Caregivers often experience relationship confusion as they may feel like they are called to be the sole audience for all of their loved one’s needs.
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When was the last time you felt deeply connected to a group of people? A deep and genuine sense of connection is becoming ever more rare in contemporary life. Everyone needs to feel connected, but a sense of connection is most vital when you are in the midst of a life-altering role that is transforming you and your relationships. If connection is so important, then why is it so hard for caregivers to feel as if they are a part of something larger then themselves?
There is no common beginning to our most important informal life roles. Let’s face it, what experience do we set forth on, at the same time, with other people? Yes, there are plenty of marked beginnings in contemporary life, but our individual beginnings seem to rarely coincide with others’ beginnings. A death of a loved one may mark a new beginning, but not for those in your friend network. Getting laid off from work may symbolize a new beginning, but not for those in your extended family. The need to provide care for a loved one may signal a new beginning, but not for those you work with. Beginnings come at us all the time, but too often they are conceived and experienced as private and individualized experiences.
School may be one of the few cultural experiences in which there is a semblance of a “beginning” that is marked and collectively acknowledged. The “first” day of school may be a singular experience in cultural life in which we begin something with others and anticipate responding together to shared experiences and challenges.
Beyond school, however, much of our lives are spent trying to connect with and find others who are experiencing what we are experiencing.
You may start a job at the same time as others, but even this onboarding experience can too easily become conceived as a private endeavor restricted to a one-week training session that quickly fades away upon completion. The birth of a child is a clear beginning for parents, but beginnings aren’t simply about when a new role comes into existence. It’s also about what happens the day after, the week after, and months after you are initiated into a radically new role.
Shared beginnings forge deeply meaningful bonds because they allow you and others to lean on a shared reference point that marks your individual and collective development. New experiences are scary because they seem to defy prediction and require us to constantly make sense of what we are experiencing without knowing what will happen next. Forging a path forward in uncharted territory requires constant awareness because we don’t know what we (don’t) have to pay attention to. Quickly, this all-encompassing focus becomes exhausting and overwhelming. But exhaustion is also a reason to turn toward others whom you believe are “in” it with you. This “not knowing” is the reason, the perfect reason, the only reason necessary, to connect with others.
Shared beginnings are deeply charged opportunities for connection because they can minimize differences that you once believed existed between you and those around you.
New recruits to the military or first-year medical students understand this common phenomenon as an intense type of “boot camp” experience in which who you were and what you once believed becomes less influential than the overwhelming impression that you are no longer responding alone to what is happening. You are not alone but being formed—together—by what is shaping you and others in your common circumstance.
Too often, however, the costs of being separated from common beginnings has significant consequences that are rarely acknowledged but almost always felt.
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we are experiencing is distinct and unique?
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we are enduring is unlike what others are experiencing?
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we enduring doesn’t have a place to be shared or talked about?
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we are enduring isn’t worthy of being shared or talked about?
Beginnings don’t just mark when something starts. They mark how we respond with others. Shared beginnings can be the glue of connection, essential opportunities to find and connect with others responding to similar challenges.
Sometimes, integrating ourselves into a “we” means gaining parts of ourselves that we know bind us to others. Sometimes, seeing how we are being commonly shaped by factors beyond our control means finding parts of ourselves we can recognize in others.
We may not be able to choose what beginnings find us, but we can choose how we think about our care experiences. International care advocate Donna Thomson and I explore this care transformation and many others in our book, The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver. Learning how to allow yourself to find connection with others may be the most important step you take in your care journey because it’s not always about stepping forward as much as it is about reaching out.
You may not remember the exact time or even day when it happened. But it did—for all of us. The possibility of meeting various and new people in distinct contexts is now a memory and a dream. Prior to the pandemic, each day provided the possibility of sharing space with people in a variety of contexts and situations—work, gym, neighbor’s houses, school, church, volunteering, clubs. And then they were gone. Not just the situations, but what the situations made possible in ways that few of us previously considered.
Are you feeling trapped? Stuck? Hopefully, you are surrounded by people who love and care for you as you do for them. Nonetheless, you can love someone and still feel stuck and claustrophobic. Your loved ones are probably thinking the same. It’s nothing personal, but at the same time, it is absolutely personal.
Our need for interaction and support does not go away in the midst of a pandemic. Rather, it is likely intensified because many of us are scared, anxious, uncertain, and trying to adapt to circumstances that were not of our own choosing. And so we turn to the people nearest to us in our shared, physical spaces. And this may be a spouse, partner, child, or parent. Someone you deeply care about and whom cares about you. But something is different, perhaps even strained.
You are more frustrated with them.
They are more frustrated with you.
Your patience level is at an all-time low.
Their patience level is at an all-time low.
But you care for this person.
And they care for you.
Social contexts matter because they provide us instructions for knowing how to present ourselves. They give us permission to enact various parts of ourselves called forth by particular contexts and expectations. We act one way at home that doesn’t translate well at school. And we talk differently when amidst friends than we ever would with family. We reveal vulnerabilities to a partner in ways we would never conceive of sharing at work.
Even when these dynamic social contexts are not accessible and we are left with only one unchanging context for interaction with the same person/people, hour after hour, we don’t stop wanting to find an audience for our social and support needs.
When we channel the breadth of our needs and desires into the very person/people we are sharing physical space with during the pandemic, relationship confusion—and frustration—inevitably occur.
This form of “context collapse” can distort our relationships because our multiple and diverse needs for support and self-presentation get compressed into one audience. How can’t it create relationship confusion and frustration when you want one audience—or one person—to give you absolute freedom to share what you are thinking in one moment and then in the very next minute, offer an objective viewpoint? How can’t it create relationship confusion and frustration when you want one audience—or one person—to remain authentic to their own beliefs and listen to you without judgment? How can’t it create confusion and frustration when you want someone to love you unconditionally while also holding you accountable to the previous boundaries of your relationship?
A casualty of channeling all of our various hopes and needs and expectations onto one audience is an inability to recognize who is nearest to us. When this happens, frustration and disappointment cloud our ability to acknowledge and appreciate what this very person, this one person nearest to us, can provide as we preoccupy ourselves with wanting them to be everyone else but themselves.
Caregivers often experience this form of relationship confusion as they may feel like they are called to be the audience for all of their loved one’s needs. In addition to their pre-existing relationship with their loved one, they may feel compelled to fill the role of friend, supporter, comforter, doctor, nurse, physical therapist, listener, and on and on. Trapped in static definitions of what it used to mean to be a in a relationship with a loved one—parent, child, spouse—a caregivers’ relationship reality is always different than what outsiders can appreciate. It’s always something more. Always something less. Always something similar. Always something different. And always more complicated and contradictory than it used to be.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
This article is also available at:
https://www.psychologytoday.com/us/blog/when-care-meets-love/202005/frozen-networks
References:
Bazarova, N. Choi, Y. (2014). Self-disclosure in social media: Extending the functional approach to disclosure motivations and characteristics on social network sites. Journal of Communication, 64, 4, 635-657. I am reconceiving the mediated construct of “context collapse” to highlight similar audience in-person impacts that have resulted as a result of pandemic stay-at-home orders.
Thomson, D. & White, Z. (2019). The unexpected journey of caring: The transformation from loved one to caregiver. Rowman & Littlefield.
Marwick, A. & boyd, d. (2011). I tweet honestly, I tweet passionately: Twitter users, context collapse, and the imagined audience. New Media and Society, 13(1), 114-133. I am reconceiving the mediated construct of “context” collapse to highlight similar audience in-person impacts that have resulted as a result of pandemic stay-at-home orders.
In the midst of your daily routine with your loved one, something different happened. A moment that surprised you and spoke to you without a word uttered.
You and your love one exchanged a shared smile.
That shared smile mattered because you felt its impact well beyond that moment. That one fleeting moment made your day. It made you feel closer to your loved one. And it reminded you why you do what you do.
You reach for your phone to call your spouse or friend to share your good news.
You want them to know that what you felt in that moment with your loved was special. As you attempt to share your good news, others’ responses came at you in ways you didn’t expect . . .
“Yeah, but it doesn’t mean he is getting better.”
“Why did you text this to me at work? I’m not sure why you think that was so special?”
“Are you sure you’re not exaggerating. I mean, are you sure it was a smile?”
The very moment that you desperately wanted others to appreciate was met with something other than what you expected. Your news lingered. It was left alone. Unattended to. Overlooked. Minimized. Ignored.
Breaking bad news receives so much attention because we know that communicating difficult truths is challenging and uncomfortable, especially in formalized health settings.
Yet, not being able to authentically share good news with family, friends, and work colleagues can be devastating because it defies our expectations and changes how we think about the people around us.
If they can’t celebrate good moments with me, then what can they appreciate?
If they don’t appreciate how important this moment was to me, then do they really know who I am?
If they can’t acknowledge the importance of what I’ve just told them, then are they really my friends?
When our good news is met with disbelief, silence, neglect, or even rejection, others’ responses don’t just change our perceptions of the people around us.
Others’ lack of responses can make us feel confused and disconnected from our own experiences in ways that distort our reality.
When our news isn’t acknowledged or appreciated, the good of our experiences is much more likely to be overlooked and underappreciated—by us. We can’t help ourselves from being keenly aware of what (doesn’t) move our audiences. If our positive news is underappreciated by others, we are less likely to identify and remember the good of our experiences. The good that we experience doesn’t disappear, but the way we interpret these moments changes in subtle but powerful ways.
We may see the shared smile with our loved one but no longer consider it worthy of sharing.
And not sharing the good of our experiences has consequences. The shared smile may be seen but not remembered because we aren’t allowed the privilege of elaborating on what it means to us and how it makes us think about our care experiences in profound ways.
Caregivers, in particular, are challenged when it comes to sharing good news because of others’ limited notions of caregiving. And yet, to continue caring, we must find outlets for the redemptive aspects of our experiences.
When we share good news, something more is gained than the mere relaying of the news itself. The collective acknowledgment of your good news creates bonds of intimacy that deepens relationships. Knowing that others are seeing and noticing and commenting on your reality reminds you that you are surrounded by those willing and able to participate in legitimizing how you are making sense of caregiving.
Sharing good news also impacts how we feel about those around us. People who honor and acknowledge our good news signal that they are open to being shaped by our interpretation of experiences.
“That is so beautiful. Tell me more about how that shared moment made you feel about yourself and your loved one?”
“I am so happy that you were close enough to notice that privileged moment of connection.”
Here, intimacy is created that transcends the sharing of mere information. Your good news is no longer yours. It’s no longer theirs. This kind of collective intimacy makes it possible for us to know that the breadth of what we are experiencing—the good and bad—is not just a reporting of what is happening, but a reminder that, though others may not be physically with us, they are always co-authors shaping what we see and notice and appreciate in ways that can sustain us during the most difficult parts of our experiences.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
This article is also available at:
References
Gable, S., Impett, E., Reis, H., & Asher, E. (2004). What do you do when things go right? The intrapersonal and interpersonal benefits of sharing positive events. Journal of Personality and Social Psychology, 87, 228-245.
Sparks, L., Villagran, M., Parker-Raley, J., & Cunningham, C. (2007). A patient-centered approach to breaking bad news: Communication guidelines for health care providers. Journal of Applied Communication Research, 35, 177-196.
Thomson, D. & White, D. (2019). The unexpected journey of caring: The transformation from loved one to caregiver. Lanham, MD: Rowman & Littlefield.
Villagran, M., Goldsmith, J., Wittenberg-Lyles, E., & Baldwin, P. (2010). Creating COMFORT: A Communication-based model for breaking bad news. Communication Education, 59, 220-234.
In the visual-laden world of social media, it’s no real surprise that our attention is focused almost exclusively on sharing spectacles that can easily be appreciated by others. Spectacles that have clear beginnings and endings.
A sunset. An incredible meal with family and friends. A moment of triumph.
Yet, feeling connected, remaining connected, and finding value in our everyday is as much about the social media moments we share with others as it is about our capacity and willingness to share (and reshare) the seemingly insignificant, minor, and ephemeral moments of joy with ourselves.
Because caregivers are vulnerable to feeling alone and apart from the world around them, they are also less likely to remember and find comfort in the fleeting moments of joy and connectedness throughout their everyday. How we think about ourselves, our care situations, and what tomorrow will bring is a byproduct of what we (don’t) take with us. Too often, ephemeral experiences of peace and comfort can so easily be forgotten and discarded amidst overwhelming responsibilities and concerns.
A difference between those who feel connected and those who feel lonely isn’t simply about “what” you do everyday or “whom” you spend your time with. If it were, loneliness would be easily measured and quantified. But it can’t be because so much of feeling separated from others is about how we perceive our connections to those around us.
Feeling connected and valued is also about what you give yourself permission to drag with you throughout your day. A transient moment of peace. A line of poetry. A brief smile. A passing sense of wonder. People who feel connected are more likely to lean on, leverage, and return to those specific moments of joy and experiences of connection long after they are “over.” They are more likely to use and reuse these small, seemingly insignificant experiences of the everyday—the micro experiences of connection and value—and make them work for them throughout the day and into the next.
On the other hand, those of us who feel disconnected from others find it much more difficult to drag “good” meanings with us throughout our day and weeks.
Instead, the “minor” and “subtle” experiences of connection and awe quickly become casualties to self-doubt. These moments can too easily become discarded, pushed to the edges of our awareness. They aren’t injected into our awareness of the now we are in; rather they become camouflaged as if we were hiding these revered experiences from ourselves as a cruel form of punishment.
A hug. An unexpected conversation with a stranger. The sound of a loved one’s voice. A shared smile. For those of us already vulnerable and feeling disconnected, there are long-lasting consequences associated with interrupting these moments of connection. Increased isolation. Deeper self-questioning. A growing unease about the people nearest you. And a looping narrative that increasingly misrepresents you and your situation.
Instead, the momentary and ephemeral—the stuff that might otherwise never make it into your social media feed—must be shared with ourselves (repeatedly) and held onto tightly. Our willingness to go to these experiences long after they are “over” must be introduced into the present, over and over again, so that we might allow ourselves to lean on them for comfort. Constantly re-animating these moments isn’t a luxury, but a necessity because they serve as a type of insurance to keep ourselves open to seeing, experiencing, and indulging in the ongoing availability of connection and joy in our lives, however temporary and invisible they might be to outsiders.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
One of the most important but under-appreciated duties of caregiving is communicating with family, friends, and co-workers. Without you, what happens to, and with, your loved one is beyond comprehension and notice.
Simply put, caregivers are reality creators whom serve as the ultimate gatekeepers of understanding.
Unfortunately, this communicative responsibility is rarely appreciated because “it’s just talk.” Yet, the communicative burden and opportunity of caregiving is immense and ongoing. Communicating your care experiences is so challenging because what you are trying to help others understand is so different from what they are used to hearing. You are attempting to . . .
Break news—constantly. Yes, doctors and providers break bad news all the time. They share diagnoses and reveal results from tests. Doctors and providers can show the latest results from a CAT scan or a blood test. These are believed to be measurable and objective results that require little translation as they are reducible to “good,” “bad,” “improving,” or “deteriorating.” From a provider’s perspective, there are some excellent strategies for effectively communicating bad news.
These are vital acts of communication, but they are different from what you have to do. The news you attempt to share is so much more challenging to explain because your news may not be “new” but it is still important. Sharing your care experiences is an ongoing difficulty because the news you want and need to express doesn’t fit with others’ appetites for updates about a visit to a hospital, an upcoming surgery, or a recovery.
Your “news” exists before and after headlines, when living unfolds but doesn’t call out to be noticed. This is the news that matters most but is almost always under-appreciated. The news caregivers must attempt to “break” is rarely accounted for because it may not conform to others’ expectations of prominence, relevance, or impact, even though for you and your loved one, it is all of these things, all the time.
Highlight not just what someone “has”, but what their illness or condition means for them (and you) now. Most people believe explaining the care situation begins and ends with a medical diagnosis, or something that can be looked up on Google.
Yet, caregivers must constantly translate what they see, hear, and notice in ways that are meaningful beyond medical diagnoses. They may begin with a medical diagnosis but they are also always about how your loved one (and you) are making sense of experiences now. Caregiver realities must account for today. This hour. And they must include the very experiences, thoughts, reactions, and feelings that exist without clear answers or resolution.
This is exactly the moment when communication may be the most difficult, but also the most important. Well-intentioned friends and family may feel they already know what is happening—“Dad has Alzheimer’s.” “Mom has cancer.” “His son has special needs.” Others too often mistake a diagnosis or condition with understanding. But you are close(r) to your loved one than perhaps anyone else and still close enough to family, friends, and work colleagues to know that what others think about your care experiences may be vastly different from your everyday reality.
In this divide, you live and care, everyday. Even thinking about overcoming this schism in understanding can become exhausting, especially when you desperately long for others to know what you know and see what you see.
Communicate to audiences who may not want to hear what you need to share. Caregivers must always communicate within a context that seemingly defies others’ everyday understandings. Because caregivers can’t rely on the desired benchmarks others expect when in conversation—progress, recovery, “good” news, the promise of the future—they must constantly fill in the gaps. You must constantly tell and explain, and then explain again, and then explain away what others mistakenly might believe.
And caregivers must communicate truths that are contrary to what others want to believe. Or what others need to believe. Or what others desire to believe.
You, and you alone, must create space for realities to be shared that aren’t about recovery. Truths that don’t conform to what people want to hear or feel they can hear. Realities that may not have clean answers. Or that may have no good options or alternatives. Or may make people uncomfortable. Or may even contradict what others—from afar—think is good or even right.
Others may want sanitized responses from you reminding them that everything is fine or everything is going to be all right. Other people’s needs and desires can push back, subtly, and not so subtly against what you believe they most need to know if they were to authentically understand what is happening.
In the ongoing process of attempting to communicate accurately and authentically to others, your reality is vulnerable to becoming overlooked, under-appreciated, and ignored. Over time, other people’s responses and misunderstandings—camouflaged in sincerity—can become ongoing communication challenges. When you know the people you are sharing with only want to hear (or don’t hear) certain things, you can’t help but change what you say. And when you begin to revise what you (don’t) say, you become changed in ways that may make you doubt the legitimacy of your unique vantage point and value as a caregiver.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
With spring comes new hope. This is the season when young people listen to speakers—movers and shakers of industry and politics and entertainment—share their nuggets of wisdom about what it means to be great and what it takes to be greater than the person sitting next to you.
One of the most watched graduation speeches is that of Steve Jobs, co-founder and visionary of Apple. Though he doesn’t actually say this in his graduation speech at Stanford in 2005, young people still widely respect and admire Steve Jobs because of a quote he is believed to have said: “We’re here to make a dent in the universe.” In only nine words, he is able to transport the imaginations of people who want to make their own dents in the universe. Who doesn’t want to be known? To be remembered? To be valued? To know that you mattered?
But you and I and know something is missing from this inspiring quote. Something even more daring could be said, though it wouldn’t be received nearly as well. To those who have lived life, to those who care for someone who has been partly remade by their challenges, their bodies, and situations that mark them even today, this quote is incomplete. Something more must be added . . .
Making a “dent” in the life of your family is as audacious a goal as making a dent in the universe. Caregivers know that making a “dent in the universe” is viewed as synonymous with being valued by others who do not know us. Making a dent in the universe is about mattering to other people. To be known as a visionary. To create a product or be a part of an endeavor that moves people and shapes our collective imaginations. These are impressive and awe-inspiring feats. These are the kinds of impact people respect. But they are different than the dents of impact in the life of your own family.
Making a dent in the life of your family is much more difficult because your dents—your impact—means risking anonymity—a bad word in today’s world.
Your care involves equal amounts of attention, effort, dedication, and innovation than those who seek to be known—by others. Yet, your endeavors will rarely be noticed or appreciated because they involve a willingness to re-imagine a relationship you are already in.
A spouse who is also a caregiver requires a willingness to change almost everything he once knew about how to relate and engage in his relationship. A parent who is also a caregiver requires a willingness to change almost everything she once knew about how she relates and engages in her relationship. A child who is also a caregiver requires a willingness to change almost everything he once knew about how to relate and engage in his relationship. Risk and ongoing tension are inevitable side effects of your dents. And your dents are more fragile, more raw, and more perilous because they aren’t directed toward impacting the lives of those you do not know. Your “dents” also mean impacting the people you know best.
Making a “dent” in the universe of your family is different because your impact is almost always invisible and incomprehensible to outsiders. Your “dents” are almost always camouflaged in the everyday anonymity of the private and informal spaces of care. There are no grand stages to be known by outsiders in the universe of your family. Within the family setting—behind closed doors—impact is occurring without time tables, or discernible end points, without product launch dates, let alone an IPO in which others speculate on the prospects of success, profit, and glory.
You invest in your care situation precisely when there may be no hope. When others have walked away. When others have turned away. When others have stopped calling. On the other side of cure and hope. Your investments of care and dedication often make no sense to others or are met with awe and disbelief. They defy rationality and cost-benefit analysis.
You and your efforts contradict the logic of the outsider, but the outsider doesn’t know what you know— love radically disrupts all logic.
Caring despite acknowledgment, beyond others’ awareness, and in spite of a “sensible” relationship that tells us we always should gain more than we give, means your efforts are radically disruptive because they upend everything that others believe should be true about relationships.
Caregiving is such a radical concept that defies comprehension because it challenges the notion that aspiration can mean something more than a complete preoccupation with our own desires and wishes.
Caregivers can’t wholly and fully give themselves over to caregiving because they are engaged in additional relationships and responsibilities in their private and public lives. Always. Making a dent in the life of your family via caregiving means you can’t specialize. You can’t tell people that your everyday is filled with the exclusive pursuit of your dreams, as much as it is filled with the ongoing maintenance of multiple and competing relationships, responsibilities, and aspirations.
Other people’s dreams are abstract, devoid of relationships, because relationships are believed to “hold people back from their dreams.” Other people can only get in the way of dreams when dreams are dreamed apart from the people we care about.
Caregiver’s efforts, on the other hand, are always embedded within a context of care and family and love and constraints. They are situated, not abstract. They are responsive to what exists, not preoccupied with what could be.
And so, in your very care for another, you and your caregiving efforts are different. Distinct. And maybe even stigmatized because your “dreams” of impact can’t be divorced from the people you care about. These days, this is a radical idea that can’t help but scare those who believe focus and determination and aspirations must exclude care.
It’s time we begin talking about impact at the local level. I’m talking the micro-level. In our relationships. In our families. In our homes. In our connections to people we already know. Here, in these contexts, care has impact. When impact occurs in informal contexts, it’s not called what it would be in any other context. Here, it’s called love. Love and care matter, even though you may not hear anyone talk about it. Here, your efforts matter. Here, you matter. Here, you must know you are making a dent that exists, though it may not be noticed by others.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
Only 3 letters—YET—but these letters can change so much. 3 simple letters that may be present in our minds but are rarely stated out loud. There is incredible value in a growth mindset, rather than a fixed mindset. In a growth mindset, you believe your capacities are changeable as the presence of YET reminds you of ongoing possibility through effort, practice, and feedback. You haven’t learned something yet. You haven’t been able to master an activity yet. You haven’t achieved a goal yet. Here, the presence of yet is vital to growth and resilience.
Most people can openly embrace this aspect of a growth mindset because it implies possibility, a view of the self as a set of potentials determined by effort, feedback, and flexibility. However, there is more to a yet mindset than individual achievement and growth.
Caregivers can teach us about a connection mindset that is often cultivated in everyday caregiver experiences. This is the aspect of a yet mentality that is rarely talked about even though it should be because it shapes how we can relate to one another.
Caregivers distinctly listen to others in ways that enhance connection.We can hear that which others may not even say. Other people listen to only what is said. Caregivers listen to what is being said and what is not being said out loud as they insert a yet into almost every dialogue with another person.
Some may say, “I am not a caregiver.” Caregivers hear something more, “You are not a caregiver yet.”
Some may say, “We are so lucky. Everyone is healthy and doing great.” Caregivers hear something more. “I am so happy for you. Enjoy every precious day you have, but know too, that this cannot remain the same.”
Some may say, “My baby sleeps through the night.” Caregivers hear something more.“I am so pleased your baby sleeps through the night now. Please know that tonight may not represent what happens in nights to come.”
Some may say, “I want to spend money on something extravagant. You only live once, right?” Caregivers hear something more. “Yes, live and live well now, but also know that so-called once in a lifetime experiences make for good lyrics to songs but life can also feel remarkably long, over and over again, years on end.”
At first glance, what we hear—beyond what is actually said—may sound pessimistic and negative. But it is not.
People marked by ongoing care experiences cannot un-know what they know and what they have lived.
Born of experience and wisdom, this type of yet orientation does not come from a place of jealousy or resentment. It comes from a place of connection that allows for the recognition that the parts of life we don’t want, do not simply go away because we don’t think or talk about them. Not only do they exist, they can also be the reason(s) for finding ourselves in others.
People who have been changed by life experiences can lean on a growth mindset, but also a different kind of growth than most people conceive. A connection mindset isn’t just about growing, but about growing toward others.
Other people may inhibit connection because they seek to know themselves by highlighting how they are different.
“I don’t have anything in common with her, she’s a caregiver and I’m not.”
“I don’t have anything in common with him, my spouse is still alive.”
“I don’t know what to say to him, his son died in the NICU. Our children are healthy.”
“I can’t relate to her because her child committed suicide.”
Here, the underlying assumption is that certain experiences are unusual, unique, beyond the possibility of happening to us and those we love. From this orientation, suffering is exclusive. Grief is aberrant and unlikely. This perspective is vastly different from a connection mindset in that it doesn’t allow us to be excused from the inevitabilities of life that can be a source of connection with everyone we meet and know.
From this perspective, people are much more likely to experience connection by highlighting how they are similar to others now, or will be soon enough.
Grief
Illness
Incapacity
Disappointment
Suffering
Aloneness
Sadness
These aren’t viewed as experiences only some people experience. These are experiences that can’t be ignored. These are experiences that can’t be neglected. These are the experiences that are inevitable parts of our life experiences. These are all of our experiences.
When yet is the center of all that is said and not said, we cannot divorce ourselves from others’ situations. We cannot ignore others’ predicaments. Others’ challenges are challenges we may soon experience. Others’ joys are joys we too may be able to anticipate. Regardless, we are always implicated. We are never surprised by what is (not) happening because nothing about life and living is off limits and beyond possibility.
When this happens, compassion is not about feeling sorry for people who have a “worse” life than us as much as it is a more expansive type of compassion that includes not only people who share challenges, but a compassion that also accounts for what could be, what might be, and what inevitably is a part of living a life of relationships that always connects us to and with others.
A yet mentality, no doubt, makes possible individual growth and accomplishment, but it also does so much more. It also allows us to see ourselves in others’ reflections and constantly encourages us to see others in our own.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the upcoming book, “The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
No one says it out loud—but it’s always there. If you are in a relationship with someone, and your existing relationship is the reason you are a caregiver for a parent, child, spouse, sibling, etc., your kind of care is considered “informal.” Formal caregiving, like a nurse or doctor, presupposes no prior relationship. Informal caregiving always presupposes a pre-existing and ongoing relationship and that’s when everything changes . . .
You are never only a caregiver.
Informal caregiving means you are caring for someone because of a prior relationship that was once so clear. You were once only a spouse. You were once only a son. You were once only a parent. And then you add something else to the mix—caregiving—that renders your relationship distinctly different. As Donna Thomson and I talk about in our upcoming book—“The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver,” this evolution is what makes caregiving so disorienting because care always changes your relationships.
Informal care is what happens when the parts of our existing relationship that we hold to be sacred are trespassed by the care role. Informal care requires us to rewrite our relationships in ways we might never choose but can’t ignore.
Our care isn’t formal and objective, but overwhelmingly personal, because this kind of care isn’t born from expertise but from ongoing relationships. It is our love for another that makes the informal caregiver relationship possible.
Yet, informal caregiver relationships exist without clear rules and guidelines. There are no standardized protocols for these kinds of relationships. Rules make a lot of sense in the public sphere. They can be codified in advance because they are widely understood. These rules “work” because of mutual acceptance of what they mean and how they should be respected. For example, when approaching a stop sign, we don’t think about the merit of stopping, or whether it’s good to stop. We simply stop. Habits nestle deep within such rules and clarify our everyday lives so we don’t have to think every time we approach a stop sign. We just react because we know that’s what is expected of us and it’s what we expect of others.
But when informal care primarily happens in the home—in the private spaces of our lives—something different unfolds. Informal care is similar to what happens when people approach a stop sign within a block of where they live. The stop sign is still a stop sign, but it’s not considered as real as a stop sign that’s in an unfamiliar place, far away from where we live. This stop sign, the one in our neighborhood, is different. We see the stop sign, but because we’ve seen it hundreds of times before and are so accustomed to our surroundings, familiarity transforms that universal rule into a mere suggestion, not a requirement.
Because of the familiarity of your ongoing relational status that always accompanies your care role, you and your caregiver voice are more likely to be considered “less real” than care provided in public health settings. This is the ongoing paradox of the caregiver role.
We know our care will be differently perceived and received by those closest to us, but we also know that our care is more dynamic, multi-layered, and tension-filled than possibly any other relationship we might experience.
Informal care doesn’t happen apart from our lived experiences, it happens within a deeply overlapping network of relationship meanings and love and shared history that make us uniquely qualified for this most vital but misunderstood life relationship.
“Who would you most want to share a meal with?” is the question. If the answer is not a celebrity or famous person, the response almost always involves wanting to share a meal with a loved one whom you can no longer laugh with, interact with, or learn from. Someone you care about who is no longer present. When caregivers hear this question, they know of another option. But it’s not an answer most would understand or feel comfortable with. What if the response to this question involves naming someone you love whom is still alive, yet different than they used to be?
When most people think of conversing with another, they think of talking to one person. Caregivers, however, know that interacting with one person is a misnomer.
It’s simply inaccurate. In intense and long-standing relationships, like caregiving, we are always interacting with a composite of past experiences and memories that we can’t help ourselves from bringing with us into every present, unfolding interaction.
When our loved one changes because of illness or incapacity, we too are changed. The person in front of us is different than they were in the past. And if we are changed and the person we care for is changed, then our relationship is inevitably different. And what can live within this difference is a profound kind of loneliness and disorientation called relationship grieving.
“I am with someone I know so deeply, yet, it is because of our shared history that I feel more alone than I might ever have felt if I was actually, physically alone.”
Giving voice to the deep awareness of what is no longer possible in your relationship is difficult to translate. If you were to proclaim the loneliness you feel when interacting with the person you care for—this very person you love so dearly—then what would others think or say?
Yes, you are interacting with someone you know but you are also interacting with someone you do not know. It is in this ongoing tension that you may grieve in ways that others won’t notice because they only see what is present, not the fact that absence and presence always disguise themselves as one another for those of us in the midst of relationship grieving. Caregivers interact with their loved ones on a plane of multiple dimensions. They are never just communicating with the person before them.
You are aware of multiple possibilities that most others can’t see or know.
The awareness of what is happening between you and your loved one provides the foreground of your interactions and appreciation of what used to be forms the background. The challenge of relationship grieving is that background and foreground are constantly shifting.
They don’t arrange themselves based on chronology. Instead, they blur into one another, defying time but always becoming more prominent and difficult to let go of when in the company of our wants and needs and desires.
Relationship grieving means trying to convince ourselves that we need to adjust our relationship expectations even as we are hearing the sound of our loved one’s ever-familiar voice. The relationship habits we had originally created with our loved one don’t simply fade away.
Relationship habits have to be rebuffed and silenced, time and time again, as if they live beyond us in ways that require us to repeatedly say ‘no’ to our relationship memories so we can continue to say ‘yes’ to the person we are interacting with now.
Relationship grieving means believing that one smile, one laugh, or one moment of connection is evidence that the way your relationship used to be is now, again, within reach. And then your expectations go headlong into another interaction with this same loved one that sounds and acts nothing like you had expected. Hope quickly runs into perceived absence. And connection is overwhelmed by an unwavering awareness of difference. These realizations are jarring, not outwardly, but within us, as new realities seem to take away from us what we most wanted to happen between us—but doesn’t or can’t.
Relationship grieving means not being able to explain why you are grieving even though your loved may be next to you. Yes, you are with someone you love but the person you are with may no longer be the person you remember. Or the person you once loved. Or the person that made possible the you and us of your relationship so special and distinct.
Relationship grieving involves being constantly aware of the simultaneous presence of your loved one’s absence and the absence of your loved one’s presence.
The question, “How is _________?” is so much more complicated than it sounds because it’s missing something. It’s missing a vital, but almost never asked follow up question. “How are you adjusting to your new relationship with someone you already know so intimately?”
Asking this one question may just open the possibility of understanding as it recognizes that caregiver relationships don’t just change how we interact with someone we love, they also impact how we understand ourselves in our evolving relationships.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
People surround us throughout most of our young(er) lives. At home, we are likely surrounded by others, sharing rooms, eating together, or at least within the sound of others’ voices. At school, we sit next to peers all day and we are part of teams or activities where the “we” is constantly present.
And then, one day, something changes. One day, without notice, we can’t find our peers. When we become “adults,” we find ourselves increasingly alone, looking, searching, and waiting for people we can connect with meaningfully. In the midst of life’s most challenging transitions, we realize that being peer-less is indeed perilous . . .
Peer pressure is more than we once believed it to be. Too often, we put together “peer” and “pressure” without even thinking. We’ve been warned about the dangers of peer pressure. “Be careful, people will lead you down paths that may be harmful.” “If you hang out with the wrong crowd, you might be encouraged to make bad choices.” “Just say no,”is the mantra that resonates throughout our collective consciousness. But peers are more than pressure. Peers aren’t just people we randomly meet online or people whom we may happen to work next to. They are people we view as similar in some significant way. People we believe are like us in ways that make us pay attention. People we believe to be on a similar path as ourselves. People we believe are facing similar challenges. People we can look to for guidance, not because they are perfect, but because they are imperfect in ways that means something to us.
A peer-less network means not only are we more vulnerable to feeling lonely and apart from the world, it also makes us more likely to feel like we have no control of how we respond to the situations that are shaping us.
Finding meaningful peers—not public figures—is more difficult than most people believe. Without access to meaningful peers, we are likely to become (or stay) lost. Caregiving, grief, illness, recovery, addiction, and feeling lost call forth the need for landmarks. These essential social landmarks are not found on stages in front of large audiences. They have little to do with the number of subscribers you have. It’s much more intimate than those barometers designed for public assessments of value that show only “results,” not process.
When peers are not immediately near or around us, finding them becomes much more challenging. Finding and connecting with peers—people whom we respect and value—is one of the most essential social skills that we need to lean on when we are attempting to navigate parts of life few of us planned for.
It means trying to meet people as they are, not as they want us to believe they are. It means allowing others to know us as we are, not as we need others to think we are. It means reaching out when we feel most vulnerable and least likely to open ourselves up to others. This is no easy task.
Peers make possible perspective—not sympathy. Only when we are lost do we begin to look at our situation with an intensity that seemed unnecessary when life made so much sense. Life interruptions sharpen our senses as we scan the environment for clues as to where we are, and possible ways we can get to where we want to be. Without others’ guidance, we are left to lean on those who wish us well, but do not know what we are experiencing. People who can sympathize but can’t fully understand the constraints and opportunities within our particular situations.
Their voices are valuable and comforting, but they cannot give us perspective. No one has perspective. It’s always shared and created.
Peers can hold us accountable in ways others simply cannot. The people we sit next to at work, or even in our own house, may not be our peers. Amount of time spent together and shared history aren’t necessary for someone to qualify as a peer. Peers aren’t defined as the people around us. Instead, they possess something that most others do not: our respect. People we believe we can relate to. People we look to as guides for how we want to live our lives. People whose life story stops us in our tracks, and moves us in ways others may overlook or dismiss. A response. An attitude. An endurance that speaks to us in ways that inspires. People whom we believe can understand us in ways others may not be capable of, despite their best intentions. People we respect.
Peers can help protect us (from ourselves) in ways we may not be able to. If we don’t cultivate audiences whom we respect, we will miss out on realistic feedback and meaningful assessments of our goals, responses, and choices. Because respected peers can understand, they can give us permission to be more compassionate to ourselves in ways we might never allow. Respected peers give us permission to voice our faults and find value in our experiences in ways we too often will not allow ourselves to appreciate.
Just as people make pilgrimages to mountaintops or ocean vistas to find perspective in something larger and more expansive, finding respected peers is necessary to help us view ourselves from a new point of view. No matter how hard we try or how much we know it would be good for us, we can’t generate different perspective(s) alone. Cultivating respected peers isn’t an option; it’s a necessity when life changes on us in ways that begins to change us.
Maybe this is premature as we’ve only just begun the New Year, but I don’t think so. As most people’s resolutions have come and gone—as easily discarded and forgotten as they were created—there is something to be learned about the fascination with New Year’s resolutions. Instead of just focusing on the specifics of people’s resolutions—losing weight, exercising, saving money, quitting some unhealthy habit, beginning a healthier habit, or spending more time with family and friends—it’s important to consider why listening to other people’s goals may have left you feeling even more alone and disconnected from those around you.
(1) Other people’s resolutions reflect desires and intentions, not necessities. If only 8 percent of people maintain their resolutions, it tells us more about what people want to do than what they must. Sharing common desires is important because it can bring people together. Yet caregivers do not have the luxury of not fulfilling their goals when their days are defined by daily acts of care that merit little, if any, notice. These promises aren’t necessarily optional and they can’t be neglected or ignored. Their invisible and unheralded tenacity occurs whether others notice or not.
Caregivers care, day in and day out, engaging in acts of care that highlight what resolve really looks like, up close and in person, day in and day out.
Let’s raise a glass to all who do that which is deemed necessary, not because it will mean more attention or acclaim, but because you care. And because you care, your resolve is played out by how you engage your loved ones.
(2) Other people’s resolutions feature change as the ultimate state of perfection. The act of making a public resolution, late at night at a party, surrounded by others, is an alluring act of identification by which sharing is achieved by pointing out what is incomplete. Resolutions hold out the promise that change, and change alone, is the means to a better life. At first glance, this type of goal setting is admirable because it highlights a desire to work toward our better selves.
Unfortunately, however, other people’s resolutions almost always reinforce the belief that the only resolutions worthy of notice are those that are seemingly within our control. Characterized by action verbs, these resolutions celebrate the fact that we can—and should—be able to change our lives.
Once again, this is a wonderful gesture—except when life inconveniently reminds us that our health, or the health of someone you love, may not conform to any amount of desire or resolve. Caregivers know that gratitude, not simply perfection, is also worthy of celebrating because gratitude doesn’t depend on change as much as it asks us to see anew what is happening in our lives.
(3) Other people’s resolutions are so individualistic that they leave little room for connection. “I resolve to . . .” is as much about the “I” as what follows any proclaimed resolution. Such individualistic goals ring hollow to those who recognize that the “I” is always integrated into countless relationships and expectations constantly reminding us we are deeply embedded with and amongst others.
Though others’ resolutions too often emphasize their distinctive individuality, caregivers are always keenly aware of their dependence on others.
Caregivers think and understand the language of the “we” and are more likely to speak of relational-based resolutions that both acknowledge their interdependence and celebrate what can be resolved together.
(4) Other people’s resolutions place too much value on new beginnings rather than on continuing something you’re already engaged in. Learning a new skill, picking up a hobby, or finding another job are worthy resolutions, but they overplay the value of the new and leave little space for recognizing the value of endurance. Caregivers’ experiences remind them that caregiving doesn’t provide clean and impressive before and after stories nor do they allow you to be able to resolve to wipe away your past.
Instead, caregiving requires you to constantly integrate your past into an unfolding present.
Instead of raising a glass to the possibilities of a completely new you and new life, isn’t it time we begin raising our glasses to the resilience and ingenuity of those of us who must constantly reconcile our past with our present to make a meaningful now that has little, if anything, to do with newness?
After New Year’s resolutions dissolve into the dawn of the never-ending tomorrow, the values caregivers cultivate daily are the values that matter most: appreciation, constancy, gratitude, the ability to create opportunities for wonder and appreciation, finding and enhancing connections with those around us, and deep resolve to endure and create value within constraints. These are the values that bind us together and ground us in what matters most, and they are the very values that can remind us that we are not alone. Although these values will almost always be omitted from other people’s New Year’s resolutions, they live with us and between us all year.
When was the last time you felt deeply connected to a group of people? A deep and genuine sense of connection is becoming ever more rare in modern life. Everyone needs to feel connected, but a sense of connection is most vital when you are in the midst of a life-altering role that is transforming you and your relationships. If connection is so important, then why is it so hard for caregivers to feel as if they are a part of something larger then themselves?
There is no common beginning to our most important informal life roles. Let’s face it, what experience do we set forth on, at the same time, with other people? Yes, there are plenty of marked beginnings in contemporary life, but our individual beginnings seem to rarely coincide with others’ beginnings. A death of a loved one may mark a new beginning, but not for those in your friend network. Getting laid off from work may symbolize a new beginning, but not for those in your extended family. The need to provide care for a loved one may signal a new beginning, but not for those you work with. Beginnings come at us all the time, but too often they are conceived and experienced as private and individualized experiences.
School may be one of the few cultural experiences in which there is a semblance of a “beginning” that is marked and collectively acknowledged. The “first” day of school may be a singular experience in cultural life in which we begin something with others and anticipate responding together to shared experiences and challenges.
Beyond school, however, much of our lives are spent trying to connect with and find others who are experiencing what we are experiencing.
You may start a job at the same time as others, but even this onboarding experience can too easily become conceived as a private endeavor restricted to a one week training session that quickly fades away upon completion. The birth of a child is a clear beginning for parents, but beginnings aren’t simply about when a new role comes into existence. It’s also about what happens the day after, the week after, and months after you are initiated into a radically new role.
Shared beginnings forge deeply meaningful bonds because they allow you and others to lean on a shared reference point that marks your individual and collective development. New experiences are scary because they seem to defy prediction and require us to constantly make sense of what we are experiencing without knowing what will happen next. Forging a path forward in uncharted territory requires constant awareness because we don’t know what we (don’t) have to pay attention to. Quickly, this all-encompassing focus becomes exhausting and overwhelming. But exhaustion is also a reason to turn toward others whom you believe are “in” it with you. This “not knowing” is the reason, the perfect reason, the only reason necessary, to connect with others.
Shared beginnings are deeply charged opportunities for connection because they can minimize differences that you once believed existed between you and those around you.
New recruits to the military or first-year medical students understand this common phenomenon as an intense type of “boot camp” experience in which who you were and what you once believed becomes less influential than the overwhelming impression that you are no longer responding alone to what is happening. You are not alone but being formed—together—by what is shaping you and others in your common circumstance.
Too often, however, the costs of being separated from common beginnings has significant consequences that are rarely acknowledged but almost always felt.
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we are experiencing is distinct and unique?
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we are enduring is unlike what others are experiencing?
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we enduring doesn’t have a place to be shared or talked about?
Separated from others’ beginnings, is it any surprise we come to the conclusion that what we are enduring isn’t worthy of being shared or talked about?
Beginnings don’t just mark when something starts. They mark how we respond with others. Shared beginnings can be the glue of connection, essential opportunities to find and connect with others responding to similar challenges.
Sometimes, integrating ourselves into a “we” means gaining parts of ourselves that we know bind us to others. Sometimes, seeing how we are being commonly shaped by factors beyond our control means finding parts of ourselves we can recognize in others.
We may not be able to choose what beginnings find us, but we can choose how we think about our care experiences. International care advocate Donna Thomson and I explore this care transformation and many others in our upcoming book, The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver. Learning how to allow yourself to find connection with others may be the most important step you take in your care journey because it’s not always about stepping forward as much as it is about reaching out.
Most people talk about thoughts as if they come to us only in times of inspiration. A light bulb goes off. An idea suddenly comes to you. A thought passes by and then is gone as quickly as it came. Although this is how some people may experience thinking when life is going as planned, this process doesn’t come close to describing how someone in distress interacts with their own thoughts. When in distress . . .
Certain thoughts can imprint themselves on us and in us. When confusion flourishes, thinking isn’t free and open to all of the world’s possibilities. No, thinking under duress is overwhelmingly restrictive, not creative. It doesn’t allow us to notice much of anything else. It conceals more than it reveals as the thoughts that come to us when we experience stress are a type of extreme focus. But this isn’t the kind of focus most people talk about. This laser focus isn’t on anything or anyone in front of you, rather on something that happened. Yesterday. A week ago. A year ago. Something or someone no one else can see, yet you can’t let go of. Something you wish you had said. A conflict you can’t forget. Words that hurt and stay with you as they play over and over in your mind without interruption.
Peace of mind is elusive when so much is being asked of us as our attention is being moved in ways that we seem to have no control over. It’s as if we are always in two places at once: listening to ourselves and the person in front of us. We can try to perform this dance for a while but it’s exhausting. We can’t really listen to the person or situation before us because we’re also trying to attend to what we are preoccupied with. We see their lips move, but we don’t hear them. They see us, but they may never know what we are thinking.
Certain thoughts are difficult to let go of even when we desperately want to be freed from them. When life is unfolding in ways we anticipated, it is accurate to say we are thinking about something or someone. Under the influence of uncertainty, however, we are no longer thinking about something. When we feel powerless and incapable of impacting events and situations, thoughts find us even though we don’t want them to. They turn up when the lights are turned off. They are loudest when there is a moment of silence.
When distressed, we experience a paradox. We can’t seem to free ourselves from certain thoughts because the more we give ourselves to that worry, that hug we never got but so desperately wanted, that compliment that was given to someone else, the more attention it demands. And the more attention it demands, the more it grows.
When we get in this mindset, we believe that if we would simply give it more time and attention, it will be polite enough to disappear into the background, if only for a short while. But that usually doesn’t happen.
Ironically, the more we pay attention to certain types of thoughts, the more we devote ourselves to them, the louder they become. In the process, all that is before us becomes background noise as we become consumed with chasing down thoughts far beyond where we are.
Certain thoughts can contaminate the way we think. When we are tired and exhausted, we are at our must vulnerable to become consumed with a regret, a frustration, an argument, an interaction that begins to contaminate other ways of thinking. Destructive patterns of thinking can quickly emerge in which we lose the capacity to think about what most distresses us in creative, novel, or different ways. When this happens we are not really thinking about something—from different perspectives, with reflection, checking our own reactions with the voices of others—as much as we are thinking about something in the same way, over and over again. Thinking about something—again and again in the same way—can quickly become familiar. And then, familiarity becomes normal. Over time, normal becomes expected not because it is helpful or good or accurate, but because it is what we have become accustomed to.
Not all thinking is created equal. How we feel about something and what we believe we can do to improve or change a situation changes not simply what we think about, but also how we think. For those of us who are in highly distressing situations, being told to think “logically” or “abstractly” or “rationally” about someone or something, can be a type of insult because it assumes we have the luxury of stepping outside of our situations. That sounds noble, but it is often not possible.
We accept the biological reality that people under the influence of alcohol and drugs physiologically respond to stimuli differently. Isn’t it time we begin accepting the fact that the influence of exhaustion and stress also means we will think differently about the situations we are faced with?
In the book I wrote with co-author and caregiver advocate, Donna Thomson, The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver (June 8, 2019), this is exactly what we do as we explore the ways in which caregivers are shaped by experiences that can’t be understood apart from the influences of care, exhaustion, stress, isolation, and relationships that shape and remake who they—we—are and how we respond.
Each of us inhabits different roles throughout life. Whereas everyone can point to a calendar to explain the last day they were employed at a particular workplace, informal roles don’t have clear endings. Too often, caregivers are unprepared to make sense of what happens when the role they occupied continues shaping them long after others believe their caregiver role “ends” because . . .
Caregiver tasks may end but not the parts of you that were shaped by the role itself. Others may believe that caregiving ends when your loved one moves into a nursing home, assisted living facility, or when a loved one dies. With this noticeable shift, you are expected to seamlessly return to your previous life. But this expectation doesn’t often fit with how you see yourself. Too much focus is on what you did in the care role and not enough attention is given to who you became throughout the process. The disparity between what you thought you would feel—one step closer to your old self with each passing day—and how you actually feel—a revisiting of unease with each passing day, can’t help but create more confusion and feelings of inauthenticity.
“Life can now return to normal,” others proclaim. But what others consider normal may no longer be what you consider normal.
“Now you can start over,” you are told. Start over? Doesn’t that mean denying that you were living while you were caregiving?
“Now you can get your self back again,” you are reminded. But what if you don’t want to return to your old self?
Although family, friends, and colleagues may sincerely believe that life can return to normal when caregiving “ends,” you know that’s not really possible.
Caregiving may have radically interrupted your previous life, but somewhere along the way, it became a guide to living. You are not who you once were.
Your understanding of normal has been irrevocably changed.
The clarity of your caregiver role has been replaced by an overwhelming sense of ambiguity. The emptiness of not knowing what to do in response to your role change can overwhelm in ways you couldn’t have predicted. The exhaustion of care is replaced by a different kind of exhaustion: How do I explain to others that the values that I developed in my caregiver role are still with me?
The clarity of knowing what was expected of you as a caregiver, however challenging, is gone. Now, the uncertainty of what you are to do without a clear and overriding purpose of care can’t help but make you doubt who you are and what you should be doing. When you were a caregiver, every day was clear in its purpose as the routines of care were the ultimate guide. Unending exhaustion was part of your everyday role, but now you find yourself exhausted by the apparent purposelessness of the everyday, not marked by life and death, pain and suffering, love and connection, but by trivialities that no longer make any sense.
How do you explain that you miss parts of yourself as a caregiver, or at least the parts of your role that made it clear what you were supposed to be doing and how you were supposed to act?
Care doesn’t stop when caregiving ends. Others may no longer call you a caregiver, but the impact of your experiences doesn’t just evaporate the moment your “caregiver” role is omitted from how others label you. Just when family and friends believe your caregiving role is over, you may begin thinking about your experiences in ways that may have been too difficult to comprehend when you were so deeply in the experience. Care isn’t something you can turn off immediately, or even slow down when the caregiving role changes. Though others may no longer refer to you as a caregiver, the care that made you a caregiver has no shelf life.
When it comes to roles that shape how we think about ourselves, there is no clear ending point. Caregiving doesn’t end even though the responsibilities that once characterized that role may cease.
Caregiving isn’t just something you give; it’s something you become.
You don’t “recover” from being a caregiver because the experience has become such a vital part of who you are that to let go of that part of yourself would also mean relinquishing everything you learned in the process of caring for someone you love.
Feeling lost used to be a rite of passage. Before GPS, anyone driving in a car, at one point or another, knew what it was like to be lost. That feeling of knowing where you want to be but not being able to find your way and get to where you want to go. Here, in this very moment—whether in a car or in life—something happens to us. Too often, we are so concerned about not getting lost that we rarely pause long enough to consider how feeling lost changes how we think when we are at our most vulnerable.
Time acts differently. There is an urgency to being lost that is absent, or at least hidden, when we don’t have a clear destination in mind. Perhaps it’s because in the course of everyday life, we don’t always have clear goals. When we want to get somewhere in particular, however, urgency emerges. Sometimes, it’s because we feel the need to get somewhere at a specific time. But there’s also a distorted rhythm to being lost. Time no longer cooperates. It appears to go by faster and slower—taking us out of the normal rhythms that allow us to ignore time. When we are lost, we become highly sensitized to the passing of time, transporting us into a hyperawareness of how the need to get somewhere affects our body.
When we are lost, time is no longer something that we look at on our watches—it’s something that begins acting on us as our body tenses up, our pulse quickens, and our breathing become increasingly distressed.
In the midst of growing uncertainty, we look to time for guidance, but because we don’t exactly know where we are and how long it might take us to get where we feel like we need to be, time becomes meaningless as it doesn’t allow us to predict anything.
Everything demands our attention. When we feel like we know where we are, we know what we should pay attention to and what we don’t need to think about. Mindlessly driving to work is comforting because the journey is characterized by what we don’t have to notice. Guided by habits of routine means not having to pay attention to directions, the right turn, that curve, or that long stretch of highway. When guided by habit, our bodies and minds collaborate with our environment so we can become engrossed in our own thoughts—a favorite song, a rehearsing of what might happen later that day, or replaying a conversation from the previous night. We are on autopilot. When lost, however, everything demands our attention. Everything has possible meaning. Every street name might be the path you are looking for. Every landmark might be a clue to finding where you want to be.
When everything around us has possible significance, we can’t help but feel overwhelmed. We don’t feel like we are moving forward as much as our surroundings are streaming at us. Because we can’t anticipate anything, signs come toward us—we don’t pass by them. Only when a street sign is upon us can we realize that was the very street we wanted to take. Clues appear and disappear in such short notice that we can’t take a moment’s break. Our attention must remain fixated on what we are doing because our senses need to be heightened to account for every possibility. As our hands grip the steering wheel and our eyes hastily scan, disorientation means not being able to free our minds from preoccupying ourselves with everything that is around us
Self-doubt becomes magnified. When we have to pay attention to everything, while we are in the midst of our journey, we can’t help but question ourselves. “Was I supposed to have taken a left at that last street?” “Maybe the directions are wrong?” “Is this the path I’m really supposed to be taking?” “Should I turn around?” “Should I ask someone else for help?” “Where did everyone else go?”
When we don’t know where we are or where we are going, the voice in our head becomes our own navigational device that doesn’t as much give us directions as it makes us question every decision. And the longer we feel like we are lost, the more we begin to question ourselves as each decision becomes more and more important. As every choice becomes magnified, we can’t help but believe there is only one right way to get there. And if there is only one right way to get there, then yes, every action and inaction is consequential.
At this point, lostness isn’t only about where we are going as much as it’s a charge against ourselves. “I’m terrible at directions.” “I can’t believe I can’t figure this out.” “I should have spent more time preparing for this journey.” “I have no idea what I’m doing.” As the voices of self-doubt become an unending monologue, we feel less and less connected to what is around us. Lostness is no longer a geographical description as much as a personal and scathing indictment. “I am lost.”
The voice we use to talk to ourselves isn’t supportive and encouraging. It’s nasty and unrelenting. It’s usually full of contempt and almost never self-forgiving. In the silence of our own thoughts, we treat ourselves in ways we would never treat others. Our self-voice never, ever apologizes.
Perspective shrinks when we are lost. When threatened by not knowing where we are or where we are in relation to where we want to be, we become single minded. Feeling lost isn’t simply about getting where we want or need to be, it’s also a statement about our incapacities. “If I can’t even find my way, how am I going to do what I need to?” “Why are the simplest things so hard for me?” “Why does this always happen to me?” “I must really be losing it.” In the process, the world around us shrinks. At the very moment when our surroundings are drowning our attention in constant stimuli, we lose our ability to see beyond our immediate circumstances.
We can no longer see ourselves and our journey for what it is. It represents so much more.
It—our journey, our need to find our way—becomes a preoccupation. Nothing else matters. We push down faster on the pedal. We take more risks. We don’t fully stop at the stop sign. We turn away from others. And our desire to find something real and concrete becomes our sole preoccupation at the very moment when our peripheral vision shrinks allowing us only to see what is immediately before us, distorting everything.
And then we arrive at our destination. We arrive but we are different. We are where we thought we needed to be but we are depleted and exhausted. The first voice we hear startles us because it’s the first voice we’ve heard in a while that isn’t ours. The first voice we’ve heard that isn’t yelling. We are there, but we are different. And then we spend the rest of the time camouflaging the fact that it—the journey—has taken too much from us for us to share without looking silly and embarrassed.
Being lost isn’t a description of a place; it’s an experience that shapes how we think about ourselves and our capacity to get where we want to be.
Being lost isn’t something we’re allowed to talk about. Being lost changes us but we can’t let anyone know this because it’s a state of mind that is seemingly temporary. We admire people who always know where they are going. With GPS, we’re led to believe that being lost is out of style. Not something anyone has to worry about anymore. Unfortunately, that’s not true.
People are still getting lost, every day, it’s just we no longer want to acknowledge that being lost is part of being human and it often has nothing to do with a destination, but a change in how we think about ourselves in the midst of struggle. Isn’t it time to create spaces to talk not only about destinations, but also what it means to be lost? We don’t need others nearly as much when we’re at our destination, but we need each other most when we are lost and under the influence of self-doubt.
