When we are physically healthy, strangers are to be kept at a distance. That’s why we lock our doors and are wary of people we don’t know—“Never, ever open the door to a stranger!” When illness enters our lives and the lives of those we love, however, something strange happens. The people we know […]read more...
Throughout our lives, we are sustained by beliefs that are left unquestioned. They simply are. These taken-for-granted beliefs can’t help but become mistaken for enduring truths that we use to guide our priorities and relationships and choices . . .
Push through, work harder, and do more, because it will lead to something better.
Follow opportunities wherever they may be and whomever they may take you away from.
Make yourself valuable by specializing.
Let passion guide you.
Possibilities are endless.
There is always tomorrow.
Be available to others, all the time.
I can’t now—I have a meeting.
Caring for someone changes us. It isn’t just something we give. It takes something from us too—our taken for granted beliefs. They are stolen from us but no one seems to notice that they are gone. We can’t help but become disoriented as the beliefs that had once guided us now appear jagged and dangerous, requiring us to question and even walk away from what we used to hold to be true . . .
Push through, work harder, and do more, because it will lead to something better—I’m done pushing though today if that means just crossing something off my list. Caring is harder than anything I’ve ever done. Caring more won’t make my loved one better even though I wish it would.
Always follow leads and opportunities—why do leads and opportunities always have to be far away? Why can’t this relationship be my opportunity? And lead to what? I’m satisfied with what’s before me.
Specialize—how is that even possible? My specialty has a name and a face. And he doesn’t only need part of me, he needs all of me.
Let passion guide me—why is passion always about work? Isn’t caring for someone I love a type of passion, even if it doesn’t impress others?
Possibilities are endless—no they’re not. I recognize my limitations and I know the person in front of me isn’t a possibility. She’s real.
There is always tomorrow—my experiences tell me otherwise. Now is what matters most. Now is where I want to be. Today is the only thing I know to be true.
Be available to others, all the time —I can’t anymore. I don’t want to be ‘on’ for everyone anymore because that means I can’t be present for the people who need me the most. The people I need most.
I can’t now, I have a meeting—I’m going to be here for you now. This—you—are important. Nothing else is more important than you.
We change our beliefs when what we hold to be true no longer fits what we are experiencing. The problem is that our care transformation isn’t noticeable. It isn’t like a before and after reality television show where you can easily see the transformation by comparing what we look like now to what we used to look like. There are no big reveal moments when it comes to belief transformations. No, internal makeovers are searing and silent. They reveal themselves slowly, and tentatively, not on stage, but in everyday conversations that are often met with disbelief rather than adoration.
“Are you okay? Seriously, you’re not acting like yourself.”
Care, deep care for another, can’t help but transform us. Care inevitably infiltrates every part of us from our eyesight to our mindset. It sets itself upon us in ways that begins to remake what we once took for granted and believed to be true. We didn’t seek to transform our lives—transformation came to us because we dared to care.
When we are physically healthy, strangers are to be kept at a distance. That’s why we lock our doors and are wary of people we don’t know—“Never, ever open the door to a stranger!” When illness enters our lives and the lives of those we love, however, something strange happens.
The people we know most (or the people we thought we knew) find it difficult to enter our lives . . .
“It’s too hard for me to see him this way. He used to be so lucid. And now, he just sleeps.”
“What would I say? What can I say?”
“I love her so much. I can’t handle it. I can’t see her that way.”
As those we know find it increasingly difficult to visit when the prospect of death is more than an abstraction, strangers willingly walk through our doors. Based on my own experiences as a hospice volunteer and my academic research on the hospice experience, here are 3 reasons why hospice volunteers, people whom you have never met before, can provide care that many others simply can’t:
(1) Acceptance—Hospice volunteers willingly walk into our lives when some friends, acquaintances, and neighbors walk out of it. Why? Hospice volunteers didn’t know our loved ones before they were ill. Their role always begins with the onset of illness. They walk into our homes and our lives and see our loved ones for who they are—not who they used to be. Sometimes, those who know our loved ones best can’t get beyond comparing and contrasting who they were with who they are now. In the process, grief and shattered expectations can prevent them from seeing what is before them. Hospice volunteers openly accept the present. This pure acceptance of what is—rather than a concern over what was, what isn’t, what could have been, what should have been—means they orient themselves to our loved ones in drastically different ways than most others. They bring a radical kind of attention to our lives—attention preoccupied by what is rather than what isn’t.
(2) Guilt and Agenda Free Care—Hospice volunteers don’t bring guilt with them. They don’t know our past. They don’t have broken promises and don’t bring with them past grievances that can sometimes get in the way of the time they spend with you. Sometimes, our closest family and friends disinvite themselves from the illness experience because they believe they’ve let us down. They said they would call over the weekend—but didn’t. Guilt then becomes a barrier between them and us. “It’s too late to call now. I should have called. What would I say now.” Hospice volunteers don’t carry with them the baggage of interpersonal and familial obligation. Their role protects them from having to explain, rationalize or justify. They have no agendas. No desire to persuade you to do or be or say anything other than what you choose. Sometimes, for family and friends, guilt and unresolved issues get in the way of care visits—turning moments of peace into storms of internal doubt, regret, and confusion.
(3) The Freedom to Be— It’s hard for us to separate words from care. If you care, you speak. If someone is in your presence, you must be a good host, and entertain them with words and conversation. For others, the premium on words seems to grow in importance as friends and family take the time, energy, and money to visit. When everyone is preoccupied with avoiding saying the wrong thing or being a good host—authenticity retreats. Awkwardness enters and dominates. Silence becomes a sign of a relationship gone wrong rather than a sign of comfort. Unlike family and friends, hospice volunteers know that what is said isn’t nearly as important as physical presence. Silence is not a sign of a failed connection, but a vital part of the vocabulary of care and comfort and assurance. You and your loved one don’t owe hospice volunteers your words. The permission to remain quiet in another’s company, knowing you are not alone, comforted by the peace of another, unburdened by the need to say anything at all, is a gift few others can provide.
The hospice affect is hard to explain to outsiders. Sometimes, only in the company of strangers, can we feel free to be open and honest. Sometimes, freedom means not feeling the need to protect or withhold or edit ourselves for fear of how we will be (mis)interpreted. Sometimes, opening the door to trained hospice volunteers willing and able to enter our homes when it feels like everyone else has exited long ago, reminds us that we are still worthy of attention and connection. Something strangely beautiful can happen when we greet others who see us in the midst of living while dying. Thank you to those who knock on our doors when life is still being lived.
Better yesterday. Better today. And ________________________ tomorrow. The gravitational force of expectations means that you most likely had no problem filling in the blank consistent with an ever expanding “even better tomorrow.” Better is what we all want. Better is what we expect because we’re told and retold to fill in the “blanks” of our lives with this universally celebrated refrain.
Progress is something we all want but our belief in progress can often trip us up because we mistake our bodies with things. We can predict things because things move in ways consistent with laws of physics that propel and constrain objects in predictable ways. When it comes to our expectations for loved ones, progress can betray . . .
A young mother weeps over her child’s return to a rehabilitation center after weeks of positive recovery from a disease that robbed him of his speech and movement.
A loving daughter mourns over her father’s inability to read the morning paper after having made progress from a stroke months ago.
Weeks after a complicated and last-ditch surgery, the pain is returning in ways that reminds you of the past.
Deep disappointment and disorientation are ocassional side effects of progress because we can’t help ourselves from wanting and expecting today to be better than yesterday and yesterday to be confined to the past tense. When our bodies don’t listen to our pleas, we can’t help but find ourselves lost and confused, not being able discern north from south, and tomorrow from today, dropping us to our knees in desperation.
Nothing makes sense.
Everything used to make sense.
If I can’t expect yesterday to lead to a better today, what can I believe tomorrow will bring?
We are often sustained by the soaring flag of progress—always planted ahead of us—waving proudly on the mountaintop in the distance. We race toward it. It is lit at night; a beacon of hope to keep us going in the right direction even when we feel like we can no longer move forward. When progress is no longer a guide, what are we left to do and where are we to look for comfort? How do we measure what we are doing when a step forward may also be a step back?
When our expectations of progress are betrayed, it’s hard for us not to believe that we’ve failed. Lost. Given in. Given up.
At these very moments, we must consciously push the idea of progress aside—at least momentarily—to make sure our expectations don’t betray our bodies. Tightening our expectations in these moments of disorientation can help protect us from thoughts that take us too far beyond where we are. Reeling in our expectations can protect us from ourselves when we trip on the idea that we aren’t where we believed we would be according to the unspoken laws of progress.
Don’t worry, we can’t keep our beliefs about progress out of the way for too long. The temptation to lean on progress as a way to mark time and success inevitably returns. But sometimes, in our darkest moments of disorientation, the allure of progress can ambush our thoughts of the future—making it difficult to be in the present. We are here. This is now. We are here. This is now. Tomorrow will sure enough find us, but sometimes we can cheat today by preoccupying ourselves with tomorrow before it arrives. When I’m consumed by thoughts of progress that don’t (or won’t) correspond with what is occurring, I try to remind myself to follow a simple but ever-challenging rule: My thoughts of tomorrow should never arrive before the rise of the morning sun.
It was the way she smiled back at me that I froze in my mind. Hollowed cheeks and bald head but for a small fray of hair reminding us of what used to be, her teeth shone in ways I hadn’t noticed before. The scar running across her head framed her deep brown eyes and widening, child-like grin spread across her ashen face as if it was boldly protesting what was happening inside of her.
Maybe you remember watching your loved one staring out his bedroom window, minutes before you were scheduled to leave for the airport after having spent a week at home visiting? Or maybe you remember trying to capture a last moment in time—listening in tune with her labored breathing, imagining what she was thinking about as you sat nearby, unsure of when you might be able to return?
In the midst of the uncertainty of what will happen between departure and our next arrival—we can’t help but cling to certain memories. But our memories of those we love aren’t like the selfies most others take and post across social media. Our freeze frames of those we love are special because they are . . .
(1) Deeply Ordinary—Selfies require the art and performance of posing. Nobody poses in our freeze frames. We don’t want to capture life—for others—we want to remember life as it was lived. We want to remember what happens in the middle of the ordinariness of life, not on top of the tallest mountain or walking on stage to receive an award. Unlike the staged, selfie moments that live only long enough to be noticed and celebrated by those who know of us, our mental freeze frames invite deep awareness of the authentic, uncelebrated moments that bring us closer to our loved ones.
(2) Sense Based—Our memories can’t be contained in the visual dimension alone. The sound of a loved one’s voice makes a terrible selfie but a lasting freeze frame. The aroma of the food he baked in the kitchen. The way she sipped her coffee. The sound of his rising voice when he became passionate about an issue. The rounding of the lines around her eyes when she laughed. The touch of his gnarled hands. The strength of her embrace. The smell of perfume. The sound of his favorite shoes as he walked with purpose across the hardwood floor. The parts of our loved ones that we hold sacred in our minds can’t be understood only by what we see. Our freeze frames can’t ever be divorced from our senses because they are multi-dimensional, evoking textured awareness that connects us to the presentness of our past.
(3) Private Property—Memories we consciously freeze frame are not meant for others. Selfies are public property whereas our memories are special because they are ours alone. We are needed for them to make sense. We are the freeze framer and the sole interpreter. Everything must be translated—that’s exactly the point. Our memories can never stand alone. We must always be with them. Selfies require us to think of others first—our desired audience—and then contort our lives and our bodies to create the image we think others want to see. Our mental freeze frames begin and end with us—they are all about what we want to feature and how we want to see the world. Our memory is our truth. Period.
(4) Time Defiant—Selfies inevitably fall prey to the whimsy of time. They are
time-stamped and quickly reduced to the digital trash folder of the past—constantly replaced with newer and bolder and fresher images for our audiences to see and admire. On the other hand, our memories are timeless, not timely—they can be accessed whenever we want and need them. The sound of our loved one’s laugh can still resonate even in silence. It finds us and surrounds us when we need it most. When the room is silent, we are transported in ways that allow us to forget where we are and to live in a space that doesn’t discriminate between past and present.
If you’re like me—there is so much you know and understand about someone you’ve cared for that you won’t be able to share with others. Sometimes, I’m deeply saddened that certain memories are mine alone—incapable of being shared with others in ways that only I understand to be true. But I am also comforted by the reminder that I am the sole writer and director and producer and audience of my memories. And so, they can’t be tainted by others. They can’t be compromised by others. I don’t need to explain or justify or crop or add a filter to improve them. They are uniquely mine—and because of that—they are perfect just the way they are. The one permanent in a world of change.
In almost all aspects of daily life, competition is valued as a goal unto itself. Doing well, succeeding, and making a difference are almost always evaluated through the formula of competition—my win is your loss, your victory is at my expense, I am the best (because I beat you). Viewing life as a competition is the norm . . . except when it comes to the life-altering context of caregiving.
Too many people overlook the value of the caregiver role because care goes against every sacred value of competition. The obsession with competition has crowded out the private and public values of care so much so that it’s time we begin rethinking the qualities we believe worthy of admiration because . . .
• Competition closes you off to others. Competition reduces dynamic, complex people to mere competitors. Competition shrinks the world around you when dealing with others, reducing our attention to others’ perceived threats. Everything else becomes unimportant but for the fact that you will be competing against the other for a seemingly scarce resource—a prize, a promotion, a race. Care, on the other hand, opens you up to others allowing us to see how the person we care for is connected to our past and present. Care allows us to see others not as threats, but as allies. Care invites us to view others as whole people, with a multitude of life experiences and perspectives that don’t ask to be changed or converted—just appreciated.
• Competition prevents meaningful collaboration. How can you collaborate with someone when you are so busy trying to exploit their weaknesses? Competition doesn’t want you to know your competitor’s name or story or individuality. In the midst of competition, you are either with me or against me—transforming the person nearest to you into an object, a thing, a source of difference—a threat that is only understood as an other. Care, on the other hand, opens us up to our shared humanity. Caregivers work from the belief that we are all alike—our fragility is the gravitational pull that blurs differences in ideology and belief into the background amidst the overwhelming presence of genuine care. Care invites us into knowing that our frailty is both reason and justification unto itself, a bridge to the other, rather than a reason to retreat.
• Competition reduces relationships to winners or losers—leaving nothing else in between. Competition is about the end results, period. Everything is measured and evaluated through the very empty metric of win or loss, tainting all other aspects of the relationship. Care, on the other hand, is all about process. Care has everything to do with what happens between beginnings and endings. For caregivers, the ephemeral present is supreme, as what exists in the moment is often lost in translation when explained or justified in the language of “results.”
• Competition is showy. “Look what I did.” “See how I’m better than the rest.” Standing above others, the competitor thrives in the glory of the limelight, eventually allowing the private self to be suffocated by public adoration. Care, on the other hand, is anonymous. It thrives in the middle of the night, when no on seemingly notices. It continues on without being heralded. Caregivers fit in, they don’t stand out. There will be no new discoveries in care that are covered on the nightly news—just their overwhelming comfort that lingers long beyond external applause.
• Competition puts a price on everything. All competitive activities and relationships are reduced to a rational, costs-benefit analysis. “I should engage in this activity because the rewards will outweigh the costs.” Care, on the other hand, defies economic models and rationality. While game theorist hypothesize and measure from afar in the sanitized echo chambers of rationality, we are busy being with another as life unfolds. Being near those who need care may provide us no economic benefit, no fame, and no glory. And yet we do it anyway, hour after hour and day after day. Care defies outsiders’ hypothesis or predictions because it’s impossible to assess what happens when care meets love.
Care isn’t just a private statement. In today’s world, it’s a political statement as well. It’s a reminder that change isn’t always voted on. Leadership isn’t always something we cheer for—it happens when most others aren’t looking. It’s time we begin rewriting the qualities we believe necessary for public admiration. “Winning” is fine, but it’s not nearly enough. Show me a person who has cared for another, and I can show you a person who won’t easily confuse applause with quality, accolades with trust, and riches with value. Isn’t it time care became the new prerequisite for leadership?
We don’t think twice about insurance anymore—car insurance and health insurance are musts in our lives. But we also need a type of insurance most of us don’t think much about until we need it—the safety, solace, and strength we can draw upon from our social networks when we are in the midst of our greatest need. Social insurance doesn’t protect us from life, but it can provide us the assurance of being heard and understood and appreciated when we most need an audience.
Our smart phones organize people we know via our contacts’ list, but this is efficiency at its worst and least effective. For most of us, our contacts are organized according to alphabetical order, not need. People are organized in ways that help us easily access their names, not in ways that remind us who we can go to, lean on, and trust when we feel like we are falling apart. Instead of deferring to the alphabet, it’s more helpful to begin rethinking (and reordering) the people in our contact lists by the type of audience role they might fulfill when we are most in need:
- Ventees—These people are ideal to share your deepest frustrations with. Frustrations need to be vented and this audience allows you to reveal your anger or disappointment or sadness in its purest form—without remorse. This audience won’t hold you hostage to appropriateness nor do they believe that what you say is what you think. Rather, ventees can provide you freedom to indulge in the moment without apology or shame because this audience knows that feelings are an expression of the moment, not a permanent state of mind.
- Celebrators—Yes, we all need someone to celebrate with. Despite what we often think, not all people are ideal to share great news with. Who in your care crew can genuinely be joyful for your private accomplishments and small achievements? Who will allow you to revel in what most others take for granted—making it through the day, getting three hours of uninterrupted sleep, sipping a fresh cup of coffee. Celebrators are so vital to social well-being because they don’t take us out of our moments of joy by reminding us of what is next, or what has to be done, or what may loom in the future. Unlike most others, they allow us to simply be and enjoy the smallest of life’s pleasures even when life is challenging.
- Off-Stagers–We all need someone we can share presence with in our darkest moments. Off-stagers allow us this privilege because, when we interact with them, we can stop pretending to be something other than what we are feeling. Off-stagers allow us to be with them in the midst of chaos whereas most others are only comfortable with us long before or long after the dust of chaos has been settled. With this audience, we can be un-make-upped, unkempt, out of sorts, and incoherent because we can rest assured knowing they appreciate the importance of our off-stage self as it is, not as the rest of the world needs us to be.
- Laughers–We need people we can laugh with. This audience can be challenging to find or access because most others believe laugher in the midst of challenge is taboo. Laughers, however, are so important to our well being because they can get us out of ourselves long enough to help us see our experiences through new eyes. People whom can find humor in the undesired—suffering, pain, challenge—aren’t scared about inviting us to react authentically and in ways beyond the clichéd requirements of sadness and tears. Although sadness and tears can be present, these people also make room for laughter as a response to life’s challenges.
- Doers—Many people may fit in this category of providing tangible help in time of need, but there may be people in your social network whom are better doers than others. Quality doers do, they don’t over-promise what they are going to do. They show up when they say they will. They drive you and your loved one to the hospital and back. They bring food to you on a regular basis. Quality doers don’t need much from you. They don’t need long letters of gratitude or promises of immediate reciprocation that would only serve to make us feel guilty for their acts of goodness. They do because they can, and they understand that doing isn’t about them, it’s about a form of care they can provide.
- Sense makers—These are people whom you can turn to help you make sense. They don’t fix or make your challenges go away. No, sense makers provide you an audience while you process your experiences. They are gray—not black and white—thinkers who have a higher tolerance for ambiguity than most others. They have a special capacity to allow you to share your thoughts without judgment, allowing you the benefit of hearing yourself talk through ideas out loud so you can process your thoughts beyond the running monologue in your own head. For some, sense making occurs through prayer. For others, sense making is accomplished through lists highlighting pros and cons. For others, sense is made through philosophy, shared presence, or shared touch. Whatever the approach, sense makers can provide the greatest gift of all—insurance against the sound of our own voices on endless repeat.
Everyone needs a care crew whom we can draw upon when we need social insurance against the inevitable interruptions of life. Some of us may still be looking to be heard or understood or embraced. Some of us might find that one or two individuals might fulfill all of these audience roles. Others might discover that the people we thought we might be able to call upon disappoint us while others whom we didn’t expect to help, rise to the occasion to provide support in ways we could never have imagined. As our needs change, so too do our needs for different types of support audiences. Life’s challenges are inefficient and messy and overwhelming. It’s time we begin rewriting our contact lists—not based on alphabetical order—but by their ability to support and interact with us when we are most in need.
Just the two of you but nothing is said between you. There should be so much to say. So much you wanted to say. So much you thought about saying on the drive over to visit. But here you are, sitting only feet from your loved one and there is nothing but silence. You can’t help but panic as your muscles tense and your worst thoughts begin to take over: “Is everything okay?” “Is she mad at me?” “Did I do something wrong?” “It was a mistake to visit.”
For most of us, silence is one of the great social fears we experience when in the company of another person we care for. Most of us are taught that if we don’t have anything to say, then we shouldn’t say anything at all. It’s no surprise then that as adults, all forms of silence are almost always perceived as awkward. So, it’s no wonder that when we are physically sitting next to someone we know and care for and experience moments of silence, we think something is terribly wrong because we mistakenly believe that:
If we’re not talking, we’re not relating.
If we’re not talking, they must be upset.
If I don’t have anything to say, I shouldn’t have come to visit.
If he/she doesn’t have anything to say, I shouldn’t have come to visit.
Talk is the only way to become close to someone.
Each of us is highly educated in knowing how to make sense of others’ words. Unfortunately, no one taught us how to interpret others’ silence or how to be with another without having to say a word. As caregivers, silence is a language we need to understand because it is so often an essential part of our relationship with those who are tired, ill, or unable to speak.
The next time you experience interpersonal silence keep in mind the following communication principles:
Silence can bring you closer to another. When you share a view of the sunset with someone, the awe of the beauty before you transcends anything you could say. Simply sharing that moment together, without the need for words, inspires a shared, deep appreciation of the moment. So why not allow the shared moments of silence bring you and your loved one closer together as you share in the miracle of co-presence. What makes interpersonal silence seem so awkward is our expectations that every second has to be filled with words. Being physically present with your loved one says more than you could every put into words. Awkwardness quickly flows into appreciation when we trust ourselves in knowing that what we are sharing together in physical presence is more important than anything we could say
Silence can be an incredible interpersonal gift. We’ve all been in the company of special friends or loved ones for whom we felt the luxury of not having to fill every moment with words. Knowing we don’t have to talk makes these relationships special because we “get” one another even in the absence of words. Likewise, your level of comfort with silence when in the company of an ill loved one can give them the greatest gift of all—permission to be themselves in your company. They don’t have to put on a show. They don’t have to “get up” for meeting you. They can be authentically themselves. Knowing they can sleep peacefully in your company or listen to you without having to give you verbal feedback means you will be different than most others whose presence requires them to be something other than they are feeling or experiencing. Your comfort with silence is an incredible gift of peace.
Silence can heighten appreciation of the moment. When we let go of the need to fill every moment with words, we become more perceptive of the person you are sharing space with. We become more aware of the setting we are in. And we become more mindful of our very presence. The moment is allowed to speak to us when silence exists. When we become comfortable just sitting with another without speaking or being spoken to, awkwardness falls away and deep appreciation fills our senses. The smell of our loved one’s perfume is noticed. The deep rhythmic breathing of our loved one’s breath becomes a lullaby. The shape of our loved one’s mouth becomes more pronounced in our memories. And the touch of their cold skin against our warm fingers blends into a perfect union of temperature.
When our words are allowed to rest, our other senses come alive, filling in the gap with understanding that is as valuable as anything we could say. When our expectations for words is replaced with the belief that silence can bring us closer together, we will see, hear, and experience moments of eloquent connection that we may not have been able to achieve when too preoccupied with filling silence with words.
There is nothing more magical than beginnings. Remember the anticipation and energy of the beginning of a new relationship? The rush of energy associated with the first day at a new job? The pure appreciation that accompanies the newness of spring’s first bloom? Beginnings are so alluring because they provide an opportunity to start over—an occasion to reinvent ourselves and to see the world anew. The most miraculous aspect of beginnings is that they are of our own making, even when they seem like they are divined by our calendars.
For caregivers, beginnings are seemingly harder to create from the everydayness of our existence because caring for another is associated with waiting. Special rooms are named in our honor: waiting rooms. We wait for a visit. We wait for clarity. We wait for hope. We wait for information. We wait for tests and more tests. We wait for results and for the interpretation of those results.
Our care seemingly exists without clear beginnings or endings, trapping us in a state of permanence, disallowing us from renewing ourselves and freeing us from the burdens of anticipating what is yet to come. Amidst the perpetual urgencies of waiting, few caregivers provide themselves the opportunity to rebel from the quicksand of waiting by reveling in the energy of creating beginnings where others only see continuity.
To help facilitate the creation of beginnings, here are some tips that remind us that even in the midst of waiting, we can make meaning:
(1) Events don’t define beginnings, we do. A quick look at your calendar of caregiver responsibilities might remind us that there is nothing so dramatic or noteworthy that seemingly necessitates a beginning. Wrong. We must define and create beginnings. All beginnings are created and manufactured. Don’t wait for your calendar to tell you what is important or worthy of necessitating appreciation. While Mondays might signal the beginning of a new work week for some, for us, it might be Saturday morning, or Friday night. To reclaim our beginnings, rewriting our calendars is an essential step in encouraging renewal.
(2) Ritualize the beginning. All beginnings are marked by rituals. The first pitch of the new baseball season. The introduction of names on the first day of class. Shopping for clothes in advance of the first day on the job. When we ritualize our own beginnings, we allow ourselves to inject time as different from the countless moments that will seek to crowd it out into just another moment. How will you ritualize your beginnings? Will the first hour of your mornings be an opportunity for a new beginning—a time for reflection and awareness and appreciation? Will you dress differently? Will you sit somewhere special? Will you sip your morning coffee differently than you do the remainder of the day? Will you change your attitude leading into your moment of newness? Marking difference out of the continuity of the everyday means regaining a sense of control in how we will experience life rather than habitually deferring to what others tell us we should notice.
(3) Celebrate the prospect of the beginning. The looming anticipation of a beginning is as intoxicating as the event or experience itself. Mark the event or experience sometime in the future so the anticipation can help you wade through the trivialities of the every day, but don’t place it too far into the future that its eventual reality might be placed into doubt. Scheduling a visit to a park? Planning on visiting with old friends? Beginning a journal of your everyday reflections? Marking your beginnings also means reworking your schedule so that the hours and days leading to newness allows you to prepare yourself and your senses for the experience itself.
(4) Socialize the event. Beginnings are enhanced when they are socialized. Talk to your friends about your upcoming event or experience. Tell others how you are preparing for it. Ask them to participate. Post it on Facebook. Put it in your planner. Invite others. The more you talk about it, the more real it becomes. The more real your beginning becomes, the more likely you are to create a reality that both you and others respect as worthy of your attention and presence.
(5) Allow the energy associated with experiencing a beginning move you long after the event itself. The energy of embracing our engineered beginnings will linger long after the experience itself. Don’t inhibit this energy. We deserve this lingering afterglow of lightness to our being because it reminds us that our self-created joy can be our greatest response to life’s limitations. Don’t be rational about it. Don’t squash excitement. Allowing our created beginnings to energize and sustain us through the challenges of the days ahead can momentarily free us so we can see ourselves and our caregiving role through different eyes.
Caregivers, beginnings don’t just happen, they are created. If we allow ourselves only to be branded by others’ beginnings, we can’t help but feel trapped in an endless series of waiting and deferring and obligation. Creating the possibility of newness even in the midst of life’s most constraining moments will serve to remind us that though we must respond to life’s events, we are also capable and willing of imprinting our hours and days with our own distinct signatures.
The favorite pastime in contemporary culture isn’t basketball, football, hockey, soccer, or baseball. The favorite pastime is looking forward. Everyone looks ahead to something or someone. A vacation. A graduation. A holiday. A three-day weekend. An end to 12-hour workdays. The end of winter. The beginning of spring. The premiere of your favorite television show. The start of a new job.
The only people who don’t look ahead the same way others do are people like you and me who care or have cared for someone who isn’t necessarily getting better. It’s not that caregivers don’t want to look ahead as much as we just don’t think we can. We believe looking ahead is reserved for people who take the present for granted. People who have no reason to question that tomorrow will be the same as today.
So it’s no surprise that when most others look forward, they gaze months and even years into the future whereas you and me, our hopes dare not travel beyond the moment. Too often, we don’t allow ourselves to look ahead because we mistakenly believe that doing so will only disorient us. But we are wrong. We must create something to look forward to today in order to reduce burnout—an occupational hazard of caring for another human being.
Experiencing burnout is not a matter of if, simply a matter of when. But we can reduce the intensity of caregiver burnout if we allow ourselves the luxury of looking forward. I’m not talking about looking forward in the way others look forward to vacations or travels around the world. No, our looking forward has to be different even though it serves a similar purpose—helping us through the rough patches of the every day when our bodies are exhausted, our hearts are heavy, and our will is seemingly depleted. To reduce the intensity of caregiver burnout, here are some tips every caregiver should keep in mind:
- Looking forward should extend no more than 24 hours into the future. As caregivers, we know so much about the fragility of life that to look forward to anything beyond 24 hours would be too much for us to believe. But looking forward can mean an hour later, or a quiet lunch or a phone call with a friend later in the evening. Looking forward doesn’t need to catapult you years into the future, rather looking forward can only help to remind us that life—today—can be valued and appreciated and savored. More than most, we need to mark our time, not simply by the passing of a calendar day but by the enjoyment of a tangible goal or reward.
- Look forward to the small stuff. This may be the most difficult rule to follow. We’ve been trained our entire lives to believe that we should only look forward to big things: weddings, birthdays, holidays, family reunions, etc. Cross those thoughts out of your mind. As a caregiver, you have to constantly remind yourself that the small stuff is worthy of looking forward to, like watching the sunset, or taking a long shower, or going for a walk, or getting a hair cut. Looking forward to big events inspires others to ignore their every day, looking forward to the small stuff helps us find value and appreciation in our every day.
- Mark your small stuff in your calendar. Now. Yes, I mean physically type it in your phone or mark it in your daily calendar. Be as specific as you can. Ambiguity is your enemy. Mark your small stuff in your calendar with the very same details you would when marking anything else in your calendar: the amount of time necessary to fulfill your small-stuff experience, where, with whom, the time of day it will begin. If you don’t mark everyday meaning in your daily calendar, it won’t exist. And if it’s not in your calendar, you won’t make the time to make you and important part of your day’s goals.
- Make your needs sacred. Stop treating your own needs as if they are optional yet treating others’ needs as necessary. Our needs are as real as others even though it sometimes feels like it’s much easier to say yes to others’ needs and no to our own. As caregivers, the small-stuff that we look forward to must be treated as sacred or we will deny ourselves the opportunity to experience these often overlooked but essential moments of joy that allow us to sustain our caregiving identity.
For most others in contemporary life, meaning markers are built into their lives—holidays, weekends, time-off. For caregivers, however, there are no markers that will tell us when and how to mark our time. If we plan to embody an identity that sustains care through our loved one’s most challenging of times, we must have a plan to sustain ourselves as well. If we deny ourselves the opportunity to indulge in the sacred moments of the every day, then we will be less able to give of ourselves to the very person we care for.
Much of what we do as caregivers can be summed up in two words: giving attention.
Most people dismiss the value of attention because this act of care seemingly requires no special skill set. So, the thinking goes, if anybody can give attention to a loved one in need, then it clearly isn’t very unique. But here’s the catch—so few people are capable of giving the kind of attention loved ones need because not all attention is created equal.
(Body) Part Attention— Although this type of attention is essential among medical experts and practitioners, it is perhaps the most divided attention caregivers can give to loved ones. This attention focuses attention on people’s bodies and body parts—turning care into an endless search for accurate, clear, and more (always more) information about origins, symptoms, and causes of diseases or illnesses. People who give bodily attention become intimately familiar with body parts or symptoms but, in the process, they can’t help but (unintentionally) neglect the very person they love who has the very symptoms or disease they have devoted most of their time, energy, and focus to researching. In other words, you can only type generic body parts and names of diseases and symptoms into the Google search box. Typing in your loved one’s name, however, won’t allow insight into who they are and what they might need or want from you.
Convenient Attention—This form of attention is provided when it is convenient for the person giving attention, not necessarily the patient/loved one. Convenient attention is usually given by friends and neighbors and is typically expressed with statements such as, “I’m going to come by your house and read to you three times a week…” or “I’m going to call you everyday to see how you are doing.” Because this attention is based on convenience, it can sometimes create false expectations that are rarely met. Sadly, this type of attention revolves around others’ work or social mood calendars, not the “need calendar” of the person longing for attention. People who provide convenient attention find it hard to overcome the pressing needs of their everyday experiences, often uttering phrases to themselves such as, “I’m not really up for visiting today,” or “I can always go next week. I’m just not feeling it right now.”
Conditional Attention—This type of attention is characterized by a carrots and stick approach to caregiving. In other words, well-intentioned, tough love means attention is given with strings attached—making sure your loved one “gets better.” When attention is focused exclusively on a loved one’s potential to get better, attention is all about improvement and almost never about the value of the person staring back at you. Conditional attention dangles the promise of appreciation just beyond the outstretched arms of a loved one because it is used to prompt, inspire, and cajole a loved one to do more, to expect more, and become better/healthier. Although conditional attention may have noble aspirations, this kind of attention too often reminds a loved one that their worth is always about tomorrow—when they have “overcome” a disease or medical condition—not about who they are today.
Caregiver’s Attention—As caregivers, we know that all attention is not created equal. Even though attention seemingly requires no particular set of skills, caregivers have the capacity to provide a different type of attention than most others: attention without qualifiers. Attention without distraction is overwhelming for most others. Attention without escaping into smart phones and incoming texts is unthinkable for most others. Attention without being able to predict what may happen in the spontaneity of the moment is too scary for most others. Attention without holding loved ones’ captive to whom they used to be or who they might not be able to be tomorrow is implausible for most others. Attention—without qualifiers—is a caregiver’s most rare capacity. It’s also the reason caregivers are so different than most others.
There are moments and then there are moments that don’t pass by us as much as they pass through us. People talk openly and eloquently about where they were when President Kennedy died, or when the Challenger space shuttle exploded, or on 9/11. But transformative moments can also be private.
Our individual, caregiving moments are often silenced because they represent the point in time when everything we once knew is turned upside down. The permanence of a loved one’s diagnosis. The suddenness of a loved one’s heart attack. The realization that a loved can no longer remember our name. The deep grief of mourning for someone we know whose life will never be the same.
The moment we realize that life as we once lived it will never be the same is a universal experience but one endured in silence and isolation because . . .
- For us, the world stops spinning. Our caregiving moment of realization freezes us in our tracks as others around us seem to move even faster and louder and more frenzied than ever before. We want others to notice what we are witnessing. We want them to notice something different about us so they will ask. So they will at least know. But they don’t. Others keep going and moving and responding as if life was the same though our world no longer makes sense. Even though we may look and sound the same to others, we are not.
- The safety net of habit and routine is replaced by a heightened sense of the fragile, unpredictability of life. We can’t help ourselves from becoming anxious about things we didn’t even think about before. We now see fragility—everywhere—whereas others still walk blissfully through life, hand in hand with the habits of everyday routine. We are no longer guided by routine—everything seems new and strange. It’s as if we find ourselves walking on a tightrope without a net. And the scariest part is that we realize we’ve been living all this time without a net, but we had never noticed until now. But now that we notice, we can’t unlearn what we know and return to life as we once lived it.
- We are caught in-between multiple worlds, finding it difficult to find our place anywhere in particular. On the one hand, we are expected to be conversant in the joys of those who believe life is permanent—“What’s on television tonight” and “Let’s make plans for next year.” On the other hand, we must also be able to understand and attune ourselves to loved ones whose conditions remind us that life is always fleeting—“Say goodbye now because we don’t know if this will be our last goodbye.” Most of us aren’t allowed the privilege of choosing one world over the other. Instead, we must incorporate ourselves into both worlds, finding ourselves constantly restless and uneasy knowing that we don’t feel like we completely belong to either world.
- We can easily get stuck in a perpetual present that makes us fearful of the future and unsure of what we remember about our past. Caregiving prevents us from confidently predicting life beyond today because care is not a future tense—it’s an unfolding act that requires our body and mind to be focused on what most others take for granted. We can’t be what we once were even though we so dearly want to return to life as it was once lived. As our days unfold, the life we lived before our caregiving moment disappears before our eyes. We know we had a past, but it recedes into a deep fog that now seems inaccessible as if our lives before were lived by someone else. That person, that innocent person we used to be, seems like a stranger to us now.
Even though all caregivers experience a moment when we realize that life as we once lived it will never be the same, we rarely talk about our sudden and life-disorienting epiphany. Not all epiphanies make others feel comfortable. But our caregiving epiphanies need to be voiced. They need to be heard. We don’t hesitate to ask others of where they were during transformational, public moments like 9/11. It’s time we begin asking about (and listening) to others’ caregiving moments that for too long have gone unnoticed:
What is your caregiving moment? Where were you when care became a central part of who you are?
Every caregiving experience is different, but behind every caregiver story is a moment—a moment when we realized that the care and love we were called to provide would make us different in every way possible. Our caregiving moments need to be shared because they will remind us that the need for care isn’t unusual or unexpected. It’s just part our ongoing, collective story.
If you’re anything like me, busyness is an unforgiving and deceptive filter. It often feels like such a struggle to navigate the whirlwind of everyday life. Too often, busyness becomes our default guide when trying to discern what needs to be done to make a difference.
Making a difference is an incredibly admirable goal, but it also can leave us feeling exhausted, incomplete, and confused. What if we reexamined and reprioritized our lives through a different lens that didn’t depend only on accomplishment? If being, rather than doing, was also valued . . .
- Whom we spend our time with would matter most. We get so enamored with the names of companies we have worked for, or the places we go to school, or where we’re from, that it’s easy to overlook the impact of the very people with whom we interact on a daily basis. Acknowledging the individuals who shape our everyday realities is often neglected because we’re told, in a variety of ways, people are irrelevant to our goals: “No one values my interactions with colleagues because they have nothing to do with my quarterly evaluation.” “No one cares about whom I care for and about. They just want to know if I get my work done.” But show me who you devote your physical presence, time, energy, and thoughts to, and I can show you the forces that shape you. The contours of our lives are not simply shaped by abstract goals, they are determined by the relationships we make and sustain in our everyday lives. We emerge everyday, not out of nothingness, but from the layers of care and attention of those that surround us.
- Presence would be the ultimate act of accomplishment. When we only talk about what we are doing to make a difference, we also set ourselves up to be perpetually disappointed . . . just wait, I’ll be valuable and noticed once the project is done . . . until my work of creation is completed . . . when the person I care for is better . . . once I finish my education. If we truly valued presence as a type of accomplishment, we wouldn’t delude ourselves into thinking that satisfaction will only come to us sometime in the future. Our presence with others is both process and product, complete unto itself and, at the same time, always shaping our futures. If presence was truly valued as sufficient and meaningful unto itself, we would drastically change the questions we ask one another at the end of a day. Instead of trying to assess the quality and value of our days by asking, “What did you do today?” we should be asking a much more profound question: “Who did you devote your time and attention to today?” Then, and only then, will we begin to understand that the meaning of our experiences can’t be separated from whom we spend our time with, around, and in response to.
- Deep connection with family, friends, and those nearest to us would be admired more than being adored by strangers. Fame has been confused with importance so much so that we sometimes mistakenly believe that public acknowledgment is synonymous with value. This delusion denies the importance of the deep but often overlooked connections we make with family members, neighbors, and colleagues. Our everyday interactions are always meaningful, even though we rarely acknowledge their impact. Fame compels us to believe that making a difference happens out there, beyond us, in a community far, far away. Fame is the intoxication of making a difference in the lives of those who do not know us. On the other hand, being a difference means cultivating deep connections with those who know us best. We live in an ongoing ecosystem of interactions that is continuously affected by our presence and care and attention. In time of others’ needs, it’s not only about what we do for others. Deep care is also about a willingness to be close enough to listen to those we care about. Too often, we forget that our presence alone is sometimes the only response needed. Yes, that’s right, our presence and attention can be a profound response to life’s greatest questions and needs.
Being a difference doesn’t only mean changing people’s lives, it means enhancing the quality of people’s lives, including our own. It requires us to appreciate and respond to the people we move by and around and with in the course of our daily lives. Everyday life doesn’t call us to be brilliant or unique or engage in incredible feats of heroism. Life, however, does require us to believe that our attention and presence and care always make an impact. Always.
“Hi, my name is . . . ” This is what we say to one another at the beginning of a new relationship. We believe introductions should only happen once because upon learning someone’s name, we seemingly know them now and forever.
Life transitions, however, require us to do something strange—re-introduce ourselves to those who already know us. Life experiences change not only us but also how we need those closest to us to know us. You may need to re-introduce yourself to those closest to you when:
- A life transition has changed you. Most of us recognize life transitions—marriage, divorce, retirement, loss, caregiving—but we’re not nearly as good at communicating how these experiences change us. It’s scary trying to explain to those we know how we have changed or how different we’ve become as a result of our life encounters. In a time of change, there is nothing more reassuring than knowing we can count on someone whom won’t change. Interestingly, this same expectation—“Don’t change, don’t allow life to change you”—is a standard we only hold for those we know the most. Life’s inevitable transitions require adaptation and reexamination. Memories allow us to find comfort in the nostalgia of who we were, but inviting others whom we are familiar with to be part of our change is essential for reinvigorating relational authenticity.
- A life experience has changed your beliefs and values. Most people think beliefs and values are something we possess and have always possessed. In reality, beliefs and values are always under construction, shaped by our bodies and experiences and relationships. How could an illness not require us to rethink our values? How could our grief for a loved one not inspire us to reprioritize what we view as most important? How could caring for someone we love not impact the way we see and act in the world? Our beliefs and values are fashioned in the image of life’s overwhelming forces. Grief, mourning, love, and care are deep winds of change requiring us to constantly re-align ourselves with our experiences. If life experiences sculpt our beliefs and values, we need not be expected to remain loyal to what we once believed. Instead, we should be prepared to help others better understand who we have become by pointing to the very experiences that shape us.
- When we feel trapped by others’ expectations of consistency. We know ourselves by how others’ respond to us. We can feel stifled, however, when others’ categories for us no longer fit. Consistency is a prerequisite for relational comfort. We like people who are consistently predictable. But feeling compelled to remain loyal to what others think we are (and should be) is an ongoing relational challenge. Most of the time, we drift away from these relationships because it’s so difficult to tell others how we are no longer who they think we are. Telling others whom we are not—“I’m not like that anymore” and “I don’t believe that anymore”—isn’t nearly as effective as inviting others to see additional parts of ourselves rather than having them make a choice between our old(er) and new(er) selves.
Re-introducing your new self to people you already know doesn’t need to be a formal event. It can be an ongoing process that happens in the micro-moments of everyday conversation and connection. A willingness to allow others to participate in your evolving sense of self will allow you to talk about your experiences and you, simultaneously:
“My experiences caring for my dad has helped me understand something I never knew before . . .”
“I used to believe that . . . but my son’s experiences at school have taught me . . .”
“I used to be so clear about that but after my sister’s death, I can’t help but think that . . .”
The comfort of long-standing friendships is a source of harmony in a world of disruption. To remain authentic to experiences that shape us, we must create bridges that allow change to be a source of connection with those willing to understand how our bodies, beliefs, and values are constantly under construction. Today, try re-introducing yourself to someone who already knows you, leading with those parts of yourself that will never change but also highlighting the parts of yourself that have been transformed in response to life’s callings.