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Caregiving and the Need for Connection Literacy


Caregiving isn’t just what happens between the caregiver and the cared-for.  It’s also about creating new ways of thinking and talking about how care impacts all aspects of life. Cultivating an authentic caregiver voice is a social act. Authenticity doesn’t happen on its own, it’s always the by-product of scripts that are practiced, revised, and continually modified as experiences evolve.

The familiarity and comfort of face-to-face support from family and friends is often celebrated as an ideal and complete form of connection.  But exclusively relying on support from people who are already known can also create unexpected dilemmas.  If a caregiver feels as though she wants to say more to a loved one but just can’t, is frustration revealed in her face? If a caregiver senses that he is saying too much about his experiences and appears needy, is his desperation revealed in his voice? When a friend provides a quick and ready solution that is perceived to be unrealistic, is a look of disappointment revealed in the eyes?

Without a language to affirmatively communicate the full breadth, depth, and complexity of evolving caregiver experiences, everyday interactions with family and friends can become charged with inauthenticity, misunderstanding, and relationship-altering consequences. 

For anyone in the thick of caring, responding to “normal” questions or inquiring observations can feel like a minefield of guilt and inadequacy:

“Why are you so tired when all you do is watch your loved one sleep?”

“You’re not acting like your normal self.  Come on, you used to laugh a lot more.”

“Why aren’t you returning my calls and texts? It’s not like you don’t have the time!”

It’s scary knowing that there are limits to what well-intentioned friends and family members can do to give meaningful support. For caregivers, the mere thought of reaching out beyond existing networks may feel like a betrayal of those closest to them, but reaching out to other caregivers in a spirit of shared vulnerability is necessary to begin understanding how caregiver experiences are becoming part of an evolving life story in ways that can no longer be ignored.

Caregivers can begin to reclaim control of how they make sense of their experiences by focusing on how they want (and need) to communicate lived truths rather than deferring to the way others want or need them to.  Connection literacy, or the ability to artfully find and develop meaningful connection in whatever forms feel most comfortable, and enhance the entire family’s well being, is an overlooked but necessary competency of caregiving.  Connection isn’t simply about being with others, it’s about learning how to leverage familiar and unfamiliar audiences across multiple platforms. Connection literacy involves giving oneself permission to reflect on the personal changes brought about by being immersed in a caring role. It means creating audiences for deeper listening and understanding so that everyone in the circle of care can more fully hear themselves becoming more authentic in response to their care situations. 

There may be nothing more comforting than in-person conversations, but for caregivers learning to express challenging new realities, additional connection options must be available. For example, online caregiver support groups allow participants to shape and edit messages in ways not possible in face-to-face encounters.  It is possible to wait to press send when ready, not when pressured by the immediacy of the moment, but rather by one’s own timetable of expression. In online support groups, there is an implicit invitation to read a message and then deeply reflect, instead of being compelled to respond immediately. Because online interactions are mediated, caregivers are granted the rare opportunity to not be present when someone interprets what has been expressed. The person and the message can become temporarily freed from each other, liberating the sharer from stigmatizing judgments that can’t help but flow when communicating in person with family and friends.

Growing into a caregiver role depends on an ability to create meanings that work with those in a caring relationship—rather than recycling caregiver clichés that work against them. Finding and leveraging belonging in multiple communities—online and face to face—are not only necessary tools for resilience and advocacy, they also reflect the support needs of caregivers whose experiences are too multifaceted to be reducible to any one audience or form of connection.

Creating connections with new audiences when caregivers are at their most vulnerable seems contrary to what may feel most intuitive when everything at home is in flux. But holding tight to existing networks while also reaching out to peer-to-peer caregiver networks means acknowledging that the care role is transformative in ways that necessitate new perspectives and novel ways of seeing oneself.   

Teaching caregivers about connection literacy can be a springboard for exploring hidden resources in the community and enhancing the value of an emerging caregiver identity. When support is expanded and diversified, care experiences are more likely to be interpreted as an asset—not a burden—as reciprocity becomes the bridge between the self and others, forging a community because of care-based experiences, not in spite of them.

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Zachary White and Donna Thomson

Zachary White is an Associate Professor in the James L. Knight School of Communication at Queens University of Charlotte. He is the co-author of “The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver." He blogs regularly at The Unprepared Caregiver (www.unpreparedcaregiver.com). Donna Thomson is the co-author of “The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver” and author of “The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving." She blogs regularly at The Caregivers' Living Room (www.donnathomson.com).

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