I’m Not a Caregiver

You have a choice before you. In one room, you can listen to someone speak about how to develop executive leadership and presence. In another room, you can listen to someone talk about caregiving. Which room do you think most people will walk into? Which speaker do you think most people want to hear from?

Who doesn’t want to be a leader? Contacts can be made. Tips can be gleaned. Business cards can be exchanged. Ladders of success can be climbed. Leadership is aspirational—it provides a clear direction toward something better in the future. Growing. Learning. Evolving. In this room, promotion, advancement, and opportunity are possible and seemingly within reach.

Who wants to learn about caregiving?
The reality is that few people will volunteer to come into the caregiving lecture. Caregiving doesn’t get you close to people you want to meet. And there’s no ladder to advancement anywhere to be seen. Growing? Learning? Evolving? Really?

The label “caregiver” is charged with all kinds of meaning because it signifies so many different things to people. Whatever you call it—informal caregiving, unpaid caregiving, intense caregiving, total caregiving, extreme caregiving, caretaker, carer, chronic caregiver, care partner—few want to give themselves over to this identity and all that it implies.  And it’s not because they don’t want to care for someone they love or because they’re not caring. The term caregiver is considered stifling and suffocating because few of us want to find ourselves trapped within the confines of this constrictive label. It doesn’t breathe. It’s too hot. It doesn’t allow you to be who you want to be. It doesn’t appear to look good on you, nor does it have the look you expected. Although caregiving is becoming an increasingly common and necessary part of life, why are so many people reluctant to self-identify as caregivers?

No, not me. I’m not a caregiver.

Most caregivers are loved ones who provide, on average, twenty-four hours a week of unpaid care.  Yet the one role most of us will assume at some point in our lives—whether we want to or not—has no deliberate onboarding or socialization process, making it difficult to prepare for caregiving or to even know when the role begins.

Unlike most other roles in life, people don’t dream about caregiving. They—we—don’t preemptively think about what this experience will look like, how it will change us, what it will ask of us, or how it will impact our existing relationships. In the quiet moments of life, there is little motive to collectively talk about care at the dinner table or with family and friends. Discussions only seem to make it into our everyday conversations when accompanied by caregiving’s silent partner: urgency. We anticipate and talk about all kinds of relationships—romantic, friendship, parent-child, spousal—but caregiving seems to come at us unexpectedly, leaving us perpetually off balance. Typically, one person is designated (or drafted) to attend to all things care related—personal, emotional, financial, legal, and medical, as well as issues of companionship, transportation, food, shelter, and safety—even though the idea of a caregiver mistakenly reinforces the belief that care is an individual task rather than a collective enterprise.

I’m not really a caregiver; that’s for professionals.

Too often, we tell ourselves and others that we aren’t caregivers because the title “caregiver” means you must have special training and fancy titles after your name. Formal roles have acronyms—MD, RN, LPN, PhD, JD, LCN, LCSW, PSW—constantly informing people of their legitimacy, purpose, and usefulness. Informal, family-based, and nonpaid roles like caregiving, however, are often invisible because there are no performance reviews or accreditations reminding others that what is happening is real and important. Without the legitimacy of role formality, caregivers are left without needed guidance and direction along their journey.

Medical professionals, like doctors and nurses, have an inherent advantage over caregivers when it comes to role legitimacy. Through years, they have earned two magical letters that follow their names–MD or RN. The credentials give patients and family members permission to know that, amid the uncertainty of physical pain or suffering, someone is different enough from them—in education, training, expertise, experience—to possess the possibility of answers and relief.

Informal caregivers are rarely, if ever, considered experts by family and friends. They may be thought of as caring and loving, because caregivers are familiar. Consequently, what caregivers say is typically interpreted as a hint or a suggestion, and others may feel empowered to critique, question, or sometimes oppose.

But there’s something more that separates professional caregivers from informal caregivers. People make appointments, in advance, to see a doctor or nurse. They dress up, in advance, knowing they will be seen in public. They typically drive to see a doctor. They patiently wait, in a waiting room, because these efforts (and hassles) are believed to be worth the benefit of finding answers. Appreciation and respect almost always follow such sacrifices.

Too often, caregiving is undervalued because care occurs beyond other’s awareness and appreciation: before and after “official” spaces of care, before and after diagnoses, when others aren’t looking, when others are sleeping, when cures and answers are elusive and impossible.

I’m just doing what I can

Although there are caregivers next door, down the street, and in the next cubicle, caregiver experiences often go unnoticed because there are no public ways of acknowledging their efforts. Unlike almost any other relationship, there are ostensibly no discernible stages or turning points in a caregiver relationship. And unlike almost any other type of formal role, there are no promotions, annual reviews, accolades, or opportunities for feedback.

Parents, relatives, and friends won’t be able to brag about your experiences. There are no “schools” of informal caregiving—no Harvard or Stanford to use as a guiding goal from which others can respect and admire. Others may speak highly of you and your efforts, but it begins and ends there.

I’m different from other caregivers

Because the label “caregiver” is so vague and broad, it becomes a way in which people can assert uniqueness and articulating why they’re not caregivers. Resisting the label is a way of refusing an identity that they don’t want, or don’t believe relates to their situation. This resistance has many forms. “I’m too young to be a caregiver.” Or “I work, I don’t have the luxury of calling myself a caregiver.”

Caregiving isn’t a women’s problem or a men’s problem, as men and women are equally likely to be caregivers. Rather, it’s an ongoing challenge that requires constantly negotiating the various parts of our selves, relationships, and responsibilities. When a majority of working caregivers experience work-related impacts as a result of their dual working-caregiver roles, declaring “I am a caregiver,” is neither a comprehensive nor accurate statement. You are a caregiver and you are also something else. For some of us, that something else is an informal set of obligations and duties that never stop piling up. For all of us, caregiving exists within already existing relationships and obligations. In a world with bills, contracts, expectations, mortgage payments, passions, desires, and ongoing relationships, no one can specialize only in caregiving.

Excerpt from The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver by Donna Thomson and Zachary White. Used by permission of the publisher Rowman & Littlefield.

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