I Understand

“Helen,” she said, as she wiped away her tears, “I hope you never have to experience this. I hope you never have to feel what it feels like to be making a decision that could be ending someone’s life.” Her mom had just literally passed, the room still felt like full of her presence. My smile was soft and I held her hand, while she poured out her grief. What she didn’t know is that the feeling she was talking about.. that feeling of being the cruelest decision maker… I know it. Far too well. Not as a nurse, but, more profoundly as a daughter.

My parents were of the moment. They didn’t believe in life insurance. They didn’t believe in wills and estates. It was the mixture of a deeply held Greek belief that you just don’t talk about those things and the idea that who cares – I will be dead, kind of philosophy. For all of my Greekness, that’s not a belief I hold to.

My dad passed many years ago. He was 57. Never smoked, didn’t eat meat – hell, he didn’t even drink coffee. He started getting headaches. He started acting strange. By the time he finally went to the doctor and she sent him for an MRI, his malignant brain tumor was the size of a grapefruit. Glioblastoma stage 4. He lived a year. I was about 23 or so – not a nurse yet. I didn’t feel it was my place to talk to my parents about decisions and code status. With my mom, however, everything was different.

My mom’s health was never great. To be honest, it was a surprise that my dad passed first. She never took care of herself. Her health fell very low on the list of priorities. I remember distinctly walking into her home one day and she had cyanotic lips. I ran to a drug store and bought a pulse ox. I should rewind and let you in on the fact that I was in my mid 30s and had been a nurse for years. Her saturation was in the 70s and frantic, I found the sleep apnea machine that she had but was covered in a layer of dust. She didn’t even want to put it on. She. Was. Stubborn.

My brothers and I tried to talk to her about drafting a will. Time would later show that she passed about a year later. That talk went so well that we all left in a rage. The year was spent with her in and out of multiple medical facilities. She refused to have any of the talks. Maybe it was hopeful optimism on her past thinking she would magically get better. That talk of the negative would make it become real. The only information I could ever gather was when she would off the cuff say “I don’t ever want them sticking any damn tubes down my throat.” That’s it.

The night she passed, I cannot say that I was anticipating it. But, life is so good at throwing us those curveballs laced in lessons. She was in an Acute care rehabilitation facility. When my son and I came for our daily visit, she mentioned something about her oxygen dropping the night before. But, I didn’t want to be -that- nurse so, we just hung out for a while. She was laughing and joking. Thanksgiving was about a week away and we were hopeful she would be home. Easter had been spent with her in the hospital and she kept ranting how she didn’t want to spend another holiday as a patient. Well, the cruelest irony is that she got her wish, but, not at all in the way she anticipated.

The timeline for that upcoming evening and night has moments of blazing clarity and others that are almost like looking through a pair of fuzzy glasses. The first call came around 7pm. The nurse stated that they were having issues with her pulse ox. It was in the 70s, but they couldn’t understand because she was still coherent. Triaging in my head, I asked if they tried the pulse ox on the ears. What were her other vitals? Chest X-ray? Labs? They let me speak with her and she sounded sleepy. I was a single mom at that time, so, I gathered my son and headed over.

Even as I walked into her room that night, I did not think I would walk out an orphan. She was still not breathing correctly. But, I kept thinking some Lasix and steroids – maybe an antibiotic and she would be ok. Maybe I had that same thought of not thinking the bad would make it not come. Not so.

The Lasix has been given. So had the steroids and antibiotics. She was on a bipap and yet not at all improving. I talked with her a bit. I think she sensed something because she looked up at me and asked me if she was dying. Talk about searing pain. I looked down at her and told her that I honestly didn’t know. She started giving me her blessing… telling me that no matter where life took me and whatever decisions I made, she would be looking down and bestowing her blessing. My tears fell down onto hers. She was coming to terms.

Apparently, earlier in the day, the nurse had come in talking about the problems the night before. My mom refused to sign a form but stated she never wanted tubes down her throat. Hours later, the doctor took me aside and explained what I dreaded hearing. She would need intubated or she would die. Somewhere there was a shunt. They didn’t know how or why but without a tube, she would die. He explained that they could make her comfortable. He explained that because of all of her other issues, if we put a tube that she might never come off of it. The idea of my mom waking up with a tube, knowing she made this one thing clear, crushed me.

I have never felt my hand shake harder. My heart was pounding so loudly I heard it in my ears. That bright pink form on an old brown clipboard with a half broken clip. The pen felt like it was covered in razors in my hands. I do not honestly remember how many times I tried to sign. The blob of black ink on the form where my signature was required grew larger. My eyes were sealed tight and my teeth clenched as I finally signed. Comfort measures. No tubes.

My mom did pass that night. I was lucky enough to be there. I held her hand and whispered how much I loved her as she took one last breath.

After she passed, a few of the nurses came to comfort me. They told me how impressed they were with my decision. So many people verbalize how they don’t want certain things but, when the moment of crisis hits, families find it hard to follow through. I couldn’t live with myself if I had not followed through. That disappointment was something I don’t think I could live with. What I did not think of at the time was what I would have to live with – the feeling of responsibility of ending my mom’s life.

It crosses my mind daily. 7 years later and I still cry about it like I am attempting to find the courage to sign the form. Therapy hasn’t made it go away, but, it has dulled the ache a bit.

Maybe I am a hospice nurse because I know that pain.

But, I do know the pain.

I know the feeling.

The pain.

The guilt.

The fear.

The confusion.

The agony.

I understand, my dears.

I might not always tell you..

But,

I understand…..