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

by Jane Heller

  At the ER, Michael was given an antibiotic that caused him to hurl for most of the weekend, while I kept thinking back to those old commercials for Calgon bath soap. Remember them? The ones where the woman has had it with the kids, the traffic, the demands of her life, and she looks up in exasperation and says, “Calgon, take me away”?

  Sadly for the advertising agency that came up with the campaign, what takes me away isn’t a soak in the tub. But I do have my go-to methods of escaping—of focusing on something entirely unrelated to medical problems. Brain breaks are essential for caregivers, whether that means withdrawing into a movie or throwing ourselves into a new hobby. The objective is to relieve the stress—if only for an hour or two.

  I have a friend whose distraction of choice is any Lifetime movie featuring a woman in jeopardy; she revels in the fact that the heroine’s predicament is always worse than her own. Another friend gets away from it all by reading real estate listings online and fantasizing about properties with gazebos and wine cellars and guest cottages over garages. Still another friend knits scarves; she’s made so many she could wrap the necks of the entire population of Rhode Island.

  When I need a distraction, I watch Yankees games if it’s baseball season, although I expend far too much energy cheering or cursing, depending on the outcome, and wind up exhausted.

  For a more relaxing pastime, I go straight to the Food Network, which is another way of saying I’m mad about food porn. There’s something about watching professional chefs create dishes I would never dream of cooking that completely transports me out of my reality. Take Ina Garten, the star of Barefoot Contessa. Is she not the most calming person who ever stepped in front of the camera? She wears the same who-cares blue blouse-with-the-collar-turned-up on almost every show, speaks softly, doesn’t insult the viewer’s intelligence, and seems to genuinely like her husband whenever he puts in an appearance. Watching her make scones in the beautifully appointed kitchen of her house in East Hampton is better than taking a Valium. And Giada DeLaurentiis? Have you ever seen a smile like that? She’s the happiest damn woman who ever lived. Who wouldn’t relax watching her whip up pasta for her equally happy family and friends?

  Some caregivers have told me that they cope by performing mindless tasks—cleaning the house, doing laundry, organizing closets—and I can certainly understand why. After feeling helpless for hours, it’s satisfying to come home and regain a sense of order and control. The important thing is to do something—anything to take your mind off the fact that you’ve got a kid, spouse, or parent who’s depending on you.

  Well, not anything, obviously. There are healthy escapes and not-so-healthy ones, and we have to know the difference or we’ll sink faster than the people we’re supposed to prop up.

  I asked some of our caregivers for ways that they’ve coped during their loved one’s medical crisis—for better or worse:

  Yudi Bennett: “In 1998, before Bob was diagnosed with cancer, we got together in somebody’s living room with four other families who had kids with autism and we started a group called the Foothill Autism Alliance. Bob became president and was president until he died. When he was in the hospital having the bone barrow transplant, he had his computer and wrote a 400-page resource guide on autism. It became the bible for all these families. For Bob, running the group was a gift. I think it kept him going and, by extension, me too.”

  Barbara Blank: “I get my hair done at the beauty shop. Even just sitting down for an hour and having my hair blown dry is delicious.”

  Linda Dano: “My favorite escape is always gardening. I get lost in it. And my dogs have been everything to me. They’re just there with those little faces and those little licks.”

  Judy Hartnett: “I watch The Housewives of Atlanta or any of those housewives. That’s my lowest of the low; I may as well be in bed with a box of Cracker Jacks. My sister says, ‘Do you actually watch those shows? What’s the appeal?’ I think it’s because my life is so ridiculous that I can watch something ridiculous.”

  Cecilia Johnston: “A couple of glasses of wine help. And I read a lot. I have a Nook and I think I’ve read 140 books on it.”

  Suzanne Mintz: “My circumstance is different because my work and my personal life are both about caregiving, so it’s hard to get away from all of it. I love getting engrossed in a book. Going and getting a haircut is nice. I get massages. And I get manicures regularly. Those are things I do for myself, although my manicurist says I’m the only one she has to tell to relax my fingers.”

  Jeanne Phillips: “I have been blessed with the most supportive husband in the world. He’s wonderful. He is my rock. I can talk to him about anything. If I need advice, he’ll give me advice. If I need his arms around me, he’s always ready. He’s helped me to be there for my mother.”

  Suzanne Preisler: “When I was a kid my father used to build a lot of things for my mother, who was Japanese, and I always helped him. So I started building shoji doors just to keep myself occupied when my sister got sick. And I watched baseball like a lunatic. My husband, Jerome, loves the Yankees, but I got the MLB package and would watch any game. It was a big escape for me. And you know how houses in New England have those rock walls? When I thought my mother was going to die, I worked off my stress by building one around our property in Maine—all by myself. I’m 115 pounds on a good day, but I was like Superman lifting up a car.”

  April Rudin: “I escaped into food and alcohol, and my sister shunned both. The only thing we came together on was shopping. We went to some great outlet malls while we were visiting our grandmother.”

  Toni Sherman: “I had a facial once a month, a manicure once a week, a pedicure every two weeks, and a massage once a week. I was not neglecting myself, obviously. And I had Don, my partner of twenty-four years. He cooked. He cleaned. He marketed. He slid in with all the things that I was not able to do.”

  Health coach Nancy Kalish has another suggestion for us: listening to music.

  “Mozart really does do something to your brainwaves,” she told me. “It evens them out, reduces stress, and initiates the relaxation response. If you don’t like classical music, listen to anything that gives you pleasure. Also, putting on some music and dancing is helpful, even if it’s while you’re doing housework or it’s only for five minutes. I encourage people to try things even if they don’t think they’re going to work.”

  April and Cecilia both mentioned alcohol, and I’m glad they did. I love red wine. Nothing helps me escape the way a glass of Syrah does, not even Ina Garten. Luckily, I never need more than a few sips to feel my muscles relax. I stick to one glass, tops, because any more than that gives me a headache.

  So how much escape is too much? Where do we draw the line between healthy escapes and unhealthy ones? What’s the difference between a distraction and a dependency?

  Linda Dano admits that during the crisis with her father, she wasn’t able to tell the difference and, even if she could, she didn’t care.

  “I kept getting fatter,” she said. “I’d finish taping Another World, leave the studio, stop at the McDonald’s drive-through, get the Big Mac, the fries, and the malt, and then I’d come home and make dinner for my husband and my mother and eat that too. I was abusing myself big time. I was so guilty about giving my father the feeding tube that I was punishing myself.”

  Michael Lindenmayer reports that there’s another, even more insidious, type of behavior that’s becoming common among caregivers.

  “I’m talking about the widespread abuse of the medicine cabinet of their elder loved one,” he said. “That aged person is getting dosed either with some kind of happy pill or sedation, and we’re seeing more and more caregivers helping themselves to what’s there. Then they’ll go back to the pharmacy and say, ‘Oh, my father ran out of this prescription early.’ And the pharmacist will say, ‘How did that happen?’ And they’ll say, ‘I guess Dad went through his pills twice as fast as he should have.’ The pharmacist will say, ‘Okay, we’ll refil
l it this time.’ And then it happens again and again, and what you get are strung-out caregivers.”

  Clinical psychologist Michael Seabaugh offers simple guidelines for those who aren’t sure whether they’re escaping or self-medicating when it comes to wine, the favored alcoholic beverage for so many of us.

  What’s Healthy?

  A glass or two that brings down your anxiety and tension levels

  What’s Not Healthy?

  A glass or two that numbs your self-awareness and causes you to do self-destructive things (like finishing the bottle)

  I think we all know when we’re crossing a line—and that when we do cross it we won’t be able to care for anybody, much less ourselves.

  CHAPTER 18

  Being a Crybaby Isn’t Necessarily a Bad Thing

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  “Generally speaking, crying is good. It’s a release of tension and a clear expression of an internal feeling. It can be very healing.”

  —MICHAEL SEABAUGH, clinical psychologist

  After Michael’s last surgery following an intestinal obstruction, one of his doctors maneuvered me outside his hospital room and left me with an ominous warning about my husband: “At his age and with all the resections he’s had, he really can’t have another one.”

  “Can’t have another what?” I said, not playing dumb but wanting him to spell out exactly what he meant.

  “Another resection,” he said. “He loses more small intestine with each one.”

  “I thought there was plenty to go around,” I said. “Don’t we all have about twenty feet of it?”

  “You and I do. Michael doesn’t. Not anymore. His life is . . . compromised.”

  My heart dropped when he said that. I wasn’t crazy about the little pause in the sentence either.

  “His life isn’t compromised,” I said defensively. “He deals with his Crohn’s like a hero. He goes sailing, takes walks with me, has a social life, doesn’t—”

  “I’m talking about short bowel syndrome,” he interrupted. “As Crohn’s patients lose more and more small intestine, their ability to absorb nutrients decreases. Certain locations of the small intestine are responsible for absorption of nutrients, vitamins, and minerals.”

  “So you mean he would need to take vitamins?”

  “No. I mean that he would need injections, because the mechanism for absorption by mouth is missing. And, eventually, he would need TPN.”

  “No idea what that is,” I said with dread. It’s not a good sign when your doctor uses initials to describe a treatment, at least not in my experience. It’s even worse when he uses the initials after the word “eventually.”

  “Total parenteral nutrition,” he explained. “Essentially, it’s a feeding tube.”

  I had no reaction. Zero. I stood there as if he had just recited his grocery list. After a beat or two, I finally let his words register and managed, “He would need this permanently?”

  “Yes, permanently. You can’t grow new intestine once it’s gone.”

  I did an imitation of a wax figure as he went on to explain that TPN is administered through a battery-powered IV pump and that most patients dispense it themselves, with the help of a caregiver, during several hours at night—forever.

  I thanked the doctor for his time. And then, since Michael was sleeping, I went outside to the parking lot, got in my car, and cried for about twenty minutes. No one was parked on either side of me—I had the area pretty much to myself—so I didn’t have to worry about turning down the volume on my wails or containing the flow of snot pouring out of my nose. I just sat there and sobbed my guts out. I allowed myself to think lots of poor-Michael/poor-me thoughts, momentous and trivial—from how dramatically his life would change to how much of a crimp a permanent feeding tube would put in my dinner parties. Crying was incredibly cathartic, and my car was the perfect place to do it—a small, confined space that felt very womblike and safe. And I was proud of myself for not melting down in front of the doctor or, more importantly, Michael, as I would have in the old days. As I wrote earlier in this book, I’ve learned how and when to freak out.

  After awhile, I reminded myself that there was no guarantee that Michael would ever need this TPN thing, that the doctor was only projecting into the future, that my catastrophizing wasn’t productive, that my husband wasn’t dying, only recovering from his latest surgical adventure, that others have it far worse than he/I did.

  I pulled a wad of tissues from my purse, mopped my face, reapplied my lipstick, and got out of the car, ready to be perky and upbeat and caregiverish when I walked back into that hospital room.

  Crying has been like a time-out for me over the course of Michael’s flare-ups and I’m a big advocate of it. I don’t do it often, but it does have its charms. I don’t love the puffy, red eyes that come with it or the blotchy complexion, but I’ve found it to be a remarkably effective way to vent my frustration and express my fears. It also allows me to rededicate myself to my marriage and whatever challenges lie ahead because once I’ve cried, I’m done with the self-pity and I gear up for the next course of action.

  Is it healthy to cry? Or am I just a big whiner? I asked Martha Rolls Collins, who practices alternative medicine and mind-body therapies, for her take.

  “I have a client who’s addicted to crying,” she said. “In her case it’s a stop sign: Don’t come any closer. There are also people that cry because they can’t figure out the specific emotion they’re feeling. They cry when they’re sad. They cry when they’re angry. They cry when they’re happy. It’s all the same thing to them. So the crying needs some focus. You need to realize that you can feel sad without disintegrating. Then you can have a heartfelt, strong connection with the sick person you love. It’s very empowering to feel even the greatest sadness and know you’ll be okay.”

  I think Martha’s right: crying is empowering, as contradictory as it sounds. That’s why I feel better after a good cry. Not only have I released pent-up emotion, but also I’ve processed whatever the new information is and decided I can live with it, which is no small thing.

  So I say do it. Just make sure you’ve got those little packets of Kleenex and you’re good to go.

  CHAPTER 19

  Sometimes Laughter Isn’t the Best Medicine—It’s the Only Medicine

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  “Research shows that laughing lowers cortisol levels and provokes a relaxation response. Even faking or forcing your laughter does the same thing.”

  —NANCY KALISH, certified health coach

  I went to the hospital to visit Michael before one of his surgeries and when I got there he was sitting up in bed, his hands clasped together, his brow furrowed, his expression that of someone deep in thought. I stood in the doorway, not wanting to intrude on his quiet time. Was he contemplating his mortality? Reflecting on his life as a person with a chronic illness? Worrying that the surgery might not go well? Whatever it was, I was sure it was something profound.

  I waited another minute or two and then walked into his room. I sat beside him on the bed, stroked his forehead, and said, “Are you upset, sweetheart?” I rarely call him sweetheart—we have other, far more juvenile, terms of endearment for each other—but I was trying to sound mature, like someone who could listen to his insights without snickering.

  “No,” he said. “I’m not upset.”

  “Nervous?”

  “No.”

  “Pensive?”

  “No.”

  “Then what?”

  “Mortified.”

  “Mortified? About what?”

  “About what just happened.”

  As I’ve said elsewhere in this book, my husband doesn’t make it easy to have a conversation.

  “Okay,” I said, reminding myself to be patient. “What just happened? Maybe I can help.”

  “Too late,” he said. “The damage has been done.”

  “It can’t be that bad,” I consoled him. “Tell me.”

  After
a heavy sigh, he explained that a nurse had just come to shave his pubic area, as is standard operating procedure prior to abdominal surgery.

  “She was really pretty,” he said, lowering his eyes.

  “And?” I said, waiting for the “mortifying” part.

  “And I got an erection while she was doing it,” he said. “She flicked my dick with a pen to make it go down. I guess it happens a lot with men and that’s how they handle it.”

  My jaw dropped. This nurse was a dominatrix.

  “And did it go down?” I asked.

  “Yeah. But the whole thing was really embarrassing.”

  My first instinct was to say something soothing to my husband, because he really did seem rattled. My second reaction was to be jealous that he’d sprung a boner in the presence of a woman other than me. And my third impulse—the one that prevailed—was to make a joke out of the whole thing.

  “At least you can still get it up,” I said and laughed at the absurdity of it all. Michael laughed too, and before we knew it we had turned an incident that had made him feel uncomfortable into a story we would later retell whenever we needed a good giggle.

  Humor has always been my salvation. When I was growing up in a family of squabbling stepsiblings, there was often tension at the dinner table. I tried to diffuse it by telling jokes. And if my jokes didn’t work, I did impersonations of the mailman, the guy at the dry cleaner, our teachers, you name it—anything to get a laugh and prevent somebody from bolting from the table in a huff.

  Humor keeps me balanced. Humor reminds me that life holds moments of joy, despite the obstacles we face. Humor is the best antidepressant any pharmaceutical company could ever have invented. I once got a fan letter from a therapist. She said she’d read all my novels and prescribed them to her depressed patients because the stories were “better than Prozac.” I saved that letter because it reinforced my belief that humor does get us through the tough times. Black humor, gallows humor, bathroom humor, wry humor—it’s all good if it gives us a break from our problems.