Excerpt from "Solace"

Few of us know how to act around a very sick person. And yet, what we say (and don’t say) makes a huge impact. Solace, a new book from Walter St. John, provides a very specific set of practical skills for caregivers, family members, and anyone else who wants to make a meaningful difference in a very difficult time.

Being around a severely ill person—especially one who is facing a long-term recovery or who must live with a chronic condition—is not easy. It makes most of us deeply uncomfortable, even if we’ve known (and loved) the person for years. We struggle to say “the right thing.” We want to cheer the person up, but pasting on a smile feels fake and pointless. In light of his or her emotional and physical suffering, it may be tough to keep our own tears at bay. And frankly, the patient’s plight reminds us of our own mortality, too, which is most troubling of all.

Yes, for most people, the sickbed is uncharted territory. Unless you work in healthcare, you’ve probably spent little time around chronically ill people. But eventually, someone you love will be lying in that bed—and when that happens, Walter St. John, Ed.D., says knowing how to communicate with him or her will make all the difference.

“When someone you love becomes ill, you probably won’t instinctively know how to handle it,” says St. John, author of the new book Solace: How Caregivers and Others Can Relate, Listen, and Respond Effectively to a Chronically Ill Person (Bull Publishing Company, 2011, ISBN: 978-1-933503-62-2, $14.95). “Providing solace doesn’t come naturally to most of us. As a result, we either act in a way that makes us feel better, or we withdraw. Neither meets the needs of the patient.

“The good news is, you can learn how to relate to chronically ill people,” he adds. “You can learn to listen to the patient’s cues and respond appropriately. You can learn what to say and what not to say. You can create a relationship that brings comfort and peace of mind.”

St. John’s book is written for laymen and professional caregivers alike. Solace is divided into fifty-eight brief chapters, each of which identifies an area that can cause tension, awkwardness, discomfort, or unpleasantness between sick individuals and those who are caring for them and instructs readers on how to treat it. Drawing on over twenty years of experience as a professor of interpersonal communications, the author provides actionable tips and tactics on what words and actions will (and won’t) help the relationship.

What’s more, Solace guides caregivers and family members through a difficult time when life-changing issues arise and tough decisions must be made.

“Caring for a sick person is, intrinsically, a very stressful experience that can be mentally and physically exhausting,” explains St. John. “Knowing how to interact with and respond to such a patient in a way that fosters mutual understanding and trust can truly be a game changer for both of you.”

If you would like to feel more comfortable and confident around your ill loved one, read on for fifteen of St. John’s communication suggestions:

Don’t try to be a preacher, doctor, or therapist. Just be you. In many ways patients are different from the healthy individuals they once were. But they can still tell when you’re being phony, masking your feelings, or playing a role (especially if they know you well). It’s natural to feel uncomfortable around chronically ill people—at least initially—but the best course of action is to simply be you. If your loved one detects that you’re putting up any sort of façade, he’ll begin to wonder what your true purpose is; for example, whether you might be hiding something important from him.

“When you’re around someone who’s ill, you’ll do the most good if you focus on being genuine and real,” confirms St. John. “For example, don’t feel that you have to put on a constant show of cheerfulness if you’re normally a blunt straight-shooter. And don’t feel that you need to suddenly ‘have all the answers.’ Without being insensitive, let your natural mannerisms, feelings, quirks, and words shine through. This is the best way to maintain trust and a relaxed atmosphere.”

Don’t squelch uncomfortable conversations. Your chronically ill loved one will probably still want to talk about things like her favorite TV show, her children, and the news you tell her about your own life. But due to her condition, she will also bring up more weighty topics that might make you uncomfortable, such as her fears, the pain she is in, and her worries about the future. Even if you’d rather not touch a particular conversation with a ten-foot pole, try not to respond with, for example: Can’t you ever talk about anything pleasant? Don’t you get tired of complaining about the same stuff all the time? Do we have to talk about your condition so much?

“Remember, the patient deserves to talk—even if you don’t want to hear or process what she has to say,” notes St. John. “In fact, by squelching her concerns, you are sending the message that she doesn’t matter, and you reinforce feelings of isolation and resentment. The best course of action is to listen as objectively as possible, with an open mind and encouraging attitude.”

Know how to say, “I don’t know.” Whether the topic is medical, spiritual, or personal in nature, the patient will sometimes ask questions to which you don’t have answers. When this happens, it’s important to avoid giving a definite answer without seeming evasive, lest you jeopardize your credibility with the person. After all, you don’t want your loved one to think that you don’t care or that you’re hiding something, and you definitely don’t want to offer misinformation that might do more harm than good.

“The patient will probably ask things like, ‘How much longer do I need to take this medication?’ for example,” shares St. John. “Don’t feel pressured to say something you don’t want to. Honest yet noncommittal answers to this and other queries might include: ‘I’m not the right person to answer that, but I’ll help you find out.’ ‘Wow, that’s the $64,000 question, isn’t it?’ ‘I need a little time to digest this.’ Just don’t ignore the person entirely unless you have good reason, such as being verbally abused.”

Don’t hesitate to call in spiritual reinforcement when it’s needed. Some questions that your loved one might ask are so deeply personal—and so plain overwhelming—that you don’t feel qualified to deal with them. Questions that center on spiritual concerns, St. John says, almost always fall into this category. When someone asks, for instance, “What happens after death?” or, “Will I go to Heaven?” trying to answer him can do more harm than good.

“If you attempt to help with these complex issues when you don’t possess the knowledge or skills to do so helpfully, you’ll do more harm than good regardless of how well intentioned you are,” he explains. “You don’t want to inadvertently increase your loved one’s confusion or anxiety. When spiritual needs and questions arise, don’t be afraid to admit that you aren’t qualified to handle them. In this instance, please call in a rabbi, priest, or other spiritual leader. And know that no matter how little spiritual training you may have, you can always be a confidant and source of support.”

Understand that sometimes silence really is golden. Many people find extended silences to be uncomfortable. It’s common to break them with idle chatter or statements like, “A penny for your thoughts!” Realize, though, that at times being quiet is most helpful and meaningful. There’s no need to break a comfortable silence—your loved one might feel tired, weak, or contemplative and not want to chat. Your mere presence and availability can often be all she needs.

“Just sitting silently, perhaps with an arm around the patient, can communicate compassion that is beyond words,” confirms St. John. “However, be alert for unnatural silence that is characterized by tension and anxiety, as it can alert you to the fact that the patient is worried, angry, or uncomfortable. And don’t use silence as a weapon—giving the cold shoulder to a seriously ill person will not help anyone.”

Let the patient cry. When most of us see someone crying, we tend to whip out a tissue and murmur something along the lines of, “It’s okay. Don’t cry,” because we’re uncomfortable with weeping. From now on, continue to pass the tissue when your ill loved one starts to tear up, but don’t pressure her to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and they can be very therapeutic.

“The best thing you can do for someone who is crying is to simply be present and listen if the person wants to speak,” St. John advises. “It may go against your nature, but refrain from interrupting with supportive statements—you can make those after the crying spell is over. At this point, your presence is the crucial thing. Don’t be embarrassed to show emotion yourself, either; crying can also be beneficial for you. And after the tears are dried, encourage your loved one to talk about her feelings (unless, of course, she doesn’t want to).”

Realize that it’s okay to say “no.” If you’re around someone who’s ill, demands will be made of you. That’s normal. Especially if you’re a caregiver, you’re agreeing to do things the sick person can’t handle himself. It’s crucial to understand, though, that you can’t say yes to everything. While you may be the “healthy one,” you still have physical and mental limits. And when you try to be everything to everyone, you’ll end up stretching yourself too thin, and perhaps even harming yourself or the patient.

“It is much better to respond with a responsible no as opposed to an irresponsible yes,” says St. John. “The situation could be as simple as the patient asking to eat an off-limits food ‘just this once,’ or as complex as your family asking you to move in with Mom full-time to care for her. Regardless, saying no requires courage and conviction, and does not mean that you are weak or selfish. Just be sure to deliver your response with love. Explain your reasons and re-affirm how much you care for the patient.”

Think before you speak. (Choose words carefully.) Words are very powerful. An off-hand comment that you make and never consider again can impact another person’s mood or sense of self-worth for hours, days, or longer. That’s why it’s very important to do your best to say exactly what you mean when you are talking with your ill loved one. Especially when conveying something important, put a little prior thought into choosing your words so that you don’t spark unnecessary tension, anxiety, or anger.

“As a caregiver, or even a visitor, your goal should be to choose words that are as clear and unambiguous as possible,” shares St. John. “Remember that what you say can help heal, or it can make the patient feel even more demoralized and sick. So instead of blurting out the first phrase that pops into your head, take into account nuances like: Am I speaking abstractly or specifically? Is this person capable of understanding complex words and ideas right now? Is he offended by certain words or ideas? Will telling him this make him dread my visits in the future? Using a little prior judgment can save everyone a lot of grief.”

Share bad news. Don’t “deliver” it. Say, for instance, that your mother is terminally ill and that your brother—her only son—has decided to end his marriage. If your family is having the Do we tell her? She probably won’t live until the divorce is final conversation, St. John asserts that sick people are still entitled to hear the truth and that you have the ethical obligation to deliver it, even when it’s negative. And the manner in which you convey that truth, he says, is critical.

“Whether the bad news relates to family drama, financial trouble, or the patient’s own illness, try not to present it as an idea that the other person will have to deal with on her own,” he explains. “In other words, don’t ‘tell and run.’ This should ideally be a gut-to-gut, heart-to-heart conversation. Therefore, it’s a good idea to put some prior thought into who the best person and when the best time to share the news might be. Make sure your loved one knows that you are a partner in working through and/or coming to terms with the situation. Offer to help and don’t make everything about you and your own reaction.”

Treat the patient like a person, not an illness. When your loved one’s medical condition dictates almost all aspects of his daily life (and perhaps yours as well), it can be easy to focus primarily on his illness when you’re together. Even if you’re just visiting for an hour or so, you’re still acutely aware that the change in circumstances is due to cancer, for instance, or kidney disease. Remember that you aren’t spending time with a disease that is treated by a certain medication and manifests itself through specific symptoms. You’re spending time with a person who is still capable of interacting, understanding, and feeling.

“Patients may be sick, but they are still themselves,” reminds St. John. “Unless your loved one’s illness has affected his mental abilities, his personality, preferences, and characteristics are largely unchanged. When you begin to define him by his condition, he will likely begin to resent not being accepted and valued for the person he is. It’s important to always treat the patient with dignity and respect, and allow him to retain as much control over his life as possible.”

Pay attention to body language. (It can tell you what’s really being said.) Sometimes chronically ill patients might seem to communicate in a confusing or incomplete manner. (In fact, everyone does this from time to time!) Maybe your loved one is saying one thing but doesn’t seem to mean it, or perhaps her response to a particular set of circumstances doesn’t seem to fit. In these situations, body language can give you valuable clues as to what’s really going on.

“For example, fidgeting or looking away might indicate nervousness,” instructs St. John. “Crossed arms are a sign of defensiveness, while nail-biting or lip-chewing are symptoms of insecurity. Leaning toward someone points to cooperation, while leaning away might indicate suspicion or skepticism. When you learn to ‘speak’ this language, you’ll be able to more accurately get to the heart of the matter.”

Be (appropriately) hands-on. Similar to a comfortable silence, touch is a powerful way to communicate without words. To a sick person, physical contact can convey support, comfort, reassurance, and more in the midst of a very frightening time. For some patients, a long period of not touching might even increase feelings of separation and isolation. That’s because something as simple as holding your loved one’s hand, kissing his cheek, or patting his arm says, “You are not alone; I am here with you.”

“The appropriate way to touch someone depends on how close your relationship is, what sort of contact he is comfortable with, and whether he’s even receptive to touch in the first place,” St. John clarifies. “Unless you are already very close and have a history of hugging, for example, it’s good to consider asking, ‘May I give you a hug?’ the first few times. Also, keep in mind that your touching should be a natural, spontaneous gesture of caring, rather than something planned or contrived. This is one of the best ways to create trust, especially during serious conversations about the patient’s feelings, pain, or fears.”

If at all possible, honor the patient’s confidences. Everyone needs someone to whom they can talk about their innermost thoughts, feelings, and concerns—especially people who are suffering from an illness. If you’re a caregiver or frequent visitor, you’ll probably fill this role to some extent. It’s important for you to maintain the patient’s respect and trust by not divulging confidential information, “even once,” because “even one” betrayal can be fatal to your relationship. And when you’re listening, remember to maintain a nonjudgmental and nondirective attitude.

“There are two types of confidences: those you are explicitly asked to keep private, and those that are obviously very sensitive and private,” St. John clarifies. “Even if you haven’t been explicitly asked to keep something confidential, err on the side of caution. Speak up against the patient’s wishes only if you feel that her well-being, or that of other family members, might be in danger. For instance, if your loved one is contemplating suicide due to feelings of futility and fear, or planning to secretly spend a large sum of money on something ill-advised, breaking her confidence might be the right thing to do.”

Remember, smiling isn’t taboo! There’s a saying that when you smile and laugh, you’re speaking in a universal language…and it’s even spoken by patients in sickrooms. Yes, when you’re visiting an ill loved one, you probably don’t feel like grinning, and you also want to keep things as peaceful as possible. But when you’re the patient, all of the seriousness and sadness can be wearing. Unless your ill loved one is a humorless person by nature, don’t feel the need to suppress laughter and smiles.

“Actually, laughter has numerous healing effects,” St. John says. “It can relieve stress and even pain, and it’s also a wonderful way to ‘equalize’ the sick and the well. Remember that before cracking a joke, though, it’s smart to gauge the patient’s mood as well as your own personality. In other words, if you always flub the punch line, stick to spontaneous humor and avoid reciting jokes—and pack the humor away entirely if Uncle John is in an unreceptive mood. Lastly, don’t be afraid to laugh at yourself—it will endear you to your family and friends!”

Don’t take anger personally. Do respond constructively to it. Anger is a natural human emotion, and seriously ill people have a lot to potentially feel angry about. After all, they have a prognosis that might not be hopeful, and they have lost some amount of independence and autonomy. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it’s not unusual for caregivers to be on the receiving end when their loved one’s fuse blows for any reason.

“While you can’t control the patient’s anger, you can control your own response,” St. John advises. “Make every effort to remain cool and collected, even if you have to pause for a few seconds or leave the room to keep your own stack from blowing. And after the episode is over, try to identify what really caused the outburst so that you can avoid similar situations in the future. Anger doesn’t happen in a vacuum—it is triggered by various emotions, perceptions, and events. Refrain from squelching or downplaying your loved one’s anger since she has a right to express it, and since it may even be therapeutic.”

Taking time to learn the art of giving solace is absolutely worth it, insists St. John—and not just because it helps the patient.

“We learn so much from our interactions with chronically ill loved ones,” he says. “When you do all you can to make your time with the person productive and meaningful, you may gain great emotional and spiritual growth. And you’ll stave off regret—down the road, when you look back on this experience, you won’t wish you hadn’t squandered what could have been the richest, most real time you ever spent with your loved one.”

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About the Author:
Dr. Walter St. John is a retired college professor and administrator who lives with his wife in Old Town, Maine.

He taught interpersonal communications courses for more than twenty years and has presented communications workshops throughout the United States and Canada. He has hands-on experience with disabled veterans, multihandicapped youth, and Special Olympics participants, and he has written widely in the field of communications.

Dr. St. John received his bachelor’s degree from the University of Arizona, with a major in communications. Subsequently, he earned his doctorate from the University of Southern California, with a major in management and a minor in counseling.

Dr. St. John’s observation that there was a need for an accessible and useful resource for caregivers led to the development of this book. The methods in Solace were developed in conjunction with extensive research with caregivers and healthcare professionals.

About the Book:
Solace: How Caregivers and Others Can Relate, Listen, and Respond Effectively to a Chronically Ill Person (Bull Publishing Company, 2011, ISBN: 978-1-933503-62-2, $14.95) is available from major online booksellers and at www.bullpub.com/catalog/solace/.