank you for sharing such a painful part of your life. I cannot imagine how hard it was to go through that, and how hard it was to write this post.
I have never been in this situation with a family member, but I have been there with close friends and the family of a sweet baby girl of 2 years old. Whoever told you that you were making the brave choice was so correct. I would want someone to make the same choice for me that you made for her. You stopped her from suffering for no purpose, there was no chance of recovery, only more pain until there was nothing left for science to do.
A friend with Duchenne Muscular Dystrophy asked me for my opinion on his getting a trach, and going on a ventilator. I remember telling him that my own selfish thought was that I wanted him to do it, to do anything possible to keep him here with us, as long as possible. But that was for me, not for him. He did decide to do it, and it helped him have about 6 more good months with us, until his heart gave out, at 23 years old from that horrendous disease.
Posted by: Lee Cockrum | May 25, 2009 at 02:01 PM
Wow Joy what a heart felt post for you to make.I have not dried my tears yet! Just so you know...my thoughts are with you! That dreaded family room I remember oh so well. Joy always remember you did what your sister wanted. No matter how you feel, it is what SHE wanted! Thats what you should focus on, and thats what she would want you to focus on!
Feel this big ol hug coming your way!
Posted by: sheryl fleury | May 25, 2009 at 04:31 PM
Oh, Joy! I just want to give you a BIG hug! Hang in there...
Posted by: Karen | May 25, 2009 at 09:03 PM
I didn't cry but my throat has all swelled and constricted - Joy you cry and let it all out - you were right!
Posted by: belleek | May 26, 2009 at 07:12 AM
so many thoughts... so many comments...
You are stronger then you think! It is and will be good for you to get this out and in the open. Where you can deal with it.
I have been to the "family" room way to many times... I can feel your pain.
Knowing exactly what you went through. I understand. (((hugs)))
Posted by: Deb | May 26, 2009 at 09:41 AM
I'm so sorry I was away from the computer these past few days and missed this post. I'm sending LOTS of HUGE hugs to you {{{{{HUGS}}}}}
We had to make the same decision for my grandmother 10 years ago.
Please know that you did NOT kill your sister and have nothing to feel guilty about. You fulfilled her last wish and desire. She did not want to live on machines and you were the one that had the courage to fulfill her wish when no one else was able to.
Please know that we're here for you! {{{HUGS}}}
Posted by: SAA | May 26, 2009 at 10:25 AM
I had to do the same with my uncle.
He died about 40 minutes after the machines went off.
I never thought I'd have to make a decision like that, and I hope I never have to do it again.
Posted by: Frances | May 27, 2009 at 01:55 PM
I'm crying from hurt for you. you made the decision your sister would want you to. You will see her again and she'll say thanks. hugs
Posted by: Penney | May 27, 2009 at 02:04 PM
Sending warm hugs your way Joy, you are the bravest lady I know.
Posted by: Debbi | May 29, 2009 at 09:56 AM