Monday July 11, 2016
I got drove back to the hospital early that morning, and watched the sunrise as I was driving. It was surreal and hard to believe. I knew that everyone looses their parents, I just wasn’t ready to loose my Mom so soon. I kept thinking that maybe it was a dream, but then I knew it wasn’t. This had been coming for a long time. I to the hospital and Mom was weaker and not really talking very much. She was tired and her eyes were sunken in a little more. Her breaths were more ragged. I was scared when I looked at her, but painted on a smile. I am sure if she was awake she would have seen through.
We had talked to the doctors and decided that maybe, maybe putting a feeding tube in Mom would help her. It was the kind was a tube snaked down through her nose. I knew that she didn’t want a feeding tube but my selfishness took over. If it would save her yes, let’s do it. Mom agreed because all of us wanted her to do it, not because she wanted it.
Soon after that decision had been made, the two women from Palliative Care asked to speak to My Dad, my sister and me. We went into an empty hospital room and Joanne carefully and em-pathetically explained the situation.
She softly but firmly explained that Mom was at a point where she probably wasn’t going to get better. They could do a peg feeding tube, but her on a ventilator, even on life support, but just because we could didn’t mean that we should. She explained that we had to think of Mom’s quality life that she had left, her dignity and what she wanted. She said that it was obvious how much we all loved her, and she had never seen a family fight for a loved one so hard. And as she was speaking to us, I noticed that tears were rolling down her cheeks. She truly cared.
She explained to us that Mom’s body was just too weak to survive to survive and life saving measures. That her body had lost it’s ability to synthesize proteins, so even if she had a feeding tube, her body could not absorb any nutrients and it would just turn into diarrhea and it would be a painful death. When she said that it clicked that that is what happened when I was giving Mom all those protein drinks in the days that followed the procedure. Joanne also confirmed that was why Mom would eat for a few days then cramp and vomit for the next 3-4 days. She told us that they would have needed to see Mom two years ago to help her, tat was how bad and how far the nutritional had gotten.
I think I was the only one not shocked. I had been telling the family that this was going to happen if Mom did not start eating, if we did not get her treatment. I had begged Mom for years to please go to a different doctor, a doctor up here, maybe at Emory where Dad was getting his chemo treatments for his liver cancer. I had set up appointments with nutritionist, counselors and any other doctor I could find at Emory that would talk to Mom. The one time she agreed to go, she refused to admit that there were any problems, and they could not treat her. For years I had been accused of being dramatic, of lying, of exaggerating and causing drama. I have never been so heartbroken to be right. I have never wanted to be more wrong in my life.
My sister and father were paralyzed. I asked a lot of questions because decisions had to be made. And whatever the decisions were, we had to be as comfortable with them as possible. After lengthy discussion of what Mom would truly want, of what was possible and mot, of what is ethical and right and what would break our hearts, it was decided to take Mom from “Get Well Care” to “Comfort Care.” They would keep her on Antibiotics, because miracles could always happen, but if that was not the case, then she could have her dignity. She said they would change Mom from the oxygen mask to the cannula because it would be more comfortable for her. They promised that they had medicine to help with the “air hunger” that mom would feel. They also had medicine to help with the “death rattle” breathing.
My sister and father left to make phone calls, and I went into the room. The nurse bad nurse that Mom was afraid of had already put a green feeding tube down her nose. Mom looked miserable. I looked at Mom and apologized and told her that I never should have said she should try the feeding tube and that they would take it out immediately. And the nurse did. She pulled it out of her nose very rough and I could tell that it hurt Mom. She looked at the nurse, fear in her eyes and said “You have no compassion.” My mother had incredible insights into reading people, and she had yet to be wrong. That startled me and I swore I would watch over that nurse like a hawk.
After that Mom turned to me and asked where we were, and I just told her the doctor wanted to talk to us as a family to make sure we had a view of the whole situation. That she didn’t need the feeding tube and that we were going to make her as comfortable as possible. That got her attention. She looked at me, smiled sadly and knowingly, pointed her finger at me and said in a Don’t-try-to-fool-me tone “I know what that means.” and punctuated the sentence with her finger.
I knew I had to have the conversation with her, but wanted to get the feeding tube out and get her comfortable first.
The nurse without compassion came back in and changed the oxygen mask to the cannula, but she did not give any medicine for the air hunger. And she left. Within about a minute, Mom couldn’t breath and was begging me to get the nurse. I told her I would and have the nurse bring the mask back. “Please. Hurry.” she gasped. Those were the last words she spoke to me.
I told the the nurse Mom couldn’t breath, and to hurry and change back to the mask, because she was suffocating, The nurse just looked at me and said she was told to keep Mom and the cunnula. I argued and said that Mom would have to be given the medicine for air hunger. The nurse said she had no idea what that would e, took her time looking through the orders and said that there was nothing in the orders about it. By that time I was angry at the nurse and panicked and yelled at the nurse to just get the damn mask back on my mother so she could breath! and ran back into the room.
Mom was holding the cannula and gasping. Finally the nurse came into the room, hooked up the mask again and left. After Mom could breath I hugged her and told her how sorry I was. She said it was OK, that she knew I loved her and that she wanted to rest. I would tell her what the prognosis after she rested, when the family was in the room. I wanted to ask her if there was any one she wanted us to contact? Was there anything she wanted us to do for her? Did she want to go home to die or stay there? And I wanted to ask her, when I was alone, about things she told me she wold only tell me when she was dying. And I wanted to hug her for a long time, long enough to last a lifetime. I wanted to get her some wine and all of us have a drink with her. I wanted to take her outside, so she could feel the sun on her face one more time, hear the birds, see the sunshine, see the trees and say goodbye to the world. I wanted her to have the chance to tell all of us whatever she wanted us to know.
Shortly after Mom drifted off to sleep, that same nurse came in, did not say a word and gave her a shot in her IV. I later learned it was the morphine that she should have been given for the air hunger. Mom never woke up after that.
Mom slipped into a deep sleep and then eventually into a coma.
That afternoon there was a knock on the hospital door. It opened and there was C, one of my other best friends. I saw her face and almost ran to her, and just hugged her for a long time. We went outside to the waiting area and talked for along time. She was just there for me, she was passing through and decided to stop in. She just wanted me to know I was loved and that she was there for me, for moral support and was praying for me. It meant so much and was beyond needed. I friend and unloaded on her. I didn’t know what I was doing, if I was doing anything right, I didn’t know how to do it. I didn’t know how to loose my Mom. How do I let her go?
My friend left and I felt lighter, though still overwhelmed and deeply sad.
My Dad and sister went home to sleep that night and would return early the next morning. I stayed at the hospital and again watched over Mom as she slept. I cried, and prayed and sobbed, and prayed. I was afraid to sleep in case Mom woke up and needed something. I was afraid to sleep in case she slipped away in the night.
I sat with her, in the quiet of the late night, listening to her breathing. I knew I had to have that conversation with her. And a part of my knew she would not be conscious as I knew her again. In a situation like this, you have to tell them, you have to break your own heart and give them permission to leave. I loved her so much, and she deserved that. And so I did. I held her hand,stroked her hair and her face, and I told her what the doctors had said: That miracles can always happen, but that her little body was jsut getting weaker and did’t have the strength to fight the pneumonia. I told her, as tears streamed down my cheeks and fell onto her , that I knew she was tired and had suffered a lit of pain. If she was tired, if she did’t want to fight any more, that it was OK. She could let go. I told her that I loved her more than anything, and I wanted her around forever, but she could go if she wanted, if it was just too tired. We would be OK. Everything was OK for hr to leave. I told her that it had been my honor to take care of her and my honor still to be there to see her off as God took her in his Great big hands.
I sat quietly with her for a long time after that. I sat and held her hand and watched her breathing. I sat with her and prayed and begged God. I sat with her and treasured every moment we had together. I sat with her quietly and loved her like only a daughter could.