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

by Jane Heller

  Every member of my new support group will be offering up some of what they’ve felt, thought, and learned over the years since they were tagged with the responsibility of caring for a loved one. They are wise, resourceful, funny, and courageous, and have managed to find silver linings in their darkest moments. I salute them—and give them a fist bump.

  CHAPTER 2

  Navigating Past the Freak-Out

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  “You need your freak-outs. But you can’t make decisions and freak out at the same time.”

  —TINA B. TESSINA, psychotherapist

  Inevitably, there will be a phone call or a test result or an encounter with a grim-faced doctor—all conveying bad news about your loved one’s health.

  Not to state the obvious but bad news sucks. It plunges you into despair. It knocks out all sense of hope and possibility. It makes you wish it were all a crappy dream and you’d wake up and everything would be super-fabulous again. But here’s what I have to say about bad news: although it will change your life in ways no one in their right mind would sign up for, it will also make you stronger. (Yes, that sentence borders on intellectual pabulum, but it’s true.) Bad news will rehearse you, fortify you, steel you for the next time it comes along, and, just possibly, you’ll do a better job of handling it. That’s been the case with me, anyway.

  As an inexperienced caregiver, I used to freak out whenever there was bad news about Michael. I let my emotions spill forth without any regard to how my behavior might affect him. I had no ability to stifle myself. I was operatic in my wailing, wildly irrational in my reactions—a certifiable drama queen.

  The best way to get over being a hysteric when crises arise is to recognize that you’re being a hysteric, and I wasn’t able to do that early in my relationship with Michael.

  Take the time his gastroenterologist punctured his colon during a colonoscopy: I had gone with him to the doctor’s office in Manhattan to wait during the procedure and take him home afterward. What did I know from colonoscopies back then? This was pre–Today show Katie Couric. I’d never heard of people having a TV camera jammed up their derriere.

  “Routine thing to check for polyps,” Michael told me.

  If you say so, I thought. I’ll bring a book and sit there for twenty minutes.

  An hour later, Michael emerged looking like death. I’d describe his color as a shade somewhere between milk and the GEICO lizard.

  “What’s wrong?” I said as I helped him out the door.

  “I’m in a lot of pain,” he said, clutching his abdomen.

  We drove home to Connecticut. His pain worsened. He called the doctor. The result? Back to the city—and to the hospital.

  “You told me it was a routine procedure!” I said accusingly, as if Michael had betrayed me with all his nonchalance. I had fallen in love with him for many reasons, one of which was his low-key, soft-spoken manner. Now, that very same lowkeyness was confusing me.

  “It’s routine if you don’t have Crohn’s,” he clarified. “I had fifteen years of prednisone therapy, which can cause a thinning of the intestines.”

  He was so sweet, so forgiving. I, on the other hand, was poised to stab the doctor in the testicles.

  The plan was to put Michael on antibiotics and “wait and see.”

  “Wait and see what?” I said too loudly into the phone when the God of Gastroenterology called Michael’s hospital room. That’s how we referred to him, because he was such a big shot in his field. Sometimes we shortened the nickname to GOG.

  “See if the puncture will heal on its own,” said the GOG.

  “What if it doesn’t?” I asked. The word “puncture” sounded so violent, so destructive. And we were talking about one of Michael’s vital organs, after all.

  “Then we’ll just do an ileostomy,” he said.

  I blinked a few times, making sure I’d heard him correctly. I had no idea what he was talking about, but anything ending in ostomy couldn’t be good, could it?

  “We make an incision through the abdominal wall into the ileum,” he went on, “so that waste can be discharged through the body without passing through the colon, enabling it to rest.”

  “Are you suggesting surgery?” I said, my anxiety rising. How had a run-of-the-mill colonoscopy turned into something so scary?

  “We bring the ileum to the surface of the abdomen, creating a stoma.”

  “Okay, I need you to speak English now.”

  He sighed, as if he couldn’t believe he’d been dragged into a conversation with someone so hopelessly uninformed. “The ileum is the small intestine and a stoma is an opening. We attach a plastic bag to the stoma in order to catch the waste.”

  “A plastic bag?”

  I didn’t even try not to go nuts. In that moment I was incapable of processing the bulletin that my boyfriend, the man I was going to marry, was about to live his life wearing a Hefty CinchSak attached to his stomach.

  “It’ll be temporary,” said the GOG in a way that was probably intended to reassure me. “Just three months—until the colon is completely healed and functioning.”

  I couldn’t speak. I had started to cry.

  “And today’s ostomy bags are very user-friendly,” he continued. “They come in two kinds: one has a Velcro-type closure that allows the waste to be emptied into the toilet; the other is close-ended and must be replaced each time it’s full, like a vacuum cleaner bag. Both come with charcoal-filtered vents so that when the patient has gas, the pouches will inflate, which prevents ballooning, particularly at night. As for leakage, it can be a problem, but the newer products do a much better job of containing the fecal matter. Any more questions?”

  Yeah, like what time is the first plane out of here?

  I mean come on. I was in shock. I realize that there are many people living active, extremely productive lives in spite of wearing a bag, but the notion was just not within my frame of reference. I kept picturing Jon Voight in the movie Coming Home. Remember the scene in the beginning when his bag of urine explodes all over the place with Jane Fonda looking on? And then there were the images dancing around in my head of the wedding Michael and I were planning—a wedding that could easily turn into a nightmare. We would be standing up at the altar, dressed in white, holding hands, gazing adoringly into each other’s eyes, about to say our vows in front of our family and friends, when suddenly he would have “leakage.” Oh, God.

  “I can’t believe this,” I said between sobs. “I just can’t.”

  “I don’t know why you’re so upset,” said the doctor. “It’s not that big a deal.”

  “It is so!” I said hotly and proceeded to sob some more. “You just don’t understand!”

  Yes, I was a hysteric on that occasion, and it helped no one. The good news is that Michael’s colon healed quickly, requiring none of the measures the doctor had described so winningly. He was out of the hospital within days and we were married on a crisp fall afternoon in Connecticut without leakage or seepage or any other discharging of bodily fluids.

  Fast forward six years, during which there had been numerous trips to the ER as a result of Michael’s Crohn’s. I had become more and more competent in my caregiving skills once I finally came to terms with the fact that my fears, my disappointments, my tears were not doing him any favors. He needed me and I needed to be fully in control—for him.

  We had moved to South Florida by this time and he was recovering at home after surgery for an intestinal blockage. At five a.m., he woke me, holding his gut, and said, “Can you take me to the hospital—now?”

  I was still groggy, but there was no mistaking that his incision had sprung a leak; something was definitely and disgustingly oozing from between the stitches.

  I threw on some clothes, bundled Michael up in a raincoat, and off we went to the hospital. The surgeon on call was practically out the door, having ended his shift, and didn’t look too pleased to have to deal with one more case. He was very preppy in his Ralph Lauren shirt,
khakis, and tasseled loafers, and he announced that he had an early tee time to get to.

  “Your husband has an infection,” he told me as we stood over the patient in a little cubicle in the ER. “I need to go in, clean it out, and sew him up.”

  “So you’ll take him to surgery,” I said. It wasn’t a question.

  He glanced at his watch and shook his head. “We’ll do it right here. It’ll be quicker.”

  The old me would have exploded. This guy was in such a hurry to chase a little white ball around a golf course? But he was the one in charge and he had already called for a nurse to assist and we were rolling. Not that he bothered to put on scrubs or a lab coat. He was going ahead in his Polo best. “Is it okay if I stay?” I asked.

  He laughed. “If you don’t faint at the sight of a man’s belly being filleted.”

  “I can take it if you can,” I said in what I thought was a very snappy retort. I had no idea if I could take it, but we were about to find out.

  I grabbed Michael’s hand and squeezed it as the surgeon began to wield his scalpel. Oh, did I mention that the morphine drip in the IV hadn’t kicked in yet and that my husband was screaming his lungs out—all because Tiger Woods was on the clock?

  “Can’t you wait for his pain medicine to work?” I said, hating to see Michael in such agony.

  “He’ll be fine,” said Tiger as he went about his business.

  His “business,” of course, was to operate on Michael’s abdomen, and he seemed to be doing it skillfully. How do I know? I watched every gory second of the surgery. That’s right. I stared down into my beloved’s gaping wound without flinching, fainting, or hurling. I just kept squeezing his hand, whispering that everything would be all right, and ticking off all the fun things we’d do when he was feeling better.

  At one surreal point, I sort of stepped outside of my body and said to myself, “Who are you and what have you done with Jane?”

  I guess what I’m saying is that the more you stare into the abyss, the easier it gets. Okay, not “easier.” It’s never easy. But what’s the choice? You have to learn to get your act together—for everybody’s sake.

  I asked a few of my fellow caregivers how they handled the test result/phone call/horrendous diagnosis when they were confronted with it. As you can see, freaking out even a little is perfectly natural, normal, and healthy, and you’d have to be a complete blockhead not to feel like doing it.

  Yudi Bennett: “At age two and a half, my son Noah suddenly stopped talking. He went from a kid who was babbling and said, ‘Mom’ to a kid who could only say, ‘Mmm.’ We became very alarmed and took him to a speech therapist who said, ‘He’s definitely not autistic. He just has a language delay.’ It took five doctors until we got one we could trust because people just weren’t trained in those days and pediatricians didn’t have a clue.

  “Finally he was diagnosed by a really wonderful psychologist. I sat down and cried for two weeks. My first thought was, who will take care of him when I’m not around? I was not a young mom at forty-four. I also remembered how my husband, Bob, and I would kid around when I was pregnant about where our child would go to college, what he’d be when he grew up, would he have my art genes or Bob’s literary genes. You do a lot of fantasizing. After we got the diagnosis I kept saying, ‘Nothing is going to be the way we thought it was. Everything has changed.’ And I was right.

  “It was different with Bob’s lymphoma. He went in for surgery to remove his spleen, because they knew he had tumors but they didn’t know what kind. I was sitting in the waiting room and doctors were coming out and talking to people. But the doctor who operated on Bob took me into a private room. That’s when I knew the tumors were malignant and my heart sank. We were then referred to an oncologist who said, ‘This type of cancer is very aggressive but eighty percent of the time it’s curable with chemotherapy.’ We thought eighty percent was great, so I didn’t cry for two weeks this time. I hoped the cancer would have a beginning, a middle, and an end, unlike Noah’s special needs, which is a lifelong thing.”

  Harriet Brown: “Our daughter Kitty had just turned fourteen and she’s our oldest so we didn’t really know what it was going to look like to have a teenager. She was staying away from dessert and she was an athlete, doing gymnastics and exercising a lot. Within that context it looked positive to us. But I had been worried about her being a little too thin. She never really lost a bunch of weight at once. It was more that she didn’t gain weight when she should have. And then I started to notice behaviors around eating and pretty much knew it had to be anorexia at that point. Still, it took a while for her to be diagnosed and that was partly my fault. I think if I had told the doctors, ‘We really need to see you right now,’ they would have gotten us in sooner. It was sort of like, ‘I don’t really want to see this. La la la. Put my fingers in my ears.’

  “I think all families are in denial at first. As parents you just don’t want it to be true. By the time we did go to the doctor for the diagnosis, we all pretty much knew it. I didn’t freak out because I was fairly ignorant about eating disorders. I figured, well, here we are. We loved our doctor. She was great. But I started to panic when I realized she didn’t have any real help for us. Nobody had any real, solid, proven help for us. I realized at a certain point, My God. We’re in this kind of on our own. She told me flat out, ‘I’ve never had a kid this sick before.’ She was out there looking for information and we were out there looking for information, and nobody was driving the bus. That was very scary.”

  Linda Dano: “I had no idea my father had Alzheimer’s—none. My husband, Frank, and I had decided my parents would come and live with us. Since I was working on Another World, Frank went to California to bring them to New York. My father and mother got on that plane and my father went crazy. He punched Frank in the face, cut open his lip. Within three days I started living a Stephen King story.

  “I didn’t know it at the time, but if you move an Alzheimer’s patient, they fall off the end of the earth. My father tore the apartment apart. He choked my mother. He fell. We got him to the emergency room at Mount Sinai and they had to put him in restraints. Now this was my John Wayne, and yet there he lay—wrestling and fighting and yelling. It went downhill from there. He was admitted into the psych ward. He was there for a week and a half and then stopped eating. I was told he needed a feeding tube. They kept saying I’d be a bad daughter if I let him go that way. I didn’t know what to do and my mother had turned the whole thing over to me, so I was legally in charge. I gave him the feeding tube. Still, no one ever said he had Alzheimer’s.

  “He finally got diagnosed because I had done a talk show and one of the guests was a Dr. Butler, head of geriatrics at Mount Sinai. One night I sat up in bed and said, ‘Frank! Let’s call Dr. Butler.’ And we did. The next morning I met him at Mount Sinai and he said, ‘Your father has Alzheimer’s,’ and he explained what it was. I freaked out because I would never ever have given him the feeding tube if I’d known.

  “A few years after he died, my mother changed. There was a distance about her. She’d had tiny strokes over the years, but they would happen and go away. This was different. She was walking and talking but she wasn’t making a lot of sense. We ran all these tests and she had dementia, not Alzheimer’s. I was completely in control this time. I knew what to do to take care of her.

  “Then came Frank’s diagnosis. I had stopped working and had promised I would go to Normandy with him. I was free. We had money. We were going to travel. And it all came crashing down. It started with laryngitis. He had a CAT scan and they found this mass right next to his aorta. I started to cry. I was so afraid. When somebody says to you, ‘Your husband has stage four lung cancer,’ you know what that means unless you’re a moron. He was everything to me. He filled every little nook and cranny of my life. My world spun in front of me.”

  Jennifer DuBois: “My mom started out with some low back pain and she thought it was sciatica. She went to the doctor and they had
her do physical therapy for six weeks and nothing was helping. Finally they sent her in for an MRI. That’s when they looked at her lower back and said, ‘This doesn’t look good.’ They knew they weren’t dealing with simple sciatica but something much worse. They went in and did a bone biopsy. That’s when they found the cancer in her bones, which had metastasized from somewhere else; they never found the original site, but they could tell it was consistent with lung cancer that had metastasized.

  “It was my father who called me with the diagnosis. I was at the Hotel Sofitel in Miami. Hurricane Katrina was heading our way and we had no electricity. I was on storm duty for the company I worked for. My dad called my cell phone and told me the news, and I was in shock. My mother was the picture of health at sixty-five. She worked out. She ate right. It just didn’t sink in, and I didn’t realize it was terminal. It took a couple of days for me to really understand, for it to become real.”

  Victor Garber: “My mother was living in Los Angeles on her own in a one-bedroom apartment in West Hollywood. When I got a job on Alias, I arrived from New York and she was okay. She was functioning. I wasn’t aware of any problems. She and my father had been divorced for years and she was basically living week-to-week, off Social Security, and working part time.

  “One day she said, ‘I don’t think I can do this job for much longer.’ I said, ‘Why?’ She said, ‘I’m starting to forget things and I had a very embarrassing day.’ She had missed an appointment and misplaced something and she was very, very upset. I said, ‘Well, Mom, if it’s too much you’ll find something less stressful and don’t worry about it.’ But I could tell that something was happening. There was a sign, a red flag. So she left that job and for the next year or so it got to the point where she couldn’t work.

  “She was seeing a therapist, a very nice guy, and one day we went to see him together because by that time I knew something was really off. The therapist said to her, ‘You exhibit all the signs of Alzheimer’s.’ Like always, she was slightly in denial and didn’t really believe it. She said, ‘Oh? Really?’ I knew it was the beginning of a terrible journey.”