Breaking Elizabeth: Part 2

Breathe with me

They had left her on the ventilator overnight after her third surgery and it was time to take the breathing tube out. She was doing well for while and I had left to get a snack in the cafeteria. My brother called me as I was paying and said that mom was having a hard time breathing and should get back up there. I got there as fast as I could and as I was buzzed into the ICU I could sense that something was really wrong. I opened the curtain and saw Mom breathing fast and hard with her eyes wide. I could see she was well on her way to respiratory distress. The doctor thought she might just be anxious and that she would ease into breathing without the tube with some intravenous anti-anxiety medication.

After 20 minutes she was breathing harder and her oxygen sats were dropping. My gut had been right and she was going into respiratory failure. They decided to put her on the bipap machine, which is a mask that fits over your face, is strapped tightly to your head and blows air against your nose and mouth. It made her feel even more out of breath and I could see the anxiety on her face, brows furrowed, eyes tight shut as she gripped the bedrails and her knuckles turned white. I was standing at her side, putting on my calm nurse face, trying and failing to sooth her. I was trying to keep her, my family, and myself calm, but I was scared. This wasn’t normal and we couldn’t figure out why she wasn’t breathing.  

She was “air-hungry,” anxious, terrified, but still trusted me. I could see it. She wanted to rip that mask off of her face and tried multiple times. I could see the desperation to breath in her eyes I could see her Sats dropping lower as they prepared to reinsert the breathing tube. It felt like years, though I’m sure it was only moments. Her eyes looked up at me pleading as she started feeling even more desperate for air and reached up for the mask, again trying to rip it off, her oxygen hungry body believing that the mask was keeping her from breathing.  I had to hold her hands down as I continued trying to sooth her. I knew as I looked into those desperate eyes, that even if she lived through this, these moments would haunt me.

My face was close to hers as we waited. There was increasing desperation in her eyes, frustration and terror, but even worse there was trust. She trusted me, she was trying so hard to listen to me. Trying so hard not to fight my grip on her wrists. Fighting that instinct a drowning person has to attack the person trying to save them. She was fighting the urge to fight me. I saw the conflict and the pain and would have done anything to make it stop. Those moments lasted an eternity and are forever burned into my mind. That wide eyed look of terror, half-crazed mixed with the trust of her daughter the nurse. They came in to intubate her and sedated her so they could do it.

When she was unconscious, I walked out passed the curtain because I couldn’t watch anymore. I had seen hundreds of intubations, had kept patients from pulling tubes and removing masks before, but this was different, this was my mother. One of the closest people in my life. I had kept my cool, remained calm, and held her down but then I went to the bathroom and sobbed. I will never forget that. Those were some of the hardest moments of my life and some of the few conscious moments she had left. It turned out that a cyst had swollen up on her vocal chord, which had been irritated when the breathing tube was removed. I had spent 20 minutes explaining to my mother that it was just anxiety, that she really could breathe as we waited for the anti-anxiety meds to kick in, as the cyst swelled and made it harder and harder for her to breathe. I was wrong, she trusted me, and I was wrong.

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Breaking Elizabeth: Part 1

Death as a Nurse

I have seen many people die in the hospital. It is a safe, controlled environment. People pass with little fanfare, sometimes with family, sometimes alone. We nurses follow our process, console the family if we can, ship the remains off to the morgue and refocus on the living. As a nurse, it becomes almost second nature to be unaffected by death. I remember the transition, from being heartbroken for my patients to focusing on the process and maintaining efficiency.

I learned to deal with horrible, gut-wrenchingly painful situations on a daily basis. I became invulnerable to the pain of my patients. Plenty of sympathy, and focus on doing the best I could, but keeping the empathy in check. I was able to leave the pain at the door when I left and found humor in morbid situations to process them. Too much, empathy is simply unsustainable in the hospital environment.

As a nurse, there is a wall you create to keep distance from your patients. Patients aren’t people, not really. We care for them, but keep our emotional distance so that if things go badly we can easily walk away unscathed. Certain situations can and will hit you unexpectedly, you will connect with a patient or a family member and experience that loss and pain as a regular person might, but it is rare. It should be rare, because those walls are built for your protection and are required to maintain your sanity. Wall maintenance is a constant, mostly unconscious effort. Sometimes your wall is too much of a barrier and has to be opened up, other times it isn’t built high enough and you sustain damage. It’s a delicate balance, that you must attain for sanity to be maintained.

Trying to meld the experience of the death of my mother with the previous closed off experiences of my patient’s deaths has been very difficult. I tried desperately to balance the concept of my mother as a patient, with the reality of my mother being my mother, and I failed miserably. I knew all too well, the dangers of the hospital, things get missed and people slip through the cracks. I was on guard as a nurse and a daughter. So afraid as a daughter, but seeing things from a removed nurses perspective and trying not to be too paranoid because of the extreme cases I’d seen. Visions of all the possible bad outcomes danced in my head and I did my best to balance that knowledge with the very real likelihood that the treatment would work fine and she would recover. It was a simple diverticulitis rupture in my relatively healthy 60 year old mother. There was no reason it should not have been a successful recovery. It’s a fairly standard treatment of surgery and antibiotics. We just had the worst possible luck and every time she should have recovered she didn’t. Abdominal infection that would not respond to treatment, cultures weren’t growing the bacteria we were fighting, her organs started shutting down one by one. Five weeks of hell for my mother, my family and myself before her body was giving out and we decided to take her off the life support and let her pass.

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The process left me broken in ways I didn’t think I could break.  I maintained so well while at the hospital, while fighting, planning and leading my family through the process. Recognizing when the time had come to stop fighting, and assuring that her death was as comfortable as possible.  But, watching her die, dealing with the loss and guilt that I felt was so painful. I was in over my head. I failed her, and it broke me. Broke my faith in medicine, my confidence in my abilities as a nurse, my confidence in my own strength. I had this perception of how I would handle the loss of someone I loved, I thought I would be strong and valiantly move forward, instead I was broken and weak and grieving. Obsessively reviewing the situation, staying awake at night cycling the lab values through my head, frantically trying to solve the situation, trying to find answers that would make no difference but unable to let it drop. I would see patients in situations similar to my mother’s and have momentary visual and audio flashbacks. I saw a patient with dusky skin, and flashed back to her face as it grayed, her lips and tongue as they turned black, heard her rasping, gasping, final breaths. I held myself together and didn’t let my coworkers see how bad it was. Even though I was having multiple flashbacks a day, I was seen as strong and doing well and didn’t want to lose that perception. Wouldn’t let people see my weakness.

Her death, my failure, tore my carefully maintained walls down, turned them into rubble. Working as a nurse became a daily onslaught of pain and suffering that I couldn’t seem to block out. I still had to do my job, but my soul was so vulnerable. I had to rebuild my walls from scratch, and over a year later, they are stronger but still vulnerable.

I’ve thought often over the last year over what it takes to break a person. I assume that anyone can be broken given the right set of events. Abdominal Sepsis was high on my list of ways I didn’t want to see someone I loved pass. It is a truly horrific way to go, and the pain and guilt I felt were tremendous and overwhelming for a while. This horrible experience broke pieces of me and affected my nurse side in ways I didn’t anticipate, but didn’t quite break me. I had my husband, family and friends for support… or so I thought.

No More Pain Rosie

I started my career as a nurse in the summer of 2011. Shortly after I started working the night shift in the hospital I experienced my first death. It’s a vivid memory for me even now and I’d like to share it. Sometimes the cliche is true, and there is something special about your first.

Rosie was a sweet older lady, late 70’s or early 80’s. She had been on our floor for a few days with a COPD (Chronic Obstructive Pulmonary Disease) exacerbation. Her lungs were in terrible shape as she had smoked for many years and she wore oxygen at home. She was in the hospital for breathing treatments and treatment of a possible pneumonia if i remember correctly. I met her husband and daughter as I came on shift, and introduced myself as Rosie’s night nurse. They were a pleasant family and the room had a relaxed atmosphere as they joked and told stories. After a few minutes of playful banter as I did my assessment on Rosie and listened to her lungs and heart beat, her family said they were taking off for the night and told Rosie to behave herself and not give the nurse too much grief. Her husband made sure to tell me that Rosie “Sun downed” when she was in the hospital and had been getting more confused as the evening wore on. Older people in new environments often get confused at night, it’s a very common temporary delirium.

I did my normal nursing routine and ran around administering medications, assessing my patients, tucking them into bed and charting  in the medical records. It was a little after midnight when my CNA found me and said that Rosie’s oxygen monitor was alarming and she was having a hard time breathing. I went in to check on her and she was more confused. I called respiratory therapy and they tried giving her another breathing treatment. It didn’t seem to be making much difference and I called the night doctor for the hospital and asked him to come by and see her. Her oxygen was getting lower and hadn’t shown any improvement with the treatments. We did some lab draws and I called the family to let them know that there had been a change in Rosie’s status.

The doctor came and spoke with the family when they arrived and said that we were getting to the end of what we could do without putting her on a breathing machine. He feared that if she went on a breathing machine with her lungs in the state that they were,  she would never come off. People can live in long term care facilities with ventilators, but the quality of life is lacking. The family said that she never wanted to live on a breathing machine and after a long and difficult discussion decided it would be Rosie’s last night.

I had never had to speak with a family about removing care before, though they didn’t know that. The doctor was there and was able to answer their questions better than I could, but they recognized me and knew that I cared about Rosie more than this new face. After the doctor left they asked me more questions and reaffirm what the doctor said. I was her nurse and I lead them through the process the best I could with second hand information from old instructors and the limited experience I had in school. I was so careful not to encourage or push them to remove or not to remove care. I remember the daughter asking what I would do in this situation, and replying that I couldn’t really answer that question. That it was important that they do what they thought best, and just know that there was no wrong decision, whatever they chose. We would either put her on a machine and potentially extend her life or take her off of oxygen and let her pass. I remember Rosie’s daughter and husband held hands and said they were ready to take off the oxygen.

I remember being surprised that they trusted me and my information, when I was questioning myself at every step and double and triple checking everything with my charge nurse out at the nursing station. I put my nurse face on and didn’t show the fear that gripped my heart.

I had worked in a long term care facility during nursing school and seen many patients who lived horrible lives, in beds, unable to care for themselves and suffering to live. I had no moral qualms with removing care and letting nature take it’s course….in theory. But, this wasn’t just an abstract thought anymore, this was Rosie, a sweet little lady, a real person. Yes, she was hardly arousable at this point, but she had a face and a family. A terrified family that was looking to me with desperation and fear in their eyes. They were about to go through a gut wrenchingly painful experience, one we knew they would never forget, and it was my job to put them through as little pain as possible.

I tried to warn them that she would turn blue and take gasping, gargling, agonal breaths at the end. I told them that even though it would look like she was suffering, patients who went in and out of that state reported that it was a euphoric experience. I explained that we would give her anti-anxiety medications and morphine to keep her from feeling “Air-Hungry,” that burning need to breathe.

We were as ready as we were going to get and we felt like a team, which was something I didn’t expect, but came to understand is a healthy way to go about removing care with a family. The husband was in shock to some extent, but he took to her bedside with a strength and bravery that was inspiring.  He sat down at the bedside, grabbed the hand of his barely conscious wife, and with a confident, but shaky voice said something along the lines of “Well Rosie, it’s been a hell of a ride, I’m so glad for the last 50 years, so glad to have had you in my life…” He sat in that chair holding her hand and started remembering stories out-loud. Stories about their wedding, about when their kids were young, buying their first house, a big fight when she threw a plate at him. The good the, bad and the lovely. He talked about an ugly painting of a long dead cat and how he had always hated it, how knew she had kept it just to spite him, and how he would never be able to get rid of it now. There were so many little remembrances, but I’ll never forget how he looked at his daughter, while holding his dying wife’s hand and said to his wife “We did good kid.”

They were ready, and he nodded to me to remove the oxygen. They were crying at this point and, holy hell, so was I. Those tears slid silently down my face and I didn’t wipe them off. I’ve never been a fan of crying and wasn’t sure at this point if it was professional, but it seemed right so I just let it happen. I’d been giving medicines through the IV while her husband was saying goodbye. The daughter had said her goodbyes intermittently while her dad was talking. They each held one of Rosie’s hands as her oxygen levels dropped.

Slow suffocation isn’t easy to watch, and I’d never seen it before, but I held my composure. Her lips turned black, Her tongue turned black, her eyes rolled up so only the whites showed, her skin turned grey and after a few minutes she started making those gasping, gurgling noises I’d read about. Her breaths started getting farther and farther apart until she stopped breathing. I put my stethoscope to her chest to listen for a pulse and she gasped again unexpectedly, nearly giving me a heart attack. I gave her another minute and listened again. It took 22 minutes for her to die after we removed the oxygen, and I was grateful it wasn’t hours.

I told her husband and daughter that she was gone. Her husband, not having to be strong for her anymore, broke down in earnest.  He stood up and looked down at his wife and said repeatedly while sobbing, “No more pain Rosie. No more pain. The pains all gone. No more pain.” He kissed her on the forehead and walked out of the room with his arm around his daughter.

I looked down at Rosie’s hand and saw a wedding band, I had a second of nostalgia wondering about their wedding day. I was recently married and I wondered if my husband and I would have a final moment like this. Then I remembered that they were leaving and they probably wanted the wedding band to go with them. Sending valuables with a body is a sure-fire way for them to go missing.

I ran out and asked Rosie’s daughter to wait while I grabbed the ring. She said she would help me (I wish in retrospect that I would have asked her to to wait outside). It took us a good 10 minutes to get the wedding band off. My stomach made a sick turning sensation when, with a squelching pop, we accidentally dislocated the finger before the band came loose. I remember the daughter saying that she never imagined she’d be prying the wedding band off of her mothers cold, dead finger. I know that would have scarred me and I felt horrible that she had experienced it.

Every time I’ve walked a family through removing care, I’ve thought of Rosie and her husband and her daughter and her kids who weren’t there to say goodbye. Every time I pack a body into a body bag I say to myself or out loud to the patient “No more pain Rosie. No more pain.” Certain events will stick out to you throughout your career as a nurse and this one certainly did for me.

When it came my turn to be on the family side of things, and take my mom off the breathing machine with my dad. I thought of Rosie’s husband again. I thought of how strong he was and I tried to be that strong. I tried to say those comforting words and remember the good times. My mind was in shock that this scene was playing out with my own lovely mother in that bed. I just cried. I held her hand, and stroked her hair and reassured her that we were going to be okay. That she had been a great mom and it was okay to let go. I thought of Rosie’s daughter too as I walked out of the room with my father and my husband, and was so glad my mom wasn’t wearing her wedding band.

Death is not beautiful, it’s not romantic, it’s completely tragic. No movie scene can prepare you for it, because in movies it’s always made up to be somehow beautiful. In reality, in the moments before you can fix your memory and make the beauty, it’s terrifying, gross, and literally painful. You hurt watching someone die, even if you barely knew them, it breaks a little piece of you, at least the first time. A little piece of the naivete that you carry, and a little piece of the illusion that you create to view the world falls away. There’s no way to anticipate or prepare for watching someone you love disappear and their body, all that you knew of them, turn into an ugly shell that you no longer want to see, touch, or be near. They are their and then they are not. It’s hard and it hurts, but you do survive, and you do go back in your memory and create beauty.