With careful planning, the five-hour trip to Chicago goes without a hitch, even with three stops along the way to ensure Eve's continence. Thank you, State of Wisconsin, for maintaining such pristine public rest rooms.
When we arrive at the entrance to the rehabilitation hospital, Cass is there to greet us. When she opens Eve's car door, both Cass and I learn that Eve's first road trip has made her carsick. I think Cass was expecting a hug instead.
Cass races into the hospital to find someone to help Eve in and, I hope, take her to a room, while I monkey around with the admissions process. At the end of the intake interview, the caseworker, Lois, asks me what my rehabilitation goals are for Eve.
I resist the urge to quip, “Well, I want you to fix her, duh.” Instead, I say, “Please teach her to eat, remove that feeding tube, and help her regain continence.” In my naïveté, I expect that these goals are pretty obvious and will be accomplished with the institutional “left hand” while the “right hand” is doing the tricky stuff like teaching Eve how to bathe, talk, walk, and plan a daily routine.
After the hour interview, I set out to find Cass who, I presume, is with Eve in her room. When I reach the room, I notice a warning sign posted on the door: “Caution. Occupant has a highly contagious disease.”
Oh, my God. I burst into the room, wondering what exotic disease Eve picked up during the car ride. Eve's in bed, sleeping, and Cass is reading a magazine. I note that the curtain is drawn, splitting off Eve's half of the room.
“What's with Eve?” I whisper, as I'm pointing at the sign. “I thought she was just carsick.”
“Nothing's wrong with Eve,” Cass responds. “But I don't believe her roommate's in the pink, as they say.”
Quickly, my temper emerges and races to catch up with my pulse. “Eve's roommate has a contagious disease? Are these people blanking nuts? Don't I have enough of a mess?” My whisper is turning into a series of squeaks, and Cass is trying unsuccessfully to clamp a hand over my mouth.
“Look, Donna, I'm sure the nurses’ station will be able to explain. Why don't you ask?” Then she pauses. “On second thought, let me do the asking. I'm going with you. Please stay calm, for me?”
While standing at the nurses’ station, listening to Cass blah-blahblah with the nurse, I have one of those premonitions that starts as a tummy rumble. This hospital is not very customer-oriented. It appears no amount of polite complaining is going to change the minds of a staff that has only one hour left until shift change.
On the way back to Eve's room, I fake a calm attitude. “So,” I say, “let me restate what I heard the nurse tell you. Eve's roommate has uncontrollable diarrhea, which has something highly contagious in it, but they don't know what it is. However, as soon as her son or daughter gets here, which may be tomorrow, the woman will be taken to a regular hospital to—well, you tell me, Cass—to die or something? Meanwhile, she's Eve's roommate. There are no other beds available. Did you get a good look at that staff? Can't you just picture them all drawing straws to see who enters this room at their own risk?” Finally, I sputter to a halt.
Cass shrugs and gives me one of those “you're dramatizing, Donna, stop it” looks. Her nonchalance sends me careening toward rage.
Thankfully, a sudden insight stops me from lashing out. This rehab hospital stay is Cass's baby, not mine. She'll be handling more of the day-to-day than I will. She's Eve's friend, too. Oh, man, I'm going to have to be diplomatic here, a trait no one ever accuses me of possessing.
“Okay, Cass. I'll take it easy. It's way beyond my control anyway. Let's go out for an early dinner somewhere in the neighborhood. Then we can sit with Eve till the end of visiting hours. Hope she wakes up for a little while.”
And thus begins Eve's much-prayed-for rehabilitation program. As “they” say, be careful what you pray for. On my three-day-a-week visits, I find myself in big-city-hospital culture shock more often than not. It's so impersonal. So into assembly-line technique. So very uninspiring. On my long treks back to Door County, I spend my daydream time wondering how in the world these rehab techniques will work in the home situation. But then, maybe they want me to think this brain rehab is the sole domain of the professionals. It sure seems that way.
Overshadowing my negative gut-level reaction to the environment is the incredible parade of friends who regularly visit Eve. On the days I'm not there, Penny and Cass are, without fail. Cass even takes home Eve's laundry. Penny and Cass bring Eve to their homes on alternating Sundays for a family-style dinner.
Liza also visits several times, bringing fancy ice cream, dominoes, and Yahtzee. I often hear how three or four of Eve's assorted friends have stayed the entire evening to talk and play games with her. Even our former Naperville hairdresser visits one night, toting a portable haircut kit. With his usual magic touch, he transforms Eve's postoperation hair disaster into a beautiful “do.” Sometimes, relatives of Eve's friends visit. For instance, Penny's sister stops by several times after work. And Cass's nephew brings his dog on “pet” day. Judging from the light returning to Eve's eyes, the Chicago rehabilitation period is an astounding success, thanks to her friends.
Clinically speaking, the experience is disappointing—verging on disastrous, for me. I'm having nightmares as I count the days until I will be the sole caregiver. Oh, sure, the hospital therapists teach us how to manage the shower-for-two, how to monitor her calorie count, climbing stairs, getting in a car, and some other practicalities. But I am terribly distressed by their refusal to remove the feeding tube. They say it's because they can't be sure I can manage to persuade Eve to eat 2,000 calories a day at home. I say they're protecting themselves from whatever.
Eve's limited continence training, which was begun at the nursing home, completely unravels at the hospital. No matter how much I beg, scream, and plead, all the way up the “nursing chain” to the director, the staff never institutes a daily potty-training routine. More than once, I arrive from Wisconsin to find Eve sitting in a mess in the middle of a therapy session. I guess the therapists don't consider it their job to take Eve to the bathroom during sessions and, of course, the nurses are never around to help.
By the time Eve is discharged, my emotional reactions are a mix of disgruntled dismay with the hospital and eternal gratitude to Eve's friends.
On the last day, Eve's caseworker, who now makes it a habit to avoid me, stops in Eve's room to talk. She begins, “This is highly unusual, but Eve's insurance caseworker called me yesterday. You're to contact NEW. That's the Northeast Wisconsin Curative Rehabilitation Center. The insurance company has worked out a plan with NEW for Eve's continued rehab, which you may find very interesting. Call this number tomorrow to set up an appointment with their admissions director.” She hands me a card.
After our chat, I resume packing up Eve's room. Next thing I know, an orderly comes waltzing in with a wheelchair.
Ignoring my presence, he says to Eve, “Here's the wheelchair you ordered for home care. We've put the charge on your hospital bill.”
“Whoa, not so fast,” I halt him. “Wait just a second.” Words, smoke, and, perhaps, fire are spewing from my mouth. “You're saying this wheelchair was ordered by her? A person with brain damage? Why was it never discussed with me? We live in a home, not a hospital with 10-foot-wide hallways. Who ‘sold’ her this bill of goods?”
He shakes his head. “Uh, I don't know, lady. I'm just delivering it.”
“Well, undeliver it, and hand me that clipboard so I can write ‘Refused’ in real big letters.”
Just then the caseworker makes another appearance. We review the situation together.
“Look,” I say, “when Eve left the nursing home she was walking with my assistance. No walker, no wheelchair. The nurses’ aides explained to me that the therapist didn't want Eve dependent on walking aids. Now you're telling me she needs a wheelchair to negotiate the house after a month in a fancy rehabilitation hospital?
“Anyway, according to this bill, it's going to cost me big bucks to boot. No way. Back where I come from—rural Wisconsin—we have a program that will lend us a free wheelchair, but only if we need one, which we don't. Thank you, but we're going home without a wheelchair or a walker, or any other crutches. Sheesh.”
The caseworker simply nods agreeably, no doubt counting the moments until Eve is discharged and I go away.
“So, that's rehab Chicago-style,” I mumble to Eve as I roll her out to the car. “All I can say is, I'm glad your friends visited.” Eve smiles and nods . . . and then we're on our way back.