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.
Feeling lost used to be a rite of passage. Before GPS, anyone driving in a car, at one point or another, knew what it was like to be lost. That feeling of knowing where you want to be but not being able to find your way and get to where you want to go. Here, in this very moment—whether in a car or in life—something happens to us. Too often, we are so concerned about not getting lost that we rarely pause long enough to consider how feeling lost changes how we think when we are at our most vulnerable.
Time acts differently. There is an urgency to being lost that is absent, or at least hidden, when we don’t have a clear destination in mind. Perhaps it’s because in the course of everyday life, we don’t always have clear goals. When we want to get somewhere in particular, however, urgency emerges. Sometimes, it’s because we feel the need to get somewhere at a specific time. But there’s also a distorted rhythm to being lost. Time no longer cooperates. It appears to go by faster and slower—taking us out of the normal rhythms that allow us to ignore time. When we are lost, we become highly sensitized to the passing of time, transporting us into a hyperawareness of how the need to get somewhere affects our body.
When we are lost, time is no longer something that we look at on our watches—it’s something that begins acting on us as our body tenses up, our pulse quickens, and our breathing become increasingly distressed.
In the midst of growing uncertainty, we look to time for guidance, but because we don’t exactly know where we are and how long it might take us to get where we feel like we need to be, time becomes meaningless as it doesn’t allow us to predict anything.
Everything demands our attention. When we feel like we know where we are, we know what we should pay attention to and what we don’t need to think about. Mindlessly driving to work is comforting because the journey is characterized by what we don’t have to notice. Guided by habits of routine means not having to pay attention to directions, the right turn, that curve, or that long stretch of highway. When guided by habit, our bodies and minds collaborate with our environment so we can become engrossed in our own thoughts—a favorite song, a rehearsing of what might happen later that day, or replaying a conversation from the previous night. We are on autopilot. When lost, however, everything demands our attention. Everything has possible meaning. Every street name might be the path you are looking for. Every landmark might be a clue to finding where you want to be.
When everything around us has possible significance, we can’t help but feel overwhelmed. We don’t feel like we are moving forward as much as our surroundings are streaming at us. Because we can’t anticipate anything, signs come toward us—we don’t pass by them. Only when a street sign is upon us can we realize that was the very street we wanted to take. Clues appear and disappear in such short notice that we can’t take a moment’s break. Our attention must remain fixated on what we are doing because our senses need to be heightened to account for every possibility. As our hands grip the steering wheel and our eyes hastily scan, disorientation means not being able to free our minds from preoccupying ourselves with everything that is around us
Self-doubt becomes magnified. When we have to pay attention to everything, while we are in the midst of our journey, we can’t help but question ourselves. “Was I supposed to have taken a left at that last street?” “Maybe the directions are wrong?” “Is this the path I’m really supposed to be taking?” “Should I turn around?” “Should I ask someone else for help?” “Where did everyone else go?”
When we don’t know where we are or where we are going, the voice in our head becomes our own navigational device that doesn’t as much give us directions as it makes us question every decision. And the longer we feel like we are lost, the more we begin to question ourselves as each decision becomes more and more important. As every choice becomes magnified, we can’t help but believe there is only one right way to get there. And if there is only one right way to get there, then yes, every action and inaction is consequential.
At this point, lostness isn’t only about where we are going as much as it’s a charge against ourselves. “I’m terrible at directions.” “I can’t believe I can’t figure this out.” “I should have spent more time preparing for this journey.” “I have no idea what I’m doing.” As the voices of self-doubt become an unending monologue, we feel less and less connected to what is around us. Lostness is no longer a geographical description as much as a personal and scathing indictment. “I am lost.”
The voice we use to talk to ourselves isn’t supportive and encouraging. It’s nasty and unrelenting. It’s usually full of contempt and almost never self-forgiving. In the silence of our own thoughts, we treat ourselves in ways we would never treat others. Our self-voice never, ever apologizes.
Perspective shrinks when we are lost. When threatened by not knowing where we are or where we are in relation to where we want to be, we become single minded. Feeling lost isn’t simply about getting where we want or need to be, it’s also a statement about our incapacities. “If I can’t even find my way, how am I going to do what I need to?” “Why are the simplest things so hard for me?” “Why does this always happen to me?” “I must really be losing it.” In the process, the world around us shrinks. At the very moment when our surroundings are drowning our attention in constant stimuli, we lose our ability to see beyond our immediate circumstances.
We can no longer see ourselves and our journey for what it is. It represents so much more.
It—our journey, our need to find our way—becomes a preoccupation. Nothing else matters. We push down faster on the pedal. We take more risks. We don’t fully stop at the stop sign. We turn away from others. And our desire to find something real and concrete becomes our sole preoccupation at the very moment when our peripheral vision shrinks allowing us only to see what is immediately before us, distorting everything.
And then we arrive at our destination. We arrive but we are different. We are where we thought we needed to be but we are depleted and exhausted. The first voice we hear startles us because it’s the first voice we’ve heard in a while that isn’t ours. The first voice we’ve heard that isn’t yelling. We are there, but we are different. And then we spend the rest of the time camouflaging the fact that it—the journey—has taken too much from us for us to share without looking silly and embarrassed.
Being lost isn’t a description of a place; it’s an experience that shapes how we think about ourselves and our capacity to get where we want to be.
Being lost isn’t something we’re allowed to talk about. Being lost changes us but we can’t let anyone know this because it’s a state of mind that is seemingly temporary. We admire people who always know where they are going. With GPS, we’re led to believe that being lost is out of style. Not something anyone has to worry about anymore. Unfortunately, that’s not true.
People are still getting lost, every day, it’s just we no longer want to acknowledge that being lost is part of being human and it often has nothing to do with a destination, but a change in how we think about ourselves in the midst of struggle. Isn’t it time to create spaces to talk not only about destinations, but also what it means to be lost? We don’t need others nearly as much when we’re at our destination, but we need each other most when we are lost and under the influence of self-doubt.
We’ve all witnessed the “awkward” silence moment in the presence of another. And we know this situation is even more awkward when someone publicly diagnoses what’s happening by saying, “Wow, that was kind of awkward.” Most people can endure this so-called social awkwardness for only a matter of mere seconds. But what makes interpersonal silence so awkward for most people but not for caregivers who spend a majority of their interactions with loved ones in silence?
Caregivers are open to ways of connecting that don’t require talking. Sharing space and developing closeness with another person can be accomplished in so many ways. While talk and disclosure can bring people closer together, so can shared presence.
Caregivers know what most others don’t—talk is just as effective at keeping people “distant” as it is in drawing people closer.
If others were able to witness how caregivers create closeness, they would walk away in disbelief. “I don’t get it, nothing happened? Nothing was said.” I heard this refrain too many times as a hospice volunteer when others would question the merit of spending time in the company of someone who may not be able to talk or to express themselves verbally. What outsiders believed must have been remarkably awkward—“I don’t get how you can spend an hour with someone you don’t know”—I knew was anything but awkward. Shared presence was comforting. The silence was sacred. And I felt remarkably connected to another without sharing one single word. Sharing the same space as another person without wanting or needing words means you are more willing to be open to a human connection that doesn’t necessitate a detailed examination of someone’s history or background or resume. Silence, with an accompanying willingness and desire to be present, says everything that needs to be said.
Someone who is preoccupied with “awkward” silences fears silence for what it might reveal—about themselves and the person they are near. Silence focuses our attention in ways that no words could ever inspire because it reveals a truth that caregivers already know from their experiences. It is talking—not silence—that camouflages what we already have in common with one another. It is talking—not silence—that dupes us into believing that we need to use words to scan for possible similarities.
Caregivers have a remarkably high tolerance for interpersonal silence. Most people’s instinct is to panic—exit immediately before something happens that might reveal the truths of connection that can be noticed and experienced with anyone. Caregivers know similarity always exists between themselves and another. It is just waiting to be noticed and appreciated.
Caregivers know that the person in front of them—no matter who they are and how “healthy” they are—is always afraid, hurting, and uncertain too. No amount of talking takes that human truth away from us, it only temporarily distracts others from noticing—creating an unnatural and unnecessary distance between people. Connection is possible precisely when one lets go of the pressure to feel like the gaps of silence have to be filled with words when in the presence of another.
When you hear someone talk about “awkward” silences, what they really mean is “awkward” presence. Unfortunately, too many people have been trained out of knowing how to be with another person. They might be quite proficient at talking to others—but quite limited when it comes to creating connection. Most people are surprised when they “find” commonality because they mistakenly believe connection is a scarce resource. Caregivers, on the other hand, expect to find connection, but realize that connection is so rare not because it doesn’t already exist, but because of an unwillingness to allow it to be noticed, appreciated, and fostered using the language of silence.
Each year, I have the rare privilege of having a front row seat to one of the few respected rituals in contemporary life: college graduation. It’s beyond unfortunate, however, that we don’t ritualize life’s other markers beyond graduation.
In honor of life’s often overlooked but life-altering transitions, here’s what a ceremony for caregivers might look like . . .
What Are We Honoring?
Our ceremony will honor our willingness to respond to life roles that we were drafted into—unexpectedly. That’s right, the roles that called us to care that didn’t occur within our expected time frames and didn’t conform to our plans. These care roles weren’t the roles that we spent our lives sculpting our resumes to attain. Explaining care doesn’t go over well at parties—trust me, I’ve tried—because people don’t know how to respond. Care isn’t a position. It’s not a company. There are no promotions. It’s not a bucket list item. These life roles came at us, whether we were ready or not.
Honoring care authentically means none of us would individually walk across a stage for a handshake and picture. For our ceremony, that would be deceptive and impossible—we’d never fit everyone in the camera frame. Invisible life transitions like caregiving are always social—our responsibilities and connections highlight how we are rooted in and grounded with others. Our ceremony will call attention to the fact that our lives aren’t defined by other people’s beliefs about ambition. No, our ambition isn’t neatly packaged. It’s private and public, familial and stigmatizing, life-altering and life-affirming. This ceremony will honor our willingness to walk not simply toward our goals, but also our willingness to open doors into people’s lives when few others would.
Who Would Speak?
Commencement speakers are the celebrities of college graduations. Carefully chosen and vetted, a person speaks for the graduating class. An inspiring figure. A public celebrity we’ve seen on television. A politician or sports figure that comes from afar to tell us about the art of living, armed with sweeping answers and clichés to rid of us of our uncertainty and tell us there is nothing really to fear because the world beyond is for the taking.
For our ceremony, we’d do things much differently. Importing a national figure to talk about our everyday, lived experiences wouldn’t make sense to us. When someone tells us they have the “answers”, we tune out. We don’t have the energy or patience for such speeches. We’re not even looking for answers and we’re not keen on listening to others who charismatically clean up and organize our lives in fifteen minutes or less before heading out of town. We’re used to messy—clean clichés wouldn’t work.
Instead, perhaps all of us in attendance would write out a line or two about our experiences and challenges, or draw a picture or create a tune, integrating our creations into a babble of voices and representations. It would be noisy no doubt, but whatever is created would be connected to others’ creations. We would be both creators and audience—our words and creations and images and sounds and presence would be our rousing anthem. Not a Katy Perry kind of anthem though. Unlike college graduates, we’re not waiting to be inspired. We know too well the expiration date of inspiration. Our experiences tell us that inspiration without love and care and a commitment to others rings hollow. I’m talking about an anthem of our own making that allows us to pause time long enough to mark our care transitions—however confusing—while surrounded by others.
What Would Be Said?
This is so very complicated because we know graduation speeches always include a brief shout out to the past and an unending preoccupation with what is coming, where people are going, and who they hope to become.
Our ceremony couldn’t help but be drastically different. We don’t think like most college graduates—we don’t see ourselves as unbounded, floating in the wind of life. Our roles connect us to those we love and care for. Sometimes we feel our connections constrain us but we also know they are the life fulfilling necessities we wouldn’t want to live without. We aren’t free agents. We are social agents. That’s what will be said. And shared. And felt. And celebrated.
Most people dream of where they will visit and what sights they might see and experience after graduation. Grief. Loss. Anger. Loneliness. Silence. These experiences are typically not invited to graduation speeches. But these are the places we have visited and these are the places that have visited us. They have compelled us to expose parts of ourselves we didn’t want others to notice. They’ve made us vulnerable, inspiring us to endless self-questioning and doubt. They aren’t glamorous destinations but they are necessary parts of our journey that shouldn’t be omitted because leaving them out would mean erasing vital parts of our experiences. Let others edit their words of wisdom to only include inauthentic half-truths. Not for our ceremony though.
What About Moving Our Tassel?
Today, during our celebration, we don’t need to mark our care transition with the ritual placement of our tassels because we are already marked. We don’t have to tell people we are important by reminding them of the awesomeness of our yet-to-be-lived future. We don’t have to strategically self-present like college graduates and tell the world what we think they want to hear. Today, we are as we are. We are what it looks like in the midst of disorientation and resilience. We are college students’ future selves. The only difference is that for the first time, we can see and appreciate who is around us. We are no longer consumed with looking through people to find a glimpse of the future. We can appreciate those around us—that’s right, you—for who we are now. Yes, this is where we need to be, here—complicated. Tangled. Connected. Grounded. Not out there beyond—but right here. Yes, right here. Not valuable for who we are going to be. Valuable for who we are and what we are doing now.
Excuse me, but I think I’m going to stay here a bit longer. Unlike a college graduation, I don’t have a party to attend. Nothing to run to. Not anymore. Do you notice what’s going on? People are still arriving at our ceremony. The seats around us are constantly being filled because there are no onlookers—no spectators or visitors—just participants engaged in this thing called living. Stay with me here a bit longer, would you? I want to close my eyes and feel the presence of acknowledgment and shared struggle. Grab a seat, there’s one right next to me.
If you’re in a close relationship, you’ve inevitably asked (or been asked) this question out of concern and care.
Beyond the information contained in any possible response, something more is happening. Inspired by how trauma informed care helps young people respond to some of life’s greatest challenges, it’s important to explore what else we are communicating about our relationships when we ask (or are asked) the question—“what’s wrong?”
You are defying my expectations and making me uneasy because if there is anything I can count on in this world—it’s you being the ‘you’ I already know.
If you are changing—then that means my whole world is changing. That means I’m going to have to change, and that’s scary.
I’m worried that you’re experiencing something that I feel powerless to help.
I can no longer predict what you are going to say or do. That means I’m going to have to question our whole relationship.
We ask (or are asked) endless variations of the what’s wrong question sprinkled throughout our everyday conversations with people we already care about or feel close enough to ask. Herein lies the paradox of this question. We only ask—what’s wrong—of the people we know well and yet, this very question changes what can happen between two people because the question . . .
Demands loyalty to the past. The question itself, though asked out of concern, requires someone we care about to justify why they are seemingly different than they used to be. Without knowing it, the question asks for loyalty, not understanding. It asks the person we care about to remain loyal to who it is we remember and, seemingly, already know. This simple question suggests that their true self is the self we already know and are already familiar with.
Blinds us to the person they are becoming. When we ask (or are asked) what’s wrong, we are preoccupied with our needs, not theirs. We are saying that we are only willing to pay attention to what we once knew—not the radical or subtle changes that are available to be seen and understood—if we so choose. In the process, we can’t help but deny how the person we care about is seeking to make sense of their experiences. This question puts too much emphasis on parts of the person we already know—not on the ingenious combination of how the person we know is seeking to respond to the challenges affecting them. Being asked what is wrong overplays constancy because it falsely assumes that we care more about consistency than who they are becoming.
As a childhood trauma expert, Dr. Perry emphasizes the value of asking “what happened.” In times of crisis and stress, we all need something from others even if we don’t know how to communicate that need. We need people around us who will help us re-orient to our experiences. Not friends or family who demand fealty to the past, but loved ones, friends and confidants who can also appreciate change and difference amidst a shared history. When someone asks what is happening—not what’s wrong—the question becomes an invitation to dive deeper, to explore change, and to allow us to share how our unfolding experiences are remaking us.
Relational closeness creates possibilities and perils. A shared history can be overwhelmingly reassuring because it allows us to understand another person without having to say a word. At the same time, a shared history can be overwhelmingly alienating when it is used to expect loyalty and adherence to maintaining the appearance of understanding. How we use our knowledge of another can make the difference between reassurance and alienation, connection and aloneness.
The question is ours to choose. When a loved one or friend is in the midst of challenge and chronic stressors, we can invite them to become even closer if our tolerance for appreciating change and difference and inconsistency and messy re-orientation is made clear. And likewise, we will inevitably gravitate toward those who draw us near by seeking to understand who we are becoming.
“What is happening to you?” isn’t a question camouflaged as an indictment. It isn’t an expectation shrouded in a sign of care. It is an invitation to create enhanced relational closeness within the safest space possible—a canvas of friendship and connection and care that allows for rough drafts to be voiced without consequences, criticism, and judgment. Change need not be a threat to relationships and connections. If we are genuinely interested in what is happening now to the people we deeply care about, we must remember that the questions we ask may bring us closer in ways we never thought possible.
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.