by Jane Heller
You’d Better Not Die or I’ll Kill You
You’d
Better Not Die
or I’ll Kill You
--------------
A Caregiver’s Survival Guide to Keeping You
in Good Health and Good Spirits
JANE HELLER
Copyright © 2012 by Jane Heller.
All rights reserved. No part of this book may be reproduced in any form without written permission from the publisher.
Recipes on pages 203-207 reprinted from: The Very Best of Recipes for Health by Martha Rose Shulman. Copyright © 2010 by Martha Rose Shulman. Permission granted by Rodale, Inc., Emaaus, PA 18098.
Library of Congress Cataloging-in-Publication Data available.
ISBN 978-1-4521-2602-9
Chronicle Books LLC
680 Second Street
San Francisco, California 94107
www.chroniclebooks.com
ALSO BY JANE HELLER:
FICTION
Clean Sweep (formerly Cha Cha Cha)
The Club
Infernal Affairs
Princess Charming
Crystal Clear
Sis Boom Bah
Name Dropping
Female Intelligence
The Secret Ingredient
Lucky Stars
Best Enemies
An Ex to Grind
Some Nerve
NONFICTION
Confessions of a She–Fan: The Course of True Love with the New York Yankees
For Michael Forester,
my brave husband and best friend
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Contents
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Introduction
CHAPTER 1: What Is a Caregiver Anyway?
CHAPTER 2: Navigating Past the Freak-Out
CHAPTER 3: Making Emergency Room Visits and Insanity Mutually Exclusive
CHAPTER 4: Doctors—Can’t Live with ’Em, Can’t Live Without ’Em
CHAPTER 5: How to Turn Even the Crankiest Nurses/Aides/Medical Personnel into Buddies
CHAPTER 6: When Loved Ones Take on a Different Personality and You Start Wishing They’d Disappear
CHAPTER 7: How to Wait Out Waiting Rooms
CHAPTER 8: The Hospital Room Etiquette Miss Manners Never Told Us About
CHAPTER 9: Who’s the Boss of Me?
CHAPTER 10: Getting on the Same Page as that Sister Who Drives You Nuts (and Other Family Matters)
CHAPTER 11: Who Knew Friends Could Be So . . . Unfriendly?
CHAPTER 12: Does Working Mean You Don’t Care or Does Caring Mean You Don’t Work?
CHAPTER 13: The Home Health-Care Invasion
CHAPTER 14: Using the F Word, as in Facility
CHAPTER 15: Finding a Shoulder—or Ten—to Lean On
CHAPTER 16: “Caregiver Sleep” Doesn’t Have to Be an Oxymoron
CHAPTER 17: The Great Escape—Taking a Mental Vacation
CHAPTER 18: Being a Crybaby Isn’t Necessarily a Bad Thing
CHAPTER 19: Sometimes Laughter Isn’t the Best Medicine—It’s the Only Medicine
CHAPTER 20: Just Breathe. Or Meditate. Or Both.
CHAPTER 21: Who Has Time to Cook a Healthy Meal? We Do.
CHAPTER 22: The Exercise Conundrum
CHAPTER 23: Sex? Romance? Is Anybody Getting Any?
CHAPTER 24: When to See a Shrink
CHAPTER 25: “Spiritual Care” Isn’t Necessarily Just for the Spiritual
CHAPTER 26: Getting Through the Goodbye
CHAPTER 27: Yes, There Are Silver Linings
CHAPTER 28: When Caregiver Becomes Caregivee
CHAPTER 29: Famous Last Words
Acknowledgments
Introduction
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“I can’t take the pain!” Michael wailed. “Just get a gun and shoot me already!”
My then-boyfriend-now-husband scared the hell out of me that day in 1991, both because he wasn’t the type to wail and because he was suggesting that I do something pretty Kevorkianesque. In the eight months since he’d moved into my Connecticut house, I had never heard him raise his voice, much less beg for assisted suicide. Besides, I didn’t own a firearm, not even one of those benign-looking mini-revolvers you can carry around in your handbag like a BlackBerry. The one and only time I fired a gun was during a college fraternity party at a “gentleman’s farm” in Virginia. Everyone was taking part in something called skeet shooting, which, as a Jewess from Scarsdale, was as foreign to me as doing my own nails. My date showed me how to hold the rifle, I pulled the trigger, and I was blasted backward with such force that the hole in the ground is probably still there.
“Should I call an ambulance?” I said to Michael, not having a clue what I was supposed to do. I was a writer, not a doctor, and my nurturing skills were nonexistent. I didn’t have kids. I didn’t have pets. I didn’t even have plants except for polyester ones, and even they looked wilted.
All I knew was what Michael had told me early in our courtship (in the most offhand, who-cares way) that he had something called Crohn’s disease, which, I later learned, is an autoimmune disease of the gastrointestinal tract whose trademarks are—wait for it—abdominal pain, diarrhea, nausea, vomiting, rectal bleeding, intestinal blockage, osteoporosis, neuropathy, skin rashes, clubbing of the fingers, and severe depression. Since he had exhibited virtually none of the above atrocities and assured me that he’d been in remission for years, I paid little attention back then. We were in love, wildly attracted to each other, eager to be married and begin our sure-to-be-blissful future together.
Clearly, I was delusional.
“No ambulance!” yelled Michael. “Do you hear me?”
They could hear him in Azerbaijan.
He continued to thrash around on our living room sofa and I continued to circle him as if he were an explosive about to go off, and our housekeeper, an extremely focused Peruvian woman named Maria, continued to vacuum the carpet under our feet since it was her day to clean and I hadn’t canceled, due to the sudden onset of Michael’s condition.
“I’ll take your temperature again,” I said, feeling the need to do something, anything. I grabbed the thermometer and stuck it under his tongue. The verdict: his fever had spiked to 105.
“I’m so cold,” he said, shaking now, convulsing.
Enough was enough. Even a dip like me knew it was time to call 911.
As Maria and I waited for the EMT guys, I tried to figure out what, exactly, had happened to my beloved. It was his head that was killing him, not his gut, and he said he felt as if someone had broken his legs. The fever could be causing the head and body aches, but what was causing the fever?
And then it hit me: the pills he’d been taking for the past month. He’d gone to a new gastroenterologist who’d put him on a drug called 6-MP. Could he be having a reaction to the medication?
I offered up my theory to the EMT guys when they arrived. They nodded and called me “ma’am” and looked like a cross between firemen and backup dancers for Lady Gaga, but they were more interested in swaddling Michael in blankets and lifting him onto a gurney than in listening to my chatter.
I backed away, gave them space, and wondered what I’d gotten myself into.
Growing up with a mother who had nursed two sick husbands (my father had brain cancer, my stepfather had complications from epilepsy), I had vowed to marry for health—to avoid being saddled with a mate who would require me to become that most dreaded of all things: a caregiver. What I’m saying is that the last—I mean, the very last—thing I was looking for in a man was a medical flaw. I would rather have married a crocodile.
Not that I didn’t admire my m
other’s devotion as well as her lack of squeamishness when it came to seizures, bedpans, and vomit. (I had a thing about hurling—was terrified of doing it, being around someone doing it, even sitting through a movie in which someone was doing it.) I thought she was heroic, really I did, but I had no desire to follow in her footsteps. I had seen entirely too much dropping dead on the part of men and was looking for a guy who would hang around. When I met Michael, a tanned, lean, physically fit photographer who was so vigorous he had crewed on a 1920s schooner, sailed it to the Caribbean twice, and even survived a fall overboard into the Atlantic during a nor’easter, I said to myself, “Woohoo. Here’s a live one.”
So much for that, I thought now, as the gurney transporting Michael made its way down the stairs and out to our narrow street—at the very same moment that an extremely large van pulled up to the house.
“Heller residence?” the driver called out the window.
My heart lurched. I had completely forgotten about the boat—the do-it-yourself kit for a little woody dinghy that I’d ordered from Wooden Boat magazine as a surprise for Michael’s birthday. He’d been eyeing it for weeks and I couldn’t wait until it came. I just didn’t expect it to come while he was being carted off to an emergency room.
I jumped into the street and started directing traffic and tried not to have a nervous breakdown. I convinced the driver to unload the boat and leave it in the garage under Maria’s supervision, then climbed into the front seat of the ambulance, and sped away to the hospital.
Michael was in the back being “worked on,” and I kept craning my neck to check on him. And then I started crying—loud, heavy, ridiculously wet sobs—and blubbered, “Please tell me he’ll be all right.”
“Don’t worry,” said the ambulance driver, becoming the first person to utter what would become a lifetime of “Don’t worry’s.”
There was more fun to be had at the hospital. Since cell phones weren’t as commonplace as they are now (plus they were the size of suitcases), I had to call Michael’s gastro doc from a pay phone in the emergency room. I didn’t reach him, naturally, because he was a Very Important Doctor, but his resident took my call.
“Could it be a reaction to the 6-MP?” I asked.
“Doubtful.” He chuckled derisively, as if I’d just asked him if cigarettes were good for you. “It doesn’t present that way.”
“Well, it did present that way,” I said.
“Let’s see what happens when he’s off the drug,” he said.
What happened when Michael was off the drug was that I had been correct in my diagnosis: his fever vanished along with his body aches and it was, indeed, the 6-MP that had caused a reaction.
“Thanks for taking such good care of me,” Michael said as he was being discharged.
“No big deal,” I said, not in an attempt to be modest but because I wanted to block out the whole episode and go back to being a garden-variety woman in love.
Good try, Jane.
I had lost my caregiver virginity and there was no going back.
Crohn’s, it turned out, was hardly “no big deal.” Michael had been hospitalized nearly seventy-five times before I met him and was, in hospital parlance, “a frequent flier.” He’d had intestinal obstructions and complications from surgeries and, as if Crohn’s wasn’t nasty enough, he got kidney stones a lot—like often enough to gravel a driveway. Oh, and did I mention that all he did was vomit? If there were a reality show called American Hurler, he’d win by a landslide.
I was tempted to bolt upon learning all these tidbits. I was tempted to tell him to bolt. I was tempted to say, “Sorry, dude, but I’m not cut out to be the wife of a man with all your medical issues.” (Okay, I wouldn’t have used the word dude back then. I wouldn’t have used the word issues either; white men from Fairfield County weren’t dudes and issues were known as problems.)
I should add here that I’d been married twice before, speaking of bolting.
My first husband was a charming guy with whom I’d gone to high school. We were young. We played a lot of tennis at the country club where both our families were members. We invited other similarly overprivileged couples to our Manhattan apartment for fondue. We were divorced within a year because we both realized that we had merely entered into a Starter Marriage and there was no point in pretending otherwise.
My second husband was a grownup—a divorced professional with two young children and a sweet disposition. We got together during the Greed-Is-Good ’80s, built a 6,000-square-foot house in the suburbs, traveled to sprawling resorts of the type that offer villas with private “plunge pools,” and dressed well. When the stock market went bust, so did our marriage.
And then I met Michael, who didn’t have money but did have health (or so I thought). I predicted to anyone who’d listen, “Third time’s the charm.” What could possibly go wrong this time?
When I found out about his Crohn’s—really let it sink in that we were talking about a chronic illness that would not only never go away but would probably get worse—I saw my life flash before me. (For some reason, these life-flashing-before-me fantasies were like clips from classic Bette Davis movies; I would gaze at Michael and deliver a line from, say, Now, Voyager: “Oh, Jerry. Don’t let’s ask for the moon. We have the stars.”) I saw only tragedy and melodrama, with me as the long-suffering heroine.
But instead of bolting, I burrowed in. I suckered myself into thinking our romance was so special that our “happy vibes” would bolster his faulty immune system, that he would thrive once we were legally bound to each other, that love really would conquer all. And so, in the face of the evidence, I married him.
Over the next twenty years, Michael and I settled into a pattern. He’d suffer through his hospitalizations and/or surgeries (uncannily occurring over national holidays when doctors are playing golf in Palm Springs or skiing in Aspen or frolicking with their kids at Disneyland), and I’d be his stalwart helpmate. I’d drive him to various ERs while he barfed into garbage bags, sit in surgical waiting rooms listening to the life stories of people I’d never see again, and call concerned friends and family members as soon as I got home. To the outside world, I was a saint—my mother’s daughter. In private, I was cursing Michael for leaving me over and over again, resenting him for disrupting my work routine, hating him for depriving me of the kind of normalcy I was sure every other couple was enjoying.
Who was this person? One minute he was the handsome, gentle man I’d married; the next he was pumped up with steroids, bloated and moonfaced, screaming obscenities, and punching walls. One minute I was praying he wouldn’t die; the next I was hoping he would. He was the perennial patient, but—little did I know—his illness and my conflicted feelings were making me sick.
Okay, why is she telling us all this, you’re probably asking yourself if you’ve bothered to read this far? Or, perhaps, you’re asking: Does the world really need yet another book in support of the noble, compassionate, utterly frazzled people who care for loved ones with health problems? Don’t we already have dozens of titles on the subject—elegiac illness memoirs, thought-provoking treatises on death and dying, imposing reference volumes full of resources, not to mention perky self-help manuals that teach us how to clip our elderly, dementia-impaired parents’ toenails? And aren’t there a million websites and blogs that offer more advice than a caregiver could possibly have time to digest?
All very valid questions, and I’d be asking them myself.
So here’s why I wrote this book despite all the others out there:
∗ I wanted to add my two cents, chime into the conversation, move off the sidelines, because the subject is too important for me to remain a detached observer.
∗ I wanted to share my adventures in caregiving—what’s worked for me as well as the mistakes I’ve made—and enlist experts to show me (and you) how we can do things better.
∗ I wanted to help all of us take care of ourselves so we’re able to take care of those we love—fro
m how to get the proper exercise to how to get a decent night’s sleep. And, trust me, I’m not coming at this from some preachy, soap-boxy point of view. I used to roll my eyes at all the well-meaning people who kept telling me to stop neglecting my own health—until I could no longer ignore what was happening inside my body. I ended up going from caregiver to caregivee, thanks to several skin cancer surgeries and a hysterectomy, but I was lucky to have a spouse who was eager to switch places and take care of me for a change.
∗ I wanted to express (and encourage you to express) the emotions we all have when caring for a loved one but are often too guilt-ridden, fearful, or embarrassed to say what’s really on our minds.
∗ I wanted to reach out to other caregivers, including a few whose names you’ll recognize from movies, television, and publishing, and let them vent or offer inspiration or serve up a helpful tip or two. I’ve never joined a support group in all the years I’ve been a caregiver, so talking to them during the interviews they were generous enough to give has allowed me to feel as if I’ve started a little group of my own.
∗ I wanted to ask, “Is this normal?” in a variety of caregiving situations—and get the answers. Is it normal to be intimidated by doctors, to be flummoxed by the health-care system, to be mad at your sister, to wish you could rewind your life? How do we know what’s normal unless we have specialists to tell us? This book has specialists.
∗ I wanted you to laugh. No surprise there if you’ve ever read any of my novels, which are comedies and demonstrate my firm belief that humor gets us through even the bleakest hours. That’s where the title of this book comes from: the part of me that makes jokes. Whenever Michael would be wheeled into the operating room and one of the surgical nurses would stop the gurney just before it arrived at those scary-looking double doors, turn to me and advise, “Sorry, but you’ll have to say your goodbyes here,” a giant lump would form in my throat, tears would prick at my eyes, and instead of grabbing her by the collar of her blue scrubs and screeching, “No! Wait! Please don’t take my husband away!” I’d lower my face close to Michael’s, give him a kiss on the mouth, and crack, “You’d better not die or I’ll kill you.” He’d laugh and so would the nurse, and then off he’d go.
