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

by Jane Heller

  I didn’t respond to the e-mail that night, figuring I needed time to clear my head. I went back to the hospital to see Michael the next day. And because I was feeling guilty that I was obsessing about a man other than him, I said in the most blasé way, “I got an e-mail from Tom last night. Remember him?”

  “Not really,” he said while pressing the button that made the head of his bed go up and down, producing a buzz as annoying as a dental drill.

  “A guy I used to go out with,” I said over the din. Did my husband not care that it was Tom who had gotten in touch? He’d heard my stories. Not the details of trysts, naturally, just background stuff. I would have thought he’d be jealous that a man from my past had contacted me—or curious or furious or something. But he continued to play with the bed. “I should probably answer,” I went on. “It wouldn’t be nice to ignore him, right?”

  “Sure, whatever,” said Michael, thereby giving me permission to write back to my old boyfriend.

  I went home, sat down at the computer, and composed about 3,000 versions of “Hey, Tom. Great to hear from you.” I wanted to sound chirpy, upbeat, youthful, happy—as if my life had turned out so perfectly as to preclude any interest in him other than a friendship from afar. I settled on something like “Hey, Tom! What a surprise! Hope all’s well!” Lots of exclamation points for sure. I hit “send” and noticed that my palms were clammy and my heart was racing. I was like some hormonal teenager.

  About an hour later, another e-mail landed in my inbox, indicating how glad Tom was that I had responded. Then I wrote back. Then he wrote back. Then I wrote back. Then he wrote back. And so on.

  Our correspondence continued for a few days, and it was exhilarating and exhausting. Neither of us mentioned spouses or encumbrances of any kind. The subject was us—how sorry we were that we’d lost touch and how we really should get together sometime. I knew I was treading on dangerous ground, but I couldn’t help it.

  I hated myself for keeping the communication going even as I felt justified in doing it. It was glorious to have a man pay attention to me, not as the old ball and chain, not as the one who makes trips to the ER, not as the dependable caregiver, but as a woman. I had no intention of seeing Tom again, much less running away with him, but the flirting was addictive. It made me feel like a dried-up plant that had finally been watered. It invigorated me. I stood up straighter. I walked with a spring in my step. I had more energy to care for Michael. I was conflicted about what I was doing at the same time that I talked myself into believing it was okay.

  I should add that it wasn’t as if I had fallen out of love with my husband—quite the contrary—or that we weren’t still attracted to each other. It was just that he had a chronic illness and didn’t feel well enough to have sex on a regular basis. Our days and nights of relentless lovemaking were over, and the new reality was that we had to pick our moments. Flirting with Tom was merely a reminder that I wasn’t dead, that my needs weren’t dead. Wasn’t that a legitimate reason to keep doing it?

  Not after his next e-mail, which said: “We really should get together, Jane. When?”

  Game over. There could be no “when.” If I’d really wanted to be with Tom, I’d had ample opportunities over the years. Instead, I had chosen Michael. What’s more, it was the fantasy of Tom that had aroused me, not the flesh-and-blood person.

  Being married to a man with an illness presents many interesting challenges, and keeping romance and sex alive is among them. I asked a couple of my fellow caregivers how they felt about what can be a highly sensitive subject, and I thank them for being so open with me.

  Barbara Blank: “My husband has some dementia so our marriage is not what it used to be. I don’t look at him the same way that I did when he was someone I could be romantic with. Now it feels like I’m taking care of a child, and who feels romantic with a child? So that page has turned. Have I ever been tempted to be unfaithful? I’ve thought about what if. An old boyfriend called me out of the blue about a year ago. It was wonderful. He said, ‘I’ll come down to Florida and call you when I get there.’ He never did. A part of me was disappointed. But I don’t need that part of me anymore. After menopause it was finished, gone. I’m so glad I had all the good times I did, and if I took off my clothes I don’t think anybody would get nauseous. But I don’t look at that as my future.”

  Judy Hartnett: “Paul’s MS is the primary progressive kind, which means he is on a constant spiral downward and just keeps getting worse. The sex and romance and all of that are over because the intimacy is gone. And I’m sixty now and way past feeling desirable anymore. The ego that comes with flirting is so out of my life that I don’t even feel like I can flirt with somebody else. If I did flirt and somebody flirted back, where would that leave me? What’s bittersweet is when I see two people holding hands walking into a movie. I notice it right away and think: No one’s held my hand in awhile. I probably really hurt from that, because there’s nothing worse than feeling alone in a relationship. But it’s something that I really stay away from thinking about.”

  For Barbara and Judy, sex and romance aren’t on their radar anymore. But what about caregivers who still want both despite having husbands who are incapacitated? Is infidelity a legitimate option? Or is it just another type of self-medication, like drinking too much or taking pills?

  “With caregivers, you’re talking about people who are in a vulnerable state and need the validation that they’re not just the nurse,” said clinical psychologist Michael Seabaugh. “It all comes down to self-awareness. There’s no easy way to know whether a relationship is right other than you have consciousness and either say, ‘Oh, wow. That feels good,’ or ‘I’m too vulnerable. This isn’t who I am.’ I don’t make any moral judgments about people having affairs. If a couple consciously decides it would be good for them, fine. But once you open that door, you have to even be more conscious. And the thing about sex is that it has such a chemical reaction when you get together with somebody in the beginning. It’s a high. You don’t want to rob yourself of the pleasure of that, but you can start doing things that bring damage to others and that shouldn’t be the goal.”

  Psychotherapist Tina B. Tessina isn’t making any moral judgments either, because she agrees that the subject is a thorny one.

  “Often the person who needs care isn’t capable of sexual connection anymore, so I’ve had clients who’ve found other caregivers to have sex with,” she told me. “If it’s not hurting anybody and it’s helping the two of you and you’re not being obvious about it, it’s not necessarily a terrible thing. It might even make it possible to be more tender and loving with your partner. But you have to make peace with yourself about it. You can’t go into it feeling like the world’s worst person.”

  Tina says it’s not uncommon for caregivers to meet other caregivers in support groups and have an affair.

  “I’ve seen it happen a lot,” she told me. “They have that bond, that shared experience, and they can be kind to each other about it. People on the outside tend to be a lot more judgmental. The bottom line is we’re human beings. We have needs.”

  One of the members of our caregiver roundtable, Karen Prince, found romance with another caregiver after her husband, Andy, died. She sounds like a love-struck teenager when she talks about her new boyfriend.

  “He sounds like a teenager too and he’s seventy-eight!” she said with a giggle. “You should see the Valentine card he got me.”

  Karen met her guy at Cottage Hospital in Santa Barbara, where both she and Andy volunteered.

  “He used to come in all the time, so Andy and I both knew him,” she said. “He talked to us about his wife, who had MS. He took care of her for many years until she passed away two months before Andy did. I had no thoughts of him other than he was a friend who had lost his wife.”

  So what changed? Who made the first move? Did sparks fly right away? Inquiring minds wanted to know.

  “Once I decided to go back to the swim group after An
dy died, I found that he was playing volleyball there too,” said Karen. “He asked me if I’d like to go to lunch sometime to learn about each other a bit. We were just friends then, although in my mind I was hoping it was more than that.”

  Harold Schwartz, who lost his son to ALS and his wife to Parkinson’s, now has a girlfriend and seems ecstatic.

  “After my wife died people kept saying, ‘A lot of women will be after you. The word is out there,’ ” he told me. “I didn’t know what they were talking about and I wasn’t receptive. I was eighty years old and not ready to socialize that way. Finally, I called some friends and said, ‘Are you doing anything Friday night?’ They said, ‘As a matter of fact, we’re going out with a few couples and there’s one single woman.’ I went. I took the woman home and that was it. I told my friends, ‘Joan was very nice but I’m not ready to go out.’ ”

  Was it that Harold wanted more time to adjust to the idea of dating? Was he still grieving for his wife? Or was it simply that he needed the kind of nudge that women are so good at?

  “What happened,” he said, “was that Joan called and asked if I wanted to join her and a few friends for dinner. I said yes. We hit it off this time. We’ve been going together pretty much since then.”

  Linda Dano, on the other hand, says she can’t bring herself to think about other men; her love for her husband, Frank, is still so powerful.

  “Everybody wants me to date and I have zero interest, even though it’s been almost seven years,” she said. “When asked if I’m married, I say yes. In my mind I am. My friends say, ‘You’re so full of life. You shouldn’t be alone.’ They’re right. But my life is good. I just miss my husband.”

  I told Linda about a writer friend in California whose husband died several years ago. This friend doubted that she’d find love again, but thanks to Facebook, she began a communication with a man who lived on the East Coast. They discovered they had more in common than books, decided to meet and, soon after, fell in love. They were married a few months ago.

  “I never expected this,” said my friend. “But I’m so happy.”

  Caregivers deserve happiness anywhere they can find it.

  CHAPTER 24

  When to See a Shrink

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  “If your friend says, ‘I’m worried about you. You don’t seem like yourself,’ that’s a warning sign.”

  —TINA B. TESSINA, psychotherapist

  Therapists were all the rage when I lived in Manhattan in the ’70s and ’80s and worked in book publishing. There were the married therapists, Mildred Newman and Bernard Berkowitz, who wrote How to Be Your Own Best Friend. There was talk show therapist Wayne Dyer and his Your Erroneous Zones. And there was psychiatrist Thomas Harris whose I’m OK, You’re OK popularized something called “transactional analysis,” which sent legions of people back to the couch to talk about their childhoods. Shrinks were as prevalent in New York as a black wardrobe.

  I ventured into therapy after my first marriage broke up. I don’t remember being especially depressed about the divorce, although that might be revisionist history. I do remember spending a lot of time—years, in fact—sitting in therapists’ offices discussing my tendency to fall in love at the drop of a hat, my tendency to discard the old love object as soon as a new one presented itself, and my tendency to feel a tremendous amount of guilt over my conduct. In addition to getting to the bottom of all those tendencies, I uncovered my fear of abandonment, which resulted in my fear of losing control, which resulted in my fear of displeasing people, which resulted in my fear of telling my therapists I didn’t want to come back anymore.

  I thought it was all wildly sophisticated, if costly, and I learned a lot about myself.

  And then I went years without therapy and had a pretty smooth run on my own. It was only after I had married Michael and discovered that I was in over my head in the sick-husband department that I sought another couch with the accompanying box of Kleenex.

  My new therapist was a woman who spent less of our fifty-minute sessions delving into my childhood and more time helping me figure out how to balance my great love for Michael with the sacrifices his illness required. She didn’t prescribe medicine; she dispensed wisdom. She listened with empathy and said things that were practical and clear and made me feel that I could handle whatever came next. I wouldn’t hesitate to go back to her if I needed a tune-up. Don’t we all need somebody to talk to? Somebody who doesn’t have a vested interest in the outcome, who won’t judge us, who has the experience and expertise to give us good, solid advice?

  Michael has needed more than good advice over the course of our marriage. Like many patients with Crohn’s, he’s prone to depression.

  I remember the first time he sank into the pit because it took me by surprise and caused me to wonder if I’d walked onto the set of Invasion of the Body Snatchers. Michael still looked like Michael, still had his voice and his smell and his clothes, but he didn’t act like the guy who had written me poetry, framed his photographs for me, pulled me into his arms and kissed me for hours at a time.

  People didn’t talk about depression with the candor they do now, so I didn’t know what to make of what appeared to be his malaise and neither did he. He was just as baffled by the fact that he couldn’t get out of bed in the morning and went to sleep very early and lost his appetite, even for foods he loved; that he had no interest in reading, listening to music, or watching movies or television; that he never laughed, let alone smiled; that he was able to work but only in a robotic way; that he took no pleasure in me.

  “Do you still love me?” I asked one night when he was staring across the room, as if I really, truly didn’t exist.

  He turned to face me, expressionless. “I’m sure I still love you,” he said in a monotone. “I just don’t remember the feeling of loving you.”

  The words were a dagger in my heart. I was angry and hurt and ready to pack up and leave. But then an appointment with Michael’s gastroenterologist changed everything.

  “I think you’re clinically depressed,” the doctor told him at the end of the exam.

  “Me?” said Michael. “No, I’m just tired.”

  “You’re depressed,” said the doc. “Do you have thoughts of suicide?”

  Michael admitted that he did—another shocker. How could he want to end his life when we’d been so happy? Who was this person living inside my husband’s body and how were we supposed to get rid of him?

  The gastro doc referred Michael to a psychiatrist, who prescribed an antidepressant. The medication didn’t work, so he tried others. Meanwhile, Michael started to read up on depression and educated himself about it. He was heartened that there was actually a name and a diagnosis for what he’d been feeling (and not feeling). I was heartened too, and decided that a change of scenery would surely speed the healing process.

  Neither of us had ever been to Italy, so I booked a trip to Venice. Michael was a sailor who loved being on or near the water. Venice was just the place, I thought.

  I thought wrong.

  We stayed at a grand hotel. We took gondola rides. We bought Murano glass hurricane lamps. We drank Bellinis. What should have been a romantic adventure was a torturous experience for me. My husband was barely there. A store mannequin would have been more fun. I cursed my stupidity for dragging him across the ocean before he was up to it. Had I really believed he would just “snap out of it” if he walked among the pigeons in the piazza? But I learned some valuable lessons.

  ∗ You can’t make somebody snap out of a depression.

  ∗ You can’t take a depressed person to one of the world’s most romantic places and think it’ll be a love fest.

  ∗ You can’t fix people with a chronic illness, period.

  The shrink finally hit on the right drug for Michael a few months after our trip. Little by little, his fog lifted and he came back to me. He still has his gloomy episodes, but they’re brief and toothless; they don’t scare us anymore and we go abou
t our business.

  What does concern me is the high incidence of depression among caregivers. According to Suzanne Mintz’s organization, the National Family Caregivers Association, 40 to 70 percent of caregivers exhibit some form of clinical depression.

  The NFCA breaks it down:

  ∗ Family caregivers who provide care thirty-six or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety.

  ∗ Family caregiving spouses experience symptoms of depression or anxiety at a rate of six times higher than non-caregivers.

  ∗ Family caregivers caring for a parent experience symptoms of depression or anxiety at a rate that is twice as high as non-caregivers.

  Not good.

  I asked our caregivers if they’d ever sought professional help to deal with depression or anxiety. Their answers . . .

  Linda Dano: “It was at least a year after Frank died that I went for help, and it was just because all my friends were so sick of me. ‘Linda, you’re not getting any better,’ they’d say. ‘You need to talk to somebody.’ I didn’t want to get out of bed. I cried all the time. I felt morose. I had no energy. I had aches and pains. I thought about killing myself, but I’m Italian Catholic, so I couldn’t do it or else I wouldn’t see heaven. And I wouldn’t go on an antidepressant because I thought the only way I was going to survive this was if I survived it fully and did not mask it.

  “My therapist said, ‘Why not help yourself? Do you think it’s shameful to take a pill?’ I was like my father. I came from the school of ‘Stop that and you’ll be fine.’ But for the first time in my life I wasn’t fine and I knew it. And what’s more, I didn’t care that I wasn’t fine. After I started to take a pill, it was like, ‘Ah, okay now.’ It didn’t take away the truth of what happened. It didn’t make me go, ‘Frank who?’ But I could feel a little lighter. And then I stopped taking the pill for a while and had dips of depression. I said, ‘What are you doing, Linda? Trying to show how tough you are?’ I went back on it and then I was hired by Eli Lilly to be a spokesperson for their drug Cymbalta. Being out there and talking about it was tough in the beginning. But in the long run it was the best thing I could have done because it really did help me.”