A New Standard of Leadership

2016 April 20
by Dr. Zachary White

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?

Inside Out

2016 April 13

They’d walk by, leisurely pushing baby strollers enjoying the late summer nights.  Some would run by.  Neighbors would walk within sight, entering and exiting my view only long enough to get their mail. Some would furiously drive out of their driveway in reverse, late for something with someone, somewhere.

I couldn’t believe no one ever noticed me. I was looking at them through the bedroom window where my mother’s rented hospital bed had been placed. Day after day, hour after hour, through the window next to Mom’s bed, I stared. They didn’t look back. None of them. I stared and stared and stared and yet, I was invisible.

I wanted someone to notice me. I wanted to scream through the bedroom window, “Hey, you! Yes, you! Do you know what’s happening in here! Do you know? Do you care?”  But that scene never played out. And I never yelled out. And people never looked in. They had lives to live. Places to go. Calories to burn. Mail to get. Leisure to enjoy. Lunches to make.  Errands to run. Appointments to make. As a caregiver, I didn’t.

As caregivers, we look at the world from the inside out. Most people, they see the world from the outside in.

I watched others. They lived their lives.

I overheard their conversations. They talked of upcoming holidays and family reunions.

They exercised. I sat without anywhere to go.

They had to get somewhere on time. I had too much time with my thoughts.

For caregivers, our inside-out view of the world can make us feel invisible, alone, isolated, and yes, like outsiders living in a world of insiders. So what you ask? Feeling invisible to the rest of the world has real consequences. Here are just a few:

1.  The longer we are alone with our thoughts, the more distorted our thoughts become. The more I watched others live their lives, the more I wondered if the people I watched were purposefully avoiding me.  I really did convince myself that the people on our street, our neighbors, and even passerbys, purposively didn’t want to look through the window to notice me, my dying mother, and my father.

Left to my own thoughts, watching others from the inside out, I had convinced myself that they didn’t notice us because they must have not liked us. And then I convinced myself that they were avoiding us. And then I convinced myself that that they didn’t care. Eventually, I became more and more convinced that since the outside world stopped caring about me, I should stop caring about them.

2. The more removed from others we feel, the more reasons we find to stay away from others. This doesn’t make sense, right? You would think I would have wanted social companionship so I could turn my staring into conversing. But that’s not what happens. The more we feel separated from others, the more reasons we find not to connect with others. When friends called, I’d tell them I didn’t feel like going out or it wasn’t a good day. They wouldn’t understand my situation, I had convinced myself. I was different.  They had places to go and people to see and errands to run and appointments to make.  I no longer did. What would I say to them? What would we have in common?  The more time I spent in silence watching others, the more I convinced myself I shouldn’t spend time with others.

3. The more removed you feel from others, the more strange it feels to be in the company of others. When I did leave my inside view to venture into the world to run errands or get food for the family, I convinced myself that I was different.

When trying to order a sandwich, I stuttered. The words wouldn’t come out smoothly. When trying to come up with small talk to talk with the cashier, I didn’t know what to say. And I didn’t want to talk about the weather. I didn’t want to fake it anymore. I didn’t have the energy to act interested in the latest television show or the latest news story.  I was convinced others knew that I was an outsider. Everything and everyone seemed to move so fast. I felt like I was moving in slow motion, awkwardly off a beat from others’ rhythms. So I kept my head down and became more purposeful in my errands, trying to avoid conversations and small talk with others. I had to get home, I convinced myself, where I was wanted. Where I was needed. Where I was an insider.

As caregivers, we don’t see the world the way others do. We see the world inside out and so it’s no surprise we feel alone and apart from others. Though the world moves on in the midst of our care, we must attempt to keep our social stamina, even when we don’t feel like it. Especially when we don’t feel like it, being or connecting with others can help keep us from distorting our own thoughts in the privacy of our own minds. Sometimes, just talking to someone can help make us feel like an insider in a world of outsiders – even if it’s only for a brief moment.

Where’s Our Orientation Session?

2016 April 7

Organizations routinely help people adjust to their new roles and experiences through a process of socialization called onboarding. In this type of orientation, new employees are guided in their transition to effectively cope with the demands and opportunities of their new role.

Then why is it that the one role all of us will assume at some point in our lives—whether we want to or not—has no deliberate socialization process? Unfortunately, the caregiver role is believed unsuitable for preparation because it is too often mistakenly viewed as . . .

  • Reactive—Unlike most other roles in life, people don’t dream about their care roles. We don’t preemptively think about what this experience will look like, how it will change us, what it will ask of us, or how it will change our relationships to all others. In the quiet moments of life, there seems to be little reason to collectively discuss care at the dinner table, or with family and friends.  Discussions of care only seem to make it into our everyday conversations when accompanied by its partner, urgency.  We dream about and talk about and anticipate love and friendship and connection but care always seems to come at us—leaving us perpetually off-balance.
  • Outsourceable—Typically, one person is designated (or drafted) to attend to all care needs—personal, emotional, support, medical, transportation, food, shelter, safety, legal—even though the naming of a caregiver mistakenly reinforces the belief that care is an individual task rather than a collective process. Our culture’s willingness to outsource care to one individual defies the relational properties of care that expand ever-outward into all aspects of relational life.  Care cannot be compartmentalized, it finds its way into every part of our lives, seeping its way into our consciousness and all of our relationships.  When caregiving is labeled as an individual experience, it’s no wonder that we are left unsure about how to share our experiences with those who don’t realize that care implicates us all. Whether we want to believe it or not, no one can be a mere observer when care is involved.
  • Illegitimate—Formal roles have acronyms—MD, RN, LPN, PhD, JD, LCNconstantly reminding us of their legitimacy, purpose, and usefulness. On the other hand, informal roles are often invisible because there are no performance reviews or standards for accreditation reminding others that what is happening is real and important.  Without the legitimacy of role formality, we are left without a flicker of light to sustain and guide us along our journeys. Along the way, we can’t but doubt that we are alone in our experiences as we engage in our caregiver roles without others’ acknowledgment.  Everyone willingly accepts the boundaries of formal roles but when it comes to informal roles like caregiving, love and care and proximity seemingly require us to do any and all things.
  • Temporary—The ongoing ritual of joining and shedding different roles throughout life is expected. But the care role is much more difficult to characterize because even though it is inspired by our loved one’s needs, it can’t be reducible to their condition alone.  There is no “exit” interview for a care role because our care means we can’t simply leave our memories even when care may no longer be needed.  Our experiences can’t help but stay with us in ways that oftentimes can’t be explained.  It’s not possible to make a clean break from the care role and talk about it in the past tense because the person we cared for is hard to distinguish from whom we have become.

Our orientation sessions need not wait for the urgency of care.  We can begin the conversations and discussions about the caregiver role today, now, with family, friends, and in our workplaces.   There is no way to fully prepare for the care role but everyday conversations will help orient us and others to the one rite of passage in contemporary life that reminds us all of our connections to one another.

 

If all of our journeys were lit with our lanterns of care, the darkness of night would quickly transform into the light of day.  It’s time we light our lanterns—for ourselves, our loved ones, and for those who will soon join us . . .

Who’s In Your Care Crew?

2016 March 30
by Dr. Zachary White

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.

 

 

 

 

 

 

The Eloquence of Silence

2016 March 23

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.

Reclaim Your Beginnings

2016 March 16

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.

So You Feel Burnt-Out; Now What?

2016 March 8

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.

Not All Attention is Created Equal

2016 March 2

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.

 

 

 

Our Caregiving Moment

2016 February 23

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.

Being a Difference

2016 February 17
by Dr. Zachary White

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.

Re-Introducing Yourself—After A Life Transition

2016 February 10
by Dr. Zachary White

“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.

Caring without Status

2016 February 3

Ever wonder why caregiving gets so little attention and informal caregivers like you are so often underappreciated?

Some of the more significant transitions in contemporary life—from getting into college to landing a job—are composed of life-long dreams, hopes, and preparation. Unfortunately, not all life experiences receive the appreciation they deserve since status follows public acknowledgement. Here’s why care and caregiving is so overlooked and undervalued…

  • There are no standardized tests to determine who can become an informal caregiver. Our culture adores standardized tests because they provide an easy way to measure ourselves against others. Ideal candidates for care, however, don’t have to know any specific type of information but they do have to possess one undeniable trait: the ability to constantly adjust and adapt. Instead of responding to abstract questions, resilience and adaptability are the key markers for admission. It’s easy to compare IQ scores but nearly impossible to compare scores of resilience. People with high IQs feel compelled to tell you about their numbers, whereas resilience and care are always demonstrated. You don’t need to tell anyone you’re resilient, others around you just know.
  • Instead of a cover letter showcasing the ways in which your intelligence, experience, and training mean you are one of a kind, caregiver cover letters would feature our insecurities. This type of letter would require an acknowledgment of our weaknesses. Our fears and frailties would play center stage. These parts of ourselves are prerequisites for care because they allow us to empathize with others. Any references to future outcomes would surely disqualify someone from the caregiver role. Caregivers don’t begin this journey out of self-interest. We don’t work in the realm of outcomes. We live in a world of doubt and hesitation where the future is about the next hour, not a strategic plan to climb the corporate ladder. The only ladders caregivers want to climb are to get us closer to someone we care about, they’re not designed to get us out of a situation.
  • There are no fancy promotions or ceremonies marking your performance. Days, months, or even years may pass without anyone paying any special attention to your efforts. Few will recognize your years of service, effort, impact, performance, or capacity because there is no special hierarchy differentiating one caregiver from the next. And there aren’t communal commemorations because caregivers rarely associate with one another in person. Rarely, if ever, will you hear caregivers speak of themselves as a class or group. Caregivers don’t allow themselves the privilege and comfort of the “we” because there is no union of caregivers, simply a legion of “I’s” doing and being and serving.
  • Parents and relatives and friends won’t be able to brag about your experiences. There are no “schools” of informal caregiving—no Harvard or Stanford to use as a guiding goal from which others can respect and admire. Others may speak highly of your role and your efforts, but it begins and ends there.   There is nothing for outsiders to show their support of your value—no jersey to buy that binds you to another, no bumper sticker that highlights your efforts, no stock market of care that would legitimate your endeavors.
  • The caregiving role doesn’t mean you are heading to an exotic location for your hero’s quest. The excitement and mystery of heading off into the world isn’t part of the caregiver role. Care isn’t found far away. It’s up close and personal. Inspiration doesn’t come from the exotic. It comes about because of shared relational history. There are no fancy orientation sessions preparing you for what is to come and how to respond.  We don’t have the luxury of getting ourselves (and others) ready for what is about to come–“In three months, I’m going to be a caregiver.”  The caregiving role can’t be planned. We respond to it before we even know we’re in it. You don’t step into the caregiving role, it steps into you.
  • There are no alumni “homecoming” parties. There are caregivers next door, down the street, down the hall, and in the next cubicle. But their efforts often go silent and unnoticed because there are no parties or reunions to mark them and their role. Caregivers often think their role is so unique that they have little in common with those in the same situation. Where would they return to? What would they say to their children about how the experience of care changed them when care is not bound to any one place? Care isn’t something that happened to us during a certain year, it’s something we still live with. For caregivers, the where is always secondary to the who because it’s nearly impossible to explain how you were changed when care changes every part of how you see yourself.

One day, perhaps soon—caregivers will begin to be valued because it’s a role that will come to us all at some point in our lives. It is the one transition in life we all experience—just not at the same time. I dream of the time when our culture will boast of care and caregivers with the same pride it speaks of someone who has made it into a prestigious school or works for a highly-acclaimed employer. Then, and only then, will we begin to know our care experiences have achieved the status they deserve.

 

 

 

 

Communicating Care — Know Your Choices

2016 January 27

I know, I know…care is perhaps most powerful and influential when experienced face-to-face. I’ve written about the secret language of caregivers and the important benefits of in-person care. Yet, the scope of our caregiving responsibilities requires us to think about the different ways we can care—like a painter who begins with primary colors, but then finds beauty and possibility from mixing different colors with a variety of media from oil to acrylic to water.

The depth and breadth of our caring cannot be reducible to one medium, so it’s important to better recognize how our care choices affect the types of care we give and receive . . .

 

In person-care allows the sharing of time and space in a particular moment with another. In-person care means we need not have to say anything—our presence alone is sufficient as it invites the use of our full body and self to communicate the deepest form of care through a shared glance, the touch of a hand, or the sacred comfort of complete silence near someone we love. At the same time, in-person care presumes we can share the same space at the same time, a luxury that many of us may not be able to enjoy because of geographical distance, work obligations, and family responsibilities. Unlike other forms of care, face-to-face care requires complete presence and attention, even when we (and our loved one) may not have the energy or capacity to bring our full selves and bodies into the spontaneity of the moment.

Phone-based care is remarkable in its capacity to allow us direct access into the inner world of the person we love. It is so easy to pick up the phone and immediately hear the unique tenor of your loved one’s voice while filtering out the rest of the world as you and your loved one hear and respond in real time to one another. At the same time, phone care requires both parties to verbally express their thoughts. Sometimes, however, the obligation to put our thoughts into words may be too much for us and our loved ones. The phone does not allow for the benefits of mere presence as we do not call to hear silence, rather we expect the person on the other end of the line to be able to fully participate—hear, interpret, follow, respond—even though this type of mental and communicative dexterity may not always be possible.

Texting allows us to remind our loved ones that we are thinking of them when we are not physically present. Texting a picture sometimes eases the burden of having to put into exact words what we are thinking and feeling. Unlike the phone, texting allows access without demands—we can remind another we care and our loved one can choose to respond in his or her own time. Work conflicts, time zone differences, morning/night person disparities, etc., can be overcome because a text can be examined and responded to in the flow of our loved one’s schedule, not ours. At the same time, texting requires both parties to have a smart phone, know how to use the texting feature, and feel comfortable communicating in quick and informal exchanges (an :) emoji or quick phrase) rather than in complete and grammatically correct sentences.

Letters and email allow us to transcend the individual moment and purposefully share thoughts and experiences that we may not feel comfortable nor know how to express in face-to-face encounters. While writing letters or emails allows us to share what we most want to get across without the challenges of the physical moment—embarrassment, stuttering, interruptions, distractions—they are also the most time-consuming of communication choices and requires the most forethought. And yet, this very forethought may be the letter/email’s greatest appeal as the effort it requires demonstrates our care and what is written remains permanent in ways that allow us to revisit and remember for years after.

We are multi-dimensional, so why would we expect our care to be the sole property of any one medium? Care is so complex and dynamic that it calls us to use whatever care medium is necessary. Like an artist, we need not become constrained by any one medium. Our care should always be guided by using the tools best suited to create the appropriate shade and hue and coloring and texture needed for the particular person we care for, given our specific situation and relationship, amidst the constraints and opportunities of our unfolding lives.

Please, Ask Me a Question

2016 January 20

We know more about more people than we ever have before but this is seldom a result of the asking of a specific question to a particular person amidst a distinct situation.  Yes, people share. And overshare. Advertise.  And celebrate.  But do we really understand?

Caregivers, when was the last time someone asked you a question? A genuine question. The kind of question that is asked of you, for you, and about your situation.  Not an assertion or accusation but a question. Not a camouflaged statement that allows the questioner to tell you more about him or herself. No, a real, genuine, question that allows you to explain, contextualize, and share so others can help better understand you, and your situation—not what they think of your situation—but your situation as it is being lived and experienced in your own words.

When it comes to health, most people don’t like to ask questions.  Health makes people squeamish. Answers can’t be predicted. Health is private, we tell ourselves—we shouldn’t pry.  It’s none of our business. If they want to tell us they will, we convince ourselves.  Anyway, if we did ask, we might make someone uncomfortable. We might make ourselves uncomfortable.

Rita Charon, a physician and professor at Columbia University, writes eloquently of how she begins each patient encounter.  Upon greeting a patient in her doctor’s office, she says,

“I will be your doctor, and so I must learn a great deal about your body and your health and your life. Please tell me what you think I should know about your situation” (Narrative Medicine as Witness for the Self-Telling Body, 2009, p. 122).

Beautiful, isn’t it. Revolutionary too.

The last line, “Please tell me what you think I should know about your situation” distinguishes her, and her invitational style, from so many others.  She allows her patients to draw their own lines—to mark what’s (un)important—beginnings, endings, significant concerns, fears, worries, what an illness means, how it affects their lives, expectations, and future—in their words. Not hers. Their story, narrated in the language of their everyday voices, comes alive not because of a perfect question, but because the question is the permission for their story.

 Caregivers, if there was one question you wish you were asked about your caregiving situation, what would it be? What would you like others to know about your challenges? What would you like others to know of how you are making sense of caring for someone you deeply love while also trying to navigate your own concerns, hopes, and anxieties?

Questions are magic—not the questions themselves—but what they make possible. Questions allow us to see how others see their world(s). What makes sense to them. What doesn’t. There is no perfect question. There are merely questions that allow us to grow toward one another that go beyond clichés and the weather and a listing of accomplishments. Open-ended questions are the ultimate act of care—they simultaneously demonstrate the questioner’s care for another while also allowing a shared reality to be created between two people that defies mere information or answers.

If you want to make a radical statement of care that doesn’t require any training or cost any money or require an appointment—ask a question and allow another to bring you into their world.

If you know someone in a caregiving situation, or if you are in a caregiving situation yourself, ask someone (or yourself) this one simple but profound question and you’ll be surprised where it will take you:

Please tell me what you think I should know about your situation. 

Then listen.

You might be amazed at what happens.

A Different Kind of Relationship

2016 January 13


Not all relationships are created equal. Engaging in a friendship relationship is different than a romantic relationship, which is distinct from a parental relationship. Unfortunately, our prior relationships rarely prepare us for caregiving because it is unlike any other kind of relationship we’ve experienced. If you’ve ever felt unprepared for your caregiving relationship, it may be because . . .

  • Caregiving Relationships Don’t Have Clear Beginnings. Most other types of relationships encourage clear beginning stories. These “I’ll never forget the first time we met” narratives are essential because they remind participants of their common history in ways that strengthens their commitment to one another. For caregivers, origin stories are not encouraged because others don’t want to hear when our care relationship began, they want to hear about when it might end. So our care beginnings can become blurred over in ambiguity and confusion:  When exactly did your care begin? It’s oftentimes hard to discern, isn’t it? Was it with the first doctor visit? Or did it begin when your loved one talked about her pain months, or even years, in advance of an official diagnosis? Amidst this confusion, we don’t give ourselves permission to indulge in an origin story that might capture and reinforce the unique bond of our caregiving relationship.
  • Caregiving Complicates our Understanding of Relational Choice. In almost all relationships other than family, participants are believed to act on choice. When a relationship dissolves, it’s because of choice—a recognition that the reasons to be together are less than the reasons to be apart. Caregiving, on the other hand, isn’t all about choice because a relationship defined by care means that need, obligation and challenge can’t be untangled from the discernible threads of love, opportunity, and willingness. We don’t seek out caregiving relationships, they come to us as both parties are called to become something other than they had imagined—clearly, no one wants to be ill nor does anyone dream of the perfect caregiving relationship in the same way they might idealize a perfect friend or life partner.
  • Bonding Over the Future May Not Be Possible. Most others’ relationships are intensified by talking and dreaming out loud about the future—“I can’t wait until we get away for our one-year anniversary”—to bring them closer together in the present. For caregiving relationships, both parties must seek to establish ongoing connection without the future as a crutch. It’s no surprise that when the intoxicating language of the future tense is stripped away, the caregiving relationship itself is filled with anxiety and uncertainty.
  • Caregiving Relationships are Not One-Dimensional. Using the one-dimensional label of ‘caregiver’ to account for all care-inspired relationships denies the diversity of our care experiences—acute, chronic, in-person, long-distance, mother, father, sibling, alone, familial, amicable, antagonistic—and also makes it more difficult for us to express our experiences. Everyone recognizes both the joys and challenges of friendship and romantic relationships—the inevitable ups and downs, tensions and joys, frustrations and thrills, fears and possibilities. Unfortunately, caregiver relationships aren’t given the same freedom, so our relational realities of laughter and sadness and life-altering appreciation and mourning and connection and isolation can’t help but be misunderstood.

Mapping the terrain of our care-inspired relationships is so important because it allows us to speak to our experiences beyond the I and into a we where strength and support comes from knowing our path is not to be experienced in the darkness of mystery and isolation. It’s way past due for our care-inspired relationships to come out of the darkness and into the light of understanding as we are called to these most precious of relationships when we least expect them.

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