Living in Parallel Truths: The Dynamic Role of Caregivers

Early in December, Erin Moore and I attended the inaugural National Caregiving Conference in Chicago, organized by Caregiving.com. As we always do for these kinds of events, we considered ahead of time what our particular role would be—what might we teach or share and what might we learn. We thought about the varied roles that caregivers play and determined that their responsibilities in these areas are where we might best intersect:

  • Navigating health care information (finding care options like clinical trials)
  • Making decisions about clinical research (to participate, not to participate)
  • Being a trial study partner/logistics coordinator/supporter

 

Because this was a first-time event, our goals were pretty broad: listen and gather insights, build relationships, amplify the caregiver voice. But what Erin and I came away with from the conference went well beyond our expectations. What we didn’t anticipate was how deeply the presentations and panel discussions—even the Uber rides to dinner—would put us in touch with our own caregiving stories.

I’ll let Erin speak first: 

I remember the day that I became a “caregiver,” the day that my newborn son was diagnosed with cystic fibrosis in the NICU at Cincinnati Children’s Hospital, while he lay in a bed hooked up to wires and tubes keeping him alive following his third surgery in the first week of his life while we put on brave faces and listened to the doctor talk to us. Though he spoke, I don’t know that we could hear what he was saying. He gave us a diagnosis. He repeated to us that there was not a cure for this disease, wanting to make sure that we understood him before he invited us to ask questions. What questions do you ask after a diagnosis like that, knowing that the only certainty is uncertainty? All I wanted to know was when we could go home, and somewhere in that process of discharge from the hospital and transition to home care is where I acquired new credentials: “Will you be his primary ‘caregiver’?”

At the conference, I met other people like me. We weren’t talking about the patient anymore, we were talking about the caregiver, a title that none of us ever wanted, yet now wear proudly as a badge of honor as we trudge through this messy and complicated thing called life. You see, most of us will be caregivers at some point. It’s not something you think about, it just happens. Maybe not for a sick child, or maybe not for an aging parent, but for an aunt or a grandparent or a neighbor or a friend. Caregiving isn’t all personal care or physical support. Sitting with an aging friend to offer emotional support is caregiving. Talking with a neighbor who’s just received a life-changing diagnosis is caregiving. The term “caregiver” changes and evolves over time. You’re never just a caregiver or a care recipient. I was struck thinking about the commonality of this role. How might we better understand the complex needs of caregivers in order to create solutions to proactively support the lives of people when they do, inevitably, receive their own caregiving credentials?

And now, my turn:

The seminal moment of the conference for me actually took place during an Uber ride to a group dinner one night. We were sharing the ride with two conference attendees we had just met and were chatting about our various caregiving experiences. When I shared that I had been a caregiver to my son (who died of a malignant brain tumor in 2007), the driver suddenly spoke up. He had lost a teenage daughter, and he shared his feelings of loss and regret.

The way we were seated in the car, I couldn’t see the driver’s face at all. I was sitting directly behind him. I had no idea of his age or race, but we were immediately connected by a common truth. As he talked and I talked and we all talked, I kept reaching forward to pat his shoulders. We were all in tears. When we arrived at the restaurant, we just sat there together on the curb for just a moment, in silence. The power of connection can be most powerful when we just sit silently together. 

In summary:

The essence of the conference was how we all experience resilience in the face of adversity. Yes, there is hurt and pain, and yes there is hope and happiness. It’s not either/or, it’s both/and. Caregiving isn’t all bad or all good. Keynote speaker Bruce McIntyre said it well when sharing his experiences caring for his wife: we live in parallel truths. He joked that the experience of caregiving can “temporarily dislocate your happiness.”

Our experiences as caregivers certainly bring some hardship, but they also bring connection.

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