There is no greater refuge than family. Family members are on the front lines of care. In times of need, family is who we turn to first, and usually, they are the people who remain with us throughout. Our desire and willingness to provide care for the people we know and love, however, doesn’t […]read more...
When people are gathered together this holiday season, there is nothing that grabs others’ attention more than bucket-list stories about risk and adventure like bungee jumping, skydiving, car racing, river rafting, scuba diving, zip-lining, rock climbing, exotic vacations, and on and on. These activities are almost always met with awe and appreciation because we admire people who push their limits.
On the other hand, caregiving rarely receives much attention from others. We don’t travel to faraway places. We don’t propel our bodies through the air or under the water to feel alive. Speed isn’t the proper barometer for our risks. Yet, what we do is as risky and challenging as any outdoor adventure because it involves so much more than strapping ourselves in a seatbelt. Here’s why our experiences as caregivers push us to our limits but probably won’t receive much attention around the holiday table this season:
- There is no training manual for our care. We’re not professionals. We didn’t go to school to learn how to care for someone we love when they need our help. We’re on-the-job learners. We learn by our mistakes and we adapt in real time and we keep going. There is no set of instructions we can find that will help us figure out what we are doing. Each of our situations is unique. What we do makes IKEA instructions look like a breeze. No one thought through (nor could they if they wanted to) a set of instructions to guide us through the steps of caregiving. There are no steps. We are creating our own blueprint as we go.
- There is no safety net. You can easily read about the specific medical condition of a loved one. And you might have watched a movie about someone who faced a similar situation. But when you’re in it, when you’re caring for someone you love, you can’t control when it begins and when it ends. There is no practice session. No dress rehearsals to help you figure out how you’ll respond, let alone how others will respond. One day, without warning, you’re in it and soon enough, you can’t remember what life was like before.
- Our experiences are beyond pictures. We don’t have pictures to share of what we are doing or what we are experiencing with our loved ones. Pictures are for people who engage in public acts that can be easily captured. What would we take a picture of? A laugh of joy and simultaneous sadness? Physical presence? Picking up medications? Cleaning the house? Worrying? Talking? Watching? Seeking information? Protecting? Awakening in the darkness of the night with questions that do not have answers? Because caring is something we engage in everyday, pictures seem silly. Pictures are for the out-of-the-ordinary experiences, not the everyday. Our life is filled with the ongoing necessities of care, not the vacation moments that wow people.
- It changes you. When you care for someone you love, you can’t help but change. Not the kind of change most others might notice at first, but the kind of change that affects how you see others. What you find important. Trivial. Worthy. Worthless. Some friends will suspect something—“Are you okay, you’re not acting like yourself?”—but it will be hard for you to respond because how do you explain that the person you are now is so different than whom you used to be. There is no radical transformation others can see in you—you might look the same—but caregiving is not like going on a roller coaster where it’s all about the adrenaline rush of what you did—it’s about the slow change of who you’re becoming.
- It’s not on anyone’s bucket list. Most people’s bucket lists are about things and goals they’ve dreamed about—travels to far away places and incredible feats of accomplishment. Caregiving is local. Everyday. Few people ever dream of caring for someone who is ill. Caregiving is about what currently exists—not what’s out there in the great abyss of possibility. It’s real, not imagined. It’s about the person before us, not about our ideal. It’s not about what we wanted, but what we accept as part of caring for someone. Sadly, the courage to care for someone you love doesn’t make the list of most people’s bucket lists.
This holiday season, when everyone around the table is telling you what they did this year, or what they want to do, remind yourself that it’s okay if your care for another won’t make anyone else’s bucket list. You’re engaged in a journey few engage in. You are caring for someone you love without an instruction manual, where you have to adapt each day to changing and unexpected circumstances. It’s messy. And yes, it’s risky because you don’t care for something far away. You care for someone you love. No need for a passport for this journey. No brochures. No accolades or easy-to-translate Facebook posts about your itinerary. You are risking something most others can’t imagine—being so near someone you love when they need you most. The view may not be easily explained to others, but the view does take our breath away nonetheless.
There is no greater refuge than family. Family members are on the front lines of care. In times of need, family is who we turn to first, and usually, they are the people who remain with us throughout. Our desire and willingness to provide care for the people we know and love, however, doesn’t mean family care isn’t complicated.
Here are three common reasons why providing and receiving family care can be complicated even though caring for and receiving care from someone we love is something many of us would never forego.
(1) “Of course I will, we’re family.”
Family caring for family is seemingly natural. Expected. It’s what love is all about. It’s what we do for people we love. Rarely, if ever, do we explicitly state these responsibilities, rather we internalize them and they become the very reason for our care.
“This is my father-in-law, of course I am going to care for him.”
“They’re my parents, of course I’m going to care for them.”
“I love my sister. She and I shared a life together growing up. I’m going to be there for her.”
We love, therefore, we care, but that doesn’t mean we don’t experience frustrations and challenges typical of all relationships. All relationships involve expectations, and familial care means that we oftentimes care without the expectation (or hope) of reciprocity.
As we accommodate our life to care for an ill family member, the burdens of care can become more pronounced—financial stressors, time demands, changed living arrangements, and work-care conflicts. Because we are family, we care despite these stressors. Over time, however, it is difficult not to experience frustration, burnout, and exhaustion simply because we must re-imagine our relationship with our ill loved one without the expected relational markers that once defined our relationship–shared hobbies, fellow traveler, confidant, cheerleader, admirer, financial provider, early-morning walker, lover, late-night television watcher, conversationalist….
In the midst of the unending needs of care, we must simultaneously rethink our relationship in ways that defy our past experiences without the explicit relational benefits we once received.
(2) “I know you, you know me . . .”
We know the person we care for and they know us. We grew up with them. They were our mothers or fathers or siblings. Relational intimacy is an overwhelming motive for care. A shared family history can also complicate care.
The very person we care for may feel trapped by not feeling comfortable sharing what is happening to their bodies, dreams, and anxieties because of how such disclosures might affect us. What if your mother told you of her desire to stop treatment for her illness? Of course, you’d appreciate her honest disclosure, but at the same time, would you be able to unlearn that knowledge amidst the backdrop of daily car rides to chemotherapy treatment?
Unlike acquaintances that don’t share a family bond, we must negotiate the uneven terrain of caring for a loved ones’ needs while also seeking to maintain a relationship. This relational journey can be very challenging when our care is impacted by our knowledge of the past and our expectations about what our relationship seemingly requires:
“Moms are supposed to be positive. Why is she telling me she’s done with experimental treatments?”
“Dad used to be so financially savvy. Why doesn’t he understand how caring for him is changing my own financial future?”
“I knew my brother’s body would eventually have to pay for his lifestyle. But why am I the one who has to pay for his bad choices?”
The people we care for are vulnerable. They need us. They love us. But can they always authentically and openly share frustrations with us, their primary lifeline to the world? Can they always realistically disclose doubt or helplessness or disappointment in light of everything we are providing them? Similarly, can we always authentically and openly share our frustrations with our vulnerable loved ones? Can we always realistically disclose our doubt or helplessness or disappointment when we know they depend on us for almost everything?
Frustration and disappointment are inevitable experiences of relationships, but these experiences may be even more pronounced for family caregivers and loved ones needing care. The irony is that because we know each other so well, some topics and conversations and feelings will remain silenced because of our desire to maintain our relationships with those we care about most.
(3) “What do you mean I may not understand?”
When we are our loved one’s life line, it’s hard to know (let alone admit) that our care alone may not be enough. Acknowledging that our loved ones may need outlets beyond us may be difficult to accept. Sometimes, despite our willingness to help, our loved ones may need to access and talk to others who are unlike us so they can receive support from…
Someone who has first-hand experience with a particular illness.
Someone who shares a similar diagnosis.
Someone who will not flinch or become embarrassed by what is happening to their body. Someone who will not make judgments about them and their condition.
Someone who will not hold them hostage to their past.
Someone who will not hold them hostage to their loved one’s hopes for the future.
Caregiving is something we do out of love. And it is our very love for the people we care for that can sometimes make family care deeply moving, but also complicated.
We are at a crossroads in American life—our beliefs about care and caregiving no longer reflect our everyday realities. In a recent interview with the Washington Post, Anne-Marie Slaughter, author of the new book, Unfinished Business, discusses the challenges of the caregiving role and argues that when we talk about care, most people tune out.
But why is it that care in American life is so misunderstood when we know the demand for informal caregivers—that’s you and me—is greater than ever. If you’ve ever wondered how care and caregiving have become so misunderstood and marginalized, here are some common myths that don’t reflect our everyday realities:
- “Some people are just better at caregiving than me.” Nurses, doctors, and other medical practitioners, these are the people who are the experts, right? Not necessarily. The need for care does not begin and end with professionals. Care and caregiving isn’t something we can ever fully outsource, because care cannot be contained in hospitals. We are forever grateful for the experts of the body, but care also includes helping us cope and make sense of what happens to us and our relationships as a result of our bodies. We don’t need to provide our resume to participate in a caregiving relationship with someone we love. Care isn’t reducible to something that we’re either good or bad at—attention, access, and willingness are the most profound requirements of care that all of us possess. Care doesn’t ask us to be extraordinary, but to be remarkably ordinary. To walk with someone in the midst of need. To listen. To reach out. To be available. To know that we are bound to one another not by competence, but by fragility.
- “Care and caregiving is for older people.” This myth of care is deeply ingrained in our collective belief system that associates age with need. Tell this to the college aged student whose parent has been diagnosed with Huntington’s disease. Tell this to the 30-something father of two, whose dad has Alzheimer’s. Tell this to the child whose parent has debilitating pain that affects her ability to work and provide. Tell this to a mother whose father’s mental illness affects her whole family, each day, without notice or preparation as to what the next day will bring. Care is not defined by age, status, occupation, or gender. Loss, illness, and grieving do not happen only when we get older. To be involved in life means care can’t be postponed until we are ready. It finds us, wherever we are and whatever we are doing, whatever our title, and whatever our capacity or desire.
- “I have too many things going on in my life to be a caregiver now.” We’re never ready to be a caregiver—we are all drafted. Caring for someone we love doesn’t mean everything else in our life stops. Caring for a loved one isn’t something that we simply provide or give. This antiquated notion of care means that we are completely healthy and the person we care for is in complete need. It’s never this simple. Those in need of care live with us and amongst us, amidst our many other obligations, worries, relationships, and joys. To care for a loved does not mean having the luxury of letting go of our other responsibilities. We work and care and love and suffer and support and need and hurt and raise children and care for parents and are inspired by those we care for. Caregivers are not free of need and care themselves. And those being cared for are not void of dreams, wishes, and the capacity to make a difference. Care doesn’t begin with bold proclamations and it doesn’t end when we think it will. It is simultaneously momentary and permanent.
- “Caring for someone I love will be too much for me too handle.” Suffering and need and illness do not fall upon only a select few of us. Few loved ones choose to be a caregiver. Some of us are not more apt to “handle” other’s challenges. Care and caregiving is not a specialty we major in or go to any special school to study. This is because we’re never just caregivers. Just like we’re never just employees. We’re all of these things, mixed together in ways that make care not something we do as an occupation, but something we become. Gone are the days when one person can handle care alone. Care is rarely achieved alone—it’s accomplished in coordination with doctors and nurses and family and friends and work colleagues. It’s not something that we can delegate to others nor is it something we can do all our own. Care is a social act, not a private act.
In a world of specialization, care is one area of life that asks us to do and be in ways that challenges us mentally, spiritually, physically, and emotionally beyond what we thought was possible. It is the universal, human experience. None of us know what this journey will bring. When care meets love, we are alike in that we are all unprepared.
When we’re in pain, we don’t mind screaming out, calling attention to ourselves and our experiences. We need help. Look, don’t you see? Amidst pain, we turn outward. Family, friends, and specialists alike willingly race toward us to relieve, remedy, and improve our condition.
Suffering, however, is a different experience. There are no ambulances to race to us when our expectations are interrupted and what we thought would happen is no longer possible. Few others come to us in the midst of suffering, not because they don’t care, but because we far too often relegate suffering to that of a private experience.
Go ahead, walk on by. There’s nothing to see here. This is a private matter. Keep going. That’s right, let’s respect their privacy and dignity. Let him be and give him the respect he deserves.
At first glance, these sentiments appear caring and noble, but they more aptly reflect our collective discomfort with public communication of suffering. Here are some common reasons as to why suffering is so frequently pushed away from sight into the shadows of American life.
- Suffering can’t be proven. If something can’t be pointed to, it becomes mysterious. And when something becomes mysterious, we don’t know what to do with it or how to make sense of it. If suffering can’t be pointed to on a CT scan, then it often becomes dismissed as something less than real—something you experience. That’s your suffering, not mine. Once removed from the public spaces of life, it’s ours to deal with on our own. Our property. Something we must deal with alone or hide before we present ourselves to others.
- Suffering is difficult to communicate. Suffering renders us silent. It doesn’t seem to fit within our everyday life. The experience isn’t neat and tidy, able to be categorized as bad, good, getting better. Recovery and improvement are beyond comprehension because suffering makes it so difficult to look beyond the fog of now. Disoriented and distraught, suffering nudges us away from one another, slyly convincing us that our experience is ours alone, and no one else’s. Too often, suffering appears beyond expression because it is messy and contradictory, defying all sympathy card categories we resort to when trying to figure out what will make sense to others.
- Suffering resists prediction. In the grip of suffering, the future is now. The past is now. And the present seems permanent. Unlike physical pain, suffering is scary to most others because there is no clear prescription that will make it go away. We can’t anticipate exactly when suffering will leave us. Grief. Loss. Fear. Deep disappointment and self-doubt take the future away from us, imprisoning us in a permanent moment.
- Suffering is contagious. We don’t fear other people’s pain. We do fear others’ suffering. When we see someone struggling, we are reminded of our own fragility. Of the fact that life may not be as predictable and consistent as we might lead ourselves to believe. If we acknowledge others’ suffering, then we can’t escape the fact that we are vulnerable too. Our bodies are fragile. Our relationships are constantly changing. We can’t help but anxiously watch as our expectations bend in the face of unexpected forces seemingly beyond what we thought possible. Amidst suffering, we are reminded of our powerlessness.
Instead of walking on by those who are suffering, what if we walked toward them? And what if the them was us—either now or soon to be? What if we listened to those in the midst of suffering, not because we knew being near suffering is easy, or because we have any answers, or because doing so will make us feel any better. Rather, what if the acknowledgment of suffering in everyday life created spaces for expression and acknowledgment beyond accolades for winning or achieving or accomplishing? What if we believed suffering was a testament to responding to life as it is being lived . . . not something to be shameful of, but something to remind us of our connections to one another.
In a culture that values being noticed, speaking is king. Leaders speak. Greatness is said to be achieved through words. Minds are changed and great feats are accomplished by the voice standing out and above the crowd. Speaking gets you noticed. It makes you noticed and gets you attention. Who in their right mind puts listening as a bullet point on their resume?
Listening, on the other hand, is the forgotten art of communication. Listening is said to be reserved for those who seemingly don’t have anything to say. Listening is thought to be left to those whom have no great ideas to share. No minds to persuade. No great feats to accomplish.
Here are 5 reasons why listening is more important and vital to care and caregivers than speaking:
(1) The moment we open our mouths to speak, we often close off our ability to observe and appreciate our surroundings and the people around us. Do you have something to say? Something to get off your chest that’s been bothering you for days? Some argument that’s been on your mind lately? Open your mouth and all else around you disappears into oblivion. Speaking transcends the person you are talking with and is the ultimate form of abstraction. Speaking changes situations, it doesn’t seek to understand the people or circumstances in those situations.
(2) Listening is the anti-abstraction. Listening has no past and no future. It can’t be used as a weapon to unload on another. It doesn’t allow us to purge ourselves of frustrations and angst that we’ve been holding on to. We can’t prepare for how we are going to listen. Listening always takes place in the company of others. It is the ultimate human act of now because you can’t listen unless you are in the company of a body, a voice, a presence. Listening is the ultimate act of presence and it fastens you to the moment and opens you up to all that is before you.
(3) Speaking separates us from others because we only open our mouths to say something when we want to correct or alter the world and the people around us. Speaking pushes others away from us. Speaking creates I-you distinctions—“I’m saying something . . . you pay attention to me.” When done right, speaking silences the other. “I win, you lose.” “My argument is better than yours.” “I totally shut him up with my thesis.” Statements and propositions attack and poke others into defensive postures of pro/con retreat, creating an antagonistic relationship that far too often is about outmaneuvering the other person.
(4) Listening draws others closer to us. Listening allows us to be nearer to one another, both physically and psychologically. Listening is an act of kindness, of openness. Even thousands of miles away, on a phone call, listening can make us feel like we are next to one another.
Understanding is the natural offspring of listening because it allows us to remember that we are not alone, that another shares in our current experience. When we listen, we can’t help but find ourselves turning our attention, our hearts and our presence toward another where the I and you mysteriously transform into a we.
(5) Speaking is a public spectacle to be seen and heard as far as our voice will project. Listening isn’t showy. It’s subtle. It doesn’t draw an audience like speaking does. No one will gather to hear you listen. There is nothing to be seen. No standing ovations. No curtain calls. Listening requires no amplification because the act itself draws those to whom we listen nearer to us. When we listen to another, others open themselves up to us and willingly join us.
You will undoubtedly get noticed when you speak. However, you will be remembered when you listen. Listening, the kind of listening that is sincere and genuine, isn’t simply done with one’s ears. Listening is a fully body experience that notices absence as well as presence. It is the ultimate act of faith, requiring nothing of the person before you. If you care for another, listening won’t get you noticed, but it will ensure that all else will be forgotten in the midst of what happens between you and your loved one.
It’s that wonderful time of year during which all are invited to wear masks and, for one night, we revel in hiding behind them. For most people, Halloween is a once-a-year event. For people who suffer, putting on a mask isn’t something we do just once a year. No, when we are struggling with something, we almost always wear masks. We don’t go to a costume shop to buy them, we are much more creative in performing roles that disguise our feelings, thoughts, and experiences in the flow of everyday life. Here is my list of this year’s most popular masks along with a cautionary warning about how each mask may affect the wearer.
- The Saint Mask—The saint mask is a perennial best seller. Why wouldn’t it be? Saints walk into difficult situations when most others walk away and can serenely endure when most others shudder. Saints seemingly embrace struggle with such elegance that their compassion and endurance serves as proof that they are superheroes when it comes to coping with suffering. WARNING: This mask omits more than it reveals. The saint mask doesn’t allow for moments of self-doubt or lapses of faith. It is there for others to admire with awe. For those of us who only wear the saint mask, we risk disallowing ourselves from connecting with others because of our struggles, sorrows, and difficulties.
- The “Everything is Going to be Okay” Mask—If not the best-selling mask each year, this disguise is often the most celebrated and appreciated costume. It reminds others that despite what is happening, everything is okay and the situation is under control. This mask is popular because it allows others to feel comfortable knowing that wearers are simply experiencing a brief interruption as life will quickly return to normal as if nothing ever happened. WARNING: This mask prevents wearers from allowing themselves to be changed by the experiences they are enduring. People who wear this costume are so insistent on returning to life as it once was lived that they may end up denying how their thoughts, beliefs, and relationships are changing them and their relationship to others. This mask sometimes comforts others at the expense of the wearer.
- The Fighter Mask. The fighter is another big seller because it celebrates the belief that all challenges can be overcome if the wearer has an absolute and unwavering desire to fight at all costs. Fighters fight. They are relentless in their efforts. They rise to the occasion. They are single-minded in their focus on beating back whatever threatens their body and their lives. WARNING: The fighter costume may make it difficult to acknowledge anything other than pure victory. Intimacy, vulnerability, and connection are often pushed aside because of an all-consuming focus on the battle itself. Fighting constantly, without rest or contemplation, sometimes means that this mask inhibits wearers from occasionally letting down their fists and gently opening themselves up to others in the midst of the struggle.
- The Silencer Mask—This mask is never the best seller, but it’s a constant staple on the shelves. People who wear this costume don’t share what is going on with others. They try desperately to navigate life’s interruptions without anyone noticing how suffering may be affecting their life. They exert incredible energy attempting to maintain regular routines in hopes of protecting themselves from unwanted attention. They don’t want their friends to know what’s going on because they don’t feel comfortable accepting help. They don’t want people at work to know what’s gong on in their lives for fear such disclosures may be used against them. WARNING: Wearers of this mask may delude themselves into believing it’s best if others don’t know because they, alone, can deal with the situation. Instead of allowing vulnerability to bring them closer to others, their silence prevents them from benefitting from others’ support, understanding, and connection.
In the midst of struggle, we all wear masks. The wearing of masks doesn’t necessarily mean we are inauthentic. It simply recognizes that we choose to show parts of ourselves to others while hiding other truths. This Halloween season, pay special attention to what mask you most often wear and what it might prevent you from doing, saying, and becoming.
Is there someone you can feel comfortable enough with to momentarily take off your array of masks? Is there someone you know that will understand why you wear the masks you do but will also invite you to be more than the one-dimensional mask you put on when interacting with others?
During this Halloween season, when we open our doors to those who come wearing masks, think about opening yourself to someone you care about and allow them to get a glimpse of you, temporarily unmasked, just long enough to know that you are always more than the mask you lead with.
It’s the question we never practice answering. It comes to us as if it were a surprise, even though it shouldn’t be.
“What was your mom like?”
“Tell me about your brother?”
“I didn’t know you had another child, who is that in the picture?”
“Mommy, what was daddy like?”
All of us live with those we love while also living in absence of those we love. We all are mourning someone. Every time my children ask me this question—“What was your mom like?”—the answer I give seems incomplete, inadequate, failing, dismal, and utterly false. It’s not that I don’t try, but the person they see in pictures, frozen in time in a now outdated wardrobe, and in long-gone fashion, well…that’s the past. A person in a picture is stuck in time while everyone else around them is featured in 3-D—talking, posting, calling, responding, texting, tweeting, hugging.
It’s not our fault, though. We don’t practice talking about people who are no longer with us, physically. Talking about absence—how do we do that? Our language betrays us. We get stuck between worlds when we try to talk about someone who is no longer physically with us. We are trapped by language that doesn’t allow us to communicate how someone in a picture is not confined to the past tense, but very much still affects us now.
Here’s what I’ve learned from trying to bring to life a loved one who is no longer physically present.
- Don’t feel compelled to represent. This is where we usually start. We try to explain by attempting to fully capture the essence of the person we love. These attempts at representing the whole person usually begin and end with is/was statements. “She was…” “He was . . .” But representations almost always end in frustration. There’s no way to fully represent the people who are around us on a daily basis, so why would we think we can represent in full the person we love who’s not with us? We want to, that’s why. We so desperately want others to know how this person has influenced our lives, but our desire to completely represent is often a recipe for deep frustration.
- Use contexts as invitation and source of explanations. Start with specifics, not generalities. Contexts invite memories, and memories can be best communicated when we provide examples. “Halloween reminds me of a story my best friend used to tell me when we were your age….You never met him but . . . ” “You know, I used to have trouble with spelling too. My mom helped me by doing this one exercise. Want to try it?” Audiences respond to particulars, not totalizing comments. Start small. Start specific. And then watch as the thread of specific stitches begins to shape a tapestry drawn forth in everyday moments of conversation and activity, not in grand, formal declarations.
- Highlight personal connections. Instead of saying, “My mom was….”, try starting with, “My mom and I shared a love for writing and creating. We often felt more comfortable expressing ourselves on a keyboard than we did in person. I always knew she understood that part of me.” Talking about what a loved one means to you will help you better explain why your memories are important rather than focusing your efforts on describing your loved one in generic, abstract terms. Memories aren’t monuments—insert yourself into your memories and allow others to see you in connection to your loved one so your words and pictures and stories will make sense. In the process, highlighting our relationship to our memories will also help others better understand us and what is important in our lives.
- How you talk about your loved one will change as you change. Fresh absence begets different memories than an absence of 15 years. You are changing and so too will your choices about what you believe is important to share. Find comfort in knowing that your loved one is still evolving in your mind as your unfolding experiences shape what you highlight to others. We are complicated and contradictory, it’s okay for our memories and the way we talk about our loved ones to be complex and dynamic too. For example, when talking to a spouse, you’ll highlight specific aspects of your loved one differently than if you were talking to a friend. This is okay. No, actually, this is very good. Memories make sense when we adjust what we share in response to the particular audiences we’re talking to.
- When you feel compelled to explain your loved one, the pressure to find the right words is nearly unbearable. There are no right words. I know, you’re going to search for them anyway. We all think they are out there if we just craft them in the right ways. Words often betray us, especially when we care so deeply about what we are trying to communicate. It’s the everyday aspects of our loved one, not the big public accomplishments, that we often want others to most appreciate because they mean the most to us—their sarcasm that we so cherished, the sound of their distinct laugh, the tenor of their voice when they were passionately talking about a matter close to them, the special way they were able to make us feel like everything was going to be okay without having to say a word, the comfort of their loving hugs. Sometimes, these deep memories aren’t meant to be explained in ways others will understand. They are for us, and that’s okay. Some memories are ours and ours alone. Not all memories need to be translated for others to understand.
What if I told you that when faced with the inevitable but impossible question—Tell me about your loved one?—the response has very little to do with what you have to say? You are the most enduring legacy of your loved one. You are evidence of their imprint that unfolds not in the public moments of life, but in the quiet moments of your everyday life, constantly revealing itself in how you treat others. In sharing a laugh. In kind words to another. In your irreverence. In your fearlessness. In your fear. Sometimes, the best answer to this question is simply an awareness that your loved one was too many things to summarize . . . but in knowing you, they are one step closer to knowing your loved one.
At some point, everyone utters the phrase—I’m not where I thought I’d be—privately to themselves. Some of us, however, are more vulnerable than others, especially when our expectations are frustrated by challenges in life that we never thought, expected, or planned.
Unfortunately, our questions can often be mistaken for accusations because we repeat them to ourselves so many times that we can’t help but think they are true. So the next time you get momentarily stuck in the quicksand of—I’m not where I thought I’d be—you might want to keep in mind the following:
- Where we are now is never where we thought we’d be—ever! When things are going well, we don’t reflect. We keep moving, and going, and pushing. Reflection and contemplation happen when our lives become interrupted, when what we thought was going to occur—doesn’t, or when what we never planned to happen—happens.
- The past is never a good predictor of our present. The trajectory of our expectations is always the same—they are straight and unchanging lines defined by their end points, not by process. Our dreams don’t account for the need to turn, swerve, speed up, slow down, pause, turn around, let alone change directions. But dreams of the future are powerful because they are seemingly so clearly defined, real in their gravitational pull toward some desired destination. Unfortunately, we can easily become lost and disoriented when what we thought was going to happen doesn’t correspond or make sense given our everyday challenges.
- For all of us whose lives have at some point been interrupted, there is one undeniable fact: we aren’t who we used to be. Our past dreams often delude us into thinking they are timeless and timely when they are not. Our dreams almost never account for the fragility of life, love, care, illness, disappointment, and rejection. Too often, our dreams can’t keep up with who we’ve become. Dreams are like milk, they go sour and make us sick when they are past their due date, though we rarely throw out our dreams when they expire amidst new realities, changes, opportunities, and insights.
- Dreams can be incredibly deceptive because they often omit the messiness and tensions and responsibilities that characterize our everyday relationships. Most people’s dreams aren’t about becoming closer to another human being when it’s not easy. Most people don’t dream of loving someone when it’s not easy. Who dreams of what life will be like when we love someone who becomes ill? Who dreams of managing the challenges of work and life and children? Who dreams of being depressed? Who dreams of struggle? Who dreams of bodily interruptions? But we’re not most people anymore, are we?
When you torment yourself with feelings of failure and disappointment because you’re not where you thought you’d be, begin to edit your past expectations. Change the script of your dreams made years ago in a galaxy unconnected from the world you inhabit now. Start with where you are, here and now. Use your current situation as a starting point, not as an ending point. You are changing, so should your dreams. The next time you question yourself because you’re not where you thought you’d be, remind yourself that the where may not be nearly as important as the person you are becoming.
Our bodies and expectations don’t always follow the script we wrote for ourselves long ago.
After overcoming the initial shock and dismay of coming to terms with my mother’s brain cancer diagnosis, everyone was on the same page. Everyone understands brain cancer. Or, scratch that, everyone understands the kinds of responses that brain cancer requires. Chemotherapy. Radiation. Rehabilitation. In the midst of the fight, it all makes sense…
You can beat this.
She has so much to live for.
Never, ever give up.
Stand up to the brain cancer.
Know that you’re not alone. We’re praying, thinking, rooting for your mom. For your entire family.
But then, something happens that turns everything upside down and inside out. The script goes wrong. The story goes in a direction no one even thought possible. The story, my mom’s story, your loved one’s story, your story, betrays you. When the good fight doesn’t lead to a clear victory, when cancer is not overcome, when a condition is chronic, not temporary, when surgery does not work, when an illness is never diagnosed, then our story becomes a kind of kryptonite that keeps people away when we need them most.
You mean there’s nothing more the doctor can do? Oh…
I don’t understand. No more treatments? But…
So this is something you’re going to have to live with?
You mean it’s not going to get any better?
They used to cheer and support when there was a clear goal, timeline, and expectation that you would be able to return to your former self. They used to visit and want to be near you because by supporting you, they were supporting the cause itself, and reminding themselves that fighting, alone, will suffice. They used to know exactly what to say:
Your pain is worth it.
The struggle has a purpose.
Don’t give up. Your family needs you.
Just think of the future. Keep going.
You can do this. You have to do this.
When life is interrupted, it’s like someone takes a script everyone had agreed on, crosses out all of your lines, your loved one’s lines, your friend’s lines, and your co-worker’s lines. It’s more intimidating and overwhelming than a blank page, isn’t it? But it’s not blank. It’s an award-winning script that’s now all crossed out—reminding you and others of what is no longer possible. It’s not that we get to start over with a new script—no, you and me, whatever our ages, wherever we are in life—we have to rewrite our lives and our relationships without any preparation or practice. What do we say? How do we respond to what others say or don’t say? How do we connect? How can we make sense of it all when we’re living off a script so few recognize?
Welcome back to the Unprepared Caregiver, a community where we find connection in living off script when our lives become interrupted, and we’re forced to reimagine ourselves, our relationships, and everything we once knew to be true.
What’s your title? Where did you go to school? Where did you get your training? Who are you connected to on LinkedIn? How many bullet points do you have on your resume? Specialize? Focus? Become an expert at one something in particular? Good advice as we rise up (and away from one another) in our march through occupational life. Resumes are the ways we relate, connect, and navigate the everyday of our occupational worlds. Titles and credentials help us know where we want to be and who we want to meet.
At some point in our lives, however, these very guides will become meaningless. What happens when our credentials make us unprepared to move toward one another?
Unfortunately, the resumes we use in our everyday lives don’t work when we think about the skills, qualities, and characteristics that make informal caregivers so rare (and so comforting). So, if I were to construct an informal caregiver’s resume (and turn the traditional resume upside down in the process), here’s what it would look like . . .
Instead of concerning yourself with where you received your education Harvard, Yale, Princeton, Stanford, or looking at how much education someone has received, M.D., Ph.D., MBA, a caregiver’s resume would be informative only if it told you about someone’s values:
- Who is important to them?
- Who have they listened to without judgment?
- Could others count on this person in times of need?
- Who do they laugh with?
- Who have they cried with?
- Who do they choose to be with, not because of where they want to get to, but because of who they enjoy being in the company of?
Work Experience Life Experiences
This section on a traditional resume seems to make so much sense. What relevant experience does a person have that will make him or her a good candidate for a specific job or industry? Where did she receive her training? And experience? Under whom? What did he do? What can she do?
You’re right, this doesn’t make a whole lot of sense when we’re talking about informal caregivers. Experience for an informal caregiver? None needed. No special qualifications. No advanced training. A management-training program? Not necessary. But what is needed is probably more rare and growing even more scarce by the day—WILLINGNESS.
To care for a loved on in today’s America is an act of courage—by saying ‘yes’ to a loved one you also are saying ‘no’ to other so-called opportunities: Opportunities for advancement. Opportunities to relax. Opportunities to stay in your routine. Opportunities to outsource your care. Opportunities to hide yourself from the reality that we have more to offer our loved ones than an industry skill.
Skills Interpersonal and Relational Openness
On a traditional resume, skills usually advertise to a prospective employer all that you possess that makes you different from others. These almost always focus on individual skills followed by powerful verbs.
For a caregiver’s resume, skills are also vital. But the skills of difference that you highlight in your work life don’t fit here. Informal caregiver capacities should almost always focus on relational skills that situate the individual with others.
- Is this person present around others? Do they always have to be the center of attention?
- Does this person use the “we” to describe his or her life, or are they stuck in the “I”?
- Are you willing to be with and near another human being when association with that person won’t provide any special attention or privileges?
- Do you have the skill to walk into another’s life when most others are walking out the door?
- Do you have the skill to find life and laughter and hope when most others dismiss the illness experiences as only depressing, sad, something to be celebrated but from afar?
Availability Always and Everywhere
For most resumes, this is the section where you indicate when you can start or when you will be done with your current job so you can be ready for the next opportunity. Or when you are willing to work. Days? Nights? Weekends? Part or full-time?
Yeah, I think you know where I’m going with this. For a caregiver’s resume, availability is not something we come up with. Rather, the need for care compels us.
- For an informal caregiver, the question isn’t when we are available, it’s when does another need us? And it’s not something that we agree upon in advance. It will change depending on the type of needs (acute, chronic, terminal) of our loved one.
- Availability means being willing to know that care can’t be contained as something we do or give or think about in the morning or the evening. It infiltrates. It becomes a way of being at work, with others, when absent, when we’re far away, or when we’re up close.
- Part time? Full time? Always time is more like it.
Honors and Leadership Courage
Winning awards and being recognized is so important to your resume’s value because it reminds others that you are doing something well that others acknowledge. Being better than others is the stuff of medals and awards and claps and cheers.
As a caregiver, an honors or leadership category doesn’t quite fit. Caring for someone you love means doing work that few people care about. There is no competition to care for a loved one. No way to compare yourself to others. No way to distinguish yourself as special. No way to highlight how you are better than others. And gold medals? Awards? Close-ups? Slow motion replays of your performance? No, not for caregiving. Not in this culture.
Typical job resumes are important documents but caring for someone you love doesn’t require an interview. It requires something most others don’t believe they can provide: Time, attention, and a willingness to walk toward someone you love when others are walking away. You don’t apply to care for another, more often than not, you’re drafted.
You almost never hear this talked about because most people don’t think much about the caregiver perspective. Don’t get me wrong, most people think your role as a caregiver is incredible, heroic, and admirable. Yet, after acknowledging your role, few people think about what your everyday looks and feels like, and even more, what special challenges you are prone to experience despite your best efforts.
Habit is a caregiver’s best friend. Routinizing your day and the needs of the person you care for is vital to managing the responsibilities of care that do not cease once the sun goes down. As you know, caregiving is not a 9 to 5 job. There is no check in time and no check out time, and no contract indicating when you are “on” and “off.” Something like vacation time is probably beyond your wildest imagination. Scratch that, it’s surely in your imagination but your duties remind you that it might remain in your imagination for quite a while. Because your physical presence is so vital to your role, you are susceptible to ruts. What’s a rut? The dictionary will tell you it’s a “sunken track” but we experience it as something else. You know you are a caregiver in a rut when:
(1) You wake up in the morning exhausted and that feeling of exhaustion stays with you throughout the day.
(2) The days blur together so much so that you don’t know (or don’t care) what day of the week it is as Saturday is the same to you as Tuesday.
(3) Engaging in tasks (e.g., work, projects, paying the bills, planning for the future) that you used to easily begin and complete now exhaust you because there mere thought of them weighs you down. But you carry that mental weight with you all day, hoping that tomorrow, when you wake up in the morning, you’ll have the energy and focus to take care of them. See #1 above why this is such a vicious cycle.
(4) You can’t convince yourself to look forward to anything in particular as your caregiver identity and responsibilities seem to give you little wiggle room to plan beyond the immediate needs of the moment.
If any of these experiences sound familiar, you might be in a rut. Unlike others, however, you probably can’t set off for a vacation to recharge. Caregiving typically doesn’t allow for vacation time as caring for others doesn’t take note of your needs. Going on a vacation is really about changing scenes and breaking habits and making the strange normal again and refreshing the everyday. This is why vacations are so essential. They take us away so we can come back to our everyday ready to take on the everyday tasks of our lives.
So how might we get the same benefits without going on vacation? Here are some ideas that might help you change scenes without the aid of a vacation:
- Call up a friend you haven’t talked to in months. You’ve been busy. Overwhelmed. Time works differently for caregivers. But find (create) an hour and call a friend. Hearing a familiar voice will help you change scenes. It will help you transport yourself into laughter, comfort, kinship that you might not have allowed yourself to experience.
- Take a day trip. For some, this may be impossible. But if you can arrange this, a day trip allows you to change scenes while also providing for the fact that you can return home in the evening. As a caregiver, most of your trips may be within a 20-mile radius—doctors’ offices, grocery store, pharmacist, and physical therapy. If possible, drive beyond this circumference of responsibility to see new scenery. Finding new scenery is essential in helping us break ruts because it forces us to see anew. When we are in a rut, everything looks the same. When we drive somewhere new, everything is different, forcing us to realize that life can be fresh and new.
- Change the way you move. For those of you who can’t take a day trip, changing the way you move might be your best option. Change the way you think about yourself and your situation by walking a different route. Or take some time to pump up your bike tires (no doubt they’ve been flat by lack of use), and ride around your neighborhood. Or sit in a different part of your yard. Force yourself to break a physical habit to make possible seeing yourself and your situation from a different perspective.
- Force yourself to be inspired. I know, I know, forcing yourself to be inspired doesn’t seem to make any sense. But we’re a bit different than most. Most others are inspired in the company of others at work, with friends, on vacation, etc. Since habit and routine are essential to a caregivers’ life, being conscious about inspiration is a must. Order a new book you’ve had on your “to read” list for some time but haven’t gotten around to it. Watch your favorite movie again. Watch a movie you’ve been wanting to see but haven’t given yourself time, nor opportunity, to enjoy.
There’s no cure for getting stuck in the inevitable rut. Unlike most others, we have to be more conscious and deliberate about getting out of our ruts because we often find ourselves isolated and distant from the outside world’s concerns. Finding space to mentally change scenes is vital to the way you think and act and live and care. No one will tell you this is necessary because most don’t know what caregiving looks and feels like on a daily basis. Make the time to give yourself permission to break your rut and see life anew.
There is nothing more magical than beginnings. Remember the anticipation and energy of the beginning of a school year? The rush of energy associated with the first day at a new job? The pure appreciation that accompanies the beginning of a relationship? Beginnings are so alluring because they give us something to look forward to. They also 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. Most caregivers don’t remember when exactly their caregiver duties began. Cargegiving started sometime in the past, we tell ourselves, when we were thrown off guard and rose to respond to a frantic call to help a loved one in need. Amidst the busyness and urgencies of the moment, few caregivers provide themselves the opportunity to revel in the energy of beginnings because the caregiver role 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 the immediate moment.
To help facilitate the creation of beginnings, here are some tips:
(1) Events don’t define beginnings, we do. A quick look at your calendar of caregiver responsibilities might remind you that there is nothing so dramatic or noteworthy that seemingly necessitates a beginning. Wrong! You must define and create a beginning. All beginnings are created and manufactured (yes, even the first day of school is a created event). Don’t wait for your calendar to tell you what is important or worthy of looking forward to—calendars don’t work off a caregiver’s schedule.
(2) Ritualize the beginning. All beginnings are marked by ritual. The first pitch of the new season. The introduction of names on the first day of class. The shopping of clothes for the first day on the job. When you mark your beginning, what will you do on that day or during that experience that will make it different from the countless moments that will seek to crowd it out into just another moment? Will you change your routine? Will you dress differently? Will you make cards to honor the event or experience? Do something to allow this moment to become distinct from the seemingly endless flow of time.
(3) Celebrate the anticipation 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 comes into question.
(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.
(5) Allow the energy associated with experiencing a beginning move you long after the event itself. The energy of embracing your marked beginning will linger long after the experience itself. Don’t inhibit this energy. You deserve this lingering afterglow of lightness to your being. Don’t be rational about it. Don’t squash excitement. Let your beginning free you from the moment. Let it energize you through the challenging moments of the days that follow. Let it free you from your past so you can, ever so briefly, see yourself and your caregiving role through different eyes.
Caregivers, beginnings don’t just happen, they are created. Mark your caregiving experiences. Create spaces in your everyday for an opportunity to see life anew and free yourself from habituated ruts. It is possible. It can happen. Mark your days before they mark you.
As caregivers, hope is not a luxury—it’s a necessity. It’s something we need to keep us going throughout the day in light of the sometimes all-too daunting challenges of the moment. While most of us lean on hope, I want to remind us that hope, at its very core, requires us to be close to the very challenging situations that call forth the need for hope itself.
Too often, we mistake hope for a wish. A wish is something we want to happen. Hope, on the other hand, is an expectation. At first glance, they are remarkably similar but the small differences between the two are quite profound.
When a wish doesn’t come true, what are we left with? Not much. Typically, when a wish isn’t fulfilled, we change our wish. We walk away from the mental image we concocted in our minds. We don’t have to deal with the reality before us. A wish is not tied to the material world of our everyday reality…
When a medical test comes back positive, we could wish away the results. But wishing away the results doesn’t change the reality of the situation.
When someone we care for no longer responds to the sound of our voice, we could wish that she will awaken the next morning with mental clarity. But this wish means that we will close our eyes to the reality before us and await for tomorrow, all the while, neglecting the person in front of us.
When someone we love is in physiological pain, we could wish the pain would go away. But this wish also means denying how the pain our loved one is experiencing might be changing how we can and should relate to the person in front of us.
A wish is about a desire to return ourselves and our loved ones to life as it was once lived—to undo the cancer diagnosis, to remake someone’s physical condition, to bring us back to a time before pain. A wish is a passive act. When we wish, we stand far away from the situation, diagnose the situation, then try to eliminate the “problem” in one fell swoop. All the while, a wish protects us from stepping into the very situation that is so frightening.
Hope, on the other hand, isn’t a solely private act of desire that we conjure in our head. Rather, hope is a social product that is shaped by our experiences with others, in the world, as we attempt to make sense of and respond to the unfolding situations before us.
When a medical test comes back positive, hope won’t take away the results away. Rather, hope orients us differently to our loved one, his doctor, and our own families. Our hope, or our positive expectations, keep us both focused on the challenges of the moment and compels us to keep moving through that moment. It lets others know how we choose to respond. It lets our loved one know that we will not abandon him even though the test result is not the result we had wanted.
When someone we care for no longer responds to the sound of our voice, hope doesn’t mean we deny how our loved one has changed. Rather, hope allows us to respond by continuing to care, continuing to talk to our loved one, and continuing to believe that they feel our presence, even when they may not be able to communicate this reality.
When someone we love is in physiological pain, hope doesn’t mean we give up. Rather, it means we acknowledge the reality of our loved one’s pain, and then respond by doing everything we can to alleviate his suffering.
Wishes call forth certain realities by indulging in denial. Hope, on the other hand, does not delude us into believing that our lives will magically appear different. Hope draws us into the very situations that frighten us and positions us to respond by drawing upon the social resources of deep compassion and acknowledgment.