The Unprepared Caregiver Website speaks to the special challenges and rewards of caregivers who care for loved ones when a cure may not be possible. The goal of this site is to provide first-hand caregiver insight and expertise, much-needed knowledge about the psychological and communication challenges of the caregiving experience.
Listening is the least valued, most misunderstood, and yet the most potent form of communication. Even though most people put “listening” at the top of their resumes, those of us who are in caregiver relationships know that listening isn’t just about remembering something and it surely can’t be reducible to a “skill.” No, it’s so much more than that. For caregivers, listening is vital to relationships because it is . . .
An Invitation . . . Comprehension is applauded because facts and information can be recorded and transcribed, memorized and regurgitated. But the kind of listening that caregivers engage in is distinct because it isn’t only about what is said, but what is made possible.
Invitational listeners create conditions for sharing and understanding. This involves a willingness to be close enough to another person to invite the possibility for genuine and authentic sharing. And sharing isn’t only about words—it’s about an awareness of your loved one that allows them to communicate in ways most others don’t ever notice because they are preoccupied with the exchange of information.
I’m not simply talking about physical presence, but a presence of attention that is open to what is possible. Openness is so scary because it means not being able to predict or control what will happen in an interaction. This is the very reason that invitational listening is so rare—it asks the invitational listener to . . .
Turn away from the world—yes, someone else might be texting or calling you—by turning toward, completely and wholly, this person.
Allow the spontaneity of the moments that follow the invitation to defy time constraints.
Invitational listening isn’t a one-time event that can be scheduled. It’s not something that takes place in a meeting room or during an interview. And it can’t be reducible to mere information and words. Invitational listening means a willingness to open ourselves up to another, rejecting all else around us, allowing personal agendas and convenience to evaporate into an embrace of this moment, this person, this possibility for connection—now. Listening is the language of attention, and invitational attention creates an undeniable motive for sharing and connecting in ways that too often go unnoticed.
To Create Closeness . . .
Listening for comprehension is great for taking tests or remembering directions but that kind of listening is too focused and restrictive. It depends almost entirely on the assumption that another person knows exactly what they want listened to as if what they were going to share were a one-time event ready for prime time. These listeners listen only to what is said in that moment, paying special attention to the new and different, the bottom line, or the main takeaway. Listening like this is loaded with conditions and can’t help but get in the way of genuine connection . . .
“I just can’t handle hearing that right now.”
“I don’t call anymore because I always get off the phone feeling so stressed.”
“I can’t handle the awkwardness anymore. Sometimes, there’s just silence. And I don’t know what I’m supposed to say or do.”
On the other hand, creative listening is so distinct because it isn’t about changing or editing what is shared in our presence. This kind of listening requires a willingness to be near another as they voice their fears and concerns and anxieties and vulnerabilities. To be near another during their disorientation. Not to change them or silence them or sanitize their stories and experiences, but to know that our willingness to listen to the apparent senselessness of the moment is necessary for creation, connection, and sense making. Making sense is never achieved in private. It’s always something created with another—out loud, in a shared presence of unconditional attention, over time, as drafts of our selves are shared and modified, reclaimed and revised, edited and altered.
Unlike other types of listening, creative listening almost always involves awkwardness and fear and anxiety and uncertainty because this type of listening is about closeness—not comprehension.
That Transforms Both People . . .
Caregivers realize that listening is always relational—an invitation to create closeness. Listening isn’t simply about paying attention to finished stories and eloquent statements. It’s a willingness to be near another as they are unfolding and the stories that once made sense are redrafted and remade. More than most, caregivers know that listening is an invitation to make something—together. Your everyday willingness to listen is a radical act because it oftentimes occurs when the world around no longer believes your loved one needs to be listened to. You—and your presence and attention—disagree. You know something others don’t—listening is transformative for both you and your loved one. Transformation through listening isn’t a public act to be seen and liked by others. Transformation unfolds when we open ourselves to being near another precisely when we have no idea what can be made and created—together.
Part of what makes us human is the capacity to magically transform ourselves away from where we are into a time and place that makes us feel . . . different . . . at home . . . authentic. Look up any definition of nostalgia and it will talk about a longing for the past—a kind of eternal homesickness that allows us to return to something we remember ourselves to be when life was different and simpler . . . a feeling that defies who and what we are in the midst of now.
But not all people experience nostalgia in the same way. If you are in the midst of suffering and loss and disorientation, nostalgia can’t simply be experienced as a yearning for the past because . . .
Caregivers don’t only have memories of what has happened—we have memories of what we expected to happen—but can’t—with the person we love. Our relationships depend on creating a shared future. Relationships come into existence and take on a life of their own only when we willingly conjure a shared future by communicating truths of what is yet to come . . .
“We will comfort each other through the night.”
“And awaken to one another in the morning.”
“We will travel and see the world together.”
“And be there for our children and loved ones when they need us.”
“And we will be there for our children’s children.”
“Yes, we promise to be there for one another through it all.”
Projecting our relationships—spousal, family, caregiver—into the future is a necessary ingredient of togetherness and intimacy until everything is completely and irrevocably disrupted.
When life is disrupted, we are left with the super-imposed realities of the future and unfolding present that are simultaneously true and false, present and absent, reassuring and haunting, harmonious and contradictory.
“We will comfort each other through the night.” “You said you would be with me but I now sleep alone.”
“And awaken to one another in the morning.” “Now I have to face the world without you but for you.”
“We will travel and see the world together.” “It’s too overwhelming to even think about the possibility of getting out of the house together even though we used to do everything together.”
“And we will be there for our children and loved ones when they need us.” “We have been there for others and yet, I sometimes wonder whether they will be there for us as we had talked about being there for them.”
“And we will be there for our children’s children.” “And now they may never know you—or us. I’m worried they will just know us as individuals, not as a couple.”
“Yes, we promise to be there with one another through it all.” “We are. I’m trying. We’re still together, but we aren’t together in the way we had talked about. Not in the way I ever wanted us to be. We’re separate but not alone. Together, but not in the way we used to be.”
Grieving over what can no longer happen is always a part of caregiver nostalgia. It’s a nostalgia with burdens we couldn’t have anticipated. Our burden is trying to reconcile our present with a future we had etched together in the thousands of daily conversations we needed to keep our relationship alive and maintain our faith in the enduring power of us. But now, we are left with a growing rupture between the future we created with our loved one and the present we are now living together—but alone. We are now left living with memories of what can’t be or won’t be, while also knowing that even though we built these memories with our loved one, they may no longer be able to help us rewrite them in ways that comfort and sustain us.
Most people’s memories are unidirectional—they flow only in the direction of present to past through the rivers of experiences and profound moments that already occurred. Caregivers, on the other hand, have a much more expansive view of memories. We don’t simply have memories of what happened. Our memories aren’t quarantined to the past as they flow through us and around us in ways that seemingly defy the gravitational laws of memory.
Caregivers have ongoing memories of what will not or cannot happen. These memories, contrary to what others might believe, are just as vivid and detailed and poignant as any memory of what has already occurred. We see them. We feel them. We hear them. They are as real as anything that has happened in the past. The difference is that they can’t be seen and recorded by photo albums or watched by an audience of others. These memories—these future memories—live only for us and the person we loved and still love and care for.
If you want to tell someone where you are—tell them you’re lost in between—reliving the future in ways that you have already experienced and yearning for a life that you had lived and rehearsed with the person you now care for.
Caregivers experience not only a homesickness for the past but a nostalgia for what can no longer be even though we know we’ve already lived our future once before in the everyday conversations that made our relationship possible.
Tell them you aren’t anywhere in particular, but you’re living and reliving a relationship that can’t be contained by the deceptive classifications of past, present, and future. Those classifications might work just fine for historians—but not for people who deeply care for another.
Put your head down. Keep going. Grind. Just get through it. This is what we tell ourselves when life becomes difficult. This is how we stay motivated when what we are facing is so frustrating and overwhelming that we must remind ourselves that something better is waiting on the other side. This is how we keep going when our bodies and minds tell us otherwise.
When it’s over. When life gets better. When things can return to normal. If I can keep going just long enough to overcome this, then . . .
Suffering is never a destination any of us would choose for ourselves. For far too many of us, however, chronic caregiving means that what we are experiencing now is what we will be living with—indeterminately. While we are all vulnerable to using the future as a way to help us get through the present, we also need to be aware that exclusively relying on the just get through it mentality has real-world consequences for our everyday well being . . .
Our everyday is now—not later. Perpetually delaying the value of our present means we risk meaninglessness and burnout. A grin and bear it attitude might allow us to temporarily free ourselves and others from making sense of our overwhelming challenges, but this approach also creates additional suffering because what we are experiencing in the moment is left without the attention it deserves. When this happens, we become vulnerable to other’s leftover understandings of our experiences.
I’m so sorry.
It’s just so depressing.
I don’t know how you do it.
For your sake, I can’t wait until this is all over.
Well-intentioned comments such as these remind us that we are where no one else wants to be. But after people walk and drive far away from our situations, we are still here—in it. Other people will not make meaning for us. They will not find value in our experiences. They don’t have to—yet. They don’t need to—yet. We have to—now. We must—now. Or we risk getting stuck in others’ stale misperceptions that deny the very parts of everyday realities that we must inject with value, especially when they appear unbearable.
Today can’t just be a means to tomorrow—it must have its own logic and purpose and value. Burnout is a side effect of not being able to talk about what we are experiencing without referring to next week, next year, or when things might return to normal. There has to be more to the value of today than the fact that it gets us one step closer to tomorrow.
Unfortunately, even well-wishing friends and family can’t help us in this regard because we make everyone around us feel momentarily better when we camouflage our everyday challenges in a preoccupation about the future. Yet, choosing not to make sense of our painful experiences now means we are choosing to minimize the value of what we are currently experiencing.
Committing ourselves to making deep meaning about the experiences we are going through now—not just the ones that make others feel comfortable hearing—means rejecting the fictitious logic of progress in an attempt to reclaim some semblance of control. When we begin naming our experiences as real, we bring our everyday challenges out of the shadows and into full light to be noticed and appreciated and valued.
Choosing to begin talking with those closest to us about the challenges and suffering associated with our experiences allows us to begin making sense of our everyday with those we love, instead of pushing them away with false justifications of when I get better, later, not now. This means beginning difficult conversations. Risking awkwardness. Knowing that later and soon are a type of irresponsibility that doesn’t affect only us but also impacts those that we love who need us to be active participants in the ongoing process of making sense.
Making meaning in the midst of suffering is not easy. Our culture reminds us daily that making sense of where we are—not just waiting until we get where we so desperately want to be—will make others uncomfortable. Creating value about our authentic experiences asks us to reject the getting through this mentality and give voice to the very realities that are going through us. Of course, here’s the challenge: well-intentioned outsiders don’t need to make sense of their everyday—we do. We can no longer wait for permission. We can no longer delay the urgency of our daily lives in hopes of waiting until we get through it. Meaning making is our responsibility and opportunity. It can no longer be postponed if we are serious about creating the values that will guide, comfort, and sustain us in our ongoing care experiences.
Who wants to visit someone in a hospital? Too depressing, right? Who feels comfortable walking into the home of a friend or neighbor who is chronically ill? Too awkward, right? Who knows what to say or how to act around a work colleague whose preterm child just died? Too personal, right?
This is how modern life works. When things are going well—people are around. And when life becomes strange, fractured, interrupted, inexplicable, messy, uncertain—others willingness to engage silently evaporates. This doesn’t necessarily happen because people are bad or mean or even insincere (even though it often feels this way). So, why do we often feel like the people we expect to comfort us too often disappear into the background when we most need them?
We have a cultural care problem that too often leaves us unprepared to comfort those in need. Throughout our lives, we are taught (and rewarded) for celebrating ongoing and never-ending change.
In the world of commerce, we are constantly being told we need to buy this or get that so we can become something different or better.
In the workplace, we are expected to constantly improve and our performance evaluations are based on proving how much we’ve done, accomplished, and changed over the past year.
Even in our most intimate of relationships, we ask those nearest to us to constantly change . . .
“I love you but I need you to value your health more by losing weight.”
“I love you but you need to be more passionate if this is going to work out.”
“I know you work really hard, but it sure would be great if you made a little bit more money.”
Our culture tells us that acceptance is always synonymous with settling and resignation. So, is it any surprise that our preoccupation with constantly changing ourselves and others has become memorialized into common sense . . .
Engaging with others should always come with conditions.
Change is always possible and within our control.
Tomorrow will always be better than today.
Acceptance and satisfaction means settling and settling is a sign of failure.
Our collective faith in perpetual change gives us a place to focus our attention, dreams, concerns, worries, needs, and hopes. But an exclusive preoccupation with change also makes it difficult to know how to act or what to say or how to be when we are in the company of someone whose life situation calls forth acceptance—not change.
When we are asked to be with the person in front of us, not the past version of that person, not the future possibilities of that person, not the person you need him to be, or even the person you want her to be—but the person next to you, yes, that real person—is it any wonder too many of us become overwhelmed and rendered incapable of connecting?
What do I say? What can I say? What would I talk about? What can we possibly have in common? I don’t want to be rude, but what can this person do for me? Where will this conversation lead? Why would I connect with someone and risk getting close when there’s no way to predict what tomorrow will bring? I just want more, what would I have in common with someone who doesn’t want that?
Nowadays, genuine, deep care requires a corresponding type of rejection. In accepting the person nearest to us who is in need, we also have to reject the habit of looking through people to find a glimpse of our future, as if the people we are with are simply a means to something better. Accepting another person without conditions can be blinding because it asks us to be with another without the protection of talking about what isn’t happening, what should be happening, and what we want so desperately to happen.
When people ask you why you are a caregiver, or question how you have been able to care for a loved one for so long, or why you are such a good friend to others in their times of need, what they are really asking is how can you possibly engage another without the filter of change?
While most people are obsessed with persuading others to become and do something other than what they are now, they miss what we have trained ourselves to appreciate. On the other side of change is a frame of acceptance—a radical way of being with another that invites dimensions of deep connection. When reaching toward others, what would happen if we gave ourselves permission to connect without the expectation that the person in front of us need be anything other than who they are—now? This simple but profound orientation might just be the invitation to connection that reminds us—and them—that not everyone leaves when need rises up.
You feel alone. Exhausted. Calm one moment and overwhelmed the next. Certain that you could never have prepared for what you are now experiencing. You want to reach out and find comfort—but how and to whom? Before long, the desire to find someone who understands is replaced by the belief that no one understands and no one needs to understand what you are experiencing.
There has to be something between yelling out “I need help” and responding to earnest queries from others with a poised, “I’m fine.”
We unquestionably pull over for emergency vehicles as they race us by, sirens blaring, lights flashing to rescue and help someone in need. Yet, at the same time, our ritualized appreciation of acute emergencies has also desensitized us to our everyday uncertainties and concerns that too often go unnoticed, discarded not by intention but because chronic challenges of care don’t fit in a culture that recognizes emergencies but little else, because…
Physical emergencies call for immediate action, everyday needs are messy and ambiguous. Our culture plans for emergencies. We drill. We talk about how we might respond. We strategize about whom we might call and where we will meet. Emergencies call us all into action—out of our everyday routine and into response mode that is singularly focused. Chronic care and relational needs, on the other hand, just don’t work that way.
Ongoing challenges are messy because they are often invisible and unknown to others. They don’t call attention to themselves unless we call attention to them ourselves. Who wants to be their own PR person for our privatized feelings and angst?
“I’m really struggling but I don’t want to make a bigger deal of it than it is. I mean, it’s not an emergency.”
“I am so in over my head that I wouldn’t even know where to begin. I’m so embarrassed that it’s gotten to this point that I wouldn’t even know how to reach out.”
“I don’t even get what’s going on with me—how could I begin to think about explaining it to someone else?”
How many of our everyday struggles and doubts and uncertainties get lost right here—in this moment, when we censor ourselves because we mistakenly believe that since what we are experiencing isn’t necessarily an emergency, it shouldn’t be shared, can’t be shared, won’t be understood, and won’t be cared about?
Unlike an emergency, when it comes to our everyday needs, there is no universal audience that will immediately get what’s going on. We have to create our own audiences when it comes to sharing our everyday needs and that requires choices and effort and too often . . . silence. We don’t have a siren. And if we did, people would probably tell us to turn it off because our concerns don’t have clear beginning and ending points—they linger, taking their own time, disrupting our lives in ways that defy speed and closure and containment.
Emergencies ask us to get out of the way and find help. The sharing of everyday needs calls us close and always changes everyone involved. An emergency, by definition, necessitates immediate action and response. Most of us respect the nature of emergencies by getting out of the way so professionals can do their thing. They know what they are doing—we don’t. Everyday, chronic needs don’t ask us to be spectators—they implicate everyone involved and require us to be in the way.
When we seek to share our own concerns, those closest to us become implicated. There are no spectators because we are really talking about ourselves and those closest to us. Our vulnerabilities. Our fears. Our biases. Our expectations. Our histories. Our futures. Our reputations. Our relationships.
“What do you mean you’re no longer happy? What does that mean for us?”
“I know you are overwhelmed caring for Mom, but I don’t live near her, so what do you want me to do about it?”
“My illness isn’t just mine, it’s going to affect us and our entire family.”
“I’m worried about Dad. Do you think we should talk to him? We’ve avoided the situation for this long, but I don’t think we can any longer.”
Flashing lights and screaming sirens don’t accompany our chronic needs. No one pulls over for them. No, these ongoing challenges are quietly integrated into our relationships. Hinted at. Teased out in subtleties and reserved for those we most trust.
As we become ever more skilled at talking about the spectacle of public emergencies, our ongoing struggles are being pushed out to the margins of view ever farther outward
“Not worthy of a ‘like’ on Facebook.” Ever farther outward. “Not appropriate for dinner conversations.” Ever farther outward. “Not fun enough to talk about when out with friends.” Ever farther outward. “Too revealing to open up about at work.” Ever farther outward. “Leaders are supposed to show strength, not vulnerability.” Ever farther outward. “Don’t burden them, they’re your kids.” Ever farther outward. “Not now, it isn’t the right time to bring it up.” Ever farther outward. “I don’t want my family to worry.” Ever farther outward.
What would happen if amidst the sounding screams of sirens, we also paused long enough to listen to the whispers of the everyday needs and concerns of those nearest to us who don’t call out to be saved, but to connect? Don’t just pull over, listen closer.
Our most important life decisions aren’t about what we do. They are about who we focus our attention, efforts, time, and care upon — our audiences.
The following is about as close to a social law that exists — we eventually conform to and merge with those we are near, day in and day out. Yes, it’s so difficult to notice the impact of our audiences upon us because the values and beliefs and ways of talking and being with those nearest to us can’t help but become our world and define our perspective.
For caregivers, our audiences — your mother, father, child, spouse, friend — don’t need to persuade us when they seep into us. They don’t need to cajole us when they surround us. Their worries become ours. Our worries become their worries. Then, without notice, our everyday and ongoing interactions with them shape the way we believe the world works and, perhaps most importantly, the ways in which we believe the world should work.
That’s what makes us so unique — and misunderstood. Others seek audiences that promote advancement and opportunity.Moving up the corporate ladder or impressing our friends at a party are legitimate reasons for attachment to particular people and audiences. Doors open. Opportunities are made. Contacts are established. These are all valid and important reasons for sociality.
But the caregiving experience is so often misunderstood because most others can’t fathom why we would spend our time with those who promise us nothing other than who they are . . .
No, really. Why would you do that?
Can’t you find someone else to be there?
What do you get out of it?
Doesn’t it depress you to spend your time with someone who is . . .
These aren’t mean questions — they are simply the questions asked by those who can’t understand that there is value in our care relationships with those stripped of title and power and prestige by their illnesses and vulnerabilities. It is a radical statement to engage in a relationship based not on what we might gain, but on what it says about the person we care for and our values. A relationship beyond advantage. Beyond strategy. Beyond expediency. Not a relationship based on what it might lead to or what it might represent. A relationship based on what exists – now.
Our care associations say something more eloquent about what we believe than we could ever put into words. Our care means we are willing to engage in relationships that don’t necessarily guarantee us comfort. Or assuredness of appreciation. Or deep understanding. Or peace of mind. Or reciprocity. And yet, we still care.
These days, I no longer listen much to what people tell me about who they know or whom they associate with that they believe will impress me. I look for character where few others pay much attention. I don’t look at people as much as I look to whom they keep company with. Show me someone who cares for another without notice or acknowledgment or prestige, and I know this is someone I want to keep company with because we know something most others haven’t yet learned. The most important relationships in life don’t necessarily lead to anything — they call us to be something that we didn’t know was possible.
It’s not just what we stand for — it’s who we stand near that matters most.
The permanence of loss takes a lifetime to reconcile. It’s far too overwhelming to appreciate what permanence really means at any one point in time. Maybe that’s why permanence reintroduces itself to us again and again throughout our lives.
Permanence, I know you well by now, so many of us do, but you still surprise me, especially . . .
On Holidays. Mother’s Day. Father’s Day. Birthdays. Anniversaries. Hello again, permanence—at least I expected you on these days of celebration. I planned for you. You planned for me. These wonderful holidays are defined by being in the company of those we love. Permanence, you are so overwhelming because you introduce yourself through absence—in the darkened corners of what we feel but don’t know how to make known to others. No Hallmark cards are written for the people we love who aren’t physically present because we’re supposed to send our cards somewhere. We’re supposed to address our letters to someone. We’re supposed to make dinner and honor someone—who is here. Permanence, even though I knew you were coming to visit on these very holidays, you still find ways to surprise me.
That’s what makes you so mysterious and haunting. You’d think I’d be used to your presence on these special days. But, on these days, when I have to think of you more than I want and in ways I can’t escape—you motivate me to retreat into myself even when I’m in the company of others. Conversing with myself while I’m talking to others, you are the echo no one else hears—the echo that, on these days in particular, becomes louder than the actual voices around me.
When We See Beyond the Frame. Others only see the images of people that are neatly represented within the framed borders of pictures. Permanence, you require us to notice who isn’t in the picture—beyond the framed border of living and dying. You call us to notice what is and what isn’t. What used to be and what is no longer. Others only recognize what’s right before them but you always remind us of the white spaces of loss and grief that others don’t seem to notice.
You make us see who isn’t where we thought they would be—the excluded spaces in-between then and now, yesterday and today, lost and found, remembered and forgotten.
Silence is the response you invite even though each day we think about trying to bring our multiple realities into existence for others to verify. But it’s too easy to become overwhelmed by the burden of introducing our multiple realities to others. Silence reminds us that you—permanence—are here and everywhere, a constant voice that only we hear. Those not yet touched by your presence see the world around them in the fluidity of one dimension. Those of us who know you well quickly realize that we are marked by a deep awareness of realities that feel paradoxical—present and absent, included and excluded, contented and yearning, here and there, inside the frame and beyond the frame.
When We Get Caught in Traps of Time. Grammarians clearly weren’t thinking of you when they created discrete categories of past, present, and future. Most people categorize their lives into what happened, what is happening, and what might happen, a seductive orientation to time that makes complete sense when there is no reason to defy the laws of grammar. But permanence, you trip us up all the time because you know that these same categories delude us into believing that what has happened is over and distinct from what is happening and what we believe might happen in the future.
Others mark their time by years with someone. We mark our time by years without someone. Permanence, we feel overwhelmed in your presence because we know that time doesn’t flow evenly and orderly, but rushes through us and past us and onto us, washing away the boundaries between past, present and future.
Approaching permanence is like looking at the sun—you can’t stare at it straight on. Yet, it is always reflected in what is said and what is not said and who we see and who we don’t. In the shadows of our everyday lives, we are constantly forced to reconcile the endless shades of permanence that change us throughout the course of a day in ways that disappear as quickly as they appear.
Permanence, if anything, you remind us—whether we want the reminder or not—that you refract our attention and understanding in ways that makes us question what is real and what isn’t.
We hear it. Others believe they are giving us a compliment when they remind us of how “special” we are because we are caregivers. Beyond the comments of appreciation and disbelief—“How do you do it?”—others’ reactions to our care can’t help but make us feel different. Are we really that special? Are we really that unusual? Is it strange that we are caring for someone we love in their time of need?
What is it about caregiving in modern life that makes this role so unusual, so mysterious, so needed and yet, so marginalized?
It’s Difficult to Care for People Who Have Beliefs — Wouldn’t it sound odd to ask parents of a newborn, “How do you do it?” “Why do you do it?” Unlike parents of newborns, caregivers typically care for people who have beliefs. People who have said ‘yes’ and ‘no’ throughout their lives—making the care role seemingly more challenging because we find ourselves caring not simply for a body of an innocent and promising young child, but for a body full of ideologies and agendas and choices and regrets and mistakes and confusions. Caring for an adult human being means caring for another in spite of relationship conflicts, in light of political disagreements, and even when knowing that the person we care for is not perfect.
Others can’t help but marvel at our willingness to care despite everything the person in front of us represents or symbolizes.
Care isn’t simply about the endless tasks of caring for a loved one’s body—it’s about a willingness to overcome the differences that keep us separate and apart and distrustful when our bodies are healthy.
Unlike others who are mystified by what we do, our care is viewed as a radical act of heresy because it means we are willing to care alongside our fears, hesitations, and disagreements.
There’s More to Relationships than ROI (Return On Investment) — Throughout our lives, most relationships are based on an unstated arrangement—we engage others when we gain something from being with or near them. We receive something from someone and we provide something for another, making it possible to justify our time and energy and attention and physical presence. This type of reciprocal exchange makes so much sense when relationships are perceived as equal—“I’m giving as much as I’m getting and I’m getting as much as I’m giving.”
When it comes to caregiver relationships, everything is turned upside down. Caregivers rupture the unquestioned assumption that we should only engage in relationships in which we gain as much as we give.
“Let me get this straight—you care, day after day, and you get what in return?”
Your care, your willingness to be with another without the assurance that you will gain advancement, fame, money, solace, comfort, or fulfillment—can’t help but make others uncomfortable because it defies the expectations we bring to almost every other type of relationship. Your ongoing care means you must know or understand something about human connection that makes others question everything they believed to be true about relationships that matter.
You Can Be With Someone Without Trying to Change Them — Throughout adulthood, culture celebrates an ongoing intolerance for acceptance. Never settle. Never accept. Never stop. Never stop wanting. Never stop trying. Never stop desiring. Never stop persuading. Never stop wanting something more than what is before us.
Others preoccupy themselves with changing the person in front of them—“More of this,” “Less of that,” “You need to do this,” “You can’t do that.” This is called care and love in most other relationships, but this way of engaging another is built on the belief that care means focusing on who we want (and need) the people we care about to become.
Caring for people who are ill and not getting better requires something of us that others find hard to imagine: a greater tolerance for acceptance. Even though we have a higher tolerance for acceptance when caring for our loved ones—it doesn’t mean we settle. No, we simply see differently. We are open to noticing the person in front of us without the distorted lens of what could be. We realize that when we drop our obsession with seeing what isn’t—rather than what is—something emerges that is missed by most others. We try to care for another without obsessing about the future. We seek to care without focusing only on what is missing.
When we care through a frame of acceptance—rather than change—we allow our attention to be directed at the realities before us, rather than the endless possibilities of what might be, and what could be, and what should be, and what may never be.
The next time someone compliments you on how special and different you are for caregiving, it’s great to appreciate their comment. But remember, it’s not just the fact that we care for another that makes us different, it’s that we are engaging in a way of being and valuing another that defies what others know to be true—or even possible.
When most people think of sickness, they think of a person who is sick or has an illness, as if the sickness is something that one individual possesses. Caregivers can’t help but understand sickness differently than most others. While most people think sickness is only about what happens to one person’s body, our repeated exposure to the illness experience changes us as we are constantly reminded that . . .
We aren’t always in control. Only when we spend time with and near those who are sick, do we know that the body’s voice—aches, pains, discomfort, suffering—can’t be ignored. Sickness reminds us that it works on its own schedule—not ours. Our calendars are full of appointments and meetings and to-do lists that we set up when we could plan out our futures based on availability. But our loved one’s illness doesn’t care what we had planned for tomorrow. It can’t be postponed until we can mesh our calendars.
Whether brief or permanent, near-illness experiences require us to look in the mirror and see ourselves differently than we might have ever looked at our ourselves before. Spending time near sickness means never being able to forget that there are forces at play beyond our will and desires. Care, up close, prevents us from believing that we can—and should—do whatever we want, whenever we want.
We are constantly humbled because we know that sickness eventually finds us all—regardless of our size, strength, income, or background. Humility is not a space most others inhabit on a daily basis but for those of us who spend time near illness, we can’t help but notice what most others overlook. Near illness, life appears fragile. We see so clearly what can go wrong and find it hard to let go of this truth. Appointments can be missed. Dreams can be interrupted. Schedules turned upside down. Habits broken.
When near the sights and sounds of our loved one’s discomfort, we are affected too—often finding ourselves in a state of perpetual unease.
We don’t feel like reading. We don’t feel like watching television. We aren’t comfortable with the lights on. We aren’t satisfied when the lights are off. We don’t feel like talking. We can’t sleep at night. We are tired during the day. In a world that’s always on, being near illness can make us feel off, refocusing our attention to the functioning of the limits of the body in ways that inspire respect, fear, and reverence.
We need others. When we are near healthy bodies, we want an audience to display ourselves, our talents, to remind others—and ourselves—that we are important, worthwhile, funny, and desirable.
When we are near illness, something drastic and disruptive occurs. We don’t want others to remind us that we are worthy, we need others to remind us that we are not alone because the suffering of those we care for has the incredible capacity to exaggerate our isolation.
We are the witnesses that hear and comfort our loved ones when they can’t present themselves in ways that make others feel more comfortable. As witnesses to physical authenticity—the kind of authenticity no one talks about—we need to know we are not alone. We comfort our loved ones with our presence by assuring them that our care exists without conditions. We reassure them that they can close their eyes and know they will wake up with us near. But we need reassurance too because our witnessing means that we are often left unprotected from our own doubts and fears.
Sickness and care are so interwoven that to untangle one from the other would render both meaningless. Sickness without care is unbearable. Care without vulnerability has no purpose. Too often, we think of people as sick or well, caregiver or cared for—exaggerating the differences between our ill loved ones and us. We care for people who are being remade by their illness and in the process, we are changed. Illness can’t be quarantined to bodies alone, it becomes a part of our relationship as care reminds us of what most others too quickly forget: we can’t help but see ourselves in those we care for just as our loved ones can’t help see themselves in us.For those of us who have had near-illness experiences, we know that illness can’t ever be understood by biology alone—it’s also a relational experience that constantly reminds us of truths we can never forget—even if we want to.
Confidence is a preoccupation for most of us. We worry about building, losing, demonstrating, and developing confidence because we all want it—the ability to walk into any scenario armed with an unwavering belief in ourselves and our ability to influence people and solve problems. This is the kind of confidence we typically look for in leaders, but there is a different kind of confidence no one talks about but you demonstrate all the time—caregiver confidence.
Unfortunately, the way we typically think of confidence requires us to believe that we are better, smarter, more knowledgeable, and more competent than those around us. This kind of confidence only works if we believe we are fundamentally different from those around us. It presumes that the confident person already has the answers and always knows what’s going on—as if confidence was something we possessed. In the process, we can become so focused on proving our confidence that we lose touch with the very people around us because of an overwhelming concern with how we look and sound and act in front of others.
Caregiver confidence isn’t about what happens in front of a general audience—it’s all about what happens when we are near those we love. Caregiver confidence means we don’t assume anything—our confidence comes from questions—not answers. We listen and observe to find out what is going on. What does the person I care for want? And know? And believe? And value? We don’t worry about “building our confidence” because we know it’s not just about us.
Instead, we constantly reconcile ourselves to the situation at hand—not the situation we necessarily want. Not the situation we believe should happen. Or the situation we wish would happen. Our confidence isn’t about asserting ourselves to make others conform to us, it’s about integrating ourselves into others’ lives as they are.
Too often, people assume confidence is built around an unwavering belief in what should be done. This would be sufficient if we were working with mere objects. But we aren’t talking about spreadsheets and analytics. Caregiver confidence doesn’t allow us the luxury of making grand proclamations promising to solve our loved ones’ problems and frustrations and suffering. No, everything we say and do is grounded in a radical humility earned from a willingness to listen to the fragility of our loved one’s bodies. And only by listening do we know that despite what we want to happen, we can’t just promise to wipe away what we don’t want to see or know.
Listening and connection are the architecture of our confidence.
The next time someone tells me that I appear to be “lacking” in confidence—I’m going to remind them that not all confidence is created equal. But I have to be honest. It’s nearly impossible to explain caregiver confidence to outsiders because our confidence is demonstrated when most people aren’t paying attention. Our confidence means being present for loved ones long after others’ loud promises and bold proclamations end. You and me—we don’t lose or gain confidence—we’re simply there when others tell themselves they can’t handle it. It’s a willingness to draw our voices and bodies and attention near when vulnerability calls us. Let’s just make sure we never apologize for a confidence that’s not designed to be showy. For us, caregiver confidence isn’t about something we own, it’s all about a willingness to reach beyond ourselves to build something together with those we love.
Read Full Article
Read for later
Articles marked as Favorite are saved for later viewing.
Scroll to Top
Separate tags by commas
To access this feature, please upgrade your account.