Advice for Future Corpses_and Those Who Love Them

by Sallie Tisdale

  Knowing these things is half the battle. The other half is watching and working with what happens.

  A person who is ill may try to trigger your reactions. People may be testing whether you can handle talking about a difficult subject. Good listening goes a long way toward showing acceptance, and so does an open posture. Don’t stand over a person in bed or bustle around when they’re talking. Settle down, relax, keep your posture open, and try not to touch or brush away the difficulties. You might feel a powerful urge to soothe painful feelings, to cover up. Don’t change the subject.

  If there is a topic you absolutely cannot discuss, make that clear. Can you be still while a person cries? Don’t put a person in the difficult position of upsetting his caregiver. Don’t hide all your feelings under a bushel, but be a grown-up and manage your grown-up pain.

  A person overwhelmed with illness may displace difficult feelings and shift attention away from the problem she is afraid to face. The big problem at hand. The ego is often about seven years old and prone to distractions when uncomfortable, like a kid who spills his milk just as you ask whether his chores are done. Adaptation takes many forms. Some people rationalize destructive behavior, ignore consequences. Some people will regress under stress, reverting to behaviors they used when they were much younger, refusing to take responsibility and looking for another person to act as the adult. There’s nothing inherently wrong with that; we all like someone else to be the adult sometimes. Just notice if it’s a pattern, and be careful. Watch the urge to become parental under stress, to take charge and try to manage the situation. Taking charge protects you from having to feel helpless, but may not be what the person really needs.

  Balance affect. If the person is hurried and talkative, you can speak slowly and listen. If they are withdrawn, you can start by doing the talking. If they are pacing, sit still. Notice incongruence. Is the person smiling while they tell a sad story? Are they clenching their fists when they say everything is fine? Dying tends to create incongruent feelings. You don’t have to challenge this. The person is working things out. Just be congruent in yourself. Don’t be afraid to cry a little sometimes; that’s congruent.

  One way I might manage the hardest parts of being sick is to intellectualize my feelings. Perhaps I talk about the kind and brand of walker I want and ask you to check on prices. But I never say how it feels to need a walker (or a burial shroud). I may complain about how long it takes you to bring me lunch because I don’t want you to notice that I need help getting up from my chair. I don’t want to notice it, either. If I get angry at you for being late, I can briefly forget how it feels to need your help in the first place. Humans deflect when things hurt, and we are quick to project our struggles onto other people, using another as a kind of surrogate. I may talk about how Uncle Mario needs to use a walker now. I’m not just distracting you; I’m also testing you. I’m learning important information on how you feel about people who need walkers.

  What not to say: Don’t talk like that. Let’s just talk about something happy. One of the most common ways we defend ourselves is by denial. We may simply deny that what we’ve been told is true. Things not to say: My mother’s biopsy was negative. You look fine. Are you sure you’re sick? Denial is normal, but notice your own. A dying person may deny the truth for a long time. How often do we deny another’s denial? How often do we try to drag a person to the place we think they should be, instead of meeting a person where he or she is? This is where open-ended responses help so much. Reflect what you hear. Ask for more detail. Ask what it means. Listen.

  My friend Marc had Hodgkin’s disease for many years. He had long remissions and several relapses, years of feeling better, then worse. Finally he entered an experimental drug program at Sloan Kettering. After a few months he suddenly became quite ill, his body shutting down all at once, and he was admitted to the ICU.

  Marc was a fellow Buddhist teacher and a lawyer. He taught meditation at Seton Hall, where he was on faculty. We had talked many times about his health—frank conversations in which he mused about having limited time, about not knowing if he would live a few more years or a few more months. With that in mind, we talked about treatment options and whether he should keep driving during chemotherapy and whether he’d be able to keep off the weight he’d lost and how it felt to go on dates now.

  I spoke to him two days before he died. He was on the other side of the country from me and I knew I would never see him again. He was on a ventilator, but conscious. I am told he smiled and nodded his head when I told him I was thinking about him and wishing him well, and that he gave me a thumbs-up when I told him a lame Zen joke. The next day his sister called me. She was in distress; Marc had lost consciousness and they didn’t know what to do. It was only then that I realized he had no plans for his actual death. He had written nothing down, given no instructions, even after being admitted to the ICU, even after needing to be put on a ventilator. In all our conversations, we had never discussed his actual death. He knew he was going to die but hadn’t told me how he wanted to die. Nor had he told his doctors, his religious teacher, his beloved sister, or any of his many friends. I hadn’t asked him about it because he lived thousands of miles away and we saw each other only once or twice a year. I just assumed. I assumed he would have told me if he’d wanted me to be involved. I assumed he did tell others. We all assumed, I think, that someone else knew.

  Don’t say: Stop, you’re making me sad. Don’t be so negative. But if a dying person says this, you’d better change the subject. Denial can be exactly what a family wants; families can cultivate denial and resist the truth. Don’t say: Our neighbor’s daughter had this and she’s fine now. We indulge in denial and we fight the denial of others. Why isn’t Uncle Phil realistic? One way to cope is to get busy, plunging into the truth. We want to get palliative care started. We want to help our loved one avoid unnecessary procedures and save money. We want plans to get made so our own suffering can finally end. But part of loving a person may be allowing denial to exist as long as it exists. In a few cases, that’s until death.

  Don’t say: Face the music. My mother had this and she was dead in three months. You may feel such a need to comfort the person that you cover up the truth. Or you may feel—as I often did with my mother—such a need to talk about the elephant in the room that you undermine their shaky sense of safety. Your unfinished business is no one’s problem but your own.

  People who are dying will try out a number of ways to respond to the impossible fact. A person may say something that sounds completely hopeless. There’s no point. It’s no good. This won’t work. He may be trying out this possibility. (At some point, this will be true.) A person may say things that sound ridiculously optimistic. I’ll be skiing in Aspen by Christmas. She may just want to feel better for a time. Hope can be comforting, and hope can cause a lot of pain. Sometimes those close to a dying person can disrupt the natural process of grief by playing on—or against—hope. It’s not very helpful to say, You’re going to be fine! People know when they are dying. They don’t need to be protected from the knowledge, though doing so is common in many cultures. Above all, if you are talking with a person who is dying, be aware of what you want and what you think the dying person should do and should feel, and keep it to yourself.

  Your friend knows why you are there. Nigel Barley writes, “If the road to Hell is paved with good intentions, the road to death is paved with platitudes.” Don’t use euphemisms unless you are asked to do so by the dying person. (Even end-of-life care is a kind of euphemism, a way of focusing attention on the life instead of the death. We are at the end of a life, and the care we are giving and receiving is care unique to the last of one’s life. But be careful not to use that phrase as a way to avoid saying death.)

  Don’t make promises. Don’t tell lies. Every time you lie, or just pretend things are different, you lose trust. Doctors and families and patients all lie, knowing better. As Cory Taylor wrote when she was dying from melanoma, “I
n hospitals we don’t talk about death; we talk about treatment.” Doctors have all kinds of imperfect human reasons to lie about a prognosis, try to override your wishes, or obfuscate when questioned. It’s hard to lose a patient you’ve come to like; it’s hard to fail at a cure; it’s hard to think, however erroneously, that there is nothing more to offer. Treatment means control. It means success. As the gatekeeper, you may at times be a witness for medical truth, taking notes at an exam, keeping a list of questions, and blocking the door until your friend gets answers. Don’t say: Be nice to the doctor. Do say: Doctor, can you explain that in lay terms, please?

  Don’t offer advice unless you are clearly asked for it. And if you are asked for advice, give it gently and openly, leaving room for differences. Don’t try to cheer a person up. Please don’t say: Practice gratitude. And don’t “Kübler-Ross” a person. Don’t say: I see you’re in the bargaining stage. Don’t assume you understand a person’s reasons for their behavior.

  Don’t make this kind of comment: I’ll pray for you. Don’t say: This is a blessing in disguise. This is an opportunity. These words separate us, driving a wedge of belief and faith and intention and commitment between us. Unless you know the dying person very well, and are sure—I mean really sure—that the person shares your worldview, don’t even offer. Don’t ever say: I’m sure God has a plan.

  Don’t say: If I were you… Your friend wishes it was you. You can help with practical details and planning. But—oh, this is such a big but—only when and if the person agrees to the help. Offer, then shut up. A person will get ready when he or she is ready to get ready. When I think about Marc, I wonder if he just wasn’t, not even at the end, not even then. Not even then. Perhaps he was trying to protect his family and his friends—and perhaps himself. He was focused on treatment; the decline came very fast and took a lot of people by surprise. But if I could do it again, at least I would ask. I would ask once. Maybe twice. Then I would shut up.

  Notice if you’re inserting yourself into the situation. Notice if your mouth starts to form the words I think you should or Why don’t you…(Silence first. Notice the reaction, notice the words forming, the urge to rescue, fix, deny, demand, direct, avoid, confront. Notice the words and let them go, and start again.) Beware of your own bias. (Things not to say: You should quit eating sugar. Have you tried meditation? You should read this great book about mindfulness and cancer.)

  Dying is very intimate, but don’t take things too personally. Respect privacy. Don’t presume you have the right to know everything, to see anything, to have a single one of your questions answered. Glennon Doyle calls a certain kind of visitor the Reporter, the one who “asks inappropriate, probing questions and her eyes glisten as she waits for the answers.” The Reporter, of course, needs to report; she immediately shares your details with others, stealing a little of the tragedy for her own. (What not to say: Tell me all about it.) When people are sick, and already losing autonomy, and taking off their clothes for doctors and nurses, and getting stuck and cathed and scanned, they may feel more reserved than usual when they have the chance. When people see that their modesty will be overwhelmed by their illness—annihilated by it until every inch is exposed—they may not want to tell you the latest lab results. Or let you help them to the bathroom. Or answer one single question more. Talk about something else.

  Don’t predict how long a person will live. Don’t say: Are you sure that doctor knows what he’s talking about? Don’t say: Why don’t you try harder? Don’t you love me enough to fight? Don’t say: You meant so much to me—forgetting to change the tense. Don’t say, never say, do not say: Help me get through this. Never complain that a person’s death is difficult for you to bear. (I’ve read more than one story about a visitor who actually said, “This is harder on me than it is on you.”) The dying person has no obligation to sort things out for you, listen to your apologies, explain his past actions, or make you feel better about his death. It is not the dying person’s job to fix your loss of him. This sounds so obvious, but the urge to be consoled in our grief is great. Don’t leave me, you think. How can you? What will I do? Why is this happening? Fix it. These thoughts make no logical sense, yet you may feel a powerful need to say them out loud. Don’t. A dying person truly needs to know that their death will not cause harm. It hurts—of course it hurts—but no one is trying to hurt you.

  Accept what a person says. Period. Accept what the person says about her emotional state, her thoughts about heaven, his fears about pain, his certainty of a cure. Like everyone else, a dying person may be irritable, dark of wit, depressed, or withdrawn. Trying to cheer a person up is disrespectful and shows a lack of attention. The person may start a serious conversation and then change the subject. They may repeat themselves many times. They may refuse to say goodbye. The dying person may be happy one moment and crying the next, more interested in how the Mets are doing than his wound care, and appear more worried about the fate of a television character than their own. A dying person may book a vacation you know they will never take, plant a tree, buy a car, and shave their head. Make room for rage. Make room for clarity and insight, composure and acceptance, and throwing the bedpan across the room. Make room for the possibility of changing the course of a life, even at the last moment. Make room for a person to transform, to express love, perhaps for the first time.

  They are working it out. You should be, too.

  5

  Last Months

  Grandpa’s funeral was just the tip of the iceberg in my family. My heritage is Scottish, Irish, and English. My family came to the United States many generations ago on what are sometimes called “coffin ships” for their dismal conditions, and became farmers, homesteaders, and Oregon Trail pioneers: not exactly stoic, but tough stock not given to display. My maternal grandfather died more or less without acknowledgment, and about a decade later my grandmother died, and again the details were not up for discussion.

  When my mother was diagnosed with breast cancer, she begged me not to ask the doctor questions; she “didn’t want to bother him.” She died less than two years later, and we never talked explicitly about her illness. Near the end of her life, she was sleeping in a hospital bed in the living room. One day when I was visiting, she asked me to get her jewelry box—the same big jewelry box she had had all my life, filled with the same costume jewelry she had always worn. For a few hours she carefully divided everything in the box between my sister and me. She did not say why. Not then, not ever, did she acknowledge in words that she was going to die. But from that day on, she started sorting.

  There are as many ways to be as there are people on this earth. We are conditioned creatures, made out of habit and influence that begins before we are born. A serious illness exquisitely frames one’s background. I don’t mean to be academic here; this feels real and personal to me, that I am made of so many things given to me by others—by genetics, history, relationship, experience.

  Ethnicity is often the strongest influence on us, and illness brings this into strong focus: ethnic backgrounds support us with tradition and shared values when we most need a foundation. Like me, you probably find such support to be both consoling and constricting. While it derives from one’s race and place of origin, ethnicity is really about relationships: how the whole matrix of family works together, all those group behaviors and expectations you learned as a child, enjoyed over vacations when you came back for visits, and perhaps left behind with a small sigh of relief. A member from one group immediately calls for help in a crisis and the family converges on the sick member for weeks, brooking no dissent, filling the room. A member from another group—say, working-class Anglo-Saxon Protestant pioneers—may never talk about the illness, ask for a prognosis, or admit she is dying. The family stands by, assenting to the silence, waiting for her to sort the earrings. I’ve worked hard to overcome it, but the hardworking, buttoned-up people who are my ancestors and relatives left a mark on me. I’m much more willing to divulge private matters
and share complaints than my mother and I bug my doctor every which way. But I have a deep and surprising instinct for privacy, too. Serious illness confuses the issue; early conditioning meets an adult who has traveled a long way away.

  Chronic illness is a big challenge to one person and just another chapter to another. Everything comes into play: mental and physical strength, education and income, gender and sexuality, age, occupation, religion. Our net worth drives our access to health care in the first place; people with higher incomes simply live longer because of this, and have far more choices when they are ill or dying. People who are not used to good health care may not even know what kind of help is possible, or how to ask for it, and be submissive to medical authority out of the belief they have no choice. The fear of a financial disaster for one’s family is real (and so are the disasters). Illness means bills, and it means lost work, and eventually a lost identity. Older people may also be more submissive, but this could change as my entitled generation ages a bit more.

  I worked on an inpatient oncology unit before marriage equality. We would ask the same-gender partner of a patient, “You are the legal representative, right?” and not really wait for an answer, because we wanted the patient’s partner to feel welcome even if the laws said otherwise. People with fluid gender or sexual orientation learn early on to be skeptical of the health care system, and sidle up to it with trepidation. Immigrants may do this, too, and non-native English speakers, as well as people of certain religions who, like people in the LGBTQ community, have learned to expect misunderstanding.

  I have had a few serious illnesses and several surgeries, but I never really felt like a sick person. I consider myself healthy, even vigorous—unrealistically so, sometimes. I was a healthy child, a strong child, and this burrowed into me, into who I thought myself to be. And so I’m not a very good patient when illness interrupts: I get annoyed, I feel sorry for myself, I complain and resist treatment. Eventually all of us will be overtaken by frailty, and frailty, in whatever form, becomes the focus, and other selves fall away.