The Day You Died – Part 2

*Disclaimer….. this post contains vivid descriptions of hospital life both before and after someone has died. From my perspective. I hold nothing back.

He’s gone. It’s over. I can never speak with him again. I can never hold his hand. We can never laugh at something together. I can’t yell at him for leaving the gas tank so close to empty. I can’t make him his favorite meal or spend the morning reading in bed with him. I can’t pretend to be sleeping so HE will get up and make the coffee in the morning. All of it. Over. In the blink of an eye. Without any warning.

I sat in the tiny room with Anna and the palliative care doctor when someone came in and told me that I could go to the ICU waiting room and make the phone calls that I would need to make. I stood up and slowly stepped outside of the door, every step reminding me that this was REAL. I could feel the eyes of the dozens of people sitting in the waiting room, I could feel the weight of their eyes on me, each set of eyes trying to figure out if I had just received bad news or terrible news. “He’s dead.” I thought to myself, trying to send them the message telepathically. “Stop staring at me.”

I walked quietly to the other waiting room. This one was outside of the ICU, where John was. Where his body was. I sat down inside the room and realized that the palliative care doctor had spent a lot of time with us and he probably had other things that he needed to do. I thanked him sincerely for coming and being with me during the hardest moments of my life, and I told him that if he needed to leave, I would be fine and that he could go. He asked if I was sure, and  he left after I nodded my head that I would be.

A nurse came into the room and asked if we wanted a chaplain to come in and talk to us. To say a prayer. For me, having a chaplain saying a prayer about how things were going to be OK, how John’s body was at rest and also his soul, would have been the worst kind of torture imaginable. I asked if there was a social worker available, and the nurse seemed surprised, then looked at her watch and reported that they had all gone home for the day. She repeated her offer of a chaplain, and I repeated my declination. Then she left and closed Anna and I into the room. Alone.

I took a few deep breaths and then realized that I needed to tell people what had happened. I needed to call my daughter who was thousands of miles away, and tell her that her father had unexpectedly died. I needed to explain that even though I had told her a few hours earlier that he was doing better, that his cancer had responded to the chemo, and that he would be going to rehab soon, he was now – dead. I called and heard her voice. I told her to sit down, and she said, “Oh, no.” I asked her if she was alone in the house and she said that she wasn’t. Good, I thought. There is someone there to comfort her. And I told her. She said nothing… I could only hear the sounds of her breathing and sobbing on the other side. After she regained some composure I told her that we would make arrangements to fly her home as soon as possible.

Then I tried to call John’s sister, but suddenly there was no cell phone reception in this room. I looked around and saw a landline phone, but the calls I needed to make were all long distance. I tried a few more times, and still there was no reception, so Anna and I left the room and walked across the barren hallway to open the door into the ICU. The receptionist saw us and asked if she could help. When I told her my problem she said that the best place for cell phone reception was in the hallway outside of the ICU ward, near the windows. So there I stood,  periodically crumbling to the ground and into Anna’s arms as I called my sister-in-law, my brother, and my aunt to tell them that John had died, all the time while staff workers and visitors walked past me. Looking at me. Wondering what had happened. Afterwards, Anna and I returned to the little windowless room and sat. What do we do now, I thought? There was no one to guide us, no one had sought us out. We were alone. After a few minutes, Anna decided that she wanted to go and see her dad, so we walked back into the ICU ward and told the receptionist. She called a nurse, who checked his room before letting us in and warned us that we would see the tube still in his mouth from the bag mask that had been used during CPR. We took a deep breath and walked cautiously into the ICU room where, only a few months before, we had received such good news about a transfer to the Mayo Hospital in Rochester, MN. The curtain had been drawn to provide privacy, and a picture of an angel, printed on a sheet of paper was tapped to the door frame to let workers know that there was a dead body in the room. Not a person. A body.

John laid on the gurney, in the same gown that they had freshly put on him earlier that day. He laid still, with a grimace on the right side of his mouth where the tube stuck out. His teeth clenched on the bag mask.  His eyes were closed and if you didn’t know better, you would have thought that he was resting peacefully. Anna stood back while I immediately went to him, touching his still warm arm and crouching beside him to whisper, “I will love you forever,” as I kissed the top of his fuzzy head. The new chemo hadn’t yet robbed him of his new growth. His head was warm, his muscles soft. His body still and free of pain. The monitor beside him seemed to berate us with a perpetual flat line running across it, forever flat, forever gone. Otherwise, the room was still. After a few minutes, Anna and I walked out and the nurse asked us if we were OK. OK? We would never be OK! She rephrased her question and asked if there was anything we needed?

I stared at her, wondering again why no one was helping us through this, why there were no social workers or staff members assigned to walk us through this process. It had been over thirty minutes since we left that small room outside of the Code Blue area. I felt frustrated by the lack of support, so I asked, “Isn’t there a social worker or someone that can help me through this? After all, it’s the first time in my life that I’ve had a husband die while in the hospital, but I’m pretty sure it’s not the first time you have had a patient die here?”

“Hasn’t a chaplain met with you? I can call one,” she answered.

“I DON’T WANT a chaplain. Is that the ONLY person on staff who can help me? What about a social worker? I don’t know what to do. Do I call a funeral home to come and pick him up? Do you? I have stuff upstairs in our room. I don’t know how to do this by myself. I would think there would be someone guiding me through this process OTHER than a chaplain for the people who don’t want a chaplain?”

“Oh, ……well,” she seemed surprised and looked at her watch, “I think that the social workers have all left for the day, but I will see if I can get one,” she replied. “Do you want to meet one here or up in the room?”

“Up in the room, thank you,” I said and left to go and pack my things. The things that I had learned to accumulate over the past 83 days of living in a hospital. The things that had made the room feel as much like a home as I could manage, while still being compact enough that it could be packed up and moved quickly as John’s room was changed, which happened often.

So Anna and I walked out of the ICU, away from John, arms wrapped around each other as we took each step feeling the horror of the past events slowly seeping in. We went back up to the eighth floor where we had felt at “home.” My eyes to the ground as I walked, I could feel the nurses looking at me as I walked past their station to go into the room and pack. Of course they would all have known.

As we entered the room, I immediately noticed that it was bare. No bed, no pictures, no Alexa, no salt lamp. Everything was packed for us and sitting on two carts. John’s bed hadn’t been returned empty to the room, but the space where it had been was just as painful to see. I stared at the cart holding my belongings, no longer OUR belongings, and I was immediately furious that someone else would pack MY things, I was especially angry when I saw that they had packed things like John’s hospital cleaning supplies. Why the hell would I want to bring his mouth swabs, his cleaning wipes, or his bed protector sheets? Why the hell would I ever want to see those things again? I understood that they were paid for, technically they WERE mine, but it felt heartless to see them there mixed in with my personal things.  In anger, I took the offensive items off of the cart and tossed them across the room along with the two cancer support bracelets I had been wearing for months. After tossing a few things around, I calmed down and realized that I wasn’t acting very mature, so I retrieved the tossed items and began to organize the boxes.

One box on the huge bedless hospital room floor to stay here, one box on the cart to take home. I went from two carts of items down to one. Then I sat down on the cot where I had been peacefully napping only an hour or two before. Blissfully unaware of the tragedy that would occur, unaware of how tortured my life would become.

Then, the oncologist came in followed by one of the nurses who had worked so hard to free the scabs from John’s mouth only the day before. The oncologist told me that she had heard what had happened and she was shocked, “He was fine only a few hours ago!” she said as she held me and I sobbed. A few seconds later she realized that there was no one with Anna and I and she asked, “Isn’t there someone helping you with this?” I told her that I had refused a chaplain for personal reasons, but that I had asked for a social worker but had been told that they may have all gone home. “You’re kidding me! Well I’ll get someone in here. SOMEONE has to be here,” and just as she said that, the social worker nervously walked into the room.

Now, to be fair, the social worker had no way of knowing that I had dealt with the death of several different family members before, but never at a hospital. At hospice, the staff had asked what the plan would be before my mother died, so that when it did happen, they began to implement the plan immediately. I knew that the social worker would need to know which funeral home to contact, and after that, I really didn’t know what she would need to do. She nervously sat down and began to instruct me that she would need to contact a funeral home to come and pick up John’s body, to which I responded that I knew that, and I had an idea of which funeral home I wanted to use.

She ignored me and said that since we lived over two hours away, she wasn’t sure what funeral homes were available. I told her that I knew which funeral home I wanted, then I looked at Anna and asked if she agreed with my selection (which she did) and I then gave the name of the funeral home to the social worker, who again didn’t listen. She said that she would go and get a list of funeral homes available in my area to pick from and before I could say anything more, she bolted from the room.

I sat, staring at the floor, looking at the nurse and the oncologist with confused, blurry eyes. I looked out the window. It was beginning to get dark. Now what? This had NOT been the plan. What had just happened? What do I do now? How can I be SO alone? The realization of having no living parents and no… no soulmate, no best friend, no rock to lean on hit me. I felt numb. There was no one to help me. I was IT.

The social worker came back,  holding a few papers that she had printed with the names of the two funeral homes in my town. “There were only two, I’m sorry there isn’t more to pick from,” she said as she ignorantly handed me the papers. I took them out of her hand without looking at them and suddenly noticed her reaching for the pager that was vibrating at her hip. “Don’t you dare leave this room,” I thought to myself, “There is NOTHING in this hospital that is MORE important than what I am going through RIGHT NOW.”

“I”m sorry,” she said. “I’m going to have to leave to take care of this. Let someone know when you have decided and they will call me so that I can contact the funeral home.”

Without ever looking at the papers, I stared into her eyes with anger towards her lack of compassion, her lack of listening skills, and her lack of support and hissed, “I already told you which funeral home I had selected,” and I gave her the name again.

“Oh,” she said, a bit shocked. “I didn’t know that was your final decision, I wanted you to see the list before you decided,” she answered nervously.

“I TOLD you the name of both funeral homes that were in my area. I know them because I’ve had to use them just recently for other family members,” and AGAIN I told her which one I was selecting. She wrote the name of the funeral home on the paper attached to her clipboard and quickly excused herself.

The oncologist, who had somehow found the time to leave her clinic and rush over, needed to return to her office. I hugged her once again and thanked her so much for coming. I told her, “You and the palliative care doctors were the only ones to come to us.” And then the nurse helped us to get our things from that room down to my car, I hugged her and said thank you, closed the passenger door, and Anna began to drive us home. We didn’t speak. There was nothing to say. We looked at the road and at the trees, bright with changing leaves, and let our jaws drop open in shock. Had this really happened? It had. I suddenly heard and felt John’s presence near me, calmly and joyfully repeating, “I’m OK. I’m OK. I’m OK.” I believed him. But I wanted him to be OK and to still be with me.

I called the friends who were taking care of my younger girls, told them what had happened, and asked them if they could bring the girls home at a set time. A time that I knew we would have arrived home and settled in just a bit. I also asked that they not tell the girls what had happened. They both graciously agreed. We continued quietly home. The miles monotonously ticking away. The trip was taking forever.

Our quiet drive was suddenly pierced by the sound of my phone ringing. Even on vibrate mode, the sound filled the car and shook our bones back into alertness. Who would be calling me right now, I wondered? I checked the caller ID and it was a number that I didn’t recognize, but something made me answer it anyway. The woman on the other end apologized for the loss of my husband that she had just recently learned about.

Loss of my husband. Loss. He’s really gone. Now everyone knows and there is no denying it. He is dead. She went on, explaining that John had been listed as an organ donor, and although she knew that this was a very sensitive time for me, organ donation was also

a time sensitive situation and she wondered if I wanted to honor his wishes? I could feel a warm smile in my soul, even if my face couldn’t register one, “Yes! Yes! I would!” And then she went through a 45 minute questionnaire to see if John would qualify to give the gift of eyesight. He did. (click HERE to read that story)

Once home, Anna and I waited for her two younger sisters to arrive, I had us all sit down on the couch together and one of them asked, “Is daddy home?” I told her that he wasn’t. “Is he OK?” she asked. And I told them. The little girls flailed and screamed their grief and we held one another on that couch for a long time and just sat. We sat and cried and I answered all of their questions. It was already late and time for bed. Not wanting to be away from one another, we all slept together in my room. Anna by my side and the two little girls curled up in blankets on the floor.

I woke the next morning and looked around the room. I realized that I was home… and then I realized why. And almost every day since, I wake up with the same realization. So begins a new life. A life without my best friend, without my soul mate. And I am forced to relive this day, at least once a year in vivid clarity.

A friend recently shared this song….. and It has spoken to me… seemingly about this day.

If you, or someone you care about is dealing with grief, here are some tips for coping with grief from people who are dealing with it themselves!