3 Ways to Disrupt Distress When Caregiving

I got one of those phone calls nobody wants to get. I was out walking our small dog, Bear, past the flowers and trees of our street when my phone buzzed. I looked at the unfamiliar number, “Walnut Creek” flashed on the screen and I almost didn’t answer. But, uncharacteristically, I did pick up.

“This is John Muir Hospital. Are you Mica Estrada?” “Yes,” I responded and stopped breathing. The rest of the words that followed were a blur. The words that won’t go away are “motorcycle accident,” “unconscious,” and the dreaded “bring someone with you when you come.”

Before that phone call, I had been recovering from COVID and had a terrible lingering cough and feelings of fatigue. After that phone call, the cough and fatigue vanished and I went into survival mode. My mom arrived the next day and I spent the next many weeks at the hospital, accompanied by my sweetheart’s family.

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Even as I write this, nearly a year later and with the current knowledge that my sweetheart lived and is having a strong recovery (though still recovering) from a traumatic brain injury, I can feel my heart race slightly as I type the words. My mind knows that the crisis is over but my body has not caught up yet.

As a person who has loved and tried to support a person who experienced a life-threatening injury, the most surprising aspect of the experience has been how full-bodied the impacts continue to be not only on my loved one but on me too. Reciprocal experiences of distress are real.

Research shows that family caregivers often find that when the patient (i.e., injured or sick person) feels distressed, the caregiver also has a reciprocal experience of distress (Hodges et al. 2005; Northhouse et al., 2012). Our love and empathy for our injured or sick person can cause a boomerang of emotions, sometimes called "a reciprocity of distress."

Reciprocity of distress has to be interrupted because distressed caregivers can stop being helpful (Ryan & Kahn, 2011). And, logically, someone has to stop being distressed to stop the pain cycle.

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After a year of accompanying a person who had a serious brain injury, I have come to the conclusion that one of the most significant skills I can develop is to learn how to interrupt the distress reciprocity cycle. I offer here a few strategies I have started to practice, with the knowledge that there are many others I have yet to try.

Interrupting the Distress Reciprocity Cycle in the Moment

1. Recognize what is happening. I find that sometimes there is great benefit in recognizing what part of the distress is mine and what is not mine. This practice alone can relieve the pressure in any given moment and stop an escalation of emotion and pain for all of us. My recognition does not make my sweetheart hurt less, and that is why it was hard to do. And sometimes it makes me more aware of my own sadness and pain. That part is mine.
2. Express the distress. I was recently at dinner with friends, one of whom has advanced-stage cancer, and his wife, who was accompanying him. They talked about how they cry together at times. Honestly, it never occurred to me that I could express my distress and not hold it in for the sake of calming the situation. Being given permission to express myself has given me relief. Perhaps it means stepping outside if one’s “patient” can’t cope with your meltdown, but somewhere it does need to be expressed. I am grateful my sweetheart can tolerate my tears. I find it helpful.
3. Shift to mindfulness. Sometimes I actually need to get my body to remember that while my loved one is feeling distress, I can choose to be mindful by letting my body stop, breathing deeply, and remembering to be grateful. I can shift my energy away from their distress for a moment, which can interrupt the cycle. For me, this is a meditative practice that reminds my body to recalibrate and get out of distress mode. When I do this well, there is no distress to express, it just doesn’t stick to me. I can then support my sweetheart rather than experience distress.

Caregiver with person in wheelchair.

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Conclusion

These practices do not heal the larger experiences of trauma surrounding the accident, but they do help me not to continue to accumulate more stress in my body and heart during our daily lives. Addressing the deeper “big” healing will be for another day.