On Monday, July 27, 2009, I was at home getting ready to go to the hospital to be with my dad because he was in critical condition in the Intensive Care Unit. I had been there the night before until almost 3 a.m. so I was taking my time about getting up and ready to go. In fact, I was playing Scramble on Facebook, trying to just zone out for a while. My mom had traveled over the day before to be with me because we knew my dad was very sick and she thought I might need some support.
I went upstairs to take a shower and get ready to go when my mom came into my room saying that Susi, my stepmom, was on the phone. When I got on the phone, Susi could barely speak. She told me the doctor had just been in for his morning rounds and that it was the opinion of the medical staff at Riverside that my father wasn't going to recover from this illness. They left it up to us, but had let Susi know that we should remove him from the ventilator and allow him to die. She told them that we would do that, but not until I got to the hospital first. I told her I would get there as fast as I could. I cried while I put on my makeup, I cried while I did my hair. John was at home that day and had gone to run some errands that we had to get done that day. Finally he got home so that I could go. I drove my mom and I to the hospital with dread in my heart. I didn't want to do what I was about to do, but I had no choice. I wanted to be there, but I didn't want the death. Not yet.
When we got up to the ICU, there were friends of my Dad and Susi's from their church in the waiting room. I left them there with my mom and went back to Dad's room. I put on the required gloves and gown to protect myself and the whole world from his latest MRSA infection. Susan asked me what I would like to do-did I want some time alone with her? With my dad? I answered that I wanted both. Everyone else kindly left the room, including their pastor, Karen. I sat down and asked every question I needed to have answered before I could agree that removing Dad's life support would be best.
Why now? When we put him on the ventilator on Saturday they thought a couple of days of rest and helping him breathe might give him the chance to fight back a bit and get better for a while. The answer was that he had, since then, experienced multiple organ failure. It had begun days before, but by that day his bowels and his kidneys had completely shut down. He was experiencing respiratory failure (hence the ventilator) and was beginning to experience heart failure. Given his poor health, the doctors foresaw no chance that he could ever recover from so many things being wrong.
What will happen? They will take the tube out and anywhere from a few minutes to a day later, he should pass away. They will give him morphine to ensure that he isn't feeling any pain.
Have we done everything we can? Are we SURE? Yes, there is nothing else the two of us (Susi and I) can do. He wouldn't want to live this way. He wouldn't want to be kept on this Earth by machines. He was tired and he was ready to go.
Even though my heart was screaming inside my chest NO, I agreed that we should remove the breathing tube. There was a part of me that couldn't let go of the thought that we were giving up on him. That he might be able to pull through one more time. After all, he'd experienced all of these organ failures before, back in 2005, and he beat all the odds and survived. Couldn't he do it this time? Even though intellectually I knew that this time he was much weaker and much sicker, I couldn't stop the feeling that he needed the chance to rest and heal....that we were giving up too soon. Still my heart kept screaming NO, NO, NO. Then began a chant inside my head that I am still hearing to this day. "I want my daddy!". Yes, said just like a petulant child. But it's true. Oh, how I want my daddy! And so began the chorus that would continue inside me the rest of that day and many more to come....No, no, no....I want my daddy.....please don't leave me, Daddy....please, don't go.....not yet, I am not ready to lose you yet....I have so much more I wanted to say to you.....But I knew it wasn't my decision to make, and I knew that everyone else was right. To keep him alive would have been selfishness on my part, and the greatest act of love is to know when to let go.
After Susi was sure I had all of my questions answered, she left me alone with my dad for as long as I needed. I sat beside him and took his hand. The ventilator made it's quiet swish, swish sound. His chest rose and fell with each swish. I couldn't help myself-I began to sob. Tears streamed down my face as I looked at him, this man I had loved my entire life. The breathing tube was taped to the side of his face. The NG tube went down his noise. The water on the ventilator bubbled, but otherwise it was silent. I bent down by his ear and started whispering to him, unsure if he could hear me or not. "Daddy, I love you so much. Thank you for being the best dad a girl could ever have. Thank you for having me, thank you for loving me. Thank you for everything. I'll never forget the special things you did for me-the special Sweet 16 presents, my wedding. I'll never forget the sound of your laughter. You've been so brave, and strong. You've fought so hard for so long. You made it when no one except Susi and I thought you could. Please don't leave me if you can stay. But I understand if you can't. I know it's hard to stay." I gently rubbed his forehead and kissed him before I left to tell Susi that I was ready.
After a quick visit to the waiting room, everyone came to his room. Susan sat on his right side, and I sat on his left side. At times my mom was in the room, sitting in a chair back by the window. Pastor Karen sat back from the bed, but close by. Their friends, Patty and Gary Mann, sat a bit back from the bed too. We told the nurse, the ironically named Debbie Miracle, that we were ready for them to remove the tube. She said she'd page the doctor. We sat and quietly talked. We laughed and we cried. We told stories about Dad, we talked to him. Susi and I held his hands and rubbed his poor, bruised arms that were so bloodied and thin and bruised that he looked as though he'd been living in trenches on the front of World War I or something. It took a long, long time for the doctors to come.
The head ICU doctor (the "attending physician"?) came in. His name was Dr. Boes. I thought it was Boles, but it's on the death certificate that it was Boes. He sat down and explained to all of us that with the catastrophic multiple organ failures, there was little chance Dad would ever recover enough to have a meaningful existence. The best we could hope for would be for him to remain on a ventilator with a G-tube to nourish him, living in a long-term care facility...if we could even get him to that point. He didn't think Dad even had the strength to survive trying that. He agreed with us that we were doing the best thing for him. The respiratory therapist was called to come and remove the tube.
It seemed to take forever for her to get to the room. Finally, at around 3:35 p.m., she arrived. I couldn't watch them take out the tube. Susi refused to leave. I didn't want to leave either, so I turned and looked out the window. Sobs wracked my body. The screaming in my head continued. "No!!!! No!!! I want my dad! I need my daddy!!! Not yet!!!" I heard the gurgling sounds as they removed the tube, making him cough. They suctioned him out as best they could. The only tube he now had was an IV of morphine. The nurse asked if we wanted her to leave the monitors on, or to turn them off. Susi chose to have the monitors left on, which is what I would've chosen too. Everyone else came back in except for their friends, who had to leave for a while to attend to some personal business. So my mom sat back by the window, Pastor Karen was in the corner with her prayer book, and Susi and I were at our places by his side.
My mom took a moment to talk to him and tell him good-bye. Susi was very gracious and was glad that my mom was there to support me, so that she could do what she needed to do without having to worry about supporting me too. My mom thanked him for a good life together, for her two children, for remaining friendly even after their divorce. She said they weren't too good as a couple, but that they did a lot better as friends, and she was glad. She kissed his forehead. Susi and I kept talking to him, telling him how much we loved him, and how proud of him we were for fighting for so long and giving us the past four years that we had been so blessed to have with him.
I got up after a bit to stretch my legs and look out the window for a moment. As I turned around, I caught sight of him moving his left arm from the bed onto his stomach. I was stunned, as he had been unresponsive since Saturday. I went to him, took his hand, and asked rather loudly, "Daddy, do you love me?" He nodded. I thought my heart would explode from the pain and the fear and the joy of seeing him move. "Daddy, do you love Susi?" Another weak nod. His eyes remained closed. Susi came running over to the bed. She thanked him for the 26 years they had shared and told him how much she loved him. I said "Daddy, I love you so much." He raised his head towards me and made "smooches" to me three times. Kiss, kiss, kiss. Then he rested his head on the pillow again. Susi asked him for a kiss and he puckered up as she kissed him on the lips. He winced as I accidentally leaned on his stomach. "Very tender." he said. His stomach was so bloated from all of the fluids in his system that couldn't get out that even the lightest touch hurt. "Very tender." he said again before drifting off. Susi whispered to him and he nodded and tried to open his eyes for her. We both were crying.
I was watching the monitors. As soon as he'd had the tubes removed, his oxygen saturation dropped from 100% to the 50's. It continued to fluctuate from the 40's to the 50's to the 60's, up and down, down and up. His heart rate was steady at around 55 beats per minute. The worst number was his blood pressure. It was already very low and it sank like a stone after he began breathing on his own. 55/35....lower, lower, lower. 35/15. How low could it go? A couple of times the heart monitor stopped waving up and down. Was this it? Was he gone? Then it would come back to 55 beats per minute.
Susi was whispering in his ear, telling him he had been so strong, but that now it was okay to go. I told him that it was okay to leave too. We said we didn't want him to go from us, but that we understood he needed to leave. A couple of minutes later, as I watched the monitor, the heart beat flatlined again. This time, it didn't come back. I waited for a moment, then I told Susi. She looked up, both of us waiting to see if the heartbeats would resume. They didn't. The pulse-ox immediately went to a ? mark. ??? it said. That's what I felt too. ??? Was he gone? However, the monitor showing his breathing rate continued. 22 breaths per minute.....15.....20.......22. Knowing that the last sense to remain at death is hearing, Susi and I wept and told him how much we loved him and would miss him. Almost instantly his color went from a good, healthy looking rose color to a pallid yellowish white color. His lips went white. I had a fear of touching a dead person because of some previous experiences with death, but I couldn't let go of his hand. It was still warm, and it was his hand. My dad's hand. It was the last time I would ever get to hold it, and I couldn't let go. Susi kept kissing him and hugging him and stroking his face and his head.
The nurse came in and quietly turned off the monitors. She hugged Susi. Pastor Karen came over and said a prayer commending his soul to Heaven. My mom was sobbing. I reached out to her, through my blur of tears, and sobbed. "I want my daddy! I don't want him to leave me!". She hugged me tight and said "I know, I know, I wish he didn't have to leave you." through her sobs. I sat back down and continued to hold his hand, marveling at how he still felt just like my dad. I looked and looked at him. His mouth was open a bit, his eyes were shut. The only sign that he was gone was that his lips were so white and pale. The hospital chaplain, a hovering man with an amazing ability to state the obvious, said "He was ready to go." He had previously stopped in to tell us that, as we could see on the monitor, "his blood pressure is very low...". He meant well, I am sure, but there are times when a stranger just isn't needed, and this was one of those times. Pastor Karen was so kind and comforting and knew exactly what to say to provide comfort without pushing us even further into tears.
It took my father only one hour to leave this life once the breathing tube was removed. He died at 4:43 p.m. that day. It was, as I said then, "a good death." It was peaceful and quiet. He wasn't scared or agitated or hurting. He was ready to go. He was ready to stop the constant fighting to keep drawing breath into his body.
And there it is. The Death. But not the end....at least, not my end. Yet.
I went upstairs to take a shower and get ready to go when my mom came into my room saying that Susi, my stepmom, was on the phone. When I got on the phone, Susi could barely speak. She told me the doctor had just been in for his morning rounds and that it was the opinion of the medical staff at Riverside that my father wasn't going to recover from this illness. They left it up to us, but had let Susi know that we should remove him from the ventilator and allow him to die. She told them that we would do that, but not until I got to the hospital first. I told her I would get there as fast as I could. I cried while I put on my makeup, I cried while I did my hair. John was at home that day and had gone to run some errands that we had to get done that day. Finally he got home so that I could go. I drove my mom and I to the hospital with dread in my heart. I didn't want to do what I was about to do, but I had no choice. I wanted to be there, but I didn't want the death. Not yet.
When we got up to the ICU, there were friends of my Dad and Susi's from their church in the waiting room. I left them there with my mom and went back to Dad's room. I put on the required gloves and gown to protect myself and the whole world from his latest MRSA infection. Susan asked me what I would like to do-did I want some time alone with her? With my dad? I answered that I wanted both. Everyone else kindly left the room, including their pastor, Karen. I sat down and asked every question I needed to have answered before I could agree that removing Dad's life support would be best.
Why now? When we put him on the ventilator on Saturday they thought a couple of days of rest and helping him breathe might give him the chance to fight back a bit and get better for a while. The answer was that he had, since then, experienced multiple organ failure. It had begun days before, but by that day his bowels and his kidneys had completely shut down. He was experiencing respiratory failure (hence the ventilator) and was beginning to experience heart failure. Given his poor health, the doctors foresaw no chance that he could ever recover from so many things being wrong.
What will happen? They will take the tube out and anywhere from a few minutes to a day later, he should pass away. They will give him morphine to ensure that he isn't feeling any pain.
Have we done everything we can? Are we SURE? Yes, there is nothing else the two of us (Susi and I) can do. He wouldn't want to live this way. He wouldn't want to be kept on this Earth by machines. He was tired and he was ready to go.
Even though my heart was screaming inside my chest NO, I agreed that we should remove the breathing tube. There was a part of me that couldn't let go of the thought that we were giving up on him. That he might be able to pull through one more time. After all, he'd experienced all of these organ failures before, back in 2005, and he beat all the odds and survived. Couldn't he do it this time? Even though intellectually I knew that this time he was much weaker and much sicker, I couldn't stop the feeling that he needed the chance to rest and heal....that we were giving up too soon. Still my heart kept screaming NO, NO, NO. Then began a chant inside my head that I am still hearing to this day. "I want my daddy!". Yes, said just like a petulant child. But it's true. Oh, how I want my daddy! And so began the chorus that would continue inside me the rest of that day and many more to come....No, no, no....I want my daddy.....please don't leave me, Daddy....please, don't go.....not yet, I am not ready to lose you yet....I have so much more I wanted to say to you.....But I knew it wasn't my decision to make, and I knew that everyone else was right. To keep him alive would have been selfishness on my part, and the greatest act of love is to know when to let go.
After Susi was sure I had all of my questions answered, she left me alone with my dad for as long as I needed. I sat beside him and took his hand. The ventilator made it's quiet swish, swish sound. His chest rose and fell with each swish. I couldn't help myself-I began to sob. Tears streamed down my face as I looked at him, this man I had loved my entire life. The breathing tube was taped to the side of his face. The NG tube went down his noise. The water on the ventilator bubbled, but otherwise it was silent. I bent down by his ear and started whispering to him, unsure if he could hear me or not. "Daddy, I love you so much. Thank you for being the best dad a girl could ever have. Thank you for having me, thank you for loving me. Thank you for everything. I'll never forget the special things you did for me-the special Sweet 16 presents, my wedding. I'll never forget the sound of your laughter. You've been so brave, and strong. You've fought so hard for so long. You made it when no one except Susi and I thought you could. Please don't leave me if you can stay. But I understand if you can't. I know it's hard to stay." I gently rubbed his forehead and kissed him before I left to tell Susi that I was ready.
After a quick visit to the waiting room, everyone came to his room. Susan sat on his right side, and I sat on his left side. At times my mom was in the room, sitting in a chair back by the window. Pastor Karen sat back from the bed, but close by. Their friends, Patty and Gary Mann, sat a bit back from the bed too. We told the nurse, the ironically named Debbie Miracle, that we were ready for them to remove the tube. She said she'd page the doctor. We sat and quietly talked. We laughed and we cried. We told stories about Dad, we talked to him. Susi and I held his hands and rubbed his poor, bruised arms that were so bloodied and thin and bruised that he looked as though he'd been living in trenches on the front of World War I or something. It took a long, long time for the doctors to come.
The head ICU doctor (the "attending physician"?) came in. His name was Dr. Boes. I thought it was Boles, but it's on the death certificate that it was Boes. He sat down and explained to all of us that with the catastrophic multiple organ failures, there was little chance Dad would ever recover enough to have a meaningful existence. The best we could hope for would be for him to remain on a ventilator with a G-tube to nourish him, living in a long-term care facility...if we could even get him to that point. He didn't think Dad even had the strength to survive trying that. He agreed with us that we were doing the best thing for him. The respiratory therapist was called to come and remove the tube.
It seemed to take forever for her to get to the room. Finally, at around 3:35 p.m., she arrived. I couldn't watch them take out the tube. Susi refused to leave. I didn't want to leave either, so I turned and looked out the window. Sobs wracked my body. The screaming in my head continued. "No!!!! No!!! I want my dad! I need my daddy!!! Not yet!!!" I heard the gurgling sounds as they removed the tube, making him cough. They suctioned him out as best they could. The only tube he now had was an IV of morphine. The nurse asked if we wanted her to leave the monitors on, or to turn them off. Susi chose to have the monitors left on, which is what I would've chosen too. Everyone else came back in except for their friends, who had to leave for a while to attend to some personal business. So my mom sat back by the window, Pastor Karen was in the corner with her prayer book, and Susi and I were at our places by his side.
My mom took a moment to talk to him and tell him good-bye. Susi was very gracious and was glad that my mom was there to support me, so that she could do what she needed to do without having to worry about supporting me too. My mom thanked him for a good life together, for her two children, for remaining friendly even after their divorce. She said they weren't too good as a couple, but that they did a lot better as friends, and she was glad. She kissed his forehead. Susi and I kept talking to him, telling him how much we loved him, and how proud of him we were for fighting for so long and giving us the past four years that we had been so blessed to have with him.
I got up after a bit to stretch my legs and look out the window for a moment. As I turned around, I caught sight of him moving his left arm from the bed onto his stomach. I was stunned, as he had been unresponsive since Saturday. I went to him, took his hand, and asked rather loudly, "Daddy, do you love me?" He nodded. I thought my heart would explode from the pain and the fear and the joy of seeing him move. "Daddy, do you love Susi?" Another weak nod. His eyes remained closed. Susi came running over to the bed. She thanked him for the 26 years they had shared and told him how much she loved him. I said "Daddy, I love you so much." He raised his head towards me and made "smooches" to me three times. Kiss, kiss, kiss. Then he rested his head on the pillow again. Susi asked him for a kiss and he puckered up as she kissed him on the lips. He winced as I accidentally leaned on his stomach. "Very tender." he said. His stomach was so bloated from all of the fluids in his system that couldn't get out that even the lightest touch hurt. "Very tender." he said again before drifting off. Susi whispered to him and he nodded and tried to open his eyes for her. We both were crying.
I was watching the monitors. As soon as he'd had the tubes removed, his oxygen saturation dropped from 100% to the 50's. It continued to fluctuate from the 40's to the 50's to the 60's, up and down, down and up. His heart rate was steady at around 55 beats per minute. The worst number was his blood pressure. It was already very low and it sank like a stone after he began breathing on his own. 55/35....lower, lower, lower. 35/15. How low could it go? A couple of times the heart monitor stopped waving up and down. Was this it? Was he gone? Then it would come back to 55 beats per minute.
Susi was whispering in his ear, telling him he had been so strong, but that now it was okay to go. I told him that it was okay to leave too. We said we didn't want him to go from us, but that we understood he needed to leave. A couple of minutes later, as I watched the monitor, the heart beat flatlined again. This time, it didn't come back. I waited for a moment, then I told Susi. She looked up, both of us waiting to see if the heartbeats would resume. They didn't. The pulse-ox immediately went to a ? mark. ??? it said. That's what I felt too. ??? Was he gone? However, the monitor showing his breathing rate continued. 22 breaths per minute.....15.....20.......22. Knowing that the last sense to remain at death is hearing, Susi and I wept and told him how much we loved him and would miss him. Almost instantly his color went from a good, healthy looking rose color to a pallid yellowish white color. His lips went white. I had a fear of touching a dead person because of some previous experiences with death, but I couldn't let go of his hand. It was still warm, and it was his hand. My dad's hand. It was the last time I would ever get to hold it, and I couldn't let go. Susi kept kissing him and hugging him and stroking his face and his head.
The nurse came in and quietly turned off the monitors. She hugged Susi. Pastor Karen came over and said a prayer commending his soul to Heaven. My mom was sobbing. I reached out to her, through my blur of tears, and sobbed. "I want my daddy! I don't want him to leave me!". She hugged me tight and said "I know, I know, I wish he didn't have to leave you." through her sobs. I sat back down and continued to hold his hand, marveling at how he still felt just like my dad. I looked and looked at him. His mouth was open a bit, his eyes were shut. The only sign that he was gone was that his lips were so white and pale. The hospital chaplain, a hovering man with an amazing ability to state the obvious, said "He was ready to go." He had previously stopped in to tell us that, as we could see on the monitor, "his blood pressure is very low...". He meant well, I am sure, but there are times when a stranger just isn't needed, and this was one of those times. Pastor Karen was so kind and comforting and knew exactly what to say to provide comfort without pushing us even further into tears.
It took my father only one hour to leave this life once the breathing tube was removed. He died at 4:43 p.m. that day. It was, as I said then, "a good death." It was peaceful and quiet. He wasn't scared or agitated or hurting. He was ready to go. He was ready to stop the constant fighting to keep drawing breath into his body.
And there it is. The Death. But not the end....at least, not my end. Yet.
