The one malady that affects all caregivers is stress. As caregivers, we have so much to stress about: our loved ones, our ability (or inability) to spend time with the people we care for, managing our jobs while caring, attempting to balance our families and our caregiver duties, and oh yeah, trying to hold onto [...]
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Inevitably you’ve been asked the question: ‘What Do You Do?’ Some time ago, this seemed like an easy question to answer. You went somewhere every day to work, you engaged in some kind of behavior or activity every day, and then, each evening, you came home to something and someone awaiting your return. What you once did seemingly fit nicely into a very clear and simple sentence: ‘I am a ….’
But those days are gone. Now, the question of ‘What Do You Do?’ is much more complicated. As a caregiver, you don’t carry a briefcase to work. Now, your working days aren’t only spent somewhere else, away from the home. And you don’t come home from work to relax or recharge. No, now, your home life is as challenging and exhausting as anything done at work.
Work is now inside your home. Of course, you would never call caregiving work because you are caring for someone you love. And people who care aren’t supposed to place ‘care’ and ‘work’ next to one another in a sentence. But caregiving is a preoccupation that totally disrespects sane working hours, union rules, salary increases, benefits, vacation time, or any other perk you can think of.
Once you see yourself as a caregiver, the question of ‘What Do You Do?’ is totally deceptive. Saying, ‘I am a caregiver’ isn’t the whole truth. It just isn’t. Yes, you are a caregiver and you are also something else too. No one has the luxury of being only a caregiver. You are a caregiver and something else. For some of us, that something else is a formal job we go to every day that oftentimes takes us far away from who we want to care for. But we have to go regardless. For some of us, that something else is an informal set of obligations and duties that never stop piling up.
Simply put, as a caregiver, you never can be carefree about your caregiving—for every person you care for, there is also a complex and sometimes overwhelming series of obligations, worries, deadlines, challenges, and to-dos that never allows you to say, “I’m specializing in caregiving.” No one specializes in caregiving—we would love to in an ideal world, but we don’t live in an ideal world because we live in a world with bills, and contracts, and expectations, and mortgage payments, and so on and so on.
Some people are lucky. They can claim a clean, one-sentence response to the inevitable question: ‘What Do You Do?’ Not being able to easily answer this question is partly what makes your life so complicated and challenging. The real question people should ask caregivers like yourself isn’t ‘What Do You Do?’ but ‘What Do You NOT Do?’
The one malady that affects all caregivers is stress. As caregivers, we have so much to stress about: our loved ones, our ability (or inability) to spend time with the people we care for, managing our jobs while caring, attempting to balance our families and our caregiver duties, and oh yeah, trying to hold onto ourselves in the midst of our unyielding 24-hour a day care.
As caregivers, our stressors are different than most others. But before we can learn how to reduce caregiver stress, we need to pause to think about why and how stress affects us so differently than most others.
(1) Stress is most dangerous when we believe it is permanent. When we believe our caregiving duties will never end, when we believe that we or someone we love will always suffer, stress becomes debilitating because it changes us. Not only do we withdraw into a world of our own making (see #3 below), we can no longer respond appropriately to the people around us. We hear the whispers of stress, “you can’t do this,” not the sounds of the person we are near. We feel the grip of doubt, not the touch of reassurance of the person we sleep next to. And we blind ourselves to the glare of uncertainties in our head, not the sight of what is present before us.
(2) Caregiver stress has no past. Think about it, do you still stress about something that happened a year ago? I didn’t think so. Are you still stressing about the conversation you had with your loved one last Friday? Stressing about the hospital visit that occurred months ago? Probably not. Stress has no past because it is so effective at focusing all of our attention on future uncertainties. We can even laugh at past stresses—“I can’t believe I was worried about . . . ,” but stress never, ever, has a sense of humor about the future. Stress convinces us that the future is always serious and worthy of fretting over. Caregiver stress holds our attention on the future and won’t let go of us, holding our pleasant and comforting memories of the past hostage and out of sight.
(3) Stress turns us away from others. Stress isn’t like fear. When we fear something, like watching a horror movie, we want to spend time in the company of others because we believe we will be okay simply because we aren’t alone. Stress, on the other hand, tricks us into believing that we can best “solve” stress alone, behind closed doors, in the privacy of our own thoughts. Stress is at its most dangerous when it convinces us to turn away from others by telling ourselves, “Others wouldn’t get it,” and “I’m different than others” and “I don’t want to burden others with my problems.” When this happens, stress not only changes how we think, it pushes people away from us.
(4) Stress changes shape the more attention we give it. Like anything, the more attention we give stress, the more it grows. Like a Chia Pet, stress grows with the right nutrients of isolation and mental attention. Stress becomes more vivid the more we devote our thoughts to its hallucinating facade that makes us believe we can’t (and shouldn’t) turn our eyes and thoughts away from it. Eventually, we convince ourselves, especially when we are alone (see #3 above), that the world we have mapped in our heads will unfold just as we imagine. And the more we talk with ourselves, the less able we are to prevent ourselves from mapping our lives according to the compass of what might happen rather than the compass of what is happening.
Stress is a constant for caregivers. We learn to live under the influence of stress while we care for those we love—whether in person or thousands of miles away. No one can take away the events or experiences of our lives that induce stress, but we can try to minimize our participation in exacerbating caregiver stress. Look for next week’s Unprepared Caregiver blog for specific strategies to help reduce your caregiver inspired stress.
The favorite pastime in America isn’t basketball, football, or baseball. The favorite pastime in America is looking forward. Everyone looks ahead to something or someone. A vacation. A graduation. A holiday. A three-day weekend. An end to 12-hour workdays. The end of winter. The beginning of spring. The premiere of your favorite television show. The start of a new job. And so on, and so on, and so on.
The only people in America who don’t look ahead are people like you and me who care or have cared for someone who isn’t getting better. It’s not that caregivers like you and me don’t want to look ahead. We just don’t think we can. We believe looking ahead is reserved for people who take the present for granted. People who have no reason to question that tomorrow will be the same as today.
So it’s not surprise that when most people look forward, they gaze months and even years into the future whereas you and me, our hopes dare not travel beyond the moment. We don’t allow ourselves to look ahead because we mistakenly believe that doing so will only depress us.
But we are wrong. We must create something to look forward to in order to help us maintain our caregiving duties. As caregivers, we will experience burnout. It’s an occupational hazard of our love for another human being. Experiencing burnout is not a matter of if, simply a matter of when. But we can reduce the intensity of caregiver burnout if we allow ourselves the luxury of looking forward. I’m not talking about looking forward in the way other people look forward to vacations or travels around the world. No, our looking forward has to be different even though it serves a similar purpose—helping us through the rough patches of the every day when our bodies are exhausted, our hearts are heavy, and our will is seemingly depleted.
In order to reduce the intensity of caregiver burnout, here are five rules of looking forward every caregiver should keep in mind:
(1) Looking forward should extend no more than 24 hours into the future. As caregivers, we know so much about the fragility of life that to look forward to anything beyond 24 hours would be too much for us to believe.
(2) You should not go more than 24 hours without looking forward to something or someone. More than most, we need motivation to endure the 24-hour a day cycle of caregiving. We need to mark our time, not simply by the passing of a calendar day but by the enjoyment of a tangible goal or reward.
(3) Look forward to the small stuff. This may be the most difficult rule to follow. We’ve been trained our entire lives to believe that we should only look forward to big things: weddings, birthdays, holidays, family reunions, etc. Cross those thoughts out of your mind. As a caregiver, you have to constantly remind yourself that the small stuff is worthy of looking forward to, like watching the sunset, or taking a long shower, or going for a run, or calling a friend, or watching your favorite television show, or getting a hair cut, etc.
(4) Mark your small stuff in your calendar. Now. Yes, I mean physically type it in your phone or mark it in your daily calendar. Be as specific as you can. Ambiguity is your enemy. Mark your small stuff in your calendar with the very same details you would when marking anything else in your calendar: the amount of time necessary to fulfill your small-stuff task, where, with whom, etc. If you don’t mark it in your calendar, it won’t exist.
(5) Make it sacred. Stop treating your own needs as if they are optional yet treating others’ needs as necessary. Our needs are as real as others. I know, this is much easier said than done. As caregivers, the small-stuff that we look forward to must be treated as sacred or we will deny ourselves the opportunity to experience these often overlooked but essential moments of joy.
A friendly reminder to us all, if we deny ourselves the opportunity to indulge in the small stuff we look forward to, then we will be less able to give of ourselves to the very person we care for. Yes, I know we all know this, but I also know that few of us truly take this to heart. Your small stuff is sacred. Don’t minimize it when talking to others or when talking to yourself.
It’s one of those experiences that will happen, no matter how much we don’t want it to occur or how much we think it won’t happen to us. Even though it’s seldom talked about, anyone who gives care to another eventually experiences burnout. Burnout is the inescapable side effect of caring for another who is ill and won’t necessarily recover. One reason why we, as caregivers, are so prone to experiencing burnout is because of the 24-hour, 7-day a week cycle of care that too often unfolds without a sense of accomplishment to mark one day from the next, one week from the next, let alone one hour from the next.
In almost every other aspect of our lives, we give ourselves the luxury of having measurable goals of daily accomplishment and definable objectives. Marking work goals and accomplishments allows people to make sense of their day —“I did great today” or “Wow, I really worked hard today” or “I’m almost done with the project” or “It sure is nice to know that I can cross that off my list now that it’s completed.”
Having definable goals and objectives also motivates us. It pushes us to get up extra early or stay later at work. Goals and measures also help us pace ourselves. We tell ourselves, if I can only get through this day and fulfill today’s objectives, then I know that I can take a deep breath and pat myself on the back for a job well done.
So why is it that as caregivers, we don’t allow ourselves the benefit of acknowledging our daily accomplishments? We rarely allow ourselves to talk or think in terms of tangible goals because we convince ourselves that having goals and measures of accomplishment would seem so strange to outsiders. “How could you ever think of goals”, most people would say, “when your loved one isn’t going to recover?” “How can you have any measure of your performance when care can’t be measured—it’s just something you do?” “How can you have a goal when your care won’t make your loved one any better?” “How can you reward yourself for your work when your loved one is still ill?”
But what these people fail to realize is that someone who cares for another without goals will inevitably feel worn out if they feel like their unending, daily efforts are meaningless. And anyone who feels like their efforts are unworthy of acknowledgement will inevitably feel more exhausted, have less patience, be more prone to depression, and be less likely to spend time in the company of others, let alone engage in social activities that might recharge them.
As caregivers, if we don’t give ourselves permission to mark our daily accomplishments, then we are like runners who run endlessly, without mile markers, with no watch to pace our efforts and energy, and no destination to propel our bodies forward even when we feel like stopping.
You’re right, caregiving is different than most jobs. And yes, you’re right, there is no objective measure that will let us close our eyes at night knowing with complete confidence that we “did a good job.” And no, unfortunately (and tragically) few people will tell us that we are doing a good job because care is too often thought of as something that is private—something to be done behind closed doors that is not talked about in public. Caregiving is something that saints do, people tell us. Caregiving is something that some people are simply better at than others, others remind us. Caregiving is just something that you do when you love someone, we remind ourselves.
But they are wrong. And we are wrong too. We need to measure our daily caregiving accomplishments. We need to reward ourselves for what we do from one day to the next, from one hour to the next, that no one else will (can) notice. We don’t need to recognize ourselves to simply pat ourselves on the back. No, we need to recognize our efforts and our momentary triumphs because if we don’t, we are leading ourselves down the road to burnout. And when we feel burned out, we can’t care for another, let alone for ourselves.
Care and physical exhaustion are synonymous, but sometimes, our thoughts can make us even more exhausted by deluding us into believing that the care we give in the darkness of the night and in the privacy of our homes isn’t worthy of recognition. It is. It should be. It can be. It must be.
Pain is a scary word. We all fear pain. Pain hurts. It’s physical. It throbs. It stings. It blurs the mind and makes it so that we can’t help ourselves from focusing on anything else but what ails us. Suffering hurts too. But suffering isn’t the same as pain. Suffering may be physical but it hurts beyond the body. Suffering affects how we think and what we expect and how we feel.
Caregiver suffering isn’t often discussed because most medical dramas and media attention focus on the patient, not the caregiver. It wouldn’t matter anyway. Caregiver suffering can’t be seen by a camera. It’s beyond the lens, defying observation and explanation. Caregiver suffering means having to come to grips with knowing that:
- There is no suffering scale from which to measure what you are enduring because what you are experiencing isn’t objective—it’s very personal.
- You can’t make your feelings of helplessness disappear.
- What you are experiencing as a caregiver can never be fully understood by outsiders, even if you knew how to communicate what you were feeling and experiencing on a daily basis.
- The person you care for is not the same person you remember.
- The person you love is experiencing something that you can’t necessarily take away—even when you would give almost anything to do so.
- No one will walk through the door and tell you that life will return to normal.
- You can’t even remember what your life was like before you were a caregiver
No one can cure suffering. No one can make it go away. It’s a mixture of uncertainty and love and regret and anticipation and tenderness and dread. It simply defies comprehension and explanation.
But the very deep vulnerability that brings us to tears at a second’s notice also turns our attention away from the future and back from the past, into the unfolding moment. It’s in the midst of suffering we know without a doubt that we need one another.
Even though suffering is an intensely private experience, we know it retreats when we make human contact with another. When we hear the voice of a loved one. When we feel the touch of another’s hand. And when another’s familiar perfume or cologne washes over us in their presence. It is true that our care for another makes us vulnerable to suffering. But it’s even more true that what makes you so very special is that you care even in the midst of suffering.
Care is one of the most revered social gifts that we can give others. To give care means to comfort another. To give someone peace of mind. A peace that allows someone to close his or her eyes and rest, knowing that when they awaken, they will not be alone. That they are loved. Considered. And worthy of sacrifice.
Although care is so precious and seemingly self-explanatory, most believe that care is so common that it merits no further explanation. I disagree. Because care is so vital to our well being and the well being of those we love, it’s important we dispel harmful myths of care that might get in the way of our authentic and sustainable care.
- Myth #1: Care means cure. Hospice understands how we often confuse these two issues that it’s very mission, “care, not cure” makes this important distinction. Care doesn’t necessarily mean someone will be cured. Care can restore a relationship, it can make someone feel better, it can bring you closer to another human being, it can inject purpose into everyday life, and it can even improve someone’s health. But to reduce care to a cure means that care is reduced to an outcome. Care is a commitment to another human being despite or in spite of what will happen. Care is a response to moments between people, not end results.
- Myth #2: Care can be reduced to an act. Acts of care like going to the grocery store, mowing the lawn, and picking up much-needed medication can be easily observed by others. But care can’t be reduced to acts of service. Care doesn’t cease once you take your loved one to a doctor or sit by their bedside for hours on end. Care is a way of being in the world that involves acts of service, but it begins way before the acts of service can be seen by others and lingers long after you get groceries or clean the house for your love done. Deep care can’t be easily observed nor easily communicated to outsiders. It happens in the silent spaces between you and your loved one. It imprints itself on you. It changes you. It changes your relationship with your loved one. And it changes how you relate to others.
- Myth #3: Care can be turned off. Care can’t be compartmentalized. You can’t go “do care” and then leave, like going to a gym to work out. It follows you home. It stays with you all day. And it may even keep you up all night. When you get close enough to another to truly care, you will see things others are unable or unwilling to see. You will be close enough to hear the needs of your loved one that others may refuse to hear. You may find yourself exhausted morning and night, unable to point to a specific reason why you aren’t acting “like yourself.” Care stays with you as you drive to the airport after a visit with your loved one, it is next to you as you think about your loved one when you are thousands of miles away, and yes, it goes with you to work as you paste on your smile to others at work when someone asks, “how are you?”
- Myth #4: Care can accomplish anything. This part of care is almost never discussed. But those who truly care for another feel the boundaries of their care in profound ways that most others don’t. When you hang up the phone, thousands of miles removed from a loved one, you feel more helpless and alone than before you called. When you intimately care for another, you too, feel pain and suffering. Not physical suffering as much as the suffering that comes from knowing that you can’t necessarily do anything to make it all better. You can’t necessarily make another’s pain disappear. You can’t necessarily make another’s sadness evaporate. And you can’t necessarily make everything like it used to be. Yet, despite these limits, you know that authentic care happens when you focus on what happens between you and your loved one, especially when everyone else in the world seems not to be paying attention. That’s care.
You are stressed. Overwhelmed. Can’t sleep even though you are exhausted. And your patience level is at an all-time low. So what do you want to do? Get away from others, right? As caregivers, stress is a constant in our lives. It’s no surprise that, when under the influence of stress, our first “instinct” is to remove ourselves from others.
When stressed, many of us tell ourselves (and others), “I need my space.” We dream of getting away. We find ourselves turning down opportunities to spend time with others. We politely thank others for offering to come over to the house, but reject their offers, explaining, “Thanks so much for the offer but it’s just not a good time right now.”
“I need my space” is code for “I don’t want to be around other people.” This seems natural, doesn’t it? Well, this so-called instinct isn’t as natural as we might think. If you’ve ever watched young children play on a crowded playground, you know what I’m talking about.
The more children there are playing together, the more they run and yell and hop and skip and laugh. And the faster they go. The more energy they gain. Even though the spaces between them are often no more than a few inches, they don’t step away. They don’t seem to mind the presence of others. Traffic jams of other children don’t frustrate them, they simply become parts of the playground to be navigated. They bump into each other and keep going. They move around and through. In other words, they adapt.
Us adults, on the other hand, we aren’t nearly as adept at adapting. We have a much harder time navigating around the landscapes of other people. When under stress, many of us retreat away from others, taking our physical presence and finding solace in solitude. Affirmative solitude is necessary for thought and rest and contemplation, but too often, solitude is used as a type of retreat against the world.
As a caregiver, you can’t help but realize that much of everyday life is beyond control. So it’s no surprise that the desire to be alone, to separate ourselves from others, to get space, is an attempt to regain control in a world that sometimes seems out of control. In saying we want space, we really are saying we want complete control. So we seek out our special room. Our favorite oasis. A television. A shut door. A darkened room.
Just remember, those children on a crowded playground can teach us something. Voices and bodies and movement don’t have to drain us of our energy or create anxiety. “Needing space” isn’t necessarily natural. Laugher is natural but it doesn’t happen alone in a darkened room. Comfort is natural but it rarely comes from the television. And stress, well, it isn’t always caused by other people. Sometimes, it’s good to hear other voices mixing together simply to remind yourself that you, that we, aren’t alone. Sometimes, it’s okay to share the same playground, even when we feel crowded.
Just the two of you but nothing is said between you. There should be so much to say. So much you wanted to say. So much you thought about saying on the drive over to visit. But here you are, sitting only feet from your loved one and there is nothing but silence. You can’t help but panic as your muscles tense and your worst thoughts begin to take over: “Is everything okay?” “Is she mad at me?” “Did I do something wrong?” “It was a mistake to visit.”
For most of us, silence is one of the great social fears we experience when in the company of another person we care for. Most of us are taught that if we don’t have anything to say, then we shouldn’t say anything at all. It’s no surprise then that as adults, all forms of silence are almost always perceived as awkward. According to a recent article in the New York Times entitled “Anyone There?”, when we send an email to a friend or work colleague and receive no response in return, we can’t help but conclude we are being ignored and forgotten. So, it’s no wonder that when we are physically sitting next to someone we know and care for and experience moments of silence, we think something is wrong because we mistakenly believe that:
- If we’re not talking, we’re not relating
- If we’re not talking, they must be upset
- If I don’t have anything to say, I shouldn’t have come to visit
- If we don’t have anything to say to each other, then something is wrong with our relationship
- Talk is the only way to become close to someone
Each of us is highly educated in knowing how to make sense of others’ words. Unfortunately, no one taught us how to interpret others’ silence. As caregivers, silence is a language we especially need to understand because silence is so often a part of our relationships with those who are tired, ill, or unable to speak.
Keep in mind the following communication principles the next time you experience interpersonal silence:
- Silence can bring you closer to someone. When you share a view of the sunset with someone, the awe of the beauty before you transcends anything you could say. Simply sharing that moment together, without the need for words, inspires the holding of hands and a shared, deep appreciation of the moment. So why not allow the shared moments of silence bring you and your loved together in interpersonal relationships? Yes, there is no sunset to behold but the principle remains the same. What makes interpersonal silence so awkward is our expectations that every second has to be filled with words. Being physically present with your loved one says more than you could every put into words. Awkwardness quickly flows into appreciation when we trust ourselves in knowing that what we are sharing together in physical presence is more important than anything we could say.
- Silence can be an incredible interpersonal gift. We’ve all been in the company of special friends or loved ones for whom we felt the luxury of not having to fill every moment with words. Knowing we don’t have to talk makes these relationships special because we “get” one another even in the absence of words. Likewise, your level of comfort with silence when in the company of the ill gives your loved ones permission to feel like they can be themselves. They don’t have to put on a show. They don’t have to “get up” for meeting you. They can be authentically themselves. Knowing they can sleep in your company or listen to you without having to give you verbal feedback means that you will be different than most others who come with expectations that require them to be something they are not feeling. Your comfort with silence in their presence can be an incredible gift of peace.
- Silence can bring people closer together. When you let go of the need to fill every moment with words, you become more perceptive of the person you are sharing space with. You become more perceptive of the setting you are in. And you become more aware of your very presence. The moment is allowed to speak to you when silence exists. When we become comfortable just sitting with another without speaking or being spoken to, awkwardness falls away and deep appreciation fills our senses. The smell of your loved one’s perfume is noticed. The color of the wall becomes more pronounced. The deep rhythmic breathing of your loved becomes a lullaby. The shape of your loved one’s mouth becomes more pronounced in your memories. And the touch of their cold skin against your warm fingers blends into a perfect union of temperature.
When our words are allowed to rest, our other senses come alive, filling in the gap with understanding that is as valuable as anything we could say. When our expectations for words is replaced with an acceptance that silence can bring us closer together, you will see, hear, and experience moments of connection that you may not have been able to achieve when too preoccupied with filling silence with words.
Much of what we do as caregivers can be summed up in two words: giving attention. Most people dismiss the value of attention because this act of care seemingly requires no special skill set. So, the thinking goes, if anybody can give attention to a loved one in need, then it clearly isn’t very unique. But here’s the catch—so few people are capable of giving the kind of attention loved ones need most because not all attention is created equal.
The following list distinguishes between different types of attention, beginning with the least essential form of attention and culminating with the most vital type of attention that distinguishes caregivers from most others. And just as important, the last type of attention described will remind you why the care you give is so important to your loved one.
Body Attention— Although this type of attention is essential among medical experts, it is the least important (yet most heralded) care we can give to loved ones. Body attention focuses attention on people’s bodies and body parts—turning care into an endless search for accurate, clear, and more (always more) information about origins, symptoms, and causes of diseases or illness. This type of attention is often expressed as “research,” as those who give this type of attention demonstrate their care by privately doing endless hours of Internet research away from the very person they care for.
People who give bodily attention become intimately familiar with body parts or symptoms but, in the process, they can’t help but (unintentionally) neglect the very person they love who has the very symptoms or disease they have devoted most of their time, energy, and focus.
In other words, you can only type generic body parts and names of diseases and symptoms into the Google search box to find out more, not your loved one’s name.
Convenient Attention—This form of attention is given when it is convenient for the person giving attention, not the patient/loved one. This kind of attention is usually given by a long-time friend or neighbor and is typically expressed with statements such as, “I’m going to come by your house and read to you three times a week…” or “I’m going to call you everyday to see how you are doing.” Because this care is based on convenience, the promises of attention often only create false expectations that are rarely met.
Sadly, this type of attention revolves around work and social or mood calendars, not the need calendar of the person in need.
People who give convenient attention find it hard to overcome the needs of the moment, often uttering phrases to themselves such as, “I’m not really up or visiting today,” or “I can always go next week. I’m just not feeling it right now.”
Conditional Attention—This type of attention is characterized by a carrots and stick approach to caregiving. In other words, well-intentioned, tough love means attention is given with strings attached—making sure your loved one “gets better.”
When attention is focused exclusively on a loved one’s potential to get better, attention is all about improvement and almost never about the value of the person staring back at you.
So, conditional attention dangles the promise of more attention just beyond the outstretched arms of a loved one because it is used to prompt, inspire, and cajole a loved one to do more, to expect more, and become better/healthier. Although conditional attention may have noble aspirations, too often, this kind of attention only reminds a loved one that their worth is always about tomorrow—when they have “overcome” a disease or medical condition—not about who they are today.
Caregiver’s Attention
As caregivers, we know that all attention is not created equal. Caregivers like you and me—we give a different type of attention than most others.
Our care is so different because our attention is given to the whole person. It goes beyond body parts because we know our loved ones are more than their bodies.
Our attention occurs everyday, when our loved one needs it most, not when it is convenient for us. And our care has little, if anything, to do with what will happen to our loved one if they get better because our attention is focused on what is happening now.
So when someone minimizes the job you are doing as a caregiver, remind them that not all attention is created equal. Even though attention seemingly requires no particular set of skills that can be neatly bullet-pointed in a resume, it’s amazing how rare a gift it is to give and receive attention without qualifiers.
When we think of care, we typically only think of the care we give to loved ones. But much of our energy, thought, and time is spent in consultation with others. Even though care is almost always carried on the shoulders of one person (probably you), family and friends will want to know what’s going on and feel like they are a part of the process.
This means that primary caregivers also have the burden of convincing or informing others of care challenges, concerns, and impending decisions. Unfortunately, the burdens of care are so great and constant that few caregivers have the energy or know-how to explain, justify, or influence the well-intentioned yet sometimes suspicious audience of family and friends. Here are 3 simple but effective communication tips to keep in mind when communicating care to others:
(1) Don’t Forget to Remind Others of the WHY—Experts have objectivity on their side when it comes to influencing others. This means professional caregivers like doctors and nurses are believed because of their expertise and professional training. Their distance from us is usually thought of as a persuasive advantage.
However, your subjectivity—your love for the person you care for—isn’t a disadvantage. When communicating with family and friends, begin the discussion with an explicit statement of love and care: “I love Mom so much you know I want the best for her. And because I see her most of the day, I wanted to talk about….”
In the middle of any discussion with family and friends, remind them that your concerns and suggestions come from a place of love: “We both love Mom so much that I know we don’t want her to be alone at night. That’s why I wanted to talk to you about getting some help for the evenings….”
At the end of any discussion with family and friends, remind them of your shared goals. Too often, the content specifics of a discussion camouflage the why of the discussion. Although the specifics of each discussion may change, the why—your love and care for a loved one—will always remain constant. Focusing attention on the why can help keep your audience grounded in what matters most—the well being, comfort, and safety of the person you care for.
(2) Don’t Forget to Remind Others of the ‘We’—As a primary caregiver, the burden of explanation almost always rests on your shoulders. Because you are carrying the overwhelming burden of caregiving, it’s no surprise that discussions with family and friends are often perceived as an “I” vs. “they” scenario.
Just don’t forget that, when it comes to explaining, informing, and/or persuading family and friends, your voice will matter more if you help eliminate the “I’” vs. “they” perception that often exists in the minds of family and friends.
If you lead only with the “I”, your voice will more likely be perceived as antagonistic and unfriendly: “I have a problem when it comes to helping Dad understand that…”
If, however, you lead with the “We,” your voice will more likely be perceived as agreeable and friendly: “We have a problem when it comes to helping Dad understand that…”
Most people want to feel like they are included in the process of discussion, even though they may not be involved at all in the actual care process. Feeling excluded (i.e. “why does he get to make all the decisions”) is likely to encourage others to disagree just to disagree, making your care duties and responsibilities even more difficult and exhausting. Of course, the responsibility of care still may rest almost entirely on your shoulders, but encouraging others to feel like they have a voice in matters of care is an important step in facilitating goodwill and support.
(3) Don’t Forget to Use Stories as ‘Evidence’—Professionals like doctors and nurses have statistics on their side. That’s how they help others understand the significance and relevance of what they are talking about. As caregivers, however, we don’t typically have statistics on our side. We have stories.
Stories, or narratives, are the perfect language of persuasion and influence for caregivers. Stories focus others’ attention on what’s important. Stories provide detail so others can relate and identify. And stories help others understand the problems and challenges in vivid and descriptive language.
If you are trying to help explain the fact that a loved one is in serious pain and needs palliative care, use a story to illustrate what it’s like when your loved one is in pain. What do you hear? What does your loved one say? How long does the pain last? How does your loved one look when in the midst of pain? And, just as importantly, what is it like from your perspective, as a caregiver, to hear and see someone you love endure such hardship?
When explaining care to family and friends, keep in mind the following tips for telling compelling care narratives:
- All stories have a beginning, middle and end
- Make sure your story fits together and makes sense
- The story should help others identify and understand in vivid ways what you see, hear, or feel as a primary caregiver.
Remember, care is not only about what we do or give to our loved ones. Care also requires that we constantly communicate/inform/persuade family and friends who want to feel like they are a part of the process.
“Do this three times a day, ” the doctor says. The common response: “Okay, no problem.”
“Take this and make sure to take it 3 times a day,” the doctor says. The response, “I sure will. Thank you doctor.”
When doctors tell us to do something, we follow, or at least try to. But why is it that doctors are so rarely questioned but when we, as caregivers, say something, it is almost always questioned by family and friends alike?
1. Credibility by credentials–Yes, doctors have an inherent advantage over caregivers like you and me when it comes to persuasion. And they should. Through years of exhaustive mental and physical dedication, they have earned two magical letters that follow their names – M.D. They memorized. They stayed up late nights. They learned medical terminology that most of us can’t pronounce. They endured years of schooling. They suffered so they could help others.
But there’s something more that separates professional caregivers from you and me. When we walk into a doctor’s office, we have already accepted their inherent credibility. The M.D. that follows their name frees people to focus attention on explaining a medical problem or concern. Their credibility gives patients and family members permission to know that, amidst the uncertainty of physical pain or suffering, someone is different enough from them to possess certainty of answers. That’s peace of mind.
When we care for a loved one, however, we are rarely, if ever, considered an expert by family and friends. We are considered caring and loving, but not experts. Therefore, what we say is always taken as a hint or a suggestion, not something that should be written down, let alone accepted or appreciated. Most of us don’t have an M.D. behind our names, therefore, no matter how much time we spend observing, caring, loving, being near our loved one, others will inevitably feel compelled to critique, question, and sometimes, oppose what we say.
Just remember: our ability as caregivers to persuade is always limited because we aren’t doctors with a degree. So, no matter how eloquent or clear or right we are in what we say, caregiving is not considered an expertise, therefore, what we say will often be greeted with varying degrees of reluctance.
2. The Sameness Effect–Doctors have an inherent advantage over you and me when it comes to believability. We don’t know the doctors we visit very well. Yes, we know them in a particular context, for a few minutes at a time, but that’s it. Here’s a sobering fact of persuasion: The less we interact with people believed to possess high credibility (remember the M.D. behind their name), the more likely we are to believe what they say.
On the other hand, as caregivers, we are intimately known by family and friends. On the surface, you would think this would help our persuasiveness. But this isn’t the case. It is oftentimes hardest to believe someone we know the most because we share a common history. Others have seen us in our worst moments. Others knew us when we were irresponsible. When we’ve been angry. When we’ve been upset.This means that what we say about caring for a loved one will always be filtered through—“I know who you are —you’re my brother or my sister or my aunt”—and interpreted in light of the past.
Doctors words, on the other hand, are listened to with baited breath and uninterrupted silence because we don’t see them off hours, when they too are all too human—with resentments, frustration, and moments of impatience just like us. Therefore, as caregivers, what we say is sometimes overlooked because we are perceived as too alike the very people we are trying to influence.
3. Other People’s Turf—We have to make an appointment in advance to see a doctor. We dress up to go a doctor because we will be seen in public. We have to drive to see a doctor. We have to wait, in a waiting room, to see a doctor because we believe all of the effort (and hassle) is worth finding answers.
As caregivers, our turf isn’t in public, where someone has to travel to. As caregivers, our space is the private space of the home. Everyone is welcome in the private space of caregiving. There is no waiting time. No appointments have to be made to see us. We’re thought to be accessible 24-hours a day. And here’s why this matters when it comes to persuasion: the more available we are to others, the less our words carry weight. This is the great irony of care—the very love we have for another that compels us to care, also makes it almost impossible for us to be persuasive when talking with friends and family.
So it’s not the fact that others don’t listen. It’s not necessarily the fact that sometimes others seem to be disagreeing just to disagree. It’s that most loved ones and friends don’t know how to listen to caregivers like you and me. All of us know how to listen intently to experts like doctors. Few people, however, know how to listen to caregivers whose care, time, energy, and resources are completely defined by love, not a degree.
Next week, look for the latest blog post about 3 essential skills you need when successfully communicating with family and friends.
Our deep care for another makes us feel vulnerable and changes the way we interact with the outside world. So, when you find yourself feeling particularly vulnerable, how can you ensure that feelings of vulnerability don’t get you down and isolate you from others?
- Be forgiving. This is easier said than done. Everyone and everything looks different when we are vulnerable. Our thoughts even sound different to us when we are vulnerable. Remember, not every thought needs to be listened to. You aren’t perfect. You can’t expect perfection from yourself. And others shouldn’t either. It’s okay to want to be alone. It’s okay to need time to yourself. It’s okay to feel like you have nothing to say to others and to know that you may not be in the right mindset to listen to others nor respond to others’ requests, emails, phone calls, etc.
- Realize the feeling of vulnerability is temporary. Feelings of vulnerability appear permanent—but they are like spring storms, sometimes deluding us into believing that their intensity is a sign of permanence. All of us feel more vulnerable at particular times of the day, or particular times of the year, or around specific people. Knowing when you feel vulnerable (at night, or on an anniversary, or during a weekend, or when you look through old pictures) will help you weather the storm of vulnerability. Simply knowing that the vulnerability you feel is a reflection of the moment, rather than a permanent state of existence, can help you endure the moments that make you feel alone and apart from others.
- Know what you need. When you feel particularly vulnerable, know what you need. We do this in every other aspect of life. When we go out in the sun, we put on sunscreen, bring our sunglasses, and grab a bottle of water. Likewise, what do you need to comfort yourself when you feel vulnerable? A book? A friend? A quiet space? A funny movie? A pen and paper? Find your method for coping with feelings of vulnerability and be diligent about comforting yourself in the way you know most helps you. Do you not compromise on giving yourself with what you need when you are most at need.
- Prioritize obligations. Not everything needs to be done at once. Not all phone calls and emails need to be attended to immediately. Instead of allowing yourself to feel overwhelmed by what you think needs to be done immediately, write down the top 5 priorities. Then, make sure and cross off each item as it is completed. You must give yourself the luxury of knowing there is an end to what needs to be accomplished for the day and you must give yourself the luxury of knowing when and in what order outside obligations need to addressed.
- Be strategic about your sociality. Not all people are created equal. Know who drains you and who energizes you. Don’t make the mistake of putting your vulnerable self at risk with the wrong person or crowd that will drain you of the valuable energy you need for caregiving and for yourself. Do not feel guilty about discriminating among and between those people and activities that energize you and those activities that drain you.
Are you acutely sensitive to what someone says or doesn’t say? Recently, have you found yourself unable to gather the energy to spend time in the company of others? Do you try to protect yourself by retreating from social opportunities? Do you feel like you are on the verge of tears every time you open your mouth to speak?
Vulnerability is defined as having “little resistance to some outside agent.” Simply put, feeling emotionally and psychologically vulnerable is a side effect of caregiving because, as caregivers:
- We see change everywhere we look. Most others see permanence and consistency in everyday life. For most people, yesterday is the same as today and today will be the same as tomorrow. As caregivers, however, we see change and impermanence everywhere we look. Yesterday isn’t the same as today and we have no idea what tomorrow will bring. Every morning we awaken, we see physical, emotional, and cognitive changes in our loved ones. Soon, we can’t help ourselves from expecting everything and everyone to change, all the time. In the blink of an eye, everything we once took for granted is put into doubt and everything appears fragile and beyond our control.
- We feel we only have so much energy to give. When we give so much of our time, energy, and focus to another, it’s no surprise that we feel we don’t have much energy to spare. So we try to protect ourselves and save energy by reducing our outside activities, obligations, conversations, friendships, and commitments. Unfortunately, over time, almost all activities are viewed as draining and overwhelming and exhausting. Eventually, the mere thought of getting together with friends, of participating in activities, of returning phone calls and answering emails becomes exhausting, ensuring that we retreat farther and farther away from others.
- Our moods are always mixed, never pure. Others’ moods seem to be easily captured in easy-to-follow categories: “I’m happy”, “I’m positive”, “I’m hopeful.” Our moods, however, are almost always mixed. One minute we are happy and joyful, the next, we are angry. Then, an hour later, we are hopeful and depressed, simultaneously. Trying to wade through the confusion of our own moods is exhausting in its own right, and the thought of trying to explain our moods and mindset to others seems so overwhelming because how do you answer the question “How are you feeling?” when you feel almost everything, simultaneously?
Our deep care for another can make us feel vulnerable and change the way we interact with the outside world. So, when you find yourself feeling particularly vulnerable, how can you ensure that feelings of vulnerability don’t get you down and isolate you from others?
They’d walk by, leisurely pushing baby strollers enjoying the late summer nights. Some would run by. Neighbors would walk within sight, entering and exiting my view only long enough to get their mail. Some would furiously drive out of their driveway in reverse, late for something with someone, somewhere.
I couldn’t believe no one ever noticed me. I was looking at them through the bedroom window where my mother’s rented hospital bed had been placed. They didn’t notice me. Day after day, hour after hour, though the window next to Mom’s bed, I stared. They didn’t look back. None of them. I stared and stared and stared and yet, I was invisible.
I wanted someone to notice me. I wanted to scream through the bedroom window, “Hey, you! Yes, you! Do you know what’s happening in here! Do you know? Do you care?” But that scene never played out. And I never yelled out. And people never looked in. They had lives to live. Places to go. Calories to burn. Mail to get. Leisure to enjoy. Lunches to make. Errands to run. Appointments to make. As a caregiver, I didn’t.
As caregivers, we look at the world from the inside out. Most people, they see the world from the outside in.
I watched others. They lived their lives.
I overheard their conversations. They talked of upcoming holidays and family reunions.
They exercised. I sat without anywhere to go.
They had to get somewhere on time. I had too much time with my thoughts.
For caregivers, our inside-out view of the world can make us feel invisible, alone, isolated, and yes, like outsiders living in a world of insiders. So what you ask? Feeling invisible to the rest of the world has real consequences. Here are just a few:
1. The longer we are alone with our thoughts, the more distorted our thoughts become. The more I watched others live their lives, the more I wondered if the people I watched were purposefully avoiding me. I really did convince myself that the people on our street, our neighbors, and even passerbys, purposively didn’t want to look through the window to notice me, my dying mother, and my father.
Left to my own thoughts, watching others from the inside out, I had convinced myself that they didn’t notice us because they must have not liked us. And then I convinced myself that they were avoiding us. And then I convinced myself that that they didn’t care. Eventually, I became more and more convinced that since the outside world stopped caring about me, I should stop caring about them.
2. The more removed from others we feel, the more reasons we find to stay away from others. This doesn’t make sense, right? You would think I would have wanted social companionship so I could turn my staring into conversing. But that’s not what happens. The more we feel separated from others, the more reasons we find not to get out of the house and spend time with others. When friends called, I’d tell them I didn’t feel like going out or it wasn’t a good day. They wouldn’t understand my situation, I had convinced myself. I was different. They had places to go and people to see and errands to run and appointments to make. I no longer did. What would I say to them? What would we have in common? The more time I spent in silence watching others, the more I convinced myself I shouldn’t spend time with others.
3. The more removed you feel from others, the more strange it feels to be in the company of others. When I did leave my inside view to venture into the world to run errands or get food for the family, I convinced myself others knew I was different.
When trying to order a sandwich, I stuttered. The words wouldn’t come out smoothly. When trying to come up with small talk to talk with the cashier, I didn’t know what to say. And I didn’t want to talk about the weather. I didn’t want to fake it anymore. I didn’t have the energy to act interested in the latest television show or the latest news story. I was convinced others knew that I was an outsider. Everything and everyone seemed to move so fast. I felt like I was moving in slow motion, awkwardly off a beat from others’ rhythms. So I kept my head down and became more purposeful in my errands, trying to avoid conversations and small talk with others. I had to get home, I convinced myself, where I was wanted. Where I was needed. Where I was an insider.
As caregivers, we don’t see the world the way others do. We see the world inside out and so it’s no surprise we feel alone and apart from others. But, we must attempt to keep our social stamina, even when we don’t feel like it. Especially when we don’t feel like it, being with others can help keep us from distorting our own thoughts in the privacy of our own mind.
