Loss and Grief—No Trespassing (in Public)

2014 April 15
by Dr. Zachary White

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.

 

 

 

 

The Anxiety Problem

2014 January 26
by Dr. Zachary White

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.

 

Out of Control?

2013 November 13

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.

 

Why Should We Care? Working Caregivers in the 21st Century

2013 August 2

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.

‘What Do You (NOT) Do?’

2012 November 5
by Dr. Zachary White

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?’

What You Need to Know About Caregiver Stress . . .

2012 March 27

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.

Look Forward To Something or Else . . .

2012 March 11

The favorite pastime in America isn’t basketball, football, or baseball.  The favorite pastime in America is looking forward. Everyone looks ahead to something or someone.  A vacation. A graduation. A holiday. A three-day weekend. An end to 12-hour workdays.  The end of winter. The beginning of spring. The premiere of your favorite television show. The start of a new job.  And so on, and so on, and so on.

The only people in America who don’t look ahead are people like you and me who care or have cared for someone who isn’t getting better. It’s not that caregivers like you and me don’t want to look ahead. We just don’t think we can.  We believe looking ahead is reserved for people who take the present for granted.  People who have no reason to question that tomorrow will be the same as today.

So it’s not surprise that when most people look forward, they gaze months and even years into the future whereas you and me, our hopes dare not travel beyond the moment. We don’t allow ourselves to look ahead because we mistakenly believe that doing so will only depress us.

But we are wrong. We must create something to look forward to in order to help us maintain our caregiving duties.  As caregivers, we will experience burnout. It’s an occupational hazard of our love for another human being.  Experiencing burnout is not a matter of if, simply a matter of when. But we can reduce the intensity of caregiver burnout if we allow ourselves the luxury of looking forward. I’m not talking about looking forward in the way other people look forward to vacations or travels around the world. No, our looking forward has to be different even though it serves a similar purpose—helping us through the rough patches of the every day when our bodies are exhausted, our hearts are heavy, and our will is seemingly depleted.

In order to reduce the intensity of caregiver burnout, here are five rules of looking forward every caregiver should keep in mind:

(1)  Looking forward should extend no more than 24 hours into the future.  As caregivers, we know so much about the fragility of life that to look forward to anything beyond 24 hours would be too much for us to believe.

(2)  You should not go more than 24 hours without looking forward to something or someone.  More than most, we need motivation to endure the 24-hour a day cycle of caregiving. We need to mark our time, not simply by the passing of a calendar day but by the enjoyment of a tangible goal or reward.

(3)  Look forward to the small stuff. This may be the most difficult rule to follow. We’ve been trained our entire lives to believe that we should only look forward to big things: weddings, birthdays, holidays, family reunions, etc. Cross those thoughts out of your mind. As a caregiver, you have to constantly remind yourself that the small stuff is worthy of looking forward to, like watching the sunset, or taking a long shower, or going for a run, or calling a friend, or watching your favorite television show, or getting a hair cut, etc.

(4)  Mark your small stuff in your calendar. Now. Yes, I mean physically type it in your phone or mark it in your daily calendar. Be as specific as you can. Ambiguity is your enemy.  Mark your small stuff in your calendar with the very same details you would when marking anything else in your calendar: the amount of time necessary to fulfill your small-stuff task, where, with whom, etc.  If you don’t mark it in your calendar, it won’t exist.

(5)  Make it sacred. Stop treating your own needs as if they are optional yet treating others’ needs as necessary. Our needs are as real as others.  I know, this is much easier said than done.   As caregivers, the small-stuff that we look forward to must be treated as sacred or we will deny ourselves the opportunity to experience these often overlooked but essential moments of joy.

A friendly reminder to us all, if we deny ourselves the opportunity to indulge in the small stuff we look forward to, then we will be less able to give of ourselves to the very person we care for. Yes, I know we all know this, but I also know that few of us truly take this to heart. Your small stuff is sacred. Don’t minimize it when talking to others or when talking to yourself.

The Forgotten Art of Communication

2012 January 23

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.

You Need Recognition Too!

2011 October 14

It’s one of those experiences that will happen, no matter how much we don’t want it to occur or how much we think it won’t happen to us. Even though it’s seldom talked about, anyone who gives care to another eventually experiences burnout. Burnout is the inescapable side effect of caring for another who is ill and won’t necessarily recover. One reason why we, as caregivers, are so prone to experiencing burnout is because of the 24-hour, 7-day a week cycle of care that too often unfolds without a sense of accomplishment to mark one day from the next, one week from the next, let alone one hour from the next.

In almost every other aspect of our lives, we give ourselves the luxury of having measurable goals of daily accomplishment and definable objectives.  Marking work goals and accomplishments allows people to make sense of their day —“I did great today” or “Wow, I really worked hard today” or “I’m almost done with the project” or “It sure is nice to know that I can cross that off my list now that it’s completed.”

Having definable goals and objectives also motivates us. It pushes us to get up extra early or stay later at work. Goals and measures also help us pace ourselves. We tell ourselves, if I can only get through this day and fulfill today’s objectives, then I know that I can take a deep breath and pat myself on the back for a job well done.

So why is it that as caregivers, we don’t allow ourselves the benefit of acknowledging our daily accomplishments?  We rarely allow ourselves to talk or think in terms of tangible goals because we convince ourselves that having goals and measures of accomplishment would seem so strange to outsiders.  “How could you ever think of goals”, most people would say, “when your loved one isn’t going to recover?”  “How can you have any measure of your performance when care can’t be measured—it’s just something you do?” “How can you have a goal when your care won’t make your loved one any better?” “How can you reward yourself for your work when your loved one is still ill?”

But what these people fail to realize is that someone who cares for another without goals will inevitably feel worn out if they feel like their unending, daily efforts are meaningless. And anyone who feels like their efforts are unworthy of acknowledgement will inevitably feel more exhausted, have less patience, be more prone to depression, and be less likely to spend time in the company of others, let alone engage in social activities that might recharge them.

As caregivers, if we don’t give ourselves permission to mark our daily accomplishments, then we are like runners who run endlessly, without mile markers, with no watch to pace our efforts and energy, and no destination to propel our bodies forward even when we feel  like stopping.

You’re right, caregiving is different than most jobs.  And yes, you’re right, there is no objective measure that will let us close our eyes at night knowing with complete confidence that we “did a good job.” And no, unfortunately (and tragically) few people will tell us that we are doing a good job because care is too often thought of as something that is private—something to be done behind closed doors that is not talked about in public. Caregiving is something that saints do, people tell us. Caregiving is something that some people are simply better at than others, others remind us. Caregiving is just something that you do when you love someone, we remind ourselves.

But they are wrong. And we are wrong too. We need to measure our daily caregiving accomplishments. We need to reward ourselves for what we do from one day to the next, from one hour to the next, that no one else will (can) notice. We don’t need to recognize ourselves to simply pat ourselves on the back. No, we need to recognize our efforts and our momentary triumphs because if we don’t, we are leading ourselves down the road to burnout. And when we feel burned out, we can’t care for another, let alone for ourselves.

Care and physical exhaustion are synonymous, but sometimes, our thoughts can make us even more exhausted by deluding us into believing that the care we give in the darkness of the night and in the privacy of our homes isn’t worthy of recognition. It is. It should be. It can be. It must be.

Pain and (Caregiver) Suffering

2011 August 31

Pain is a scary word.  We all fear pain. Pain hurts. It’s physical. It throbs. It stings. It blurs the mind and makes it so that we can’t help ourselves from focusing on anything else but what ails us.  Suffering hurts too. But suffering isn’t the same as pain.  Suffering may be physical but it hurts beyond the body.  Suffering affects how we think and what we expect and how we feel.

Caregiver suffering isn’t often discussed because most medical dramas and media attention focus on the patient, not the caregiver.  It wouldn’t matter anyway. Caregiver suffering can’t be seen by a camera. It’s beyond the lens, defying observation and explanation. Caregiver suffering means having to come to grips with knowing that:

  • There is no suffering scale from which to measure what you are enduring because what you are experiencing isn’t objective—it’s very personal.
  • You can’t make your feelings of helplessness disappear.
  • What you are experiencing as a caregiver can never be fully understood by outsiders, even if you knew how to communicate what you were feeling and experiencing on a daily basis.
  • The person you care for is not the same person you remember.
  • The person you love is experiencing something that you can’t necessarily take away—even when you would give almost anything to do so.
  • No one will walk through the door and tell you that life will return to normal.
  • You can’t even remember what your life was like before you were a caregiver

No one can cure suffering. No one can make it go away. It’s a mixture of uncertainty and love and regret and anticipation and tenderness and dread. It simply defies comprehension and explanation.

But the very deep vulnerability that brings us to tears at a second’s notice also turns our attention away from the future and back from the past, into the unfolding moment. It’s in the midst of suffering we know without a doubt that we need one another.

Even though suffering is an intensely private experience, we know it retreats when we make human contact with another.  When we hear the voice of a loved one. When we feel the touch of another’s hand. And when another’s familiar perfume or cologne washes over us in their presence.  It is true that our care for another makes us vulnerable to suffering. But it’s even more true that what makes you so very special is that you care even in the midst of suffering.

The Myths of ‘Giving’ Care

2011 August 8

Care is one of the most revered social gifts that we can give others. To give care means to comfort another. To give someone peace of mind. A peace that allows someone to close his or her eyes and rest, knowing that when they awaken, they will not be alone. That they are loved. Considered. And worthy of sacrifice.

Although care is so precious and seemingly self-explanatory, most believe that care is so common that it merits no further explanation.  I disagree. Because care is so vital to our well being and the well being of those we love, it’s important we dispel harmful myths of care that might get in the way of our authentic and sustainable care.

  • Myth #1: Care means cure. Hospice understands how we often confuse these two issues that it’s very mission, “care, not cure” makes this important distinction. Care doesn’t necessarily mean someone will be cured. Care can restore a relationship, it can make someone feel better, it can bring you closer to another human being, it can inject purpose into everyday life, and it can even improve someone’s health. But to reduce care to a cure means that care is reduced to an outcome. Care is a commitment to another human being despite or in spite of what will happen. Care is a response to moments between people, not end results.
  • Myth #2: Care can be reduced to an act. Acts of care like going to the grocery store, mowing the lawn, and picking up much-needed medication can be easily observed by others.  But care can’t be reduced to acts of service. Care doesn’t cease once you take your loved one to a doctor or sit by their bedside for hours on end. Care is a way of being in the world that involves acts of service, but it begins way before the acts of service can be seen by others and lingers long after you get groceries or clean the house for your love done.  Deep care can’t be easily observed nor easily communicated to outsiders. It happens in the silent spaces between you and your loved one. It imprints itself on you. It changes you. It changes your relationship with your loved one. And it changes how you relate to others.
  • Myth #3: Care can be turned off. Care can’t be compartmentalized. You can’t go “do care” and then leave, like going to a gym to work out. It follows you home. It stays with you all day. And it may even keep you up all night.  When you get close enough to another to truly care, you will see things others are unable or unwilling to see. You will be close enough to hear the needs of your loved one that others may refuse to hear. You may find yourself exhausted morning and night, unable to point to a specific reason why you aren’t acting “like yourself.”  Care stays with you as you drive to the airport after a visit with your loved one, it is next to you as you think about your loved one when you are thousands of miles away, and yes, it goes with you to work as you paste on your smile to others at work when someone asks, “how are you?”
  • Myth #4: Care can accomplish anything. This part of care is almost never discussed. But those who truly care for another feel the boundaries of their care in profound ways that most others don’t. When you hang up the phone, thousands of miles removed from a loved one, you feel more helpless and alone than before you called. When you intimately care for another, you too, feel pain and suffering. Not physical suffering as much as the suffering that comes from knowing that you can’t necessarily do anything to make it all better. You can’t necessarily make another’s pain disappear. You can’t necessarily make another’s sadness evaporate. And you can’t necessarily make everything like it used to be. Yet, despite these limits, you know that authentic care happens when you focus on what happens between you and your loved one, especially when everyone else in the world seems not to be paying attention. That’s care.

“I Need My Space!”

2011 August 3

You are stressed. Overwhelmed. Can’t sleep even though you are exhausted. And your patience level is at an all-time low. So what do you want to do? Get away from others, right? As caregivers, stress is a constant in our lives. It’s no surprise that, when under the influence of stress, our first “instinct” is to remove ourselves from others.

When stressed, many of us tell ourselves (and others), “I need my space.”  We dream of getting away. We find ourselves turning down opportunities to spend time with others.  We  politely thank others for offering to come over to the house, but reject their offers, explaining, “Thanks so much for the offer but it’s just not a good time right now.”

“I need my space” is code for “I don’t want to be around other people.” This seems natural, doesn’t it?  Well, this so-called instinct isn’t as natural as we might think.  If you’ve ever watched young children play on a crowded playground, you know what I’m talking about.

The more children there are playing together, the more they run and yell and hop and skip and laugh.  And the faster they go. The more energy they gain.  Even though the spaces between them are often no more than a few inches, they don’t step away. They don’t seem to mind the presence of others. Traffic jams of other children don’t frustrate them, they simply become parts of the playground to be navigated.  They bump into each other and keep going.  They move around and through. In other words, they adapt.

Us adults, on the other hand, we aren’t nearly as adept at adapting. We have a much harder time navigating around the landscapes of other people.  When under stress, many of us retreat away from others, taking our physical presence and finding solace in solitude. Affirmative solitude is necessary for thought and rest and contemplation, but too often, solitude is used as a type of retreat against the world.

As a caregiver, you can’t help but realize that much of everyday life is beyond control. So it’s no surprise that the desire to be alone, to separate ourselves from others, to get space, is an attempt to regain control in a world that sometimes seems out of control.  In saying we want space, we really are saying we want complete control. So we seek out our special room. Our favorite oasis. A television. A shut door. A darkened room.

Just remember, those children on a crowded playground can teach us something. Voices and bodies and movement don’t have to drain us of our energy or create anxiety. “Needing space” isn’t necessarily natural. Laugher is natural but it doesn’t happen alone in a darkened room. Comfort is natural but it rarely comes from the television.  And stress, well, it isn’t always caused by other people. Sometimes, it’s good to hear other voices mixing together simply to remind yourself that you, that we, aren’t alone. Sometimes, it’s okay to share the same playground, even when we feel crowded.

Silence…Doesn’t Have to be Awkward

2011 July 18

Just the two of you but nothing is said between you. There should be so much to say. So much you wanted to say. So much you thought about saying on the drive over to visit. But here you are, sitting only feet from your loved one and there is nothing but silence. You can’t help but panic as your muscles tense and your worst thoughts begin to take over: “Is everything okay?” “Is she mad at me?” “Did I do something wrong?” “It was a mistake to visit.”

For most of us, silence is one of the great social fears we experience when in the company of another person we care for.  Most of us are taught that if we don’t have anything to say, then we shouldn’t say anything at all.  It’s no surprise then that as adults, all forms of silence are almost always perceived as awkward.  According to a recent article in the New York Times entitled “Anyone There?”, when we send an email to a friend or work colleague and receive no response in return, we can’t help but conclude we are being ignored and forgotten.  So, it’s no wonder that when we are physically sitting next to someone we know and care for and experience moments of silence, we think something is wrong because we mistakenly believe that:

  • If we’re not talking, we’re not relating
  • If we’re not talking, they must be upset
  • If I don’t have anything to say, I shouldn’t have come to visit
  • If we don’t have anything to say to each other, then something is wrong with our relationship
  • Talk is the only way to become close to someone

Each of us is highly educated in knowing how to make sense of others’ words. Unfortunately, no one taught us how to interpret others’ silence.  As caregivers, silence is a language we especially need to understand because silence is so often a part of our relationships with those who are tired, ill, or unable to speak.

Keep in mind the following communication principles the next time you experience interpersonal silence:

  • Silence can bring you closer to someone. When you share a view of the sunset with someone, the awe of the beauty before you transcends anything you could say. Simply sharing that moment together, without the need for words, inspires the holding of hands and a shared, deep appreciation of the moment. So why not allow the shared moments of silence bring you and your loved together in interpersonal relationships? Yes, there is no sunset to behold but the principle remains the same.  What makes interpersonal silence so awkward is our expectations that every second has to be filled with words. Being physically present with your loved one says more than you could every put into words. Awkwardness quickly flows into appreciation when we trust ourselves in knowing that what we are sharing together in physical presence is more important than anything we could say.
  • Silence can be an incredible interpersonal gift. We’ve all been in the company of special friends or loved ones for whom we felt the luxury of not having to fill every moment with words. Knowing we don’t have to talk makes these relationships special because we “get” one another even in the absence of words. Likewise, your level of comfort with silence when in the company of the ill gives your loved ones permission to feel like they can be themselves. They don’t have to put on a show. They don’t have to “get up” for meeting you. They can be authentically themselves. Knowing they can sleep in your company or listen to you without having to give you verbal feedback means that you will be different than most others who come with expectations that require them to be something they are not feeling. Your comfort with silence in their presence can be an incredible gift of peace.
  • Silence can bring people closer together. When you let go of the need to fill every moment with words, you become more perceptive of the person you are sharing space with. You become more perceptive of the setting you are in. And you become more aware of your very presence. The moment is allowed to speak to you when silence exists.  When we become comfortable just sitting with another without speaking or being spoken to, awkwardness falls away and deep appreciation fills our senses.  The smell of your loved one’s perfume is noticed. The color of the wall becomes more pronounced. The deep rhythmic breathing of your loved becomes a lullaby. The shape of your loved one’s mouth becomes more pronounced in your memories. And the touch of their cold skin against your warm fingers blends into a perfect union of temperature. 

When our words are allowed to rest, our other senses come alive, filling in the gap with understanding that is as valuable as anything we could say. When our expectations for words is replaced with an acceptance that silence can bring us closer together, you will see, hear, and experience moments of connection that you may not have been able to achieve when too preoccupied with filling silence with words.

Not All Attention is Created Equal

2011 June 7

Much of what we do as caregivers can be summed up in two words: giving attention.  Most people dismiss the value of attention because this act of care seemingly requires no special skill set. So, the thinking goes, if anybody can give attention to a loved one in need, then it clearly isn’t very unique. But here’s the catch—so few people are capable of giving the kind of attention loved ones need most because not all attention is created equal.

The following list distinguishes between different types of attention, beginning with the least essential form of attention and culminating with the most vital type of attention that distinguishes caregivers from most others. And just as important, the last type of attention described will remind you why the care you give is so important to your loved one.

Body Attention— Although this type of attention is essential among medical experts, it is the least important (yet most heralded) care we can give to loved ones.  Body attention focuses attention on people’s bodies and body parts—turning care into an endless search for accurate, clear, and more (always more) information about origins, symptoms, and causes of diseases or illness.  This type of attention is often expressed as “research,” as those who give this type of attention demonstrate their care by privately doing endless hours of Internet research away from the very person they care for.

People who give bodily attention become intimately familiar with body parts or symptoms but, in the process, they can’t help but (unintentionally) neglect the very person they love who has the very symptoms or disease they have devoted most of their time, energy, and focus.

In other words, you can only type generic body parts and names of diseases and symptoms into the Google search box to find out more, not your loved one’s name.

Convenient Attention—This form of attention is given when it is convenient for the person giving attention, not the patient/loved one. This kind of attention is usually given by a long-time friend or neighbor and is typically expressed with statements such as, “I’m going to come by your house and read to you three times a week…” or “I’m going to call you everyday to see how you are doing.” Because this care is based on convenience, the promises of attention often only create false expectations that are rarely met.

Sadly, this type of attention revolves around work and social or mood calendars, not the need calendar of the person in need.

People who give convenient attention find it hard to overcome the needs of the moment, often uttering phrases to themselves such as,  “I’m not really up or visiting today,” or “I can always go next week. I’m just not feeling it right now.”

Conditional Attention—This type of attention is characterized by a carrots and stick approach to caregiving. In other words, well-intentioned, tough love means attention is given with strings attached—making sure your loved one “gets better.”

When attention is focused exclusively on a loved one’s potential to get better, attention is all about improvement and almost never about the value of the person staring back at you.

So, conditional attention dangles the promise of more attention just beyond the outstretched arms of a loved one because it is used to prompt, inspire, and cajole a loved one to do more, to expect more, and become better/healthier. Although conditional attention may have noble aspirations, too often, this kind of attention only reminds a loved one that their worth is always about tomorrow—when they have “overcome” a disease or medical condition—not about who they are today.

Caregiver’s Attention

As caregivers, we know that all attention is not created equal.  Caregivers like you and me—we give a different type of attention than most others.

Our care is so different because our attention is given to the whole person. It goes beyond body parts because we know our loved ones are more than their bodies.

Our attention occurs everyday, when our loved one needs it most, not when it is convenient for us. And our care has little, if anything, to do with what will happen to our loved one if they get better because our attention is focused on what is happening now.

So when someone minimizes the job you are doing as a caregiver, remind them that not all attention is created equal. Even though attention seemingly requires no particular set of skills that can be neatly bullet-pointed in a resume, it’s amazing how rare a gift it is to give and receive attention without qualifiers.

Tips for Communicating Care to Family and Friends

2011 May 24

When we think of care, we typically only think of the care we give to loved ones. But much of our energy, thought, and time is spent in consultation with others. Even though care is almost always carried on the shoulders of one person (probably you), family and friends will want to know what’s going on and feel like they are a part of the process.

This means that primary caregivers also have the burden of convincing or informing others of care challenges, concerns, and impending decisions. Unfortunately, the burdens of care are so great and constant that few caregivers have the energy or know-how to explain, justify, or influence the well-intentioned yet sometimes suspicious audience of family and friends. Here are 3 simple but effective communication tips to keep in mind when communicating care to others:

(1)  Don’t Forget to Remind Others of the WHY—Experts have objectivity on their side when it comes to influencing others. This means professional caregivers like doctors and nurses are believed because of their expertise and professional training. Their distance from us is usually thought of as a persuasive advantage.

However, your subjectivity—your love for the person you care for—isn’t a disadvantage. When communicating with family and friends, begin the discussion with an explicit statement of love and care: “I love Mom so much you know I want the best for her. And because I see her most of the day, I wanted to talk about….”

In the middle of any discussion with family and friends, remind them that your concerns and suggestions come from a place of love: “We both love Mom so much that I know we don’t want her to be alone at night. That’s why I wanted to talk to you about getting some help for the evenings….”

At the end of any discussion with family and friends, remind them of your shared goals. Too often, the content specifics of a discussion camouflage the why of the discussion. Although the specifics of each discussion may change, the why—your love and care for a loved one—will always remain constant. Focusing attention on the why can help keep your audience grounded in what matters most—the well being, comfort, and safety of the person you care for.

(2)  Don’t Forget to Remind Others of the ‘We’—As a primary caregiver, the burden of explanation almost always rests on your shoulders.  Because you are carrying the overwhelming burden of caregiving, it’s no surprise that discussions with family and friends are often perceived as an “I” vs. “they” scenario.

Just don’t forget that, when it comes to explaining, informing, and/or persuading family and friends, your voice will matter more if you help eliminate the “I’” vs. “they” perception that often exists in the minds of family and friends.

If you lead only with the “I”, your voice will more likely be perceived as antagonistic and unfriendly: “I have a problem when it comes to helping Dad understand that…”

If, however, you lead with the “We,” your voice will more likely be perceived as agreeable and friendly:  “We have a problem when it comes to helping Dad understand that…”

Most people want to feel like they are included in the process of discussion, even though they may not be involved at all in the actual care process.  Feeling excluded (i.e. “why does he get to make all the decisions”) is likely to encourage others to disagree just to disagree, making your care duties and responsibilities even more difficult and exhausting.  Of course, the responsibility of care still may rest almost entirely on your shoulders, but encouraging others to feel like they have a voice in matters of care is an important step in facilitating goodwill and support.

(3)  Don’t Forget to Use Stories as ‘Evidence—Professionals like doctors and nurses have statistics on their side. That’s how they help others understand the significance and relevance of what they are talking about.  As caregivers, however, we don’t typically have statistics on our side.  We have stories.

Stories, or narratives, are the perfect language of persuasion and influence for caregivers. Stories focus others’ attention on what’s important. Stories provide detail so others can relate and identify.  And stories help others understand the problems and challenges in vivid and descriptive language.

If you are trying to help explain the fact that a loved one is in serious pain and needs palliative care, use a story to illustrate what it’s like when your loved one is in pain. What do you hear? What does your loved one say? How long does the pain last? How does your loved one look when in the midst of pain? And, just as importantly, what is it like from your perspective, as a caregiver, to hear and see someone you love endure such hardship?

When explaining care to family and friends, keep in mind the following tips for telling compelling care narratives:

  • All stories have a beginning, middle and end
  • Make sure your story fits together and makes sense
  • The story should help others identify and understand in vivid ways what you see, hear, or feel as a primary caregiver.

Remember, care is not only about what we do or give to our loved ones.  Care also requires that we constantly communicate/inform/persuade family and friends who want to feel like they are a part of the process.

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