Friday morning, I am a little perturbed at how nervous I am as I dress for my first hospital visit in four days. I feel like a bad little girl for not having been there and done my duty. Lord knows I've called the nurses’ station morning, noon, and night to check on Eve. But no matter which nurse I talk to, it's always the same report.
“No change,” a flat voice responds, then silence. It makes no difference whether I sound cheerful or concerned, the conversation dies and I'm forced to hang up the phone. Afterward, I just want to scream, but the cats are never around when I need them.
As I watch Jennifer drive up, I warn myself not to secretly harbor any expectations for Eve's recovery. Unmet expectations will send me spiraling into self-pity. I cannot afford to go down again.
It's a good thing I talked to myself because, truly, there is no change in Eve's condition. She's still dead to the world. And so it goes. Saturday, Sunday, Monday, Tuesday, Wednesday. I keep missing the surgeon on his rounds, but he leaves me messages with the nurses. All are variations on the “nothing we can do but wait” theme.
Thursday morning, I arrive at the hospital earlier than usual for me. I want to see Eve before her two childhood friends, Liza and Karen, arrive from Chicago for a two-day visit.
As always, I take a deep breath before I enter Eve's ICU room. Then I bounce in with a cheerful “How are you doing, Eve? It's me, Donna.” As I bend down to kiss her, Eve's eyelids flutter open. She recognizes me and smiles. I'm stunned. I babble, “It's me. It's you.” Before I can call for a nurse, Eve's face twitches and she's gone again.
Am I nuts? Did I see what I saw? I back out of the room; one eye's on Eve, hoping it will happen again, the other eye is frantically searching for a nurse. Finally, I grab the attention of Eve's assigned searching for a nurse. Finally, I grab the attention of Eve's assigned second miracle I just witnessed.
I notice the nurse is looking at me like I'm not all there, an expression of impatient “patience” written all over her face. When I'm done spewing, she responds in that too-familiar flat tone. “Yes, Eve's been doing that for a couple of hours. We have a call in to the neurologist. You saw her twitch. That's a vasospasm. You know, like a little brain seizure. Try not to stimulate her, please.” The nurse whirls around and walks away.
If she had punched me in the stomach, it couldn't have hurt more. I can't bring myself to go in to see Eve. Instead, I walk out of ICU and proceed to the blissfully quiet waiting room. I've just got to hold it together for another couple of hours until Eve's friends arrive. Then I can run home—far away from this place—and stare at my lake for the rest of the day.
Liza and Karen finally arrive. Thankfully, I get involved in cushioning the blow of Eve's appearance to first-time visitors. The nurses willingly allow Eve's friends in. They even joke with them about Chicago. So, what am I, chopped liver? No, I tell myself. You're the reason Eve is in this state, and the nurses all know it and won't let you forget it. At least, that's how it feels to me.
We walk into Eve's room together. Karen and Liza are visibly shaken by the pallor of Eve's face. But they recover quickly. With more energy than I could muster today, they launch into a social banter, taking turns playing Eve's “role” in their usual three-way conversations. As if on cue, Eve's eyes open again. She smiles and makes a noise, twitches, and goes out again. Karen and Liza can barely contain their ecstasy. I want to cry.
I start to explain about overstimulation and the vasospasms, but then I shut up. Why should I put a damper on their enthusiasm? Let the nurses explain. Who knows? Maybe the two of them can make a psychic connection with Eve. A spontaneous healing? What difference does it make? Let the three of them enjoy each other's company their way. I say my good-byes . . . and tell Eve I'll see her on Saturday. As I open the door to leave, a nurse walks past me and begins chatting with them. Yeah, let her tell them.
On my way out, I run into the neurologist. He explains that the vasospasms, which are constrictions of the blood vessels, typically occur the second week after brain surgery. Luckily, Eve has not experienced any major seizures. If the vasospasms continue at this rate for another day, however, he will be forced to medicate her. Otherwise, Eve will fry her brain.
I know how stupefying seizure control medicine is. If Eve is sedated, then how will she ever come out of the coma, I ask.
The doctor just shakes his head. “We must control the spasms,” he says.
Surprisingly, Friday evening, I speak with a positively chatty ICU nurse on the phone. Earlier in the day, Eve had seemed to respond to her friends’ singing of Polish songs from their childhood. But then the doctor had ordered the start-up of the seizure control medicine. Eve is now resting comfortably and, predictably, unresponsive to the nurse's attempts to stimulate her.
For the next week, I continue my hospital pilgrimages and nighttime calls to ICU. If it's possible for a person to look deader than dead, that's Eve. On Saturday night, before I can call ICU, the nurses call me. In that forever-flat tone, the nurse announces that they are in the process of moving Eve to intermediate ICU.
“That's good news, isn't it?” I ask optimistically. “I was just there today. Did Eve come out of the coma this evening?”
“No, there is no change,” the nurse replies emphatically. “We need the ICU bed for someone else. Be sure to ask reception for the new room number. Also, your social services caseworker wants you to stop by her office on Monday.” Luckily, we're not in the same room because I want to punch the living daylights out of her.
Coincidentally, earlier today, Cass had unraveled the mystery of the nurses’ cold, unfeeling treatment of me. “They are ‘hanging the crepe,’” Cass had announced, obviously proud of her sleuthing and acquisition of this bit of hospital jargon.
“Who told you that?” I asked.
“This friend of mine who is an ER nurse. I ran into her while grocery shopping. I asked her why in the world these nurses were acting this way toward you, since neither one of us ever experienced anything like that with hospital nurses.”
“You can say that again,” I reply. “But what does it mean? I don't get it.”
“Oh, you know, ‘hanging the crepe,’ like a funeral parlor. The nurses don't want you to have any false hopes that Eve is going to come out of this.”
“Hey, Cass, thanks for the insight,” I say, my words dripping with sarcasm. Is she nuts? Oh, well, she must have had a tough day at work or something. Or maybe the whole world has gone mad.
The next day, Sunday, Eve's cousin Dr. Dave and his wife, Tricia, keep their promise to visit Eve. I've noticed over the past week that Eve's level of unconsciousness seems to vary. A couple of times Eve has actually half-opened her eyes, allowing me to pretend she's responding to my presence. Today is one of those good days.
Burly, outgoing, and intense, Dr. Dave announces his presence in the doorway of Eve's room. Unlike the gruff, impersonal terrorizer of my soul that I talked to two weeks ago, Dr. Dave has reverted to the charming teddy-bear man I remember meeting several years before.
“Hey, kiddo,” he says to the unconscious Eve in a warm baritone voice, “how's my little pal doing?” He turns to me. “And how are you doing, Donna? Are you taking care of yourself?”
“I'm doing better,” I say. “The bronchitis is finally gone. Say, Tricia, what's that?”
“Oh, I know how the nurses love to nibble. Thought I'd bring them a platter of dried fruit and nuts.” She adds cheerily, “We want to keep them happy, don't we?”
Over my dead body, I say to myself.
Dr. Dave is sitting on the bed with Eve. He calls out, “Say, Donna, hand me a couple of those mouth swabs. Tricia, give me that bottle of fruit juice you've been sipping on. We're going to give Eve's taste buds a little excitement. Here, Eve, let's clean your mouth up first. Open wide. That-a-girl.”
Even though Eve's eyes are still closed, I can feel an energy change in the room. Big Dr. Dave is a natural healer. I know Eve's responding to that voice.
I watch as Dr. Dave plunges a swab into the fruit juice, then coaxes Eve to open her mouth and suck on her taste treat. Over and over he does it, one swab at a time, until the bottle is empty. “There you go, Eve,” he kisses her cheek. “Wasn't that fun?”
I swear Eve nods yes.
He turns to me. “Don't you go trying that,” he cautions. “Do it wrong and she can aspirate it. Okay?”
He stands up. “Well, come on, Donna. Let's see what the cafeteria has for lunch. Our treat. Then we have to take off. See how close to home we can get tonight.”
Throughout the week, Eve continues her comatose state. That's what I call it, but the medical profession prefers the term “level of consciousness.” On that rating scale, Eve is mostly “2L,” meaning she is “lethargic” and responds to loud voices and prodding. To me, that sounds relatively hopeful.
So when I meet with the caseworker and neurologist that week, I am rather surprised by the “real” prognosis. During the meeting, I learn that the hospital is very concerned about Eve's insurance coverage. Coma or not, Eve will be discharged from the hospital in a week. If she is not out, I will be personally responsible for the hospital bill. The insurance company has spoken.
No, they say, I cannot take her home; it will be impossible for me to care for her 24/7.
According to the caseworker, they will arrange a meeting with Social Services in Green Bay. (Eve is now technically a resident of Brown County.) Social Services will show me how to “qualify” Eve for financial aid so that a nursing home will accept her. Left unsaid is that no nursing home in its right mind would take a comatose patient with only 12 days of extended care coverage, without a guarantee of state/federal aid.
Just in case I don't understand the need for a nursing home, the neurologist makes his point. Eve's brain waves are triphasic, which, as best as I understand, means that nothing is working right on a conscious level. The “good” news is that her metabolic functions are pretty normal. This fact alone makes the doctors think twice about actually calling her a “vegetable.”
In other words, since Eve can breathe, poop, and pee, all is not lost? Okay, we'll continue to ride the merry-go-round of professional care.
I dutifully keep my appointment with Social Services. There, I officially learn the answer to my burning question. Yes, Eve can keep the house. But, after reducing her assets to $2,000, there's no way she can maintain it. And, since she's virtually a vegetable, she wouldn't know how to maintain it. I do. Although I could put my share of the money into maintenance, I have no legal claim to this house.
After the meeting—and time-outs for my tears—the social worker escorts me into the hall. There she suggests—off the record—that I take whatever money I am legally entitled to right now and run as far and as fast as I can.
Good idea. But for now I must play my Scarlet O'Hara role and “think about that tomorrow.” Today I have an appointment with the fourth and final nursing home on my list, kindly furnished by the hospital caseworker.
By now, I'm a pro when it comes to answering the administrators’ question on how Eve will pay for continuing care. “We are ‘in process’ on Eve's application for financial aid,” I say. “Meanwhile, insurance will cover the first 12 days. Through the magic of credit cards, I will personally guarantee payment until the first of the year.” This statement is always accompanied by my big confident smile. And three for three administrators have all responded with silent, disbelieving stares that naïve creatures like me actually exist and function in modern society.
The fourth nursing home would be an oddity on the Chicago scene. It is truly family-owned. Though not ritzy by any standards, I note that it's clean and free of that institutional “smell.” Right off the bat, I like Faye, the admissions director, a forty-ish nurse with kind eyes. Joining our meeting is the financial director who, I quickly learn, is involved in her own stroke caregiving situation with an in-law.
Based on those financial discussions with the previous three nursing homes, I've recognized that the usual balance of power has shifted. I am not interviewing them. They are determining whether Eve and I, the crazy caregiver with a credit card, are worth the financial risk.
All of the nursing home administrators have been to the hospital to evaluate Eve. Not one of them has agreed with my amateur assessment that Eve will only require a nursing home until January 1, when I have determined that she will be healthy enough to participate in an in-hospital rehabilitation program. That is, no one agreed it was remotely possible until I met Nurse Faye.
“I saw Eve yesterday,” Faye says. “I believe there's a chance she could come out of this. I saw something in her eyes.”
“She opened her eyes for you?” I ask incredulously. “Eve hasn't opened her eyes for me in three days. Wow! Would your nursing home's rehab staff work with Eve to get her ready for the hospital rehab?”
Faye gives me a warm smile. “We'll certainly make that one of our goals. Yes.” She turns to the financial administrator. “I have a bed open. Will you approve her financially?”
“Presuming you have an excellent credit record,” she nods at me, “yes, Faye, I'll approve it.”
Who gets gushy about a nursing home? Me. I love the place. No, not the linoleum halls and the old-fashioned curtains, but the vibes. Even the nurse's aide, carrying a mop and pail, has a smile on her face. Though I could have chosen a closer nursing home in Door County, I am convinced that the energy and attitude of the staff will make the longer daily trip to Green Bay worth it for me and, I hope, for Eve.