You'd Better Not Die or I'll Kill You

by Jane Heller

  Suzanne Preisler, on the surgeon who operated on her sister to determine whether her ovarian tumor was malignant: “The doctor was excellent, but his bedside manner was just terrible. He didn’t even bother to tell us she had cancer. He walked into the waiting room after surgery, said she was okay, and walked out. I had been there waiting with my husband, Jerome, for eight hours. Maybe the surgeon had spoken to my sister’s husband somewhere else, but I guess he didn’t feel he had to talk to her sister. So Jerome blocked his way into the elevator and he started answering our questions. Until that point, he was just going to leave us there.”

  Karen Prince, on the neurologist in the hospital who treated her forty-nine-year-old husband immediately after he suffered the stroke: “He upset me very much. He said to me, in front of Andy, over his bed, ‘The only thing he has going for him is his age.’ I said, ‘Excuse me, doctor? Could we talk in the hallway?’ You’d think he would have had the smarts about that because we didn’t know what Andy took in and what he didn’t. I had no use for that doctor after that.”

  Toni Sherman, on the orthopedist who treated her daughter Courtney’s severely infected foot after prior surgery at another clinic had failed to catch the infection: “I started talking to this orthopedist about lawsuits. He got really upset. He said, ‘I am not going to testify. I am not going to be involved in this. I think you are absolutely wrong to pursue this.’ My initial reaction was: Oh my God, what have I done? I realized I allowed his reaction to make me retreat, as if I’d been a bad girl, and how easy it is for them to do it and how accepting I am of their ire. I think he could have handled it in a very different way. He was a doctor and I was the mother of his patient and I was terrified of what the eventuality of all this might be, which was that my daughter could lose her foot. But he was a very good orthopedist. So I just stopped my rant completely and we went on. It left me feeling that doctor-patient relationships are complicated. I think when doctors are approached about the misbehavior of other doctors, they react with fear that they’ll be drawn into it. But maybe it was simply that he thought I was a nasty little shrew.”

  My goal is not to beat up on doctors in this chapter. But Toni is right; doctor-patient relationships are complicated and doctor-caregiver relationships can be downright rocky. Personally, I worry way too much about being chatty and entertaining when I’m around doctors so that they’ll like me (and presumably be nice to Michael). It’s pretty pathetic. Why are they so intimidating?

  “They almost have to be,” psychotherapist Tina B. Tessina told me. “You can’t go cutting into people and making life and death decisions with your heart bleeding all the time. You’d never survive. So in order to be good doctors, they have to pull away.”

  Michael Lindenmayer thinks that part of the reason doctors are hard to deal with is that they’re under tremendous stress themselves.

  “They want to help,” he said, “but they are getting annihilated by the medical system right now. Their payments are going down and their patient load is going up. So when you’re going to them, you have to know what to expect from them. And they’re not miracle workers; families have to really get with the program of being their own advocate and their own coordinator.”

  The good news is that many, many doctors don’t pull away, do spend time with you, do make you feel cared for and attended to. Judy Hartnett, for example, has found all of the above in the doctor who treats her husband, Paul, for MS: “Our internist now is as bright as anybody I’ve ever met and equally kind. He said from the get go, ‘I will take care of both of you. You don’t ever have to sit in an ER alone, Judy. Here’s my cell.’ That was my goal—to find somebody that was on my team.”

  We all need to find doctors like Judy’s. In the meantime, it’s huge just knowing they’re out there.

  CHAPTER 5

  How to Turn Even the Crankiest Nurses/Aides/Medical Personnel into Buddies

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  “You thank the nurses all the time, for every little thing they do and every big thing they do. And then you thank them again.”

  —JENNIFER DUBOIS, caregiver

  Tell me if this has happened to you: You’re taking your loved one to the doctor. Or maybe you’re visiting him/her at the hospital or assisted-living facility. You’re exhausted, anxious, so vulnerable that a cross look from a stranger in the elevator is enough to bring you to your knees. You arrive and what do you find? A receptionist, nurse, or nurse’s aide with a full-on attitude.

  For example, during one of Michael’s hospitalizations that was particularly worrisome, I was about as strung out as I’d ever been—anxious about his health, missing him at home, desperately needing a good night’s sleep. I yearned for a nurturing presence at the hospital, a compassionate member of his medical team who would—I don’t know—say something soothing, hug me, be the human equivalent of a bowl of Cream of Wheat.

  Instead, what I got was a nurse whom the rest of the staff had nicknamed Big Linda in order to differentiate her from another nurse named Linda, who was petite. Big Linda was about six feet three and 250 pounds and somewhere in her forties. She wore a scowl that could scare small animals. She was brusque with everyone, and several nurses had transferred out of the unit so as not to have to deal with her. She was an equal opportunity grouch, in other words.

  What made Big Linda stand out (in addition to her size) was that everyone else at the hospital was so kind and attentive—from the charge nurse right down to the woman who scrubbed the floor.

  Michael tried to befriend Big Linda to the extent that he smiled at her a lot and hoped she’d smile back.

  “Didn’t work,” he said about his efforts. “She’s just an unhappy person. Nobody around here likes her.”

  “Is she giving you good care?” I asked.

  “Good enough,” he said.

  That wasn’t good enough for me. I was determined to charm Big Linda, being the pleaser that I am—someone who operates under the notion that everybody should be nice to everybody so we can all live in one happy Kumbaya world.

  I tried being nice to Big Linda.

  “How are you today, Linda?” I asked when she stormed into Michael’s room to flush his IV line. She had heavy feet to go with her heavy body, so you could always hear her coming.

  “Fn.” (I think she said “Fine,” but she mumbled it so I couldn’t exactly tell.)

  “You’re amazing the way you come in to check on Michael so often. We really appreciate it.”

  Silence.

  “Must be a long shift,” I nattered on. “Isn’t it, like, seven to seven?”

  She grunted and turned to go.

  “Do you like cake?” I said in a burst of spontaneity.

  She rolled her eyes. “Why?”

  “Just wondering,” I said, remembering that my friend Laurie bakes over 300 little loaf-size chocolate cakes every Christmas, wraps them in Saran wrap with a bow on top, and gives them out to doctors, nurses, and receptionists, not to mention manicurists, bikini waxers, and every other person who performs a service for her. They go over really well, even with the most hard-to-crack sourpusses, and for that alone Laurie should win the Nobel Peace Prize.

  I left the hospital that night, stopped at the supermarket, bought a box of Duncan Hines chocolate cake mix and baked a loaf, and then wrapped it the same way Laurie wraps hers. (No, my cake wasn’t from scratch, but I figured it was the thought that counted.)

  The next morning I presented it to Big Linda when she came into Michael’s room to bark that it was time for his medication.

  “For you,” I said with outstretched arms, holding the cake tenderly, as if it were a newborn baby.

  “What’s that?” she said with her perpetual scowl. You would have thought I’d just handed her a pile of manure.

  “A chocolate cake,” I said. “To thank you for taking such good care of my husband. Maybe you can have a piece on your lunch break today.”

  Big Linda looked stunned. Her large frame stood motionle
ss for several awkward seconds before she reached out for the cake and smelled it. “Doesn’t have nuts in it, does it?”

  That was her response—to ask me if the cake had nuts in it.

  “Nope. No nuts.”

  “Okay then.”

  And off she went with the cake.

  I turned to Michael. “So much for that,” I said. “Big Linda couldn’t even acknowledge an act of kindness.”

  We speculated about her home life and wondered why she was so sullen, and then just when we were really getting into our analysis of her emotional psyche, back she came—this time lugging a huge chair. It was like a Barcalounger only without the reclining part and she had trouble squeezing it through the door. She set it down in front of Michael’s bed and then motioned for me to get up from the visitor’s chair (the same model that was in every patient’s room) and wedged the Barcalounger into the corner in its place.

  “There,” she said, wiping the sweat off her gigantic forehead. “Use that from now on. It’ll be more comfortable.”

  “Oh. Wow. Thank you very—”

  Before I could finish the sentence, she was gone.

  I leaned back in my new chair and grinned. I felt like a queen on a throne. Big Linda was human after all.

  Should every caregiver bake a chocolate cake for every cantankerous medical person? Ilene Brenner, the ER doc I interviewed, said that food went over well with her and her colleagues. Heidi Holly, executive director at the Friendship Center, an adult day care center in Santa Barbara, agreed that food is always welcome, but she had another suggestion for caregivers.

  “Write a letter to the editor of the local newspaper,” she said. “Publicize us. Let the community know how grateful you are that you found this jewel that helps your mom or dad. Or just come up to our staff and say, ‘Thank you for what you do to help my mom or dad live with dignity and joy.’ ”

  Since most of my experiences have involved nurses, I was curious about what they think of caregivers. What are the ways we get on their nerves, what are the ways we endear ourselves to them, and how can we be the best advocates for our loved ones? Kelli Jackson, RN in the Critical Care Unit at Santa Barbara Cottage Hospital, was kind enough to let me ask her everything I ever wanted to know on the subject.

  Jane: Do you like the family members of your patients or are we a huge pain?

  Kelli: The family members become our patients in a way. They’re the ones we’re talking to, the ones we’re reassuring, and the ones we’re updating on the patient’s condition.

  Jane: It’s scary to have a loved one in the Critical Care Unit. Do most family members behave calmly or are they on the hysterical side?

  Kelli: It totally depends on why the patient was admitted. You’ve got the family members who’ve been there with their chronically ill loved one five or six times. They’re a little bit calmer because they understand the system. But if you have a twenty-year-old guy with a walnut allergy who can’t speak and can’t breathe and is on a ventilator and he was completely well that same morning, the family is going to react much differently. What matters most is how information is given to them when they get there. Sometimes it’s delivered by residents, who may or may not know what they’re talking about. Sometimes it’s delivered by an attending physician, who may be very involved with that family and knows the case inside and out. Sometimes it’s delivered by nursing because we’re at the bedside. But the nursing coat is very different than the white coat.

  Jane: Speaking of which, nurses don’t wear uniforms anymore—at least not that I’ve seen. It’s almost impossible to tell who’s a nurse, who’s an aide, who’s a tech. What’s up with that?

  Kelli: I’ve worked at places where we’ve had to wear uniforms—like all the nurses wore blue and the techs wore a different color. The research definitely is out there in terms of patient dissatisfaction—that it’s a problem when they don’t know who’s who.

  Jane: Once caregivers figure out who the nurse is, can you suggest a diplomatic way for us to speak up if we think he or she is doing something wrong? Nobody wants to go off on anybody, but sometimes nerves get frayed.

  Kelli: If a family member is mad about something that’s not my fault, I’ll listen and try to hear why they’re angry and help them see the light.

  Jane: What if it is your fault?

  Kelli: We all make mistakes. We all say we’re coming back with that blanket and we forget. Years ago a guy asked me for two Tums and I totally forgot. I went back a few hours later and he said, “Were you making those from scratch?” It was so perfect because he was being funny instead of angry. We had built a trust. I had done what I said I was going to do every time except that time, so it was okay. We are wrong sometimes and the families are rightfully angry.

  Jane: So what should we do about that anger?

  Kelli: There’s a chain of command. If you’re not getting what you want from the nurse, you can talk to the charge nurse, who oversees the floor for that day. If that doesn’t work, you can talk to the nurse manager, who manages our floor. And then there’s the nursing supervisor, who manages the hospital on that particular day.

  Jane: Don’t you get pissed off if somebody goes over your head?

  Kelli: No, but I wish they’d tell me the problem first. One thing that’s frustrating is when a patient has a problem with something we do and they tell the family member but not us. So the angry family member calls and says, “My father is cold. He needs a blanket.” Or “He’s hungry.” I say, “Well, the patient hasn’t asked for anything to eat. I can’t read minds.” The patient needs to state his or her needs, and if they’re not met then it’s justifiable for a family member to come and ask why.

  Jane: Do more people get angry today than in the past? I think there’s a lot of pent-up frustration with the health-care system in general.

  Kelli: Definitely. People don’t have as much health-care coverage. They’re sicker by the time they come into the hospital, so the family members are more stressed.

  Plus, there’s the economy. Maybe the family member has just lost a job. It goes back to our culture. People don’t talk about their feelings so it all kind of builds up, and then a nurse in a hospital says, “I’ll be back,” and doesn’t come back right away, and people snap.

  Jane: Do you ever snap? You’re in a high-stress job, after all.

  Kelli: I’m like everybody else. If I’m having a bad day, I’m a little shorter, a little less accommodating.

  Jane: What constitutes “having a bad day” when it comes to dealing with family members? Are there specific things we do that drive you nuts?

  Kelli: It’s the worst when they say, “Can we have butter for my father?” And you go to the kitchen and you get the butter and then you come back and they say, “Can you get him cranberry juice too?” I go, “Really? I was just in the kitchen where the butter came from.” So here’s a tip for caregivers: If you’re going to ask a nurse for a variety of things, ask for them all at once so she doesn’t have to make several trips and build up resentment toward you. And then there are the caregivers who ask for things for themselves. Like: “Can you get me coffee?” That bugs me. I want to say, “Get your own coffee in the cafeteria. You can leave the patient alone for five minutes.”

  Jane: Do you commiserate with other nurses about us caregivers? Make jokes about us? Come on. Be honest.

  Kelli: We do. Some of the wives are a little much.

  Jane: The wives? Uh-oh. Why?

  Kelli: They’ll feed their husband, who’s perfectly capable of feeding himself. Or I’ll be talking to their husband, and they’ll answer every question. The women definitely want to control the situation. I see them stand there while their husband is having a bowel movement. I’ll say, “You could go out of the room and give him some privacy.”

  Jane: Yikes. I’ve never done that!

  Kelli: Maybe it’s their way of feeling useful. But the husband doesn’t always want them there. He may want a break. That’s something for c
aregivers to really understand—that the patient sometimes needs to be left alone.

  I don’t know how many times patients have whispered to me, “Can you please just tell them to leave for awhile? Make them go to dinner?” It’s really important for families to give the patients some rest and quiet.

  Jane: They tell you they want us to leave?

  Kelli: Definitely. Obviously, it’s important to have people call and come and visit, but it’s also important for the patients to have quiet time. So, my tip for caregivers is this: have one contact person that will talk, text, tweet, e-mail about the patient’s condition so he doesn’t have to tell everyone the same thing over and over again.

  Jane: What’s the best way for caregivers to show their appreciation for all you do? I once baked a cake for a nurse.

  Kelli: Writing a letter is great because letters are always very genuine. Sometimes people just want to say goodbye and thank you. Or sometimes they say they appreciate it if you had a meaningful conversation with them. It can be a very intimate time when you talk to a nurse while your loved one is in the hospital sick or, in some cases, dying. Nurses are safe, so family members will talk about all kinds of things with you.

  Jane: Is it harder for you when the patient is dying?

  Kelli: No. I love the death-and-dying moments because I feel I can bring so much to them. The horrible transition is going to happen no matter what, so I try to anticipate what the family members need. I listen. I’m compassionate. I cry with them. I hug them. I just took care of a dying patient whose daughter was my age. She wanted to know what was going to happen with her father, so we talked about that. Then we talked about life and what it was like being our age, not married, and no kids. When she was leaving, she gave me a hug and said, “Thanks so much. I needed that conversation.” We were truthful with each other, not superficial. And, believe it or not, the end-of-life moments can be fun. The family members tell funny stories about their loved one. I’ll say, “What was your favorite thing about your husband?” Or “Where did you guys meet?” I’ve had some really good moments with my family members.