She lays there… here eyes dancing between slightly open and closed… her breaths…much more pronounced now…it’s almost as if her whole body becomes a party to each deep inhale… her chest rises, but, so does her abdomen, but curiously not in harmony… her skin is sallow has taken on a waxy appearance…her cheeks are sunken…her lips…painfully dry but swallowing faded long ago.. her body is in the final act… she is actively dying… But, what do we do? Is she in pain? Can she hear? Is she scared?
This is where this becomes super personal for me… yes, I am a hospice nurse and hold the hand for many taking their last breaths But, the inspiration for this piece comes from the daughter… the daughter that had to make the agonizing decision to sign the DNR paperwork for my mom when her situation proved bleak.. the daughter who sat by her bedside for hours…watching her heart rate drop like droplets of water off of a winter’s icicle. Until finally, there were no more droplets to fall.. That daughter was me.
Yes, I was a nurse at the time. I knew what the lab values and readings meant. I could comprehend that my mom was dying in front of my own eyes, but, what could I do? For me, it was so much more about her. She had oxygenation issues and due to her illnesses. The nasal cannula was on, then when it was not enough, she had a bypap mask placed on. Even with that on, she had drifted in and out of lucidity. She mumbled words, she tried to open her eyes, but, since her body was failing she was unable to do so. I was so worried that she was scared. No one with absolute certainty can say what one sees or feels as they are dying. My greatest fear was that she was in fear or in pain. Now being a hospice nurse, I realize those are the worries of each person watching their loved ones pass.
“Ma’am, would like us to give her regular doses of Morphine and Ativan?” Of course I did and told them so. I was pulled to the side by an ill informed but well meaning friend of the family, “Routine Morphine and Ativan? Are you trying to kill her faster?” The question literally stopped me in my tracks. Kill her faster? No! How could anyone think that? Morphine is to help with her breathing and to help with any pain. But, if no one knows that and hasn’t been educated about it all they hear is Morphine: the big scary narcotic! It’s going to kill her sooner She’s going to die of an overdose! And, add Ativan – that’s that drug that makes people really tired and it’s for crazy people. Why is she giving both of them? The combination of the two with them – oh my Goodness that is going to just send her to her grave two minutes faster.
But, when I had to explain, through my tears and as my heart literally hurt that what I was doing seemed surreal. I was defending my decision. was that what I was doing was to make my mom feel comfortable and not to feel pain or anxiety during her final moments on this earth. The amount that is given of both is so small that it does not ever cause death but nor does it prolong suffering. People don’t understand that. In those moments those final moments I don’t know about you, but, I don’t want to be scared. I don’t want to be in pain. If it’s kind of like an hour glass and our lives are like those little grains of sand and it’s just kind of dripping out I’d much rather the sand it’s dripping out drip out in a smooth non-scary and non-painful fashion rather than abrupt and painful.
What happens to someone when they pass away is not completely known and understood. With medications and the support of those around them, the hope is that fear and anxiety is minimized. However, what is far more traumatic is to have to make the DNR decision in your own parent’s life. Did I make the right decisions? Could I have done differently?different but could we have done differently?
She wasn’t awake for most of that night. I held her hand and stroked her hair. Occasionally, there was a moan, a twitch and I would catch myself thinking that maybe I made the wrong decision. But, I could hear her saying that she never wanted any tubes down her throat. Funny, those words were easy for her to say but, as wishes needing to be upheld, they were harrowing.
With so many changes happening in those final moments, some happen so quickly we miss them, but, some scream out. My mom, unfortunately, got the rattle. That harrowing sound that sometimes lives in nightmares. As a nurse, I know that it’s not painful or distressing for the patient. It’s really simple, it’s just secretions that are trapped in the upper airway because the patient is too weak to be able to swallow them down. That’s all that it is. But, as a human being, that noise causes the hairs on neck to stand up. Try as I might, even today, when I am at a death, it still sends chills down my spine. But, I have to stop and take a minute and bring myself back to the place where I know that the patient is not in pain. Knowing what I know as a healthcare professional, I know that the only thing that truly works is turning in repositioning. Sure, there are medications that help just a tiny bit and we give them because in those last moments any little flicker of hope helps. But, that person is not in pain and not in distress. And as my mom was dying, I had to constantly remind myself of that. Because, staring into the face of the woman call what is the single most influential woman in my life, hearing that noise made me want to be out of my skin and everything and anything I could to try and stop it.
Those final moments of someone’s life, for which there are simply no words to describe the rainbow of emotions that come flooding forth. And it isn’t by the patient – It’s those holding vigil. At least for me, it was like what you see in the movies. It was like what you see in the movies. Life, in a series of frames, almost flashed in front of my eyes. Took my mom up about 12 hours to pass away. Those 12 hours were filled with laughter and tears anger frustration and sadness and bitterness and giggles. I thought about the time we scared my mom, who said she wasn’t scared of anything, with a furry fake mouse and she shrieked louder than our ears could handle. Or when she woke me up, sobbing, barely able to utter the words that her own mom had just died. And you know what? Those were all perfectly fine emotions to deal. There are no rules about the last moments of someone’s life. What you feel is your own. There is nothing that says that you can’t couple the seating pain of loss with the belly laughter of a memory that warms your heart. It’s your own experience.
At about 6 am, the doctor came in and asked if the bypap should come off. As it came off, my mom’s full face came into view. At that moment, I could tell she was already gone. The breaths she was taking were just reactions of her body. The paleness of her skin, the greatness of her lips – she was gone. I couldn’t help but continue to whisper into her ear because I couldn’t bear her being anything but peaceful.
The breaths stopped after a few short moments and she was officially gone.
My dear sweet patients…. I know how you and your families feel. I can laugh with your smiles and cry with your tears.
As I tell you when we first meet, this is a journey that we truly walk together.