Yesterday my patient’s skin peeled and pulled away from her fingers and toes. In the past week she had gained twenty pounds from water retention. The swelling stretched her skin until it radiated a watery sheen. As the swelling began to go down, the skin rebounded, dried, and flaked. I took off her anti-embolism hose and her sequential compression devices and released the smell of dirty gym socks. She was depressed, withdrawn, un-communicative, because a surgery she expected to earn her a brief hospitalization had incurred Murphy’s Law. She entered her fifth week in ICU with a tracheostomy and a surgically inserted feeding tube. I understood her frustration.

After trach care, catheter care, blood sugar checks, and adjusting IV drugs to a prescribed blood pressure parameter, I wanted to do something for her, not to her. I warmed up lotion and lavished her hands with it. Every finger got special attention. I remembered how pressure to my fingers during stress reducing massages seemed to release the tension in every muscle of my body.

I dialogued in an effort to break her silence. “You know why I’m doing this don’t you? If my mother were in your place, I would want to come in for a visit and know someone had cared enough to do it.” I moved to her legs and feet. I washed them warm wipes, slipped the disposable cloths between each toe. I slathered lotion on legs where lines of dryness mapped her skin in white. She grimaced when I rubbed lotion into her right ankle. “That really hurts.” No response. “What about the left one?” She actually nodded in response to my question.

Then for a dignified, mature woman, whose best friend told me she was meticulous about her appearance, disaster struck. She passed an enormous bowel movement, something the general surgeon would celebrate. It added to the patient’s humiliation and loss of her sense of self. How could I convince this stoic, regal woman that just this once, normal human bodily function meant she was one step closer to getting well.

I gathered cleaning supplies, linens, and another set of hands. “Now I’m going to bore you with some stories.” I warned. Stool puddled between the woman’s legs and housed itself in any crevice it could find. I had used stories before with a young male patient to pass the time when he found himself in a similar situation.

I talked about my grandmother, widowed after World War I, she raised four children on her own. “My grandmother worked to provide for her girls. When I knew her, she never was in anything but a skirt, her strawberry white hair in a chignon, and her nails long and perfectly polished.”  I think grandmother resonated with my patient. I could tell she was listening. My helper and I started to mop and wipe and clean and contain the flood of excrement.

“For supper one night, the family enjoyed a roast, probably a rarity in that day. The oldest sister cut and served while the others ate. Before she could sit down to eat, one sister was back for seconds. The eldest picked up the roast and threw it at the offender.  All my grand-mother could say was: ‘Girls. Girls.’” What I was trying to tell her was that we are all human, subject to human frailties and that this moment would pass. She smiled.

A week before that I cared for an octogenarian who lived alone. He began to hallucinate and provided intricate details of what he saw. He realized he was seeing things. The anxiety left him restless. He hollered for someone to come and kept punching the call light. I knew his daughter was coming. I pulled up a stool and sat beside him. “Tell me what you see.”

“Right now I see you encased in a sheet of water. It’s all around you.”

“I believe that’s what you see.” I held out my hand, not to deny him, but to share what I saw.

“I know there’s no rain, but I see it.”

“What else do you see?”

For the next forty minutes he created what I interpreted as his view of Heaven. He detailed with the precision of an engineer, a lift. It had a broad platform and inched upward toward Infinity. He talked about pulleys and cogs and people. “You were there too.”

He looked straight at me when he said this.

I shuddered like I had has a child, when other children who noticed me shake, said: “A rabbit just ran over your grave.”

In all the time he spoke his visions, I just listened and wondered what it all meant. Then the man uttered the words that explained it all.

“I think I’m dying.”

I sat with the man until his daughter arrived.

It is a cliché to refer to long standing definitions, but Florence Nightingale defined nursing as “the act of utilizing the environment of the patient to assist him in his recovery.” (1860) I added the italics. Our patients come to inhabit bland, functional rooms, filled with outlets, equipment, monitors, electric beds, television, climate control, negative pressure, and, if they are lucky, a window. But they also come with an inner environment which constructs the essence of who they are. The greatest privilege in nursing is being allowed into that most private place. Entering there may be one of the most important parts of a patient’s survival. The ability to gain entry is one element of the unquantifiable art of nursing.

After many years of nursing I celebrate every day I go to work and learn something new that improves my practice: a new drug, a new procedure, or some new machine. Recently nothing has taught me more than just being the patient’s wife. My husband, Dalt, injured his wrist cutting low hanging branches from a hackberry tree. When the chain saw broke through the branch, it dropped, yanked his wrist to an awkward angle, and triggered an autoimmune response that knocked my husband off his feet. The joints in his wrists and fingers looked like they had been hit with a baseball bat. His knuckles had not one wrinkle in them. The skin on his fingers, pulled tight from the swelling, turned his fingers bone white from the poor circulation. His usually active days became waking hours of agony. And I transformed from a competent health care provider into a worried, decompensating wreck.

Dalt went to see a hand specialist, had some x-rays, and got a prescription for pain pills. A few days after the “incident,” Dalt woke up in so much pain he couldn’t walk. I maneuvered him to the car and rushed to the ER. I happened to slip his pain pills into my purse. Because of his marked weakness, the doctor ran tests to see if Dalt had stroked. I knew he hadn’t, but didn’t want to be a “bad” family member. You know what I mean. The kind of person who micromanages the doctors, the nurses, the lab techs, even housekeeping. So I sat and waited and watched my husband moan with pain. I confess. I gave him one of his pain pills. In an hour he was 100% better. When the doctor came in to tell him she had scheduled an MRI of his head, Dalt declined. “I’m not having a stroke, I was just in so much pain.” I took him home.

Prior to this I assessed the silent symptoms of pain the way I learned in school: rapid heart rate, shallow breathing, a furrowed brow, even nausea. When Dalt was in pain, he aged ten years. Wrinkles impressed his usually smooth cheeks. He exhaled long, deep, gasping sighs when he slept. He wasn’t nauseated; he had no interest in eating. When he walked around the house, he held both arms close to his body, guarding his hands from anything that might accidentally hit them. I didn’t know how to help.

It took over a month to get scheduled for surgery to fuse Dalt’s wrist bone. The doctor promised pain relief with the procedure. We would have opted for the next day, but pre-op testing, booking an operating room, and allowing for the doctor’s schedule took time. Waiting. Something I never learned to do with grace, especially when someone I loved suffered. Watching him struggle through a day of pain wore me down as much as it did him. A man with strong faith, I sometimes worried about going to work and leaving him alone. That’s how much the pain changed him.

Dalt is a young 73, but not without health issues. I viewed the surgery as a panacea, a game changer, a pain ender. But on the day of surgery, the nurse in me kicked in and the “what-ifs” took over. Count on an experienced nurse to anticipate the worst case scenario. This was a post-Joan Rivers day where an out-patient procedure turned into a tragedy. I followed Dalt’s gurney down the hall to the operating room, then detoured to the waiting room. I let him see the tears, my fear, and told him to hurry back.

I knew this procedure was considered relatively minor, no intrusion on the heart, the abdomen, or the lungs. But this was my husband. It required general anesthesia. What may have been the most minor surgery on the schedule that day was most major to me. I checked the information board where computer graphics symbolized when the surgery started, with a knife, when the surgeon was closing, with cross stitches, and when the patient went to recovery, with a Band-Aid. Every time the phone rang in the waiting room, I strained to hear. The volunteer called a name I didn’t recognize. It was my married name; for most things I still use my maiden name. It finally dawned on me that it was my turn to rush to the desk and pick up the phone. Another hour to go a young woman’s voice told me.

It’s been done in movies and on television, the every five minute look at the clock. That’s how it happens. Every five minutes I sighed with a sound reminiscent of his pain and asked myself “Are we there yet? When would it be over?” Overhead I heard one Code Blue called, heard the room number, and recognized which ICU it was. Not in the OR. Thank God. One Code Red. Fire in the lab. I didn’t care. One Adult Rapid Response. Well I knew that wasn’t Dalt, and I was upright. We were both safe.

I didn’t want to go to the bathroom for fear of missing the precious few minutes I knew the doctor would grant me after surgery. The door where I watched different doctors emerge, doctors with whom I had worked for years, opened and Dalt’s surgeon, young enough to be my daughter, came out. I liked her no-nonsense provision of information, post-procedure x-rays included.

It required more waiting before I saw Dalt. A bed assignment had to be made, report called to the receiving nurse. I wandered up to a room that looked haunted by emptiness. Then his bed rolled in and he was there talking, thirsty, complaining of pain, but okay. I helped him with his first sip of water and watched him fumble with the PCA button to give himself some medication. I didn’t think hand surgery would be so painful. Dalt measured time in hours between pain pills and minutes between pushing the PCA. I measured it in the days it would be until I felt I could help him feel better.

The days of the call light are gone. Now patients call their nurses on hospital cell phones. “I’m in the middle of something. I’ll be there when I’m through.” The wife simmered; the nurse boiled. The first time it took twenty minutes for the nurse to come. One time she was an hour late with pain medication. I wanted insta-care for my husband. And all I could do was sit and feel totally useless.

Dalt is home now. For the next ten days he has to keep his hand above his elbow. When he’s up and about, he maintains this position wearing a sling. A new lesson begins. I never appreciated how many things I do that require two hands. Slicing a banana, peeling open a yogurt container, buttoning shorts, tying shoes, unscrewing a bottle, using the computer. I no longer take these things for granted. I get to do them for Dalt. Finally I am useful! He’s getting cabin fever from his confinement, not just because he’s stuck inside, but because when he’s healthy, he’s always busy.

Better days are coming. Because of Dalt I’ll go back to work a better nurse. I’ll remember that if you’re the patient’s wife, lover, son, daughter, father, whoever, there is only one patient. That from your point of view any surgery is the most major surgery. That pain is real and urgent and needs to be addressed quickly. That demanding families are a product of stress, love, disruption of everyday living, and fear of an unknown future. I promise I’ll remember what it feels like to be “just the patient’s wife.”
 

Why does ED happen