When you’re a caregiver for a chronically ill loved one or a healthcare professional working with patients who are chronically ill, you’re likely to hear some pretty tough questions. Solace, a new book from Walter St. John, provides tips, tactics, insight, and advice to help you navigate this minefield in a way that comforts and heals.
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(HealthNewsDigest.com) – Boulder, CO – There are few jobs tougher than caring for seriously or chronically ill people. That’s true whether you’re a healthcare professional or the family member of a very sick loved one. But of all the difficult tasks you face—cleaning bedpans, changing sheets, helping patients cope with pain—fielding questions can be the toughest and most intimidating task of all. Questions that fall into this category may include “Am I going home?” (especially when the answer is “No, nor will things ever be the same again”)…“Will I recover from this condition?”…“And oh, by the way: Is there an afterlife?”
If your instinct is to flee from the room, quickly change the subject, or start dispensing platitudes along with the patient’s pills, you’re not alone. Few people feel comfortable giving bad news of any sort, let alone talking about serious illness. And that, says Walter St. John, Ed.D., is precisely why you need to prepare yourself.
“The subject of chronic illness and the losses that often lead up to it make most people deeply uncomfortable,” 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). “We all have the same fears and most of us go through life studiously ignoring them—so when someone looks us in the eye and voices them, we just don’t know what to say.
“At times like these, winging it isn’t a good idea,” he adds. “Give the wrong response and you could potentially damage the trust you’ve built with the patient, confuse him, or cause him to become more upset.”
Certainly, the average person who finds him or herself having to care for a seriously ill family member is at a loss to address sensitive questions about loss of independence or chances of recovery. And despite their extensive clinical training, so are many healthcare professionals. St. John wrote his book to help both populations know what (and what not) to say and do in these and other tough situations.
Solace is divided into 58 brief chapters, each of which identifies and instructs readers how to treat an area that can cause tension, awkwardness, discomfort, or unpleasantness between sick individuals and those who are caring for them. Drawing on over twenty years of experience as a professor of interpersonal communications, the author provides practical tips, tactics, and key words that will help the general public as well as healthcare professionals deal with the complex issues they face every day.
According to St. John, here are ten things all caregivers should keep in mind when difficult questions are asked:
Let the person speak. When an ill person brings up subjects that make you feel uncomfortable it’s natural to want to squelch the discussion or rapidly change the subject. However, it’s very important to listen unselfishly and avoid responding with, for example: “Let’s not get into that right now. Can’t we discuss something more pleasant?” or “Do you really think it’s helpful to dwell on this topic?”
“Remember, the patient deserves to talk through his concerns and feelings—even if you don’t want to hear or process what he has to say,” notes St. John. “In fact, by squelching his concerns, you are sending the message that he 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 an encouraging attitude.”
Know when (and how) to say, “I don’t know.” Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don’t want her 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.
“Don’t feel pressured to say something you don’t want to,” instructs St. John. “However, do try to formulate an answer that lets the patient know you are taking her and her concerns seriously. Honest yet noncommittal answers might include: ‘I’m not the right person to answer that, but I’ll help you find out,’ or ‘Wow, that’s the $64,000 question, isn’t it? I need a little time to digest this.’ Again, you need to respect the patient’s right to an answer without giving a response that might be erroneous. And if you promise to gather more information, make sure to follow up on that commitment.”
Don’t hesitate to call in spiritual help. Even for people who weren’t very spiritual or religious throughout most of their lives, it’s natural to experience spiritual anxiety during a serious illness. And it’s also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, ‘What’s next? Will prayer help? Why did God let this happen to me?’ it’s best to call in a qualified cleric.
“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,” St. John 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.”
Encourage the patient to meditate or pray. Again, each patient is unique, and each will have a different set of spiritual beliefs and preferences. If you feel that your loved one might be open to prayer or meditation, it’s okay to encourage him to engage in that practice. And if you feel comfortable, you can even offer to pray (silently or aloud) with him. Prayer and meditation can be immensely comforting to some patients, and may also have a positive influence on their mental and physical health.
“The very nature of caregiving predisposes you to constantly think about the patient’s physical needs,” St. John points out. “Know, though, that some patients may be just as grateful for caregivers who are concerned about spiritual welfare, too. Always be sensitive and respectful, and if you’re praying for or with your loved one, ask if there’s anything specific he would like you to address.”
Never argue with the patient on spiritual matters or try to strong-arm her into your way of thinking. Even if the person you are caring for doesn’t share your own spiritual beliefs, she still has beliefs—and you must respect that. As a caregiver, your role is to offer comfort and support, and to create a sense of togetherness that will allow the ill person to make her own honest investigation of matters that are of great spiritual concern to her.
“If the patient brings up spiritual matters, or if you are thinking of discussing them, first clarify what, exactly, the patient believes,” advises St. John. “Express your interest in a non-judgmental way, and be prepared to possibly be surprised by some of the answers you hear! And as always, remember that the patient’s needs are of primary importance. Be careful not to impose your own views.
“Don’t tell the patient what’s ‘right’ and ‘wrong,’ and realize that even the terms you use—referring to God as ‘The Lord,’ or ‘The Big Man Upstairs,’ for example—might make the patient less comfortable, or even offend her,” he adds.
Let the tears flow (the patient’s and yours, too). Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, “It’s okay. Don’t cry.” From now on, continue to pass the tissue when your ill loved one starts to tear up, but don’t pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and 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 his feelings…unless, of course, he doesn’t want to.”
Resist the urge to spout platitudes. When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, “Everything will be okay,” “I know how you feel,” “God has given you a long life,” or “It’s God’s will.” While we hope that these phrases will be a quick fix to problems we’d rather not deal with, the truth is that they’re trite and meaningless. What’s more, sugarcoating reality doesn’t fool most people, and it certainly doesn’t spark positive change.
“If you respond with platitudes too often, you’ll send the message that you don’t care enough to be authentic, or that you are not receptive to your loved one’s worries and thoughts,” St. John says. “As with every area of caregiving, it’s about respect. Remind yourself that the patient is in the midst of a stressful and unfamiliar time, and that a worn, overused ‘old saying’ might frustrate, hurt, or even offend her. Certainly, it’s unlikely to help nearly as much as a simple ‘I’m so sorry,’ said with genuine compassion.”
Don’t offer false hope. Similarly to using platitudes, “looking on the bright side” is often done with good intentions. We’ve all heard about the transformative and healing power of positive thinking, and more to the point, we just don’t want to acknowledge that someone we love might be chronically ill with no hope for recovery. Regardless, don’t say things like, “I’m sure you will get well soon,” “You’re going to be just fine,” or “Think positively—it may go away.”
“While it may sound harsh, people usually know when they are seriously ill and going to die,” St. John explains. “By denying this reality—especially if you do so repeatedly and often—you can drive a gulf between you and the ill person. You can end up destroying your credibility, and you can also cause your loved one to feel that you can’t handle the stress involved in supporting him. That said, it is okay to express that you haven’t given up hope, for example, as long as you do so at an appropriate time.”
Respond constructively to anger. Anger is a natural human emotion, and it’s important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. 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.
“Although the cause of the anger might be deteriorating health, with no hope for getting better, you are the available target,” St. John points out. “You can’t control the patient’s anger, but you can control your own response. Make every effort to remain cool and collected, even if you have to pause for a few seconds or leave the room. 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.
“After everyone has calmed down, try to identify whether or not the episode was triggered by anything specific,” he adds. “For instance, certain people or events might be especially provoking to the patient, and if so, perhaps their presence could be minimized.”
Above all, seek to connect heart to heart. Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
“Make sure the patient knows that you are a partner in working through and/or coming to terms with the situation, and that you want to help,” urges St. John. “It is tragic when chronically ill patients feel that they must bottle up their fears, emotions, concerns, and questions because they believe their caregivers are not receptive to listening and helping.”
“Chronically ill people are facing an incredibly uncertain, anxious time, and most feel compelled to come to terms with their own mortality,” explains St. John. “And it’s natural for patients to reach out to caregivers, whether they’re family members or professionals, for answers and comfort. Learning how to respond and react properly can give the patient the sense of peace he or she is seeking.”
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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/.
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