by Jane Heller
I’ve brought my laptop to waiting rooms and tried to write. Can’t do it.
I’ve tried browsing the Internet in search of news items with catchy headlines, but they’re no help either.
What’s the best way to kill time, in my experience? Either ask a friend or family member to sit with you while you wait and help take your mind off the fact that you’re sick with worry, or bond with the other people in the waiting room who are just as sick with worry as you are.
I’ve done both, and they’re equally effective time killers.
Michael’s first surgery last year was a “resection,” which means that a surgeon cuts away the inflamed portions of his intestines and reattaches the healthy ends. I brought along my friend Melodie to wait with me. She’s a writer of mystery novels and short stories, so her imagination works overtime as mine does, and we spent a couple of hours cooking up a plot involving the family of six on the other side of the room—from names for their characters to which ones were murder suspects. I’m sure the people sitting next to us thought we were nuts, but they seemed riveted by every word.
Speaking of the people sitting next to us, they were so riveted that when Michael’s surgeon entered the waiting room and sat down with us, they leaned in so they wouldn’t miss his report.
“Michael’s out of surgery,” said the doctor. “It was more difficult than I expected, because he’s had so many previous resections, but we cut away all the scar tissue and he should do fine.”
“How long will he have to stay in the hospital?” I asked.
“About a week if all goes well,” he said.
“What complications might there be?” I asked.
“There’s always a risk of infection with abdominal surgery,” said the doctor, “but we’re minimizing that by letting the incision heal from the inside out.”
“So no stitches or staples?” I said.
“Right,” he said. “Only underneath—the dissolving ones.”
“You mean you left him open?” asked the woman to my right, clearly upset.
“We often do that,” said the doctor, turning to face her. “Much better chance of avoiding a bacterial infection.”
“But how will he heal if he’s not sewn up?” she asked, clapping her hand over her mouth in a show of dismay.
“We’ll have a home health-care nurse who—” The doctor paused in mid-sentence and glanced back at me. “Do you know her?”
“I don’t,” I said.
“Not a friend?”
“No.”
“Family member?”
“Nope.”
We all laughed. Waiting rooms are not conducive to privacy, and while that particular incident was funny because Michael was, indeed, fine, it seems to me that hospitals should designate an area in which doctors and family members can speak in confidence, without interlopers, as well-meaning as they may be. I know there are conference areas, and doctors often use them when the postsurgical news is dire. But how about using them for run-of-the-mill conversations too?
For Michael’s second surgery (he was not fine, it turned out—more on that later), I went solo for my long stint in the waiting room and struck up a conversation with a woman whose husband was also going under the knife. We bonded initially over our shared concern for our spouses but quickly moved on to our favorite local restaurants, the movies we’d seen, the state of the economy, our bewilderment over the public’s fascination with the Kardashian sisters, you name it. We never exchanged names and phone numbers or vowed to stay in touch; there was an implicit understanding that our friendship was based strictly on our mutual need to kill time. And it did kill time. Michael was out of surgery before I knew it.
So by all means bring a book or a laptop or an iPad if you have the ability to tune out all the noise. But my suggestion is to either bring a friend or make a new one.
One of the things I did not do while I waited in waiting rooms was get my butt up off the chair. Not to use the restroom. Not to visit the cafeteria. Not to pace in the hall. And certainly not to actually take a walk around the block. God forbid I should leave the room just at the moment that the doctor came looking for me or Michael woke up and asked for me.
And so I sat for hours, knowing it was as unhealthy as eating a dozen Krispy Kremes. I’m a writer and my lifestyle is nothing if not sedentary; people have been telling me for years that sitting is bad for your heart, bad for your circulation, bad for just about everything.
What I didn’t get is that by moving around even the slightest bit, I could have been relieving stress in that waiting room. That’s the takeaway from Nancy Kalish, a board-certified health coach who counsels both individuals and corporate clients and writes about health issues for national magazines.
“What’s happening when caregivers are under stress is that their bodies are pumping out an enormous amount of the stress hormones adrenaline and cortisol, which can have a really debilitating effect,” she explained. “New research shows that sitting for long periods of time is related to increased death rates and that just getting up and walking around makes a big difference. So if you can go out and walk around the block, do it.”
Enough said. The next time I’m in the waiting room, I won’t wait to get up and move. I seriously don’t want my death rate to increase; plus I wouldn’t mind reducing the cottage cheese on my thighs.
CHAPTER 8
The Hospital Room Etiquette Miss Manners Never Told Us About
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“When I go out to the lobby and introduce myself to family members, I say, ‘Here are the rules. You can come every day except for seven to eight thirty in the morning, and you can have two people at the bedside.’ I lay that right out.”
—KELLI JACKSON, RN, Santa Barbara Cottage Hospital
Depending on your loved one’s health insurance policy, he/she will either be entitled to a private room in a hospital or nursing facility or be stuck with a roommate.
Michael has had some lovely roomies who were quiet, obeyed the rules, and eased the boredom with occasional chitchat. But as his caregiver, I’ve been more concerned with the roommates who were less than desirable and required intervention.
His first crazy roommate actually provided us with comic relief, so I didn’t take any action against him—initially. He was a guy who’d been stabbed in the abdomen at a party; his girlfriend, he told us, had been in a jealous rage and couldn’t control herself.
She had good reason to be jealous, as it turned out. I came to visit Michael one night and the curtain was drawn between the two beds.
“He’s getting a blow job,” Michael whispered, nodding at his roommate.
“What?”
“Listen.”
Sure enough, there was a woman in there with Mr. Stud, and his moaning and groaning and “Oh, yeah, baby” were unmistakable signs that they were doing more than discussing the weather. When she was finished, he told her he loved her and she told him she loved him and off she went. Five minutes later he was on the phone with another woman.
“Hey, baby,” we heard him say. “You coming to see me tonight?”
Michael and I looked at each other and burst into hysterics.
This guy had a parade of ladies who’d show up to service him—one right after the other—and he was a master at scheduling their visits so they’d think they were his one and only. Talk about an operator. Yes, we were grossed out by his behavior after awhile, but I never felt it was my place to report it—until one of the nocturnal visits overlapped with another and a catfight ensued.
Michael was trying to rest and the screeching was too much. I stepped outside and asked a nurse to quell the disturbance. The next day the horn-dog patient was discharged, and that was the end of that.
One of my pet peeves when it comes to roommates are those with family members who ignore the “only two at a time” rule. I walked into Michael’s room one afternoon and there were ten people gathered around the patient in the next bed. And of course,
they’d confiscated my chair and pulled it over to their side of the room. They’d brought food, which reeked of garlic, and were on their cell phones constantly and one of them fancied herself as a spiritual guru and wouldn’t stop talking about “negative auras.” I couldn’t get over this patient’s family and their lack of consideration for my patient, who was too sick to tell them to shut up.
I went outside to the nurses’ station. “Isn’t there a rule about two visitors to a patient?” I asked the staff at large, since I couldn’t find Michael’s nurse.
“What’s the problem?” said one of them with wild disinterest, a blonde who was much too busy braiding her hair to make eye contact.
“There’s a convention going on in 314,” I said, referring to Michael’s room number. “My husband needs to rest.”
“Ask them to leave,” said the blonde.
I stepped closer to the desk. “No, you ask them to leave. It’s your job.”
I’m very easygoing except when I’m not. I’ve worked as a hospital volunteer for years and at two different hospitals. Rules are rules, and the nursing staff is supposed to enforce them for the good of their patients.
The blonde pouted but nevertheless did as I asked. The family filed out and the room was blessedly quiet. Bottom line? It may be the nurses’ job to restore order, but as a caregiver it’s our job to make them do it.
My role as the Roommate Police was never clearer than during Michael’s most recent hospitalization. The roommate was a solitary sort—no visitors, no phone calls, no TV watching. That was the good news. One afternoon a doctor who appeared to be new to his case came to see him.
“Hello,” said the doctor to the roommate. “I’ve been brought in to consult.”
One of the facts of hospital life is that you overhear private conversations between patients and doctors whether you intend to or not. I’m very sensitive to HIPAA, the law that mandates patient confidentiality, but hospitals and other facilities—doctors’ offices too—need to do a better job of making it practical. I mean have you ever been to your primary-care doc’s office for an appointment? Of course you have, so you know the drill. You sit in the waiting room and suddenly it’s your turn to go in and you realize it’s your turn because a nurse or receptionist screams out your name. Some confidentiality, right?
Anyhow, here’s what happened next between the doctor and Michael’s roommate.
“So how long have you had TB?” asked the doctor.
I did a double take. Tuberculosis is one of the most contagious diseases around, and Michael, who has the immune system of a mayfly, had been sharing a toilet and sink with this roommate. The guy should have been in isolation.
I hopped up and went to blab to the first nurse I spotted.
“I hate to compromise a patient’s privacy,” I said after I’d taken her aside so no one could listen, “but I think the patient in the bed next to my husband has TB. I’d like my husband moved to another room right away.”
The move happened within five minutes—and the roommate turned out not to have TB after all. Maybe I overreacted and maybe I didn’t, but my first priority in that situation had to be Michael. What’s more, I think one of the qualifications for being a good caregiver is to stick your nose in where it doesn’t belong.
CHAPTER 9
Who’s the Boss of Me?
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“Have ‘the talk.’ And if you’re a patient, make sure the person you give power of attorney to has your back.”
—KELLI JACKSON, RN, Santa Barbara Cottage Hospital
Michael and I were at the Pasadena office of our attorney several years ago when she said, “By the way, you two really need advance directives.”
“Huh?” I said articulately.
“Living wills. Durable power of attorney documents,” she replied.
Michael and I looked at each and shrugged. Not only did we not know exactly what she was talking about, but also we weren’t the least bit interested in having a discussion about our options should we become diaper-wearing ninety-year-olds. We were baby boomers. We had survived Woodstock, the sexual revolution, and the wearing of truly ugly tie-dyed clothes. Yes, he had a chronic illness and I had anxiety about his chronic illness, but we would live forever. Who wants to think about being incapacitated?
Nobody.
We’d all like to believe that if we were ever in an accident or developed a serious illness, we would nevertheless have all our faculties and be fully competent to tell the medical staff about everything from our allergy to penicillin to our aversion to fennel.
When Michael and I balked at the idea of filling out the documents, our attorney said, “Don’t you want to be in charge of your own destiny?”
“Yes,” we said. “Of course we do.”
“Then be smart and take care of business now—while you still can.”
“Okay, fine,” we said, not wanting to appear as if we were somehow slacking off in our responsibilities as grownups.
Our attorney handed us the forms and told us to go home and fill out all the required fields, then sign them and have them witnessed and notarized.
That night we spread the documents on the kitchen table and educated ourselves. Here’s what we learned about all the terminology after doing a little research.
An “advance directive” is a legal document that spells out a person’s wishes on the subject of end-of-life health care. Advance directives are divided into two categories: living wills and durable power of attorney documents.
A “living will” lays out a person’s specific wishes for end-of-life treatment—from requesting certain procedures to refusing them.
A “durable power of attorney document” allows a person to designate another person (usually a family member) with the right to make those medical decisions in the event the patient can’t do so himself.
Together, the two types of advance directives provide the greatest amount of clarity when it comes to how we want to be cared for—to “control our destiny,” as my attorney put it.
Michael and I got down to business, asking each other what sort of maneuvers we’d want if we were in the same situation as Terri Schiavo.
“Do you want to be kept alive with a feeding tube?” I asked.
“Do you want the doctors to give you food and water?” he asked.
“Do you want TV cameras to come into your hospital room and shoot footage of you trying to blink your eyes?” I asked.
“Do you want an extreme makeover while you’re on all those machines—hair, makeup, the works?” he asked.
Yes, we made a silly game of it, but we ended up with the hard information we needed and it wasn’t the slightest bit uncomfortable or upsetting. And we learned things about each other. Michael wanted the full menu of lifesaving measures, while I said I wanted my plug pulled if I broke a nail.
The important thing is that we did the deed, and I urge others to do it too. If you’re a caregiver, you may have already been designated as such in your loved one’s durable power of attorney document, but that doesn’t get you off the hook; you need to designate someone to take care of you, too.
The challenge for caregivers is how to coax our loved ones to actually sit down and sign these documents. If the loved one is an elderly parent, it can be harder than getting him or her to stop driving.
Our attorney, Karen L. Mateer, deals with the problem all the time in her practice, which focuses on wills, trusts, and estates. I asked her to share her knowledge about advance directives—a subject that most people either find numbingly dull or terribly distressing. For me, legal documents are like math—i.e., they make my eyes glaze over.
Jane: The terminology of the different documents is confusing. “Advance directives,” “living wills,” and “powers of attorney.” How are we supposed to tell what’s what?
Karen: First, I need to be clear that whatever I’m going to say pertains specifically to the state of California. The terms and conditions of these docum
ents can differ by state.
Jane: Oh, so it’s even more confusing than I thought.
Karen: Not necessarily. Basically all advance directives and powers of attorney are subject to the probate code of the state in which you reside. To be totally correct, one should consult the state law within the state of residence.
Jane: Getting back to all the terms, why so many?
Karen: The “living will” term is not really a term of law, but it’s in the common parlance. It’s describing the person’s specific directive course of treatment as well as the treatment they don’t want. In the legal community, “advance health-care directives” is sort of the overarching term that’s often used to differentiate it from the financial directives. At hospitals, they use either “advance directive” or “living will.” And then there’s the “five wishes” document.
Jane: Never heard of that one.
Karen: It was originally introduced as a Florida-only document, but a national version was created in ’98. It combines a living will with a health-care power of attorney and goes through what a person’s individual wishes are: I want so-and-so to make care decisions for me when I can’t; these are the kinds of treatments I want or don’t want; I would like to be kept comfortable in these specific ways (pain management, personal grooming, etc.); I want to be treated at home as opposed to in the hospital; I want somebody to pray at my bedside; I want a memorial but not a funeral; I want my estranged son to know I still love him. It’s almost like a personal care document.
Jane: Do we have this “five wishes” document in California?
Karen: We do. It currently meets the legal requirements for an advance directive in forty-two states and the District of Columbia. It doesn’t in Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas, and Utah. You can download the online version at www.agingwithdignity.org.