Red Candle for Mom

March 22, 2015. First Day of Spring.

So, I lit a Candle for Mom Today.  A red one. She loved red. March 14th, at 3:15 P.M., she left. She knew I was there. She said my name for the last time at 12:30 P.M.  But the end of life process is not precise, and it’s not up to us.

After weeks of agonizing decision-making, my brother and I had decided that the mechanical breathing thing would be removed. I was told that without it, she could not breathe. It was my job to authorize them to take the damn thing off. I was her Power of Attorney. The doctor had told me and my brother that there was no prospect for recovery. They had put a pacemaker in her chest, done a tracheotomy, treated her infection but her lungs were not working. All the medications over the last few weeks had damaged her brain to the point where she was now oblivious to what was going on. My brother and I did not believe she was oblivious. When we spoke to her, we were convinced that she knew what was going on. But the mechanical breathing tube had robbed her of her voice. She could not vocalize her thoughts. When the ambulance came, they just went into the room and started.   I stopped them.

“I want to speak to my Mom.”

“She doesn’t know what’s going on.”

I walked past them and bent over my Mom, camera phone in hand. I wanted to record her response because I was convinced she was quite aware of what was going on. I knew my Mom.

“Mom,” I said, “we’re going to take you to another place, a hospice, and they’re going to remove the machines. It’s going to be a lot more comfortable for you there. Jamal and I will stay with you the whole time.”

I didn’t know how to tell her she would die once they removed the ventilator. The doctor had told me that her lungs and stopped working completely. The machine was doing 100% of the breathing. At her age, her lungs would never heal. I continued talking to her, “Mom, you probably won’t be able to breathe after they take the ventilator off….You probably won’t come out of here…so this is probably goodbye….” I stopped, not sure how to go on.

There was no response. But I felt that she understood me, that she already knew, and was ready. I persisted, “Mom, do you understand?”

Her mouth opened and she clearly mouthed, “Yes.” The breath was labored but I heard the whispered voice.  Again I asked, “Mom, do you understand?”

“Yes.”  Just air, no sound.

“Are you O.K. with that?”

Now little more effort, more audible and unmistakable,

“Yes.”

The EMS operator was hovering. They wanted to get going. I was wasting time. I didn’t know why, but I felt like I wanted to be sure my Mom know what we were about to do. The doctor had assured us that she was not conscious, not coherent. He had said she basically answered the same for everything they asked her.  But I couldn’t move forward without being sure. My Mom was the kind of person that didn’t want anyone to make decisions for her. She was always very clear, and very vocal about what she wanted and what she didn’t want. Most people who crossed that line with her would hear about it in no uncertain terms. Since this was the last act I would probably do on her behalf while she could still participate in the process, I asked her one last time.

“Mom, do you know who is talking to you?”

I saw her take a deep breath, I saw her open her eyes. She had not had her sight for maybe 15 years, but she opened her eyes and with a great breath, she said,

“Marie.”

She said it loudly enough for the whole room to hear her. Without warning, my heart broke and shattered in the room. I had been holding myself together, keeping strong for her, for my brother but when she said my name with such strength, I was unprepared. With great heaving sobs I told my mother how sorry I was about the circumstances she was currently in. I don’t remember exactly what I said, but as close as I remember, I said, “Mom, I am so sorry about what happened to you, all these machines, all the procedures…I know you didn’t want any this, and I am sorry I couldn’t follow your wishes, I wasn’t able to be here…I don’t know why all of this happened. I don’t know, but I am so sorry.”

My face was awash in tears. My brother put his arm around me.

“It’s OK,” he said.

The EMS Operator came over and indicated that they had to get started. He gave me a comforting pat on the shoulder. I knew I had heard my mother say my name for the last time.

My name. “Marie.” The last word my mother said.

My name was another instance where my Mom refused to let other people make decisions for her. I didn’t know that my official registered name was not ‘Marie’ for many years. When I was old enough, I asked my Mom about the discrepancy in my name. She told me that when I was registered (children were not registered at birth in Jamaica until relatively recently) my aunt, who went to do the registration, decided to register me as ‘Maureen,’ instead of ‘Marie’ as my mother had instructed her. True to character, my mother has never called me ‘Maureen’ in her life. And so, I did not know my name was ‘Maureen’ until I passed my scholarship, started high school and my official name had to be used. When I was able to, I officially changed my name from ‘Maureen’ to ‘Marie,’ just as my mother intended. I didn’t tell my mother. I didn’t need to. To her, I was always Marie. Now Mom had just called my name for the last time. The last word she ever spoke. She had summoned the strength to vocalize it, and it ripped my heart to pieces. Now they were asking me to step out of the hospital room. They wanted to prepare her for the transfer to hospice. There wasn’t much space in the room, so I watched from the door as they switched ventilators and transferred her to the gurney. I asked my brother if he wanted to ride in the ambulance with her. He did. I drove behind the ambulance.

It was less than 10 minutes from Kindred Hospital to Vistas Hospice at West Palm Hospital. My brother commented that the room wasn’t as pretty as it looked in the brochure. I smiled and agreed. It wasn’t, but it was comfortable.  We were in the room for a little while before  the nurse informed us that there was a possible a 2 hour delay because the doctor was not on site yet. The nurse also told me she would try to get hold of the doctor and if it was OK with me, she would get his authorization for the technician to go ahead without him.

I was glad for the delay. There was still time to change my mind.  They had made it completely clear that if we had second thoughts they would stop the process.  I couldn’t sit still.  I decided to go get some batteries for my camera. Before I was half way there my brother called me to let me know that the doctor had OK’d it and the technician was ready. It was time to remove Mom from the ventilator. I told him to ask them to wait till I got back. He said they couldn’t do it without me there anyway. I got back in a few minutes. The Chaplin came in as I entered the room.

“Should we say a prayer? What is her religion?” Not being very religious myself, I didn’t know. I knew she loved going to church and singing in the choir.

“Maybe protestant? Well, she’s a Christian I guess.”

“Well, shall we say The Lord’s Prayer?”

“Yes, that would be good.”

The prayer was beautiful and peaceful. A few minutes later the Chaplain left the room. The nurses and technician came in. They kept asking me to step out of the room. I wouldn’t. They strapped a small oxygen mask over her nose. My brother and I watched as they removed the ventilator. We didn’t know what to expect. We thought she would just stop breathing. She didn’t. She started breathing – long, slow breaths. Her face was relaxed, peaceful.

She inhaled deeply, “Uuhhhh…..and exhaled

“Uuhhhhhh…. and exhaled. Uhhhhhh….. and exhaled. Uhhhhhh…. and exhaled”

“Is she still on the machine?” my brother wanted to know.

“No,” answered the nurse. “That’s all her. She is definitely breathing on her own.”

My brother and I sat and watched as our mom continued to take those long slow breaths.

“Uhhhhh……..Uhhhhh……Uhhhhh…….Uhhhh….”

We were quiet. It was as if we didn’t want to interrupt her. My brother had asked the nurse earlier how long Mom would be able to breathe. The Chaplain had told us that although we wanted precise answers, there was nothing precise about the end of life process. It wasn’t up to us.

“Uhhhhhhhh……….Uhhhhhhhh……….”

We listened, each with our separate thoughts. The Chaplain had said there was no way to know when the end would come. Some people are not ready and linger, some are ready and go very quickly. It was not precise. So my brother and I listened and waited. Was Mom ready, or would she linger?  She seemed to be sleeping. Her face was peaceful.

“Uhhhhhhhhhh………… and exhaled.

We listened for the next breath, but it never came. It had been less than an hour since they removed the ventilator. After a few minutes my brother and I accepted that there would be no more breaths. We went over and touched her face. Her body was warm, but she had left. We called the nurse. They came in and listened to her heart with a stethoscope.

“She’s gone,” the nurse informed us.

My brother and I stayed with her another half hour or so. We didn’t talk much. We were each processing the journey in our own way. Finally, my brother went over and kissed her forehead. He straightened up, rather quickly. I looked at him.

“That’s not Mom.”

“What do you mean?” He thought about it for a minute.

“You know how they say the spirit leaves when you die? I think Mom already left.”

I went over and touched her face. It was still warm but a little clammy. I pulled my hand away. It was difficult to explain the sensation, but there was a strange emptiness. A feeling of absence. My brother and I had experienced the same sensation. It was as if we each knew that Mom would be OK. She had left the vehicle that had carried her essence, her spirit for 78 years and 8 months. I was glad we were with her through the journey. She had let us know we had done right by her. She was at rest.