If you’ve come across this post, I encourage you to look back at The Grief No One Talks About before picking back up on this post, Part 2.
When the nurse came in, we were still recovering from the scene of my mom’s last lucid moment. She told us that she no longer needed to take any vitals (heartbeat, temperature, oxygen saturation, etc), but if we wanted her to, she would. My brother and I decided we wanted to continue to monitor her. We knew the end was so close and there was no avoiding it, but I think we both found comfort in continuing to see how things were progressing on a physical level. The nurse checked her oxygen saturation and even with the oxygen mask flowing at the highest concentration, her levels weren’t where they needed to be. (The day before, she had taken her mask off when I went downstairs to get something to eat. I was gone 15 minutes and when I came back up she had her mask off and her oxygen saturation was at 34%.For those that don’t know, anything below 90% is considered dangerous. Low oxygen causes tissue damage, mental confusion, brain damage, loss of consciousness, and even heart attacks.) The nurse told us it was low but the oxygen was as high as it could go. She then asked us to make a decision I never thought I would have to make.
My mom had ordered a DNR (do not resuscitate) and a DNI (do not intubate.) This meant the hospital staff did not have permission to do CPR, place a breathing tube, etc. In some hospitals it is called an AND (allow natural death) order. This means the hospital can provide pain management, but can choose to withhold or discontinue artificial feedings, fluids or any other treatments that prolong the dying process without adding to quality of life.
These orders were not new. I found out about the DNR after my mom had her first heart attack in 2013. She gave me a form, which I don’t even think was a legal form, that listed me as a medical decision maker and stated that she didn’t want to be resuscitated under any circumstances. I remember feeling so angry at her that she would choose to have the doctors just let her die. I felt abandoned. Why, at 45 years old, would she CHOOSE to not be here for my brother anymore? To ask the doctors to let her die? She asked me if I was comfortable making that decision and I was honest with her. I told her it made me really sad to know she would choose to not be here anymore. She basically told me it didn’t matter because she had the paper notarized and the hospital had a copy. A few months later, she had another heart attack. I didn’t get to see her until they had stabilized her and put her on a ventilator. The next day, she woke up still on the ventilator and was livid. She tried to sit up and grab at the life support hanging out of her. I have never seen such a furious look in someones eyes. She pushed the call button and tried to communicate to the nurse that she wanted me to leave. The nurse asked me to leave because I was making my mom agitated. A few days later when she was off the ventilator, I walked in and she tried to say something but her throat was so sore from the ventilator. She barely got the words out. “You betrayed me.” I told her I was never consulted by a doctor about whether or not they could do it. But to be honest, if the doctor would have asked me, I would have told him yes. She then put me on the “ban” list and I was left in the dark about her condition for the rest of the stay.
Anyway, back to 2016. The nurse told us that because her oxygen was low even with the oxygen mask at full blast, that it was technically a life saving measure. She said that we needed to decide if we thought my mom would want us to take the oxygen mask off. She said sometimes the family is comforted by seeing their loved one without a mask on during their final moments. My stomach dropped. I knew immediately that the answer was yes, but I told the nurse to give us a minute while we talked about it. We all agreed pretty quickly that it wasn’t adding any quality of life and it was only making the dying process longer. I walked to the nurses station and told her what we decided. I asked how long it would take and the nurse said she would fall asleep and die peacefully in 10 to 30 minutes, she “couldn’t imagine it would take much longer than that.”
The nurse came in silently and took off the mask. We all gathered around her bed, took turns giving her hugs. Her breathing got really loud as we tried to comfort her. “We love you…You can rest now… We’ll see you again soon… It’s okay to let go…This will be over soon.” She got agitated and started mumbling. She grabbed at things that weren’t there. We tried to tell her to relax. She tried to sit up a few times and we gently laid her back down. This went one for far longer than 30 minutes. Two people left the room because they couldn’t handle it anymore. The nurse finally came back in and said that for my mom’s comfort, we should put the oxygen back on.
I felt so empty. Six days earlier she was diagnosed with cancer. They went from talking about hospice in home, to hospice in a center, to saying she would never leave and taking her off food and liquids. So many intense things happened in just 6 days and I thought my mom would be done suffering after we took the oxygen off. I needed her to be done suffering. I needed it to be over. And now I felt like I had failed her by allowing her to be off oxygen with extremely dangerously low oxygen levels for so long. I feel like we caused more harm. The physical stages of dying already does so much to a body, and now we had deprived her of oxygen on top of that. I had to remind myself that we did it so that she would die peacefully, like we were told she would do, that she would fall asleep and be comfortable in her final moments. But I wasn’t the only one who felt like they had failed. The nurse told me she felt like she had failed ME. The fact that the nurse said ME, instead of my mom, just reiterated the fact that my mom was really already gone. She would never speak to me again, she would never see my face again, never hold my daughter again. This was still the end. My mom was still actively dying.
That night my brother and I stayed at the hospital in her room, just the three of us. The nurses changed shift and she had a really great nurse that night. Robin came in every 45 minutes to give her medicine to keep her comfortable. Every time she came in, she made sure my brother and I were comfortable, too. She checked her vitals each time and kept me updated on what was happening. I asked her to turn up the thermostat because my mom was ice cold to the touch, but she explained that one of the stages of dying is loss of temperature regulation and that it was best to keep the room at room temperature. I really appreciated that she spoke to me in a way that was informative, but tender. Robin said I could check the vitals any time I wanted to and show us how to use the machine. Her oxygen saturation stayed around 60% all night, but Robin said her heart beat was getting more and more irregular. I was so tired that I was physically having to force my eyes to stay open. I have never experienced that before. I was so mentally and physically spent that it was like my body would NOT let me stay awake.
At 7, we woke up because she was stirring around and making noises. My brother and I sat on either side of her and talked to her. She opened her eyes and looked up and to the left. I moved to get in to her line of sight but I could tell she could not see me. Then her eyes darted to the other side towards my brother, but not AT him. She mumbled, closed her eyes and was calm again.
My brother and I went back to the couch and started talking to each other. I can’t remember what brought it up, but my brother did an impersonation of a singer we both like, and we both started laughing. I looked over and noticed her breathing had slowed. We walked over to the side of her bed and said her name. We nudged her like we were trying to wake her up. The room was silent. My brother turned the monitor on and we got only one heartbeat. We turned it off and just stood there, completely still. After a few moments we looked at each other and hugged, sobbing. We hugged her and told her we loved her.
I went to get the nurse but she was already walking towards the door with the two new nurses for this shift. I motioned for them to come in. I said, “Is she gone?” They all three looked at her without moving. Then they all three took turns checking for a pulse. Robin looked at me and said, “She’s passed.”
The last thing my mom heard was my brother and I laughing. She used to tell me she missed hearing my brother and I’s laughter in the house. As cliche at it sounds, I find myself wondering if she was waiting for a happy moment to let go.