A Walk with Mom: Day 14

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.

A Walk with Mom: Day 13

I don’t normally post personal things, but this is different. It is with a heavy heart that I say that my mother, Genny Burch, is very, very sick and is not expected to make it. We will learn more from doctors either this afternoon or tomorrow. I don’t even know how to write this post. The staff at Southeast Alabama Medical Center have been wonderful, extremely compassionate and given her exceptional care. My father, James Burch, is being very brave, but is no doubt hurting. My closest sister in age, R, has decided to leave the situation and has no interest in participating, so it will be my father and me. I have no idea how to do this and am terrified. I don’t know how to do this. Please, please say prayers for us. Please pray that Mom has a peaceful passing, pray that my father be given strength and comfort, and please that I may have wisdom and courage as I make these decisions with my father. Most of all, please pray for a miracle. She has lived a very full life, been a wonderful mother, an amazing grandmother and even raised 65 foster children, She has truly made a difference in this world in so many ways. And if you have any wisdom or advice, please let me know, I need support and love. Thank you.

Sunday July 10, 2016

This was one of the hardest days of my life for many reasons.  It was the day I truly found out that Mom was not going to make it.

Mom had been getting weaker and weaker and was having trouble sitting up by herself. We had been trying to figure out any way to save her. But she wasn’t responding.  She was on 100% oxygen since we had found out she had sever COPD that had not been diagnosed.  Her pneumonia was getting worse and they still could not find the source of another infection they had identified.

They had run every test on her possible.  They had given her x-rays, MRI’s, sonograms, every blood test possible for everything they could think of. She was just so weak. And what they could do was extremely limited because of her sever malnutrition. They could not operate at all because she would not survive being put under. They could not do any more tests because the only ones they had not done would be invasive, and she would not live through it.  They just kept saying, if she weighed more, there would be a lot more options.

By now she had not eaten on 4 days and had probably lost another 7 pounds or so. She was still smiling, but she was getting weaker.  I remember her sitting up and she looked at me and said “I know I brought this on myself from not eating, but I just didn’t think getting better would be this…hard.” It broke my heart.

We had talked to the doctors and decided that maybe, maybe the next day she would pull out of it, but that more than likely she would not.  Palliative Care came down and talked to me. Joanne said that we have to face the fact that miracles happen, but more than likely Mom was going to pass. That her body was so weak and it seemed that her immune system was failing.  They would watch her and continue to give her fluids and antibiotics. The next day would determine it, but to understand that most people who were in the hospital for more than a week with pneumonia didn’t make it. We needed to start thinking about what she might want.

Mom was just getting more and more weak.

I called my boyfriend sobbing. My heart was breaking and I didn’t know what to do.  He was very compassionate and reassuring. He tried to help but that is a heartache that cannot be helped. I called my best friend and cried to her.  How do you prepare to loose your Mom, your best friend.  She had lost her Mom, and so she talked about it in a way we had never talked before.

After the conversation with the doctors that Mom was dying and to pray for a miracle in the next day, my sister decided to leave. She announced that she had to get back to work.  She did not have nay more time off and she did not want to loose her job.  She she was leaving.

I just looked at her. “What? You can’t leave. They told us that Mom is dying, she only had a day or tow left.  Mom is dying. You can’t leave,” I said. I could feel the panic and emotion rising up from the tip of my toes to my head, I could feel it coming is waves. I felt sick and dizzy.

“I need to get back to work. I am leaving, I am not staying.  I have no more time off, and they will fire me,” She said again very matter-of-factly.  “They will give you time off if you tell them Mom is dying. You will not get fired for that. You can;t leave, please stay. I can’t do this by myself. I need you here, you are my big sister. Mom needs you here and so does Dad.  We need to be here as a family for Mom. Please don’t leave me, I am not strong enough to do this without you. Please stay for Mom, she needs to say goodbye too,” I desperately pleaded.

“No.”

And then I did something I never thought I would do. I fought back and fought hard.  I pulled a dirty trick to get her to stay. I looked at her and defiantly said “I am not going to let you leave me to handle all of this,  You are part of this family too and you need be a part of this.  I will not let you do this. So I am going to beat you to do. I am taking my stuff and I am leaving – going back to Atlanta.  You can handle the rest of this.  And if you want to leave, then YOU are going to have to be the one to tell Dad that YOU and leaving him alone to deal with Mom dying. YOU are going to have to be the one to leave him alone, and scared, if you decide to leave!”

I packed my things and gave Mom a long tight hug.  I whispered to her that I was not really leaving, I would be in the parking lot waiting for Rita to stay. I would be back in a few hours. That was the last hug she gave me.

I left and went to the parking lot and sobbed.  I didn’t know how to do this alone. I didn’t know how to do this if my sister left.  I went to the Waffle House across the street for the first meal in in tow days.  I silently cried as I tried to eat.  I could see the window of Mom’s hospital room from the Waffle.

I was devastated. There are no words to describe the devastation, fear, sadness, terror of those moments.  I went back to my car, called family and friends to tell them the news.  I called my boyfriend to cry and tell him. Called my best friend who had helped me so much, let me vent and gave me incredible medical advice that helped me navigate and make good decisions when I had no clue.  I was falling apart. My heart was breaking and I my head spinning.

After some time I called Dad to see how things were and if my sister had decided to stay. He said yes, he was staying and that they were good. I came back and told him later that I was just in the parking lot, I never and would never, leave them during this time.

My best friend K called and said that she wanted to come down, to see Mom and say goodbye. A few hours later she was there talking to Mom, holding her hand and saying how much she loved her.  Her Mom and my Mom were best friends until her Mom passed away 3 years earlier. It truly broke my mother’s heart to say goodbye to her best friend.  And now my best friend was saying goodbye to my mother. And Mom truly loved her like a daughter.

Mom was weak but tried her best.  She was always proud and wanted to seem as well as possible to others. She talked for a while but then grew too tired and drifted off to sleep. K took pictures of me with Mom, took pictures of my holding Mom’s hand.  We then let and spent the night over at the family compound leaving my sister and Dad to take care of Mom.  She was sleeping almost all the time now, so it was an easy night for them.

I cried a lot at the family home with K.  We talked of her Mom and mine. of old times and the things they would say to us.  That night I tried to sleep but had terrible nightmares again.  How do you sleep when your heart is breaking?