I know, I know…care is perhaps most powerful and influential when experienced face-to-face. I’ve written about the secret language of caregivers and the important benefits of in-person care. Yet, the scope of our caregiving responsibilities requires us to think about the different ways we can care—like a painter who begins with primary colors, but then […]read more...
Ever wonder why caregiving gets so little attention and informal caregivers like you are so often underappreciated?
Some of the more significant transitions in contemporary life—from getting into college to landing a job—are composed of life-long dreams, hopes, and preparation. Unfortunately, not all life experiences receive the appreciation they deserve since status follows public acknowledgement. Here’s why care and caregiving is so overlooked and undervalued…
- There are no standardized tests to determine who can become an informal caregiver. Our culture adores standardized tests because they provide an easy way to measure ourselves against others. Ideal candidates for care, however, don’t have to know any specific type of information but they do have to possess one undeniable trait: the ability to constantly adjust and adapt. Instead of responding to abstract questions, resilience and adaptability are the key markers for admission. It’s easy to compare IQ scores but nearly impossible to compare scores of resilience. People with high IQs feel compelled to tell you about their numbers, whereas resilience and care are always demonstrated. You don’t need to tell anyone you’re resilient, others around you just know.
- Instead of a cover letter showcasing the ways in which your intelligence, experience, and training mean you are one of a kind, caregiver cover letters would feature our insecurities. This type of letter would require an acknowledgment of our weaknesses. Our fears and frailties would play center stage. These parts of ourselves are prerequisites for care because they allow us to empathize with others. Any references to future outcomes would surely disqualify someone from the caregiver role. Caregivers don’t begin this journey out of self-interest. We don’t work in the realm of outcomes. We live in a world of doubt and hesitation where the future is about the next hour, not a strategic plan to climb the corporate ladder. The only ladders caregivers want to climb are to get us closer to someone we care about, they’re not designed to get us out of a situation.
- There are no fancy promotions or ceremonies marking your performance. Days, months, or even years may pass without anyone paying any special attention to your efforts. Few will recognize your years of service, effort, impact, performance, or capacity because there is no special hierarchy differentiating one caregiver from the next. And there aren’t communal commemorations because caregivers rarely associate with one another in person. Rarely, if ever, will you hear caregivers speak of themselves as a class or group. Caregivers don’t allow themselves the privilege and comfort of the “we” because there is no union of caregivers, simply a legion of “I’s” doing and being and serving.
- Parents and relatives and friends won’t be able to brag about your experiences. There are no “schools” of informal caregiving—no Harvard or Stanford to use as a guiding goal from which others can respect and admire. Others may speak highly of your role and your efforts, but it begins and ends there. There is nothing for outsiders to show their support of your value—no jersey to buy that binds you to another, no bumper sticker that highlights your efforts, no stock market of care that would legitimate your endeavors.
- The caregiving role doesn’t mean you are heading to an exotic location for your hero’s quest. The excitement and mystery of heading off into the world isn’t part of the caregiver role. Care isn’t found far away. It’s up close and personal. Inspiration doesn’t come from the exotic. It comes about because of shared relational history. There are no fancy orientation sessions preparing you for what is to come and how to respond. We don’t have the luxury of getting ourselves (and others) ready for what is about to come–“In three months, I’m going to be a caregiver.” The caregiving role can’t be planned. We respond to it before we even know we’re in it. You don’t step into the caregiving role, it steps into you.
- There are no alumni “homecoming” parties. There are caregivers next door, down the street, down the hall, and in the next cubicle. But their efforts often go silent and unnoticed because there are no parties or reunions to mark them and their role. Caregivers often think their role is so unique that they have little in common with those in the same situation. Where would they return to? What would they say to their children about how the experience of care changed them when care is not bound to any one place? Care isn’t something that happened to us during a certain year, it’s something we still live with. For caregivers, the where is always secondary to the who because it’s nearly impossible to explain how you were changed when care changes every part of how you see yourself.
One day, perhaps soon—caregivers will begin to be valued because it’s a role that will come to us all at some point in our lives. It is the one transition in life we all experience—just not at the same time. I dream of the time when our culture will boast of care and caregivers with the same pride it speaks of someone who has made it into a prestigious school or works for a highly-acclaimed employer. Then, and only then, will we begin to know our care experiences have achieved the status they deserve.
I know, I know…care is perhaps most powerful and influential when experienced face-to-face. I’ve written about the secret language of caregivers and the important benefits of in-person care. Yet, the scope of our caregiving responsibilities requires us to think about the different ways we can care—like a painter who begins with primary colors, but then finds beauty and possibility from mixing different colors with a variety of media from oil to acrylic to water.
The depth and breadth of our caring cannot be reducible to one medium, so it’s important to better recognize how our care choices affect the types of care we give and receive . . .
In person-care allows the sharing of time and space in a particular moment with another. In-person care means we need not have to say anything—our presence alone is sufficient as it invites the use of our full body and self to communicate the deepest form of care through a shared glance, the touch of a hand, or the sacred comfort of complete silence near someone we love. At the same time, in-person care presumes we can share the same space at the same time, a luxury that many of us may not be able to enjoy because of geographical distance, work obligations, and family responsibilities. Unlike other forms of care, face-to-face care requires complete presence and attention, even when we (and our loved one) may not have the energy or capacity to bring our full selves and bodies into the spontaneity of the moment.
Phone-based care is remarkable in its capacity to allow us direct access into the inner world of the person we love. It is so easy to pick up the phone and immediately hear the unique tenor of your loved one’s voice while filtering out the rest of the world as you and your loved one hear and respond in real time to one another. At the same time, phone care requires both parties to verbally express their thoughts. Sometimes, however, the obligation to put our thoughts into words may be too much for us and our loved ones. The phone does not allow for the benefits of mere presence as we do not call to hear silence, rather we expect the person on the other end of the line to be able to fully participate—hear, interpret, follow, respond—even though this type of mental and communicative dexterity may not always be possible.
Texting allows us to remind our loved ones that we are thinking of them when we are not physically present. Texting a picture sometimes eases the burden of having to put into exact words what we are thinking and feeling. Unlike the phone, texting allows access without demands—we can remind another we care and our loved one can choose to respond in his or her own time. Work conflicts, time zone differences, morning/night person disparities, etc., can be overcome because a text can be examined and responded to in the flow of our loved one’s schedule, not ours. At the same time, texting requires both parties to have a smart phone, know how to use the texting feature, and feel comfortable communicating in quick and informal exchanges (an emoji or quick phrase) rather than in complete and grammatically correct sentences.
Letters and email allow us to transcend the individual moment and purposefully share thoughts and experiences that we may not feel comfortable nor know how to express in face-to-face encounters. While writing letters or emails allows us to share what we most want to get across without the challenges of the physical moment—embarrassment, stuttering, interruptions, distractions—they are also the most time-consuming of communication choices and requires the most forethought. And yet, this very forethought may be the letter/email’s greatest appeal as the effort it requires demonstrates our care and what is written remains permanent in ways that allow us to revisit and remember for years after.
We are multi-dimensional, so why would we expect our care to be the sole property of any one medium? Care is so complex and dynamic that it calls us to use whatever care medium is necessary. Like an artist, we need not become constrained by any one medium. Our care should always be guided by using the tools best suited to create the appropriate shade and hue and coloring and texture needed for the particular person we care for, given our specific situation and relationship, amidst the constraints and opportunities of our unfolding lives.
We know more about more people than we ever have before but this is seldom a result of the asking of a specific question to a particular person amidst a distinct situation. Yes, people share. And overshare. Advertise. And celebrate. But do we really understand?
Caregivers, when was the last time someone asked you a question? A genuine question. The kind of question that is asked of you, for you, and about your situation. Not an assertion or accusation but a question. Not a camouflaged statement that allows the questioner to tell you more about him or herself. No, a real, genuine, question that allows you to explain, contextualize, and share so others can help better understand you, and your situation—not what they think of your situation—but your situation as it is being lived and experienced in your own words.
When it comes to health, most people don’t like to ask questions. Health makes people squeamish. Answers can’t be predicted. Health is private, we tell ourselves—we shouldn’t pry. It’s none of our business. If they want to tell us they will, we convince ourselves. Anyway, if we did ask, we might make someone uncomfortable. We might make ourselves uncomfortable.
Rita Charon, a physician and professor at Columbia University, writes eloquently of how she begins each patient encounter. Upon greeting a patient in her doctor’s office, she says,
“I will be your doctor, and so I must learn a great deal about your body and your health and your life. Please tell me what you think I should know about your situation” (Narrative Medicine as Witness for the Self-Telling Body, 2009, p. 122).
Beautiful, isn’t it. Revolutionary too.
The last line, “Please tell me what you think I should know about your situation” distinguishes her, and her invitational style, from so many others. She allows her patients to draw their own lines—to mark what’s (un)important—beginnings, endings, significant concerns, fears, worries, what an illness means, how it affects their lives, expectations, and future—in their words. Not hers. Their story, narrated in the language of their everyday voices, comes alive not because of a perfect question, but because the question is the permission for their story.
Caregivers, if there was one question you wish you were asked about your caregiving situation, what would it be? What would you like others to know about your challenges? What would you like others to know of how you are making sense of caring for someone you deeply love while also trying to navigate your own concerns, hopes, and anxieties?
Questions are magic—not the questions themselves—but what they make possible. Questions allow us to see how others see their world(s). What makes sense to them. What doesn’t. There is no perfect question. There are merely questions that allow us to grow toward one another that go beyond clichés and the weather and a listing of accomplishments. Open-ended questions are the ultimate act of care—they simultaneously demonstrate the questioner’s care for another while also allowing a shared reality to be created between two people that defies mere information or answers.
If you want to make a radical statement of care that doesn’t require any training or cost any money or require an appointment—ask a question and allow another to bring you into their world.
If you know someone in a caregiving situation, or if you are in a caregiving situation yourself, ask someone (or yourself) this one simple but profound question and you’ll be surprised where it will take you:
Please tell me what you think I should know about your situation.
You might be amazed at what happens.
Not all relationships are created equal. Engaging in a friendship relationship is different than a romantic relationship, which is distinct from a parental relationship. Unfortunately, our prior relationships rarely prepare us for caregiving because it is unlike any other kind of relationship we’ve experienced. If you’ve ever felt unprepared for your caregiving relationship, it may be because . . .
- Caregiving Relationships Don’t Have Clear Beginnings. Most other types of relationships encourage clear beginning stories. These “I’ll never forget the first time we met” narratives are essential because they remind participants of their common history in ways that strengthens their commitment to one another. For caregivers, origin stories are not encouraged because others don’t want to hear when our care relationship began, they want to hear about when it might end. So our care beginnings can become blurred over in ambiguity and confusion: When exactly did your care begin? It’s oftentimes hard to discern, isn’t it? Was it with the first doctor visit? Or did it begin when your loved one talked about her pain months, or even years, in advance of an official diagnosis? Amidst this confusion, we don’t give ourselves permission to indulge in an origin story that might capture and reinforce the unique bond of our caregiving relationship.
- Caregiving Complicates our Understanding of Relational Choice. In almost all relationships other than family, participants are believed to act on choice. When a relationship dissolves, it’s because of choice—a recognition that the reasons to be together are less than the reasons to be apart. Caregiving, on the other hand, isn’t all about choice because a relationship defined by care means that need, obligation and challenge can’t be untangled from the discernible threads of love, opportunity, and willingness. We don’t seek out caregiving relationships, they come to us as both parties are called to become something other than they had imagined—clearly, no one wants to be ill nor does anyone dream of the perfect caregiving relationship in the same way they might idealize a perfect friend or life partner.
- Bonding Over the Future May Not Be Possible. Most others’ relationships are intensified by talking and dreaming out loud about the future—“I can’t wait until we get away for our one-year anniversary”—to bring them closer together in the present. For caregiving relationships, both parties must seek to establish ongoing connection without the future as a crutch. It’s no surprise that when the intoxicating language of the future tense is stripped away, the caregiving relationship itself is filled with anxiety and uncertainty.
- Caregiving Relationships are Not One-Dimensional. Using the one-dimensional label of ‘caregiver’ to account for all care-inspired relationships denies the diversity of our care experiences—acute, chronic, in-person, long-distance, mother, father, sibling, alone, familial, amicable, antagonistic—and also makes it more difficult for us to express our experiences. Everyone recognizes both the joys and challenges of friendship and romantic relationships—the inevitable ups and downs, tensions and joys, frustrations and thrills, fears and possibilities. Unfortunately, caregiver relationships aren’t given the same freedom, so our relational realities of laughter and sadness and life-altering appreciation and mourning and connection and isolation can’t help but be misunderstood.
Mapping the terrain of our care-inspired relationships is so important because it allows us to speak to our experiences beyond the I and into a we where strength and support comes from knowing our path is not to be experienced in the darkness of mystery and isolation. It’s way past due for our care-inspired relationships to come out of the darkness and into the light of understanding as we are called to these most precious of relationships when we least expect them.
In almost every context of contemporary life, people are in a rush. There are so many things to do and so many things to accomplish—multi-tasking, we are told, is a necessity. Multi-tasking has become so revered that prospective employees list it as an accomplishment on resumes, advertising their ability and willingness to simultaneously divide attention amongst multiple people and activities. While researchers have explored the effects of multi-tasking on the brain, multi-tasking also affects how we orient ourselves to others. Here are some common but often overlooked relational side-effects associated with multi-tasking:
- Multitasking becomes code for a fear of commitment. Everyone is guilty of interacting with others halfway. Few of us have developed the capacity to be with another person without trying to escape—mentally that is. The need to single-focus is too much pressure, we tell ourselves. If we are fully present and focused, too much will be at stake. We must have a way out, a way to protect ourselves. So we constantly check Facebook and can’t help ourselves from examining our latest texts. Our discomfort with single-focused attention reveals an unwillingness to risk the possibility of silence and awkwardness sometimes associated with undiluted attention. Radical attention is frightening because it signals complete commitment to a particular moment, leaving us vulnerable to what might be discovered if we temporarily free ourselves from thinking about what’s next.
- People become tasks to be managed and accomplished. Busyness requires shortcuts, and so when the people we meet and know become categorized as contacts, quickly added and listed in our phones by organization and title, referenced by whom they work for and what future benefit they might serve, it’s not surprising that relationships are often reduced to self-interest. This multi-tasking orientation encourages viewing relationships only in terms of personal gain and what people represent, rather than allowing us to learn about who people are as individuals. When we are too purpose-driven in our relational orientation, people become objects to be managed, treated as strategic pawns for personal gain, limiting the possibility of something spontaneous emerging from the fact that fully being with another might be reason enough.
- Focus asks too much of me. When the temptation to escape the moment emerges, we convince ourselves that we must do so to be available to others. “I have to have my phone nearby, what if I get a work call?” “What if my kids call?” “What if someone needs me?” In the process, the ring of our phone and sound of an incoming text is viewed with greater urgency than the person we are with. We have become so accustomed to responding to others’ needs that we have become uncomfortable allowing ourselves the opportunity to develop and intensify relationships with the people before us. There will always be another email waiting. Another voicemail. A text asking for your divided attention. Always. A moment to be shared with the person in front of us, however, is always fleeting. If we willingly allow ourselves to believe that everything we need is present in that given moment, we also permit ourselves to temporarily neglect the world’s concerns and attune ourselves to the shared truths before us.
Just as the slow food movement asks us to be aware of the processes involved in the food we create and eat, caregivers appreciate the process of relationships in ways most others don’t. The multitasking world asks us to be divided, disjointed, and over-committed, running to and from one task to the next, oftentimes forgetting where we are and whom we are with, leaving us empty and hungry, unwilling and incapable of being satisfied with who is in front of us.
On the other hand, caregiving relationships teach us to be whole, complete, and single-focused because these relationships require all parts of us to be present and attuned to the person we are engaged with. We don’t list this remarkably rare capacity on our LinkedIn profiles or resumes as a skill-set, we simply call it caring with love. It’s what you’ve been doing for a long time; slow-care for another that acknowledges the preciousness of attention. You and your slow care attention are indeed extraordinary.
Most people talk about the new year as if it is waiting to be colored by the palette of pure choice and unlimited possibility. For those of us caring for someone in need, however, the future is oftentimes filled with uncertainty as life seems to come at us unexpectedly, contorting us into feeling powerless and claustrophobic.
Thinking about the future should come with warning labels to protect us from what happens when our beliefs about what may happen can also keep us from fully experiencing the present. The following are some treacherous thinking patterns that we may need protection from when we get caught up in what is yet to come:
- “Once this is over, then…” This orientation to the future is based on the type of linear thinking that presupposes we have complete control of what is to come. It’s a favorite amongst young people whom have been trained to believe the present is worthy of enduring only because of what it might lead to—graduation, better job, raise in salary, marriage, etc. Planned expectations about the future can sometimes be sources of motivation, but we need protection from these beliefs when our current caregiving situations don’t fit with others’ narratives of control. For us, the future may seem so ambiguous or so dire that we can become consumed in what might happen that we are prone to overlook what might be clearly before us and within our control. If we can resist the temptation to become preoccupied with the belief that our present situation is worthless but for what it might lead to, we can better protect ourselves from the tendency to simply endure the present and risk overlooking what might be precious in the moment.
- “You’re next diagnostic will be in . . .” For caregivers, our schedules are often determined for us—from one test to the next, from one doctor’s visit to the next, from one rehabilitation visit to the next. Next appointments, as guides to the future, are worthy and necessary. However, others’ appointments for us and our loved ones can also make it more difficult to make sense of the never-ending, always something more, out of control feeling that accompanies diagnostic thoroughness. In the process, our hopes and expectations can’t help but be dragged from one appointment to the next—days, weeks, and months into the future—leaving us feeling that peace of mind cannot be achieved until the next appointment, the next confirmation, the next blood test, the next screening, the next second opinion. Amidst this seemingly never-ending waiting game, we need to protect ourselves from the belief that life can only be appreciated after we reach the next milestone. When in the grip of nexts, we must remind ourselves that peace of mind must not be deferred to some future date, rather it is our challenge to find and create it now without always having to wait for others to tell us so.
- “First and last . . .” This organization of time requires us to chronologically sequence our experiences in a series of first and lasts. Once we use the labels of “firsts” and “lasts,” we can’t help but find ourselves changed. In the days and months leading to the labeling of a loved one’s “lasts”—treatment, visit, appointment, conversation, goodbye—our minds can’t help but be consumed in categories that inevitably leave our bodies adrift in the moment, nullifying our capacity to be present. Organizing our experiences in this way means that our awareness of the present can’t help but become blinded with the glare of lasts. When this happens, we get caught in an endless cycle of waiting for what is to come and yearning for what once was. If we are fixated on marking firsts and lasts, we may miss out on the opportunity to mark our middles and invite our thoughts and bodies to experience the everyday in unison, featuring the unfolding now as our most treasured source of control.
For some, the new year is a time to deny the present and imagine a life waiting to be crafted into a sculpture of our own making. For caregivers, the future sometimes feels like shards of glass, ready to cut us if we handle it without care. When tempted to get caught up in what may happen, we must remind ourselves that how we think about the future inevitably changes how we allow ourselves to experience the present.
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 provides care to another eventually experiences burnout. Burnout is the inescapable side effect of caring for someone we love. 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 differentiate 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. 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 can you talk about accomplishments when your loved one is still ill?”
“How can you measure your performance when care shouldn’t be measured—it’s just something you do?”
“How can you reward yourself when your work has no end date?”
But what others fail to realize is that if we don’t mark our daily triumphs, we are more likely to feel like our unending, daily efforts are meaningless. And if we feel like our efforts are unworthy of self-acknowledgement, we will inevitably feel more exhausted, have less patience, be more prone to depression, be less likely to spend time in the company of others, let alone give ourselves permission to engage in activities that might recharge us.
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 shouldn’t be 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 create our own measure for 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 (or can) fully appreciate. 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.
Our measures shouldn’t be designed to impress others nor do they have to be about outcomes, they should be designed to help remind us of why we caring for someone we love:
I smiled today.
I allowed myself the luxury of enjoying my coffee next to my loved one.
I picked up the medication before the pharmacy closed.
I paid bills that I had been putting off because I hadn’t had time before.
I answered a phone call from a friend whom I hadn’t talked to in a while, and I gave myself permission to allow her to bring food over next week.
Care and physical exhaustion are often 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. Let’s start now…
You are stressed. Overwhelmed. Can’t sleep even though you are exhausted. 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, especially when we don’t feel we have enough energy to be around others. 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 in an attempt to find 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.
This holiday season, think twice about saying no to others’ invitations to be social. 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. Laughter 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.
Loneliness has become a hot topic recently with research studies highlighting its biological dangers. Too often, unfortunately, loneliness is only talked about as if it is an individual phenomenon apart from social roles. If you are caring for someone, you may be more prone to loneliness because you simultaneously live in two contradictory worlds, making the experience of connecting with others all the more challenging. Here are just a few of the ways in which your multiple roles may complicate connection with others:
- The rhythm of our two worlds is never in sync. Outsiders describe their world as hectic—driving to and from one event to another, endless work obligations, running errands, getting food on the table, child care responsibilities, vacations, hobbies and on and on. Outsiders are always on the go. Hectic, no doubt. But the pace of the outside world is the same—always fast. Slowing down is considered a weakness. Caregivers, on the other hand, must not only operate in an outside world defined by speed and movement, but we must also adjust to the nuanced pace of care. When caring for someone we love, fast is out of tune. Care requires calmness, softness, lowered voices, stillness, and intimate spaces. Our pace isn’t defined by how fast we can get something done, but by a need to slow the world down. To remember a smile on our loved one’s face. To appreciate the rhythm of a loved one’s breathing pattern. To hold tight and freeze frame a moment of shared laughter that we know is fleeting. In a world beyond where people constantly move by each other, not toward one another, is it any surprise that we may feel others are moving too fast to slow down enough to notice and allow us into their lives?
- Vulnerability and invincibility do not mix well. In our world of caregiving, emotion is sacred, not profane. Tears and silence cannot lie. We are near our loved ones out of love, not because of requirement. In the outside world, performing interest is required because of our roles. Expressions indicating that we are doing anything other than “fine” and “doing well” may be greeted with fear, uncertainty, and accusations of unprofessionalism. In this world, leadership means being invincible and consistent, disallowing anything other than certainty. In the world of care, leadership means being authentic enough to be vulnerable and full of doubt, and reaching out to others to share challenges. Revealing, not hiding, our innermost thoughts and feelings is necessary to our caregiving role. It’s not a surprise then that many of us find ourselves incapable of connecting with those who don’t allow struggle to be an important part of relationships. When others don’t allow the challenges of life to be a source of commonality, it’s harder to find motivation to develop closeness.
- Strategy and authenticity rarely meet. Strategic planning, efficiency, and division of labor do not make sense in our caregiver world. Caregivers don’t have the choice of being specialists and dividing labor according to expertise. We must always be generalists. Generalists navigate the unpredictability of each moment at home, and then later at work, we must be able to talk in the language of the future, abstract numbers, and deadlines. At home, our attention cannot be divided. We don’t have the luxury of multitasking and strategically planning years into the future. Our planning is strategic about one thing and one thing only: how to get ourselves and our loved into the next hour, not the next decade. In our caregiving world, relationships matter for relationship sake, not because being near someone might advance our career or enhance our reputation. Is it any surprise that connection may become more complicated when we can’t help but look at people for who they are before us, not for how they will help us accomplish our goals?
Ask anyone who speaks two languages and they will tell you that they experience life differently. Caregivers too, must speak multiple languages, but like anyone learning a new language, words don’t come when you want. Phrases and experiences do not often translate. There is nothing wrong with us. Living in two worlds often makes it challenging to feel totally at home in any one world. Loneliness is not a sign of disgrace but proof of our willingness to navigate multiple worlds. Whereas others define themselves in one world only—we are different because we’re willing to risk participating in oftentimes contradictory worlds, even when we know there’s always something lost and gained in translation.
We are always recovering from something—a long weekend, too little sleep, too much fun, too much eating, a bad week at work, a disappointing relationship, an error on our part, an error on someone else’s part, unmet expectations, and so on. Much of our belief in recovery is a desire to return to a state of so-called normalcy. A hope that we can and will return to who we once were and to remind ourselves that the experience that changed us will define us no longer.
For caregivers, recovery means something different. Caregivers don’t seek refuge in recovery because we change in such profound ways that we often don’t want to return to our previous selves. Here are just a few of the ways in which caregiving irrevocably changes us and the way we respond to others:
- Life is interruptible. While others get caught in the rut of boredom and sameness, we can’t help but be reminded that life is constantly interrupted and interruptible. Always changing. Unpredictable. Others expect to awaken the next morning to life as it was yesterday. We go to sleep at night with no guarantees that tomorrow will be anything like today. Others talk with confidence about their future—assuredly projecting themselves days, weeks, months, and years into the future. Caregivers typically don’t. We are humbled by the present, and realize that what we think will happen is no guarantee of what will unfold. We know our only guarantee is the present.
- Control is a myth. Other people believe that their actions alone can effect change. On the other hand, our loved one’s bodies remind us that control is something that is fleeting. We quickly realize that life isn’t ordered the way we thought. Our thoughts and beliefs become chastened by our loved one’s changing physical circumstances, and the world around us seems to push us forward and around, like the experience of being thrown from a raft. Alone, and beyond the raft, the river quickly teaches us that our efforts to protest are futile—there are forces greater than our desires and efforts. Life is fragile. Our bodies are fragile. Our experiences remind us that we live in a world that is beyond our control, especially when it comes to those we love most.
- Intolerance for triviality. Healthy bodies love consuming the latest celebrity gossip and news. Their fates seemingly rise and fall with their favorite sports’ teams. Over time, caregivers’ tolerance for triviality dissipates. Spending time with people who suffer, or who are struggling, we find it difficult to digest the fixations of popular culture. Meaningless endeavors become a threat to our emerging values. Chatter about insignificant topics or faraway scandals become exhausting and overwhelming when we want someone to notice our own lives. Our challenges are not abstract—but struggles of life and death. Unlike others, we don’t allow everything and everyone into our lives. We become discerning gatekeepers—only allowing people and information that mean something to us and our loved ones. It’s all personal for us. And we think that’s a good thing
- Hellos matter as much as goodbyes. Almost everyone believes in goodbyes. Caregivers, however, pay special attention to hellos. Caregivers realize that the hello is just as remarkable as the goodbye. Someone came to see me? Someone interrupted their routine to visit? Someone prioritized me and chose to make it possible for us to spend time together? Time that could have been spent doing something else? Caregivers hold extra tight to visitors in the midst of the hello greeting because we more fully appreciate the miracle of shared space than those who take for granted the presence of others. For caregivers, the hello is the most precious and sacred of acts.
- During—not before of after. Before and after photographs are so enticing because two different images of the same person juxtaposed next to one another seemingly reveal everything we need to know about how someone has changed. The contrasting images–changes in weight (loss), hair cut, makeup, clothing–are irrefutable visual evidence that a transformation has happened. For caregivers, change isn’t about how we look. It’s relational. Value based. Internal. Our new selves do not emerge with any grand proclamations because we’ve been changed by what happens when we were with someone. Who we’ve become isn’t a result of anything that happened before or after but a result of what transpired when we allowed ourselves to be close enough to be changed by the person we cared for.
Instead of looking in the mirror to notice how we’ve changed, we should look to those with whom we now surround ourselves with. Look to the causes and organizations we identify with. Look to what we value and what we exclude from our life.
Notice that we aren’t moved by what others are invested in—we’ve been marked by the experience of care that has no expiration date. We don’t recover from being a caregiver. Care changes us. We take our experiences and our care with us and, in the process, we are remaking the world around us.
When people are gathered together this holiday season, there is nothing that grabs others’ attention more than bucket-list stories about risk and adventure like bungee jumping, skydiving, car racing, river rafting, scuba diving, zip-lining, rock climbing, exotic vacations, and on and on. These activities are almost always met with awe and appreciation because we admire people who push their limits.
On the other hand, caregiving rarely receives much attention from others. We don’t travel to faraway places. We don’t propel our bodies through the air or under the water to feel alive. Speed isn’t the proper barometer for our risks. Yet, what we do is as risky and challenging as any outdoor adventure because it involves so much more than strapping ourselves in a seatbelt. Here’s why our experiences as caregivers push us to our limits but probably won’t receive much attention around the holiday table this season:
- There is no training manual for our care. We’re not professionals. We didn’t go to school to learn how to care for someone we love when they need our help. We’re on-the-job learners. We learn by our mistakes and we adapt in real time and we keep going. There is no set of instructions we can find that will help us figure out what we are doing. Each of our situations is unique. What we do makes IKEA instructions look like a breeze. No one thought through (nor could they if they wanted to) a set of instructions to guide us through the steps of caregiving. There are no steps. We are creating our own blueprint as we go.
- There is no safety net. You can easily read about the specific medical condition of a loved one. And you might have watched a movie about someone who faced a similar situation. But when you’re in it, when you’re caring for someone you love, you can’t control when it begins and when it ends. There is no practice session. No dress rehearsals to help you figure out how you’ll respond, let alone how others will respond. One day, without warning, you’re in it and soon enough, you can’t remember what life was like before.
- Our experiences are beyond pictures. We don’t have pictures to share of what we are doing or what we are experiencing with our loved ones. Pictures are for people who engage in public acts that can be easily captured. What would we take a picture of? A laugh of joy and simultaneous sadness? Physical presence? Picking up medications? Cleaning the house? Worrying? Talking? Watching? Seeking information? Protecting? Awakening in the darkness of the night with questions that do not have answers? Because caring is something we engage in everyday, pictures seem silly. Pictures are for the out-of-the-ordinary experiences, not the everyday. Our life is filled with the ongoing necessities of care, not the vacation moments that wow people.
- It changes you. When you care for someone you love, you can’t help but change. Not the kind of change most others might notice at first, but the kind of change that affects how you see others. What you find important. Trivial. Worthy. Worthless. Some friends will suspect something—“Are you okay, you’re not acting like yourself?”—but it will be hard for you to respond because how do you explain that the person you are now is so different than whom you used to be. There is no radical transformation others can see in you—you might look the same—but caregiving is not like going on a roller coaster where it’s all about the adrenaline rush of what you did—it’s about the slow change of who you’re becoming.
- It’s not on anyone’s bucket list. Most people’s bucket lists are about things and goals they’ve dreamed about—travels to far away places and incredible feats of accomplishment. Caregiving is local. Everyday. Few people ever dream of caring for someone who is ill. Caregiving is about what currently exists—not what’s out there in the great abyss of possibility. It’s real, not imagined. It’s about the person before us, not about our ideal. It’s not about what we wanted, but what we accept as part of caring for someone. Sadly, the courage to care for someone you love doesn’t make the list of most people’s bucket lists.
This holiday season, when everyone around the table is telling you what they did this year, or what they want to do, remind yourself that it’s okay if your care for another won’t make anyone else’s bucket list. You’re engaged in a journey few engage in. You are caring for someone you love without an instruction manual, where you have to adapt each day to changing and unexpected circumstances. It’s messy. And yes, it’s risky because you don’t care for something far away. You care for someone you love. No need for a passport for this journey. No brochures. No accolades or easy-to-translate Facebook posts about your itinerary. You are risking something most others can’t imagine—being so near someone you love when they need you most. The view may not be easily explained to others, but the view does take our breath away nonetheless.
There is no greater refuge than family. Family members are on the front lines of care. In times of need, family is who we turn to first, and usually, they are the people who remain with us throughout. Our desire and willingness to provide care for the people we know and love, however, doesn’t mean family care isn’t complicated.
Here are three common reasons why providing and receiving family care can be complicated even though caring for and receiving care from someone we love is something many of us would never forego.
(1) “Of course I will, we’re family.”
Family caring for family is seemingly natural. Expected. It’s what love is all about. It’s what we do for people we love. Rarely, if ever, do we explicitly state these responsibilities, rather we internalize them and they become the very reason for our care.
“This is my father-in-law, of course I am going to care for him.”
“They’re my parents, of course I’m going to care for them.”
“I love my sister. She and I shared a life together growing up. I’m going to be there for her.”
We love, therefore, we care, but that doesn’t mean we don’t experience frustrations and challenges typical of all relationships. All relationships involve expectations, and familial care means that we oftentimes care without the expectation (or hope) of reciprocity.
As we accommodate our life to care for an ill family member, the burdens of care can become more pronounced—financial stressors, time demands, changed living arrangements, and work-care conflicts. Because we are family, we care despite these stressors. Over time, however, it is difficult not to experience frustration, burnout, and exhaustion simply because we must re-imagine our relationship with our ill loved one without the expected relational markers that once defined our relationship–shared hobbies, fellow traveler, confidant, cheerleader, admirer, financial provider, early-morning walker, lover, late-night television watcher, conversationalist….
In the midst of the unending needs of care, we must simultaneously rethink our relationship in ways that defy our past experiences without the explicit relational benefits we once received.
(2) “I know you, you know me . . .”
We know the person we care for and they know us. We grew up with them. They were our mothers or fathers or siblings. Relational intimacy is an overwhelming motive for care. A shared family history can also complicate care.
The very person we care for may feel trapped by not feeling comfortable sharing what is happening to their bodies, dreams, and anxieties because of how such disclosures might affect us. What if your mother told you of her desire to stop treatment for her illness? Of course, you’d appreciate her honest disclosure, but at the same time, would you be able to unlearn that knowledge amidst the backdrop of daily car rides to chemotherapy treatment?
Unlike acquaintances that don’t share a family bond, we must negotiate the uneven terrain of caring for a loved ones’ needs while also seeking to maintain a relationship. This relational journey can be very challenging when our care is impacted by our knowledge of the past and our expectations about what our relationship seemingly requires:
“Moms are supposed to be positive. Why is she telling me she’s done with experimental treatments?”
“Dad used to be so financially savvy. Why doesn’t he understand how caring for him is changing my own financial future?”
“I knew my brother’s body would eventually have to pay for his lifestyle. But why am I the one who has to pay for his bad choices?”
The people we care for are vulnerable. They need us. They love us. But can they always authentically and openly share frustrations with us, their primary lifeline to the world? Can they always realistically disclose doubt or helplessness or disappointment in light of everything we are providing them? Similarly, can we always authentically and openly share our frustrations with our vulnerable loved ones? Can we always realistically disclose our doubt or helplessness or disappointment when we know they depend on us for almost everything?
Frustration and disappointment are inevitable experiences of relationships, but these experiences may be even more pronounced for family caregivers and loved ones needing care. The irony is that because we know each other so well, some topics and conversations and feelings will remain silenced because of our desire to maintain our relationships with those we care about most.
(3) “What do you mean I may not understand?”
When we are our loved one’s life line, it’s hard to know (let alone admit) that our care alone may not be enough. Acknowledging that our loved ones may need outlets beyond us may be difficult to accept. Sometimes, despite our willingness to help, our loved ones may need to access and talk to others who are unlike us so they can receive support from…
Someone who has first-hand experience with a particular illness.
Someone who shares a similar diagnosis.
Someone who will not flinch or become embarrassed by what is happening to their body. Someone who will not make judgments about them and their condition.
Someone who will not hold them hostage to their past.
Someone who will not hold them hostage to their loved one’s hopes for the future.
Caregiving is something we do out of love. And it is our very love for the people we care for that can sometimes make family care deeply moving, but also complicated.
We are at a crossroads in American life—our beliefs about care and caregiving no longer reflect our everyday realities. In a recent interview with the Washington Post, Anne-Marie Slaughter, author of the new book, Unfinished Business, discusses the challenges of the caregiving role and argues that when we talk about care, most people tune out.
But why is it that care in American life is so misunderstood when we know the demand for informal caregivers—that’s you and me—is greater than ever. If you’ve ever wondered how care and caregiving have become so misunderstood and marginalized, here are some common myths that don’t reflect our everyday realities:
- “Some people are just better at caregiving than me.” Nurses, doctors, and other medical practitioners, these are the people who are the experts, right? Not necessarily. The need for care does not begin and end with professionals. Care and caregiving isn’t something we can ever fully outsource, because care cannot be contained in hospitals. We are forever grateful for the experts of the body, but care also includes helping us cope and make sense of what happens to us and our relationships as a result of our bodies. We don’t need to provide our resume to participate in a caregiving relationship with someone we love. Care isn’t reducible to something that we’re either good or bad at—attention, access, and willingness are the most profound requirements of care that all of us possess. Care doesn’t ask us to be extraordinary, but to be remarkably ordinary. To walk with someone in the midst of need. To listen. To reach out. To be available. To know that we are bound to one another not by competence, but by fragility.
- “Care and caregiving is for older people.” This myth of care is deeply ingrained in our collective belief system that associates age with need. Tell this to the college aged student whose parent has been diagnosed with Huntington’s disease. Tell this to the 30-something father of two, whose dad has Alzheimer’s. Tell this to the child whose parent has debilitating pain that affects her ability to work and provide. Tell this to a mother whose father’s mental illness affects her whole family, each day, without notice or preparation as to what the next day will bring. Care is not defined by age, status, occupation, or gender. Loss, illness, and grieving do not happen only when we get older. To be involved in life means care can’t be postponed until we are ready. It finds us, wherever we are and whatever we are doing, whatever our title, and whatever our capacity or desire.
- “I have too many things going on in my life to be a caregiver now.” We’re never ready to be a caregiver—we are all drafted. Caring for someone we love doesn’t mean everything else in our life stops. Caring for a loved one isn’t something that we simply provide or give. This antiquated notion of care means that we are completely healthy and the person we care for is in complete need. It’s never this simple. Those in need of care live with us and amongst us, amidst our many other obligations, worries, relationships, and joys. To care for a loved does not mean having the luxury of letting go of our other responsibilities. We work and care and love and suffer and support and need and hurt and raise children and care for parents and are inspired by those we care for. Caregivers are not free of need and care themselves. And those being cared for are not void of dreams, wishes, and the capacity to make a difference. Care doesn’t begin with bold proclamations and it doesn’t end when we think it will. It is simultaneously momentary and permanent.
- “Caring for someone I love will be too much for me too handle.” Suffering and need and illness do not fall upon only a select few of us. Few loved ones choose to be a caregiver. Some of us are not more apt to “handle” other’s challenges. Care and caregiving is not a specialty we major in or go to any special school to study. This is because we’re never just caregivers. Just like we’re never just employees. We’re all of these things, mixed together in ways that make care not something we do as an occupation, but something we become. Gone are the days when one person can handle care alone. Care is rarely achieved alone—it’s accomplished in coordination with doctors and nurses and family and friends and work colleagues. It’s not something that we can delegate to others nor is it something we can do all our own. Care is a social act, not a private act.
In a world of specialization, care is one area of life that asks us to do and be in ways that challenges us mentally, spiritually, physically, and emotionally beyond what we thought was possible. It is the universal, human experience. None of us know what this journey will bring. When care meets love, we are alike in that we are all unprepared.
When we’re in pain, we don’t mind screaming out, calling attention to ourselves and our experiences. We need help. Look, don’t you see? Amidst pain, we turn outward. Family, friends, and specialists alike willingly race toward us to relieve, remedy, and improve our condition.
Suffering, however, is a different experience. There are no ambulances to race to us when our expectations are interrupted and what we thought would happen is no longer possible. Few others come to us in the midst of suffering, not because they don’t care, but because we far too often relegate suffering to that of a private experience.
Go ahead, walk on by. There’s nothing to see here. This is a private matter. Keep going. That’s right, let’s respect their privacy and dignity. Let him be and give him the respect he deserves.
At first glance, these sentiments appear caring and noble, but they more aptly reflect our collective discomfort with public communication of suffering. Here are some common reasons as to why suffering is so frequently pushed away from sight into the shadows of American life.
- Suffering can’t be proven. If something can’t be pointed to, it becomes mysterious. And when something becomes mysterious, we don’t know what to do with it or how to make sense of it. If suffering can’t be pointed to on a CT scan, then it often becomes dismissed as something less than real—something you experience. That’s your suffering, not mine. Once removed from the public spaces of life, it’s ours to deal with on our own. Our property. Something we must deal with alone or hide before we present ourselves to others.
- Suffering is difficult to communicate. Suffering renders us silent. It doesn’t seem to fit within our everyday life. The experience isn’t neat and tidy, able to be categorized as bad, good, getting better. Recovery and improvement are beyond comprehension because suffering makes it so difficult to look beyond the fog of now. Disoriented and distraught, suffering nudges us away from one another, slyly convincing us that our experience is ours alone, and no one else’s. Too often, suffering appears beyond expression because it is messy and contradictory, defying all sympathy card categories we resort to when trying to figure out what will make sense to others.
- Suffering resists prediction. In the grip of suffering, the future is now. The past is now. And the present seems permanent. Unlike physical pain, suffering is scary to most others because there is no clear prescription that will make it go away. We can’t anticipate exactly when suffering will leave us. Grief. Loss. Fear. Deep disappointment and self-doubt take the future away from us, imprisoning us in a permanent moment.
- Suffering is contagious. We don’t fear other people’s pain. We do fear others’ suffering. When we see someone struggling, we are reminded of our own fragility. Of the fact that life may not be as predictable and consistent as we might lead ourselves to believe. If we acknowledge others’ suffering, then we can’t escape the fact that we are vulnerable too. Our bodies are fragile. Our relationships are constantly changing. We can’t help but anxiously watch as our expectations bend in the face of unexpected forces seemingly beyond what we thought possible. Amidst suffering, we are reminded of our powerlessness.
Instead of walking on by those who are suffering, what if we walked toward them? And what if the them was us—either now or soon to be? What if we listened to those in the midst of suffering, not because we knew being near suffering is easy, or because we have any answers, or because doing so will make us feel any better. Rather, what if the acknowledgment of suffering in everyday life created spaces for expression and acknowledgment beyond accolades for winning or achieving or accomplishing? What if we believed suffering was a testament to responding to life as it is being lived . . . not something to be shameful of, but something to remind us of our connections to one another.
In a culture that values being noticed, speaking is king. Leaders speak. Greatness is said to be achieved through words. Minds are changed and great feats are accomplished by the voice standing out and above the crowd. Speaking gets you noticed. It makes you noticed and gets you attention. Who in their right mind puts listening as a bullet point on their resume?
Listening, on the other hand, is the forgotten art of communication. Listening is said to be reserved for those who seemingly don’t have anything to say. Listening is thought to be left to those whom have no great ideas to share. No minds to persuade. No great feats to accomplish.
Here are 5 reasons why listening is more important and vital to care and caregivers than speaking:
(1) The moment we open our mouths to speak, we often close off our ability to observe and appreciate our surroundings and the people around us. Do you have something to say? Something to get off your chest that’s been bothering you for days? Some argument that’s been on your mind lately? Open your mouth and all else around you disappears into oblivion. Speaking transcends the person you are talking with and is the ultimate form of abstraction. Speaking changes situations, it doesn’t seek to understand the people or circumstances in those situations.
(2) Listening is the anti-abstraction. Listening has no past and no future. It can’t be used as a weapon to unload on another. It doesn’t allow us to purge ourselves of frustrations and angst that we’ve been holding on to. We can’t prepare for how we are going to listen. Listening always takes place in the company of others. It is the ultimate human act of now because you can’t listen unless you are in the company of a body, a voice, a presence. Listening is the ultimate act of presence and it fastens you to the moment and opens you up to all that is before you.
(3) Speaking separates us from others because we only open our mouths to say something when we want to correct or alter the world and the people around us. Speaking pushes others away from us. Speaking creates I-you distinctions—“I’m saying something . . . you pay attention to me.” When done right, speaking silences the other. “I win, you lose.” “My argument is better than yours.” “I totally shut him up with my thesis.” Statements and propositions attack and poke others into defensive postures of pro/con retreat, creating an antagonistic relationship that far too often is about outmaneuvering the other person.
(4) Listening draws others closer to us. Listening allows us to be nearer to one another, both physically and psychologically. Listening is an act of kindness, of openness. Even thousands of miles away, on a phone call, listening can make us feel like we are next to one another.
Understanding is the natural offspring of listening because it allows us to remember that we are not alone, that another shares in our current experience. When we listen, we can’t help but find ourselves turning our attention, our hearts and our presence toward another where the I and you mysteriously transform into a we.
(5) Speaking is a public spectacle to be seen and heard as far as our voice will project. Listening isn’t showy. It’s subtle. It doesn’t draw an audience like speaking does. No one will gather to hear you listen. There is nothing to be seen. No standing ovations. No curtain calls. Listening requires no amplification because the act itself draws those to whom we listen nearer to us. When we listen to another, others open themselves up to us and willingly join us.
You will undoubtedly get noticed when you speak. However, you will be remembered when you listen. Listening, the kind of listening that is sincere and genuine, isn’t simply done with one’s ears. Listening is a fully body experience that notices absence as well as presence. It is the ultimate act of faith, requiring nothing of the person before you. If you care for another, listening won’t get you noticed, but it will ensure that all else will be forgotten in the midst of what happens between you and your loved one.