Emily Zeno Yeast ’13Posted: July 8, 2013
Alma is refusing debridement. She’s refusing hospice care. She thinks hospice is akin to suicide. Yesterday the chaplain told her that’s not the case, in God’s eyes. I don’t know what she thinks about that. Maybe she doesn’t trust him like she doesn’t trust the doctors. They tried to explain to her that all they can offer – debridement of her wounds in the OR, dialysis, blood transfusions – won’t really make a difference. But she takes this to mean they’ve given up on her, that they don’t want to help her. Whatever she believes, whatever treatment she accepts or refuses, she has a few months, maybe. She doesn’t eat anymore.
Last night she didn’t look like she had a few months. Her face was pale, green even, her skin paper-thin, dull. I checked on her all night long, peeking in on her, holding my own breath until I saw hers, the uneven rise and fall of her chest. Like checking on a new baby. I parked myself and my computer outside of her door so I could hear her every sigh, every “Dios mio” and “No puedo.”
“Alma,” I would say, “what’s the matter?” She would close her eyes, her brow furrowed and frowning, shrug her plump shoulders, slowly shaking her head back and forth. “Alma, are you in pain?”
Sometimes she would say yes, and I would gratefully give her dilaudid. Most of the time she would say, “No, not so much.”
“Then what’s wrong, Alma?”
I feel panic, because I don’t have anything to give for fear. I don’t know what to do. I want to hold her hand. I touch her, trying to convey what I can’t say. My presence will be something, maybe. She doesn’t respond to my touch. Or when she does, she recoils in pain.
Because she hurts everywhere. I reposition her on the bed, try to make her more comfortable. When we boost her she screams. (The nurse who helps me whispers outside the room, “She smells like death.” Bullshit. I’ve been caring for Alma for months; I know her smell. She smells the same. And death doesn’t have a smell. I think.) I move the remote control to get to her IV to start the blood transfusion, I lay the remote on her thigh, she yelps in pain. She shows me her breast, says, “What is this?” I’ve never seen the beginning stages of calciphylaxis – only the end, the gaping wounds, bone exposed, all raw flesh and pus. I go look at photos on Up-to-Date and, yes, it’s a new area of calciphylaxis. I add it to her skin assessment. She now has twelve documented wounds. These wounds, all over her body – this is what she will die from. This new one hurts just a little now.
The night takes on a rhythm. “Dios mio.” Dilaudid. Blood pressure 79/25. I try a manual BP, with only her right forearm to use, but I hear nothing. Since it’s in hand, lest it be totally useless, I apply the stethoscope to her chest and hear rhonchi. This is new. Zosyn for three hours. BP 135/45. “No puedo.” Boost, cry of pain. BP 85/32. Hang the next unit of blood. “Ay ay ay.” Dilaudid. Sleep, but fitful. 12 breaths per minute. Or 10?
“Alma, what’s wrong?”
“I’m right here Alma, you’re safe.” (Such weak words, and untrue; I’m embarrassed to repeat them now. And presumptuous, to think that my presence would bring comfort!)
BP 155/82. That can’t be right. 79/32. That’s more like it. She awakens, vomiting, Zofran, a wet cloth to her face. Zosyn again, three hours. It’s dawn. She’s moaning. “Alma, what is it?” She just shakes her head.
“Alma, let me help you. What can I do?” The shrug. I pat her arm – pat her arm! – the only part of her I’m confident I won’t hurt. She winces. “I’m sorry, Alma.”
All night I look at her, every bit of her. I still remember. Her fingernails are red, less the one we frantically cleaned with acetone the other day when we couldn’t get an oxygen sat reading higher than 62%. We finally got it on her big toe, right foot. She doesn’t have any toes on her left foot. Her right toenails are also painted red. Her hair has been dyed. I stand there, looking at the root growth, trying to gauge when it was last dyed. A couple inches. It had to have been prior to this most recent admission. She dyes her hair. She paints her nails. What is she like? Was she once proud? Feisty? Throwing her hips around? Or has she always been like this, soft and resigned? I’ve been wishing she would fight for months, but now I see it wouldn’t have mattered.
This is the end of life. It’s not beautiful. It’s not romantic. It’s not peaceful. This is not what we want for her. We want her to have some solace, some comfort, some rest. But this is not altruism that we feel. We don’t want these things for her alone; it’s for us, too. This is painful to witness. Because don’t have tools for this. Sure, we have dilaudid, we have Zofran. We can hang the quilt above her door, give her some small comfort, stop taking vital signs – even the blood pressure cuff hurts her! We can speak in hushed tones, bring her family coffee (if only there were family here), rub shoulders in sympathy, call the chaplain at just the right time. These things we know how to do. But we are not competent in suffering. The doctors want to fix this; they can’t. The nurses want to comfort; we can’t. There are places beyond comfort. All we can do is witness. All night long, night after long night.
Emily Zeno Yeast graduates this summer from Yale’s nurse-midwifery program. In her prior career she worked with addicted, mentally ill, and incarcerated pregnant and parenting mothers where she observed that childbirth can be a powerful and transformative experience for a woman if she is afforded the opportunity to be an active participant in her own health care; it was this observation that drew her to midwifery. While at Yale she began working as a nurse on an inpatient nephrology unit and was surprised and delighted to discover that she also has a deep love for the profession of nursing.