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. […]read more...
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.
Our notion of loss and grief is remarkably peculiar. Loss is too often conceived as a personal, private matter to be handled, managed, overcome, and endured, alone. Alone, we must live with our grief because public spaces are reserved for joyful occasions and for the perfection of amusement.
No one ever tells us explicitly, but the assumption lurks about—“Go take care of your burden away from us and then re-join us, when you are the way you used to be. When you’re ready to smile. When we don’t have to ask you if everything is okay.” This dominant mindset shouldn’t necessarily be a surprise when public life is about being “presentable” to others. On our drive to work or in advance of meeting others for coffee, we talk ourselves into the right mindset: “Get it together. Wipe away your tears. Put a smile on. Don’t let others know what’s really going on in your life. Erase any resemblance of what you are really feeling.”
It’s as if a NO TRESPASSING sign hangs at the front of the public spaces that we spend most of our time. At work, we fear that others believe grief and loss don’t go with productivity. “What if my boss knew what I was really thinking?” When conversing with acquaintances, we admonish ourselves, “No, grief and loss aren’t topics of conversations to bring up. I don’t want to be a downer.” In these public performances, it is what is not revealed that is most telling. Grief and loss, we believe, must be handled apart from the world we inhabit, the coffee shops we sit at, the office spaces we spend hours of our waking days, and the disclosures we keep to ourselves in the daily banter with our colleagues.
Why the need to perform? Public spaces don’t seemingly allow us to be authentic—they are places that remind us how we should act rather than how we feel. So, we mourn in isolation. We leave our homes ready to be what others expect us to be. The problem is that loss and grief are processes, they’re not destinations. They are unfolding. They aren’t static places. They are in-between spaces—somewhere between here and there. They aren’t permanent, but we withhold because we worry that if we allow others in public to see glimpses of our momentary struggles, they will not forget.
When we get in the habit of performing as if we are not grieving, it’s no surprise that we become even more exhausted. Performances originate out of a desire to appear a particular way to others, but in the process, they often become our reason for exiting stage left by saying no to opportunities to find solace in the sharing of our struggles.
So, we turn away from others. We walk deeper into our own thoughts. We drop out of the mindless joys of everyday life. We retreat to places few others can follow, quarantining ourselves until our public self can be more in line with our private thoughts.
Sometimes, however, we must trespass. Trespass by seeking out those friends, acquaintances, or strangers who will allow you to indulge in acknowledging your grief in the moment. You will know who these people are (and who they should be) because they, unlike others, will let you know that what you feel in the moment will not define you permanently.
Anxiety is a challenge most of us experience. Caregivers, in particular, are prone to anxiety because we are reminded everyday that life often feels just beyond our control. Anxiety can be experienced in all forms and shapes, but solitary anxiety is an especially virulent strain that few people talk about but most of us experience.
Solitary anxiety isn’t just about feeling alone. Solitary anxiety is what happens when we convince ourselves that we would rather choose to be alone than be in the company of others. Those of us who experience solitary anxiety usually come up with some remarkably creative reasons for maintaining faithful to ourselves and rejecting the company of others:
- “I just don’t feel like being with others right now. I’m not in the right mood.”
- “I don’t have the energy to answer the questions I know are coming. They wouldn’t understand my responses anyway.”
- “I don’t want to be a downer for others. I’ll just do others a favor and stay home.”
- “I’m not the same person I used to be. My friends will expect me to be the person I used to be. I don’t want to have to tell them how I’ve changed.”
Let’s face it, at times, some of these reasons sound remarkably persuasive. In fact, many of these self-talk statements may be accurate. But this is exactly why solitary anxiety is so alluring—it deludes us into believing that we can and should isolate ourselves to protect ourselves. Here’s the catch, though—this kind of anxiety gains strength when we say no to social opportunities. Solitary anxiety is most likely to fade into the background when we are in the company of others. When we say no to our own voice and begin listening to others, solitary anxiety is drowned out, at least temporarily, because:
- Hearing others’ voices mutes our own private voice that, left alone, is often mistaken for the truth.
- Being around others allows us to momentarily take a vacation from ourselves. Too much of anything, especially ourselves, isn’t a good thing.
- Laughter doesn’t usually happen when we are by ourselves. Yes, we may chuckle a bit, but deep laughter is a social phenomenon that can best be experienced when you’re with others, living a shared moment that only those present can experience.
- Peace (at least temporary peace) doesn’t happen in silence. There is a time and place for silence but peace also can come about when movement and voice and thought are mixed together with others, jumbled up, reshaped, reshuffled, so that when we do return to ourselves, our state of mind is different than when it was kept apart from others.
Every once in a while, silence your own solitary anxiety by allowing yourself (and yes, persuading yourself) to join with others to help you return to yourself more ready to know that the best protection from yourself is the company of others.
Yes, out of control is the phrase most people use (okay, yell out in desperation) to describe their lives only when their multi-tasking skills are pushed to their limits. If you listen beyond the phrase itself, however, it’s what is not said that is so remarkable. Most people feel like their lives are out totally in their control most of their waking hours. Simply put, people who momentary experience life as being in their control flow downstream with the full force of habit pushing them through life. Over time, it’s hard not to be dulled into believing that life flows constantly, that the waters of life are smooth and unchanging, easily navigated and predictable, the same today as they were yesterday.
For caregivers, however, feeling out of control is often the normal state of affairs because the act of caregiving and the mindset necessary for caring for another means that you are constantly reminded that the world you once knew no longer corresponds to your everyday realities. Caregivers who are constantly reminded that their lives feel out of their control, can’t help but believe…
- Doing isn’t nearly as important as being as care can’t always be reduced to a set of tasks. Caregiving involves tasks, no doubt, but care can never be fully represented in an Outlook Calendar. What do you put down? How do you explain your care to others? When does your care begin and end?
- Care can’t be objectively measured, timed, and evaluated. Nothing about caregiving is objective. It’s nearly impossible to place a value on your time and on the gifts you do receive from being with and near a person you love. Nor can care be talked about in the language of efficiency. Talking about care using the language of efficiency is as silly as trying to figure out how to love someone more efficiently—it just doesn’t make sense. And perhaps most importantly, your care for another is so very challenging to explain to others. What can care be compared to that accurately and fully captures the fact you both want to do it and you don’t want to do it, you wouldn’t trade your position for anyone else’s but, at times, you wish someone else would relieve you of the exhaustion that accompanies going to sleep every night worrying about what can’t be done.
Caregivers share one unstated but earned assumption of everyday life with other caregivers: Life is often experienced as if it is just beyond our control. Doctor’s appointments, expectations, hopes, plans, time, love, and work are constantly experienced anew, each day, as if yesterday was unrelated to the day before, requiring constant and detailed attention to the very aspects of living that so many others forget even exist.
When faced with these realities, we, as caregivers, however, do get to practice something most others don’t or can’t know. When we stop obsessing about being in control, the fragility of now requires us to be completely present with another for all we know for sure is that we have the moment before us. Everything else, well, it may be beyond our control.
Right now, nearly 29% of the population helps provide care for chronically ill or disabled family members or friends. In fact, if you’re one of the 65 million people who currently provides care for a loved one, you know exactly what I’m talking about (National Alliance for Caregiving). Too often, however, some think that caregiving is someone’s private business. Something that has nothing to do with your work. Something that shouldn’t be talked about when you’re at work. Something that doesn’t spillover into your work life. Unfortunately, they’re wrong.
As a communication professor who conducts research on working caregivers, most people initially tell me, “No, not me. I’m not a caregiver.” However, only minutes later, they usually correct themselves and acknowledge that they too are caregivers even though they don’t think of themselves as a caregiver. Most caregivers are just like you and me—loved ones who provide, on average, 20 hours a week of unpaid care for someone in their own home—a mother, father, spouse, child, or grandparent.
“Don’t people choose to become a caregiver? Aren’t some people just better at it?”
If your wife is diagnosed with breast cancer, you won’t tell her you’re not a caregiver. If your child needs extra care, you won’t inform him that you’re not a caregiver. If your mother is ill, you don’t say you work full time so you can’t help. Too often, we tell ourselves and others that we aren’t caregivers because we feel caregivers have special training and fancy titles after their names. In reality, few people choose to be an informal caregiver—it’s simply what happens when you are drafted to care for those you love while also trying to negotiate the countless other responsibilities in your life.
“But really, I’m not a caregiver now, and I don’t see myself becoming one anytime soon.”
If you aren’t a caregiver now, the odds are that you will become one. By 2020, approximately 157 million Americans, nearly half of the U.S. population, will live with a chronic illness (Dpt. of Health and Human Services). In other words, care isn’t something that only some people will do, it’s something every one of us will need to provide at some point during our working lives. Caregiving is quickly becoming a rite of passage in American life.
“Yeah, but I’m not even the caregiving type. Isn’t that a women’s problem?”
Caregiving isn’t a women’s problem or a man’s problem—it’s an organizational challenge, especially when nearly 70% of working caregivers experience work-related challenges as a result of their dual working-caregiver roles (AARP).
“Okay, but I don’t know anyone whom I work with who is a working-caregiver.”
Just because you don’t know if the person working next to you is a working caregiver doesn’t meant he isn’t a working caregiver. 28% of employees believe that their employer is unaware of their working-caregiver roles and challenges (Gallup). Right now, the person you work with 40 plus hours a week and the person you consider not only a work colleague but a friend, might be experiencing working-caregiver challenges and you might not know because they may be asking themselves:
- How can I share my dual role responsibilities at work without showing weakness and vulnerability?
- How can I share caregiving challenges when I don’t want my peers at work to think my productivity and performance will suffer?
- How much should I disclose and to whom should I disclose so people at work know what I’m going through right now?
“Okay, even if I did know, it’s really none of my business, is it?”
Our working caregiving challenges can’t be neatly tucked away into discrete boundaries. Spillover happens in all of our lives, from work to home and from home to work. Whether we want to acknowledge it or not, what happens outside our organizations affects what happens inside our organizations. The reality is that how you feel about the people you work with inevitably affects how you think about your organization and how you think about your organization is always impacted by your relationships at work. If others at work don’t know or appear not to care about what you’re experiencing, how you think about your work and your company can’t help but be affected.
Too many of us believe we are either a caregiver or not. In the 21st century, categories like working caregiver make us think that we’re either working or not working, caregiving or not caregiving. Unfortunately, these either-or labels don’t reflect the changing landscape of the 21st century that requires us to be simultaneously employees and caregivers, caring and working, working and caring.
Do you want to know more about how and in what ways people like you are attempting to cope with the challenges of dual roles? As employers, are you interested in learning more about the challenges your employees are experiencing so you can enhance employee identification and increase morale? If so, please register to join us on September 12, 20013 for the Work-Life Forum (http://www.queens.edu/work-life) at Queens University of Charlotte.
Inevitably you’ve been asked the question: ‘What Do You Do?’ Some time ago, this seemed like an easy question to answer. You went somewhere every day to work, you engaged in some kind of behavior or activity every day, and then, each evening, you came home to something and someone awaiting your return. What you once did seemingly fit nicely into a very clear and simple sentence: ‘I am a ….’
But those days are gone. Now, the question of ‘What Do You Do?’ is much more complicated. As a caregiver, you don’t carry a briefcase to work. Now, your working days aren’t only spent somewhere else, away from the home. And you don’t come home from work to relax or recharge. No, now, your home life is as challenging and exhausting as anything done at work.
Work is now inside your home. Of course, you would never call caregiving work because you are caring for someone you love. And people who care aren’t supposed to place ‘care’ and ‘work’ next to one another in a sentence. But caregiving is a preoccupation that totally disrespects sane working hours, union rules, salary increases, benefits, vacation time, or any other perk you can think of.
Once you see yourself as a caregiver, the question of ‘What Do You Do?’ is totally deceptive. Saying, ‘I am a caregiver’ isn’t the whole truth. It just isn’t. Yes, you are a caregiver and you are also something else too. No one has the luxury of being only a caregiver. You are a caregiver and something else. For some of us, that something else is a formal job we go to every day that oftentimes takes us far away from who we want to care for. But we have to go regardless. For some of us, that something else is an informal set of obligations and duties that never stop piling up.
Simply put, as a caregiver, you never can be carefree about your caregiving—for every person you care for, there is also a complex and sometimes overwhelming series of obligations, worries, deadlines, challenges, and to-dos that never allows you to say, “I’m specializing in caregiving.” No one specializes in caregiving—we would love to in an ideal world, but we don’t live in an ideal world because we live in a world with bills, and contracts, and expectations, and mortgage payments, and so on and so on.
Some people are lucky. They can claim a clean, one-sentence response to the inevitable question: ‘What Do You Do?’ Not being able to easily answer this question is partly what makes your life so complicated and challenging. The real question people should ask caregivers like yourself isn’t ‘What Do You Do?’ but ‘What Do You NOT Do?’
The one malady that affects all caregivers is stress. As caregivers, we have so much to stress about: our loved ones, our ability (or inability) to spend time with the people we care for, managing our jobs while caring, attempting to balance our families and our caregiver duties, and oh yeah, trying to hold onto ourselves in the midst of our unyielding 24-hour a day care.
As caregivers, our stressors are different than most others. But before we can learn how to reduce caregiver stress, we need to pause to think about why and how stress affects us so differently than most others.
(1) Stress is most dangerous when we believe it is permanent. When we believe our caregiving duties will never end, when we believe that we or someone we love will always suffer, stress becomes debilitating because it changes us. Not only do we withdraw into a world of our own making (see #3 below), we can no longer respond appropriately to the people around us. We hear the whispers of stress, “you can’t do this,” not the sounds of the person we are near. We feel the grip of doubt, not the touch of reassurance of the person we sleep next to. And we blind ourselves to the glare of uncertainties in our head, not the sight of what is present before us.
(2) Caregiver stress has no past. Think about it, do you still stress about something that happened a year ago? I didn’t think so. Are you still stressing about the conversation you had with your loved one last Friday? Stressing about the hospital visit that occurred months ago? Probably not. Stress has no past because it is so effective at focusing all of our attention on future uncertainties. We can even laugh at past stresses—“I can’t believe I was worried about . . . ,” but stress never, ever, has a sense of humor about the future. Stress convinces us that the future is always serious and worthy of fretting over. Caregiver stress holds our attention on the future and won’t let go of us, holding our pleasant and comforting memories of the past hostage and out of sight.
(3) Stress turns us away from others. Stress isn’t like fear. When we fear something, like watching a horror movie, we want to spend time in the company of others because we believe we will be okay simply because we aren’t alone. Stress, on the other hand, tricks us into believing that we can best “solve” stress alone, behind closed doors, in the privacy of our own thoughts. Stress is at its most dangerous when it convinces us to turn away from others by telling ourselves, “Others wouldn’t get it,” and “I’m different than others” and “I don’t want to burden others with my problems.” When this happens, stress not only changes how we think, it pushes people away from us.
(4) Stress changes shape the more attention we give it. Like anything, the more attention we give stress, the more it grows. Like a Chia Pet, stress grows with the right nutrients of isolation and mental attention. Stress becomes more vivid the more we devote our thoughts to its hallucinating facade that makes us believe we can’t (and shouldn’t) turn our eyes and thoughts away from it. Eventually, we convince ourselves, especially when we are alone (see #3 above), that the world we have mapped in our heads will unfold just as we imagine. And the more we talk with ourselves, the less able we are to prevent ourselves from mapping our lives according to the compass of what might happen rather than the compass of what is happening.
Stress is a constant for caregivers. We learn to live under the influence of stress while we care for those we love—whether in person or thousands of miles away. No one can take away the events or experiences of our lives that induce stress, but we can try to minimize our participation in exacerbating caregiver stress. Look for next week’s Unprepared Caregiver blog for specific strategies to help reduce your caregiver inspired stress.