Family Care Complications

2015 March 15

You are the front line provider of care.  It’s natural. Expected. It’s what love is all about. It’s what we do for people we love.  Our desire and willingness to provide care for the people we know and love most doesn’t mean our care isn’t complicated.

Here are three common reasons why providing care for a loved one can be complicated even though caring for someone we love is something many of us would never forego.

(1) “Of course I will, we’re family.”

You would never use the word obligation when describing your care for your loved one. At the same time, an almost near-universal frustration of family caregivers is the expectation of care based on relationship expectations.  Rarely, if ever, do we explicitly state these responsibilities, rather we internalize them and they become the very reason for our care.

“This is my spouse, of course I am going to care for her.”

“They’re my parents, of course I’m going to care for them.”

“I love my sister.  She and I shared a life together growing up. I’m going to be there for her.”

At one point, however, you may ask yourself why you seem to be doing more than your share of caregiving.  No matter how much you love the person you care for, this question is inevitable. Too often, the burden of care falls upon one person more than others, and this is usually a byproduct of family history.

Family caregiving is complicated because it defies our notions of relational reciprocity. As you accommodate your life to care for a family member, the burdens of care become more pronounced—financial stressors, time demands, changed living arrangements, work-care conflicts, etc.  Because we are family, we care despite these stressors. However, over time, it is difficult not to compare our care responsibilities to other family members’.  When we believe we are taking on more than our share of caregiving, resentment and burnout are side effects that implicate everyone in the family, including the person being cared for.

 (2) “I know you, you know me . . .”

We know the person we care for and they know us. We grew up with them. They were our mothers or fathers or siblings. Relational intimacy is an overwhelming motive for care. A shared family history can also complicate care.

The very person we care for may feel trapped by not feeling comfortable sharing what is happening to their bodies, dreams, and anxieties because of how such disclosures might affect us. What if your mother told you of her desire to stop treatment for her illness?  Of course, you’d appreciate her honest disclosure, but at the same time, would you be able you unlearn that knowledge amidst the backdrop of daily car rides to chemotherapy?

Unlike acquaintances that don’t share a family bond, we must negotiate the uneven terrain of caring for a loved ones’ needs while also seeking to maintain a relationship.  This can be very challenging when our care is impacted by our knowledge of the past and our expectations about what our relationship seemingly requires:

Moms are supposed to be positive.  Why is she telling me she’s done with experimental treatments?”

“Dad used to be so financially savvy. Why doesn’t he understand how caring for him is changing my own financial future?”

“I knew my brother’s body would eventually have to pay for his lifestyle.  But why am I the one who has to pay for his bad choices?”

 The people we care for are vulnerable. They need us. They love us. But can they authentically and openly share frustrations with us, their primary lifeline to the world? Can they realistically disclose doubt or helplessness or disappointment in light of everything we are providing them? Similarly, can we authentically and openly share our frustrations with our vulnerable loved ones? Can we realistically disclose our doubt or helplessness or disappointment amidst everything else we are providing them?

Frustration and disappointment are inevitable experiences of relationships but for family caregivers and loved ones needing care.  The irony is that because we know each other so well, some topics and conversations and feelings will remain silenced because of our desire to maintain our relationships with those we care about most.

(3) “What do you mean I may not understand?”

When we are our loved one’s life line, it’s hard to know (let alone admit) that our care alone may not be enough.  Acknowledging that our loved ones may need outlets beyond us may be difficult to accept. Sometimes, despite our willingness to help, our loved ones need to access and talk to others who are unlike us so they can receive support from…

Someone who has first-hand experience of a particular illness.

Someone who knows what pain is like.

Someone who shares a similar diagnosis.

Someone who will not flinch or become embarrassed by what is happening to their body. Someone who will not make judgments about them and their condition.

Someone who will not hold them hostage to their past.

Someone who will not hold them hostage to their loved one’s hopes for the future.


Caregiving is something we do out of love. And it is our very love for the people we care for that can make caring complicated.


The One Question You Wish You Were Asked

2014 September 22

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

Caregivers, when was the last time someone asked you a question? A genuine question. The kind of question that is asked of you, for you, and about your situation.  Not an assertion or accusation but a question.

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

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

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

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

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

Questions are magic—not the questions themselves—but what they make possible. Questions allow us to see how others see their world(s). What makes sense to them. What doesn’t. There is no perfect question. There are merely questions that allow us to grow toward one another that go beyond clichés and the weather and a listing of accomplishments.

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

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

Then listen. You might be amazed at what happens.


Caregivers, Create…A Beginning

2014 September 12
by Dr. Zachary White

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.


The Truth About Hope

2014 May 9
by Dr. Zachary White

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.




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 ( 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.

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