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

by Jane Heller

  ∗ I wanted to give you a book that would be a pal for life, without judgment, without strings, without preexisting conditions—a book that you could pick up and read at any point, on any page, and find something useful. In other words, I wanted to be the cheery, knowledgeable companion I wish I’d had when I was sitting in Michael’s hospital rooms, sliding off those uncomfortable chairs, smelling hospital smells, hearing hospital sounds, feeling hopeless and alone and sorry for myself. There’s a chapter coming up about friendship—how people often drift away when a family member has a chronic or progressive illness. This book won’t drift away. It won’t stop calling or forget to ask how things are or say, “We must get together,” and then never follow up. It will be there for you whenever and wherever you need it.

  Sound like a plan? Good.

  CHAPTER 1

  What Is a Caregiver Anyway?

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  “I used to be cute before all this caregiving. Now I look like I’m a hundred.”

  —BARBARA BLANK, caregiver

  Here’s a little quiz. If you answer yes to any of the following questions, you’re officially a caregiver and I salute you. Well, maybe a salute doesn’t do us justice; we should probably have a secret handshake—something cool where we slide our palms together, grab hold of our thumbs, and finish up with a fist bump.

  ∗ Have you ever said the words “I can’t take it anymore?” More than once, in fact?

  ∗ Have you fantasized about flying to Fiji—by yourself?

  ∗ Have you spent an inordinate amount of time engaged in imaginary conversations with doctors in which you ask all the things you intended to ask but didn’t?

  ∗ Have you fallen asleep at your desk, snapped at someone in a supermarket checkout line, or cried in the bathroom?

  ∗ Have you had the thought: “I should be getting paid for this?”

  ∗ Have you looked in the mirror and wondered if you’ve always had those craters under your eyes?

  ∗ Have you jumped when the phone rang and actually felt relieved when it was a telemarketer?

  ∗ Have you worn enough Purell to disinfect an entire third world country?

  ∗ Have you said about a hospital cafeteria: “Why are the trays always wet?” Or: “That chicken gumbo wasn’t as bad as it looked.” Or: “Does Melba toast still have to taste like cardboard after all these years?”

  ∗ Have you worked up a nice, simmering resentment toward a sister or brother who tends to leave all the heavy lifting to you? Or, conversely, have you been weighted down by guilt because you aren’t the daughter/son who lives in the same town as Mom or Dad?

  ∗ Have you wondered why the patient in the bed or room next door to your beloved always has the TV on too loud, not to mention tuned to The Price Is Right?

  ∗ Have you gotten tired of people telling you to “hang in there”?

  ∗ Has your heart swelled with affection for a nurse or an aide who acknowledged your existence?

  ∗ Have you made a morning vow to get more exercise—only to slip into bed at night and say hopefully, “Maybe tomorrow”?

  ∗ Has your upper lip ever started twitching for no apparent reason?

  ∗ Have you told yourself it’s okay to eat that entire bag of Doritos Nacho Cheese Flavored Tortilla Chips in one sitting because you’ve “earned it”?

  ∗ Are you on a first-name basis with the guy at the pharmacy?

  ∗ Do you yearn for the days when your loved one was healthy enough to piss you off?

  So tell me: How’d you do on the quiz? Did anything on the list ring a bell? At least one thing?

  I bet you’re nodding. The point I’d like to make here is that caregivers—no matter what our backgrounds and circumstances—have a lot in common. I find that very comforting. I like that we’re all in this together. I feel heartened that, while we all want what’s best for our loved ones, would move mountains on their behalf, and feel tremendously grateful for the time we’re able to spend getting to know them in ways we’d never experience if they weren’t sick, we can still say without the slightest hesitation, “Man, is this the pits or what?”

  So yes, caregivers share a mindset. On the other hand, we come in all shapes and sizes and there’s no one single definition; the term is and should be broad.

  Some people care for a spouse or life partner.

  Some people care for a child.

  Some people care for a dear friend or neighbor.

  Some people care for an elderly parent or relative.

  Some people are on the scene 24/7 with sole responsibility for care.

  Some people are on the scene with assistance from a professional companion or health-care worker.

  Some people are long-distance caregivers who do what they can from afar.

  Some people care for a parent and children simultaneously and are part of the so-called “sandwich generation.”

  Some people are pressed into service in fits and starts, the result of the patient’s flare-ups during the course of a chronic illness.

  Some people are called upon to serve suddenly and dramatically, following an accident or unexpected crisis.

  Some people are simply Good Samaritans who want to help whenever there is a need.

  Some people are taking care of someone with a terminal illness.

  Some people are riding out a medical condition that will improve over time.

  There’s no story that’s “worse” than another; caregiving is not a competitive sport. I like that part too—that we don’t have to play, “Can you top this?” We each appreciate what the other is going through.

  There are many ways to be a caregiver, in other words, and there are many of us who fill the role—65 million of us in the United States alone, according to the National Family Caregivers Association, which means that 29 percent of the adult population is walking around stretched and pulled in all directions. I’m glad there’s a name for us now, because there was a time when it wasn’t even in the lexicon.

  Take my mother, for instance. My father died of brain cancer when I was six, but what I remember most about my early years was how normal they seemed in some ways. My mother got me and my sister off to school on time, arranged our play dates with friends, and sent us to summer camp, where we learned how to make potholders and ashtrays and whistle lanyards—all while my father suffered one medical crisis after another. She “juggled well” is what people said about her, since this was the 1950s, when there were euphemisms for just about every sort of unpleasantness.

  And then he died and she fell apart. She became convinced that she, too, had a brain tumor, only to be told by each doctor she consulted that she was exhausted from years of looking after my father. She was suffering from a classic case of “caregiver burnout,” another term nobody used back in the day.

  Three years later, she met and eventually married my stepfather, a widower with four kids. He was the picture of health—a strapping, broad-shouldered former collegiate track-and-field star who happened to have epilepsy. At first there were merely the seizure-related mishaps—a broken jaw, a cracked rib, reactions to medications. Then came more serious complications and a long, steady decline. My mother remained in caregiver mode through it all—even as she raised four stepchildren along with my sister and me and worked part time as a professor of Greek and Latin. After he died, she felt lost again. Care-giving had been her “job,” her purpose. She was almost too good at juggling.

  There was no appropriate term for me either when Michael was hospitalized with an intestinal obstruction in the early ’90s—the first such episode since we’d been together.

  “Are you his wife?” asked the nurses, the doctors, the insurance lady, even the guy who came to draw his blood.

  “Girlfriend,” I’d tell them all and wait for The Look. I was the only one there, the only one who stuck around, the only one who contacted his siblings and brought him his boating magazines and helped him figure out how to work the arcane TV remote—and yet
“girlfriend” didn’t cut it, judging by their air of dismissal. I might as well have said I was a hooker he’d picked up off the street. (Important note: The role of girlfriend is perfectly respectable nowadays and you can be thoroughly in charge of your loved one’s care—provided you are so designated in a power of attorney document.)

  The fact that I lacked a suitable title really rattled cages when I appeared at the hospital outside of permitted visiting hours. Girlfriends weren’t considered immediate family back then, so there were times when I had to muscle my way in.

  “What are you doing here?” a nurse asked when I showed up in Michael’s room one morning before seven.

  “Visiting the patient,” I said.

  “Are you his wife?”

  “No.”

  “Sister?”

  “Nope.”

  “Then you shouldn’t be here.”

  “Let me ask you something,” I said, trying to remain calm and polite. “Do you want him pressing the ‘call’ button every six seconds? Or would it make your life easier if I handled the simple chores?”

  She scowled, put her hands on her ample hips. She was a boxy woman with a not-so-faint-mustache, and I could easily picture her serving as a prison warden. “Rules are rules, and—”

  “Let me ask you something else,” I interrupted, figuring a new tactic was in order. “Have you ever been in love?”

  “Excuse me?”

  “In love. You know.”

  Her expression softened. “As a matter of fact, I’m getting married in three months.”

  “Congratulations!” I said, reaching for her hand and pumping it vigorously. “Have you picked out your dress?”

  Well, that did it. Get a woman talking about her wedding and she forgets to be mad at you.

  She described the dress, the bridesmaids’ dresses, the flowers, the cake, blah blah blah. She was my new best friend and by the time she left I could have shown up at the crack of dawn and it would have been okay.

  Not that I was always so charming. During that same hospital stint, I had asked Michael if he’d be okay without me for a day. The two-hour drive between Connecticut and Manhattan was wearing me down and I was desperate to get back to the novel I was writing, not to mention have some quiet time to myself. He said he understood and I was grateful.

  About two hours into my solitude, I called him to check in.

  “Everything okay there?” I asked.

  “I’m really cold,” said Michael, his voice tremulous, near tears.

  “What do you mean, ‘You’re really cold’?” I said, assuming he was just “in a mood.” He was on high doses of medication, including prednisone, and his emotions were all over the place.

  “I can’t get anyone to give me a blanket and it’s freezing in here. I pressed the call button for the nurses, but no one will help me.”

  It’s a cliché to write, “Smoke came out of my ears,” but that’s exactly what I felt like when he said that: mad enough to breathe fire. Michael is the antithesis of a complainer; he could be bleeding from his eyeballs and he’d tell you he was fine.

  “I’ll be right there,” I said.

  I made it to the city in record time. I parked near the hospital, marched inside, rode up in the elevator to Michael’s room, and found him in bed with his pathetic blue windbreaker draped over his shivering body. Oh, and he was right about the temperature: it was a meat locker in there.

  “Give me a sec,” I told him and stomped into the hall to the nurses’ station. Have you seen the movie Terms of Endearment? If so, remember when Shirley MacLaine had a meltdown, demanding that somebody give Debra Winger her pain meds? Well, I pulled a Shirley.

  “Can somebody give my boyfriend a goddamn blanket?” I yelled, as a handful of nurses stared at me. They looked frightened. I felt ashamed.

  “I’m sorry.” I began again, less noisily this time. “I realize you’re busy and this isn’t on the level of a Code Blue, but I shouldn’t have to drive two hours to ask one of you to stop ignoring your patient, who has asked several times for a blanket and not gotten one.”

  Michael got a blanket. Actually, he got three blankets. And more ice chips for his dry mouth, a fresh box of tissues, and a lot of plumping of pillows and adjusting of his bed.

  I wasn’t proud of my tone or my language or of having to raise my voice, but there are times when you can’t help yourself if you’re a caregiver. Which is what, even though the term wasn’t in widespread usage yet, is exactly what I was.

  Over the course of writing this book, I’ve talked to other caregivers whose specific experiences are very different from my own but whose emotions, thoughts, and knack for finding humor in even the grimmest circumstances have mirrored mine. I think of them now as members of the book’s Greek chorus—and as my support group. Let me introduce them.

  Yudi Bennett, CA: A former award-winning assistant director in Hollywood whose credits include Kramer vs. Kramer and Broadcast News, Yudi is now a single mother and caregiver to her autistic son after having lost her husband to lymphoma.

  Barbara Blank, FL: Barbara is the primary caregiver for her ninety-six-year-old father, who lived with her before moving recently into a nearby seniors’ community. Additionally, her husband suffers from hearing impairment and dementia.

  Harriet Brown, NY: A prolific writer and editor, Harriet chronicled her daughter’s struggle with anorexia and her family’s hands-on approach to caregiving in her critically acclaimed book Brave Girl Eating.

  Linda Dano, CT: The Daytime Emmy Award–winning actress, talk-show host, and designer of home accessories on QVC, Linda has seen her share of tragedy. She became the caregiver for her father (Alzheimer’s), her mother (dementia), and her husband (lung cancer), and has toured extensively to raise awareness about caregiving and depression.

  Jennifer DuBois, VA: Jennifer took a leave of absence from her job as a corporate communications specialist to take charge of the care for her mother, who was dying of bone cancer.

  Victor Garber, NY: The versatile Emmy Award–winning star of stage and screen, Victor had two parents with Alzheimer’s. He served as the primary caregiver for his mother while he was in L.A. garnering fans and accolades on the hit TV series Alias.

  John Goodman, NY: John’s world changed when his wife of many years was suddenly diagnosed with the rarely understood Cushing’s syndrome and he was catapulted into the role of caregiver.

  Judy Hartnett, FL: Judy was no stranger to challenges, having become the stepmother to her husband’s young children when they were first married, but nothing prepared her for her role as his primary caregiver when he was diagnosed with MS.

  Deborah Hutchison, CA: A film producer and author, Deborah was called to action when her mother was diagnosed with Alzheimer’s, and she became her mom’s primary caregiver. She wrote the innovative and much-needed book Put It in Writing: Creating Agreements Between Family and Friends, which includes the agreement “Caring for Our Aging Parents.”

  Michael Lindenmayer, IL: Michael took a year’s sabbatical from his business ventures to help his worn-out parents care for his elderly grandfather. After experiencing the challenges care-givers face, he created the Caregiver Relief Fund, which provides four hours of respite to deserving applicants.

  Suzanne Mintz, MD: The diagnosis of her husband’s MS and her experiences caring for him motivated Suzanne to cofound a newsletter for caregivers that eventually grew into the National Family Caregivers Association (NFCA), one of the nation’s go-to resources for education, support, and advocacy.

  Jeanne Phillips, CA: Jeanne took over the writing of Dear Abby, the world’s most widely syndicated column, when her mother, Pauline Phillips, also known as Abigail Van Buren, was diagnosed with Alzheimer’s. She reaches out personally to those who write to the column asking for help with an Alzheimer’s patient.

  Suzanne Preisler, NY: When her younger sister was diagnosed with ovarian cancer, Suzanne became her caregiver and most ardent champion, seeing her thr
ough a successful ten-year battle. She was called upon again when she learned that her mother had pancreatic cancer.

  Karen Prince, CA: Karen’s husband suffered a massive stroke in his forties. Despite his inability to walk or talk, she not only took care of him but also moved them both across the country to California, where they lived for years until he succumbed to lung cancer.

  April Rudin, NJ: A busy mother of two children, April nevertheless shared primary caregiving responsibilities with her sister for their beloved grandmother, who lived 3,000 miles away and had Alzheimer’s. She made frequent trips across the country to handle all medical issues.

  Harold Schwartz, FL: Harold’s son was in the prime of his life when he was diagnosed with ALS. Harold handled the caregiving on weekends and marveled at how his son never lost hope. He then cared for his wife, who suffered from Parkinson’s.

  Toni Sherman, CA: When her daughter contracted a serious foot infection, Toni took care not only of her child but also of her child’s children. Soon after, Toni’s mother received a diagnosis of peritoneal cancer, and her caregiving duties doubled.

  John Shore, CA: Christian blogger, humorist, and author of Penguins, Pain and the Whole Shebang, John had a turbulent relationship with his father, from whom he was estranged. But that didn’t stop him from moving into his dad’s house and assuming the role of caregiver when his father needed help after a stroke.

  Diane Sylvester, Cissy Ross, Jackie Walsh, and Cecilia Johnston, CA: This group of remarkable women met while their mothers (and Cecilia’s father) were all residents of the Samarkand, a seniors’ community in Santa Barbara, and bonded over their caregiving experiences. Diane’s mother suffered from depression and dementia. Cissy’s mother lost her ability to speak after a series of neurological problems. Jackie’s mother had severe macular degeneration, fell and broke her hip, and suffered a stroke. Cecilia’s mother, the only surviving mom of the four, has Alzheimer’s.