The uses and abuses of silence during caregiving

One evening when I was 14 years old, my father turned to me while we were watching a TV show and uttered what sounded like a string of gibberish. Shocked, he paused and tried again, but

whatever he was attempting to say came out as scrambled, indecipherable word parts. It was the first sign of the cancer ravaging the speech center in his brain. In that moment, our family

was transformed from a normal, happy, boisterous clan to one weighed down by sorrow which we handled in virtual silence. In the ensuing months, none of us talked much about his brain cancer

or, less than a year later, his death. Stoically, we pushed on. This is not unusual for families struggling with overwhelming emotions about a medical crisis. Many family caregivers don’t

want to put into words the enormity of the sadness they are feeling for fear of upsetting others. Talking less may also seem to them a way of containing and coping with the crisis at hand.

Conversely, expressing grief and fear may somehow seem a risk for making bad outcomes manifest. As my mother said to me during and after my father’s cancer, “This too shall pass.” In other

words, don’t dwell on what is happening. Put your head down and keep going forward. We’ll get through this. I’m sure my family’s silence kept me from being overwhelmed to a degree, but it

also affected me negatively. At first, I felt terrified about my father’s sudden language deficits because no one explained them to me; I thought he was going insane. (He was losing his mind

but not in the way I feared.) After finally being told his diagnosis, I didn’t understand that, even with chemotherapy, his chances of surviving were small. After his death, I thought I was

supposed to keep my grief to myself to best support my mother as she struggled emotionally and financially to support me and my brother. I mastered the skill of sealing off my emotions and

putting on a good face but inside felt desolate and alone. As your family’s primary caregiver, you model for the rest of your caregiving team the sharing of information and emotions. How you

handle these communication challenges, and not just caregiving’s hands-on tasks, will have great importance for maintaining family members’ emotional connections during and after

caregiving. How can you encourage the right balance between venting feelings and honoring silence? Here are some ideas: NOT ALL FAMILY SILENCES ARE THE SAME There is the stereotypical

stay-mum-suppress-all type because family members are frightened and believe that shutting down emotional expression will make them less anxious and more secure. This is an avoidant style

that in the long run can undermine family cohesion, causing family members to become more isolated from one another. Imagine a home in which caregiving family members are agonizing over the

same fears but in separate rooms. There is no mutual communication or support among them. Another type of silence, though, may strengthen bonds. There are families for which talking feels

unnatural and impedes other ways of connecting, such as sitting together in silent communion, calmed by each other’s physical presence. Consider the chorus of Depeche Mode’s popular 1989

rock song, “Enjoy the Silence”: “All I ever wanted/All I ever needed is here in my arms/Words are very unnecessary/They can only do harm.”