On the day I became a sudden caregiver, I was first: a mom planning her only daughter’s wedding; a consultant facilitating a leadership program away from home; and an executive coach listening to her clients. I was also: a wife, a mom, a friend, a colleague, a runner, an executive, an advisor, and a consumer of too much Starbucks coffee. I inhabited the full complement of my usual roles that day. Caregiver was not among them. Then suddenly: it was.
How I Got To Now
I woke in the middle of the night to the ringing of my mobile in the dark. The hotel’s bedside clock read 2 am. I answered the phone with a heart-racing, “Sweetie!” I was startled that my husband, Joel, who never stayed up this late, was calling in the middle of the night. “I’m still at the hospital," he said. "They just told me I have lung cancer and it’s spread to my liver and my spine.” I sat up in bed trying to get my bearings. I had fallen asleep fully clothed, propped against the headboard, waiting to hear that Joel, who had gone to the ER with some back issues, had made it home safely diagnosed, a curative regimen in hand.
Cancer seemed so unlikely a diagnosis for my non-smoking, religiously exercising, insistently supplement-taking husband, that I was sure this was some kind of mistake, “That’s not possible,” I told him. I would get home, I said, and meet with the doctors and we'd sort it all out. I'm a coach, a professional problem solver. I have never met a problem I could not solve--that is, until that moment.
Murmuring with Joel deep into the night, neither of us sounded alarmed. We were so matter-of-fact that we might have been discussing who would pick up the groceries. I now realize that in my complete ignorance about all things cancer, and in particular stage 4 cancer, I was plucking “lung cancer” from the air and turning it into an action item, mentally rank-ordering it on my list of priorities in order to minimize it. Does it go at the top: drop all and grab a plane? Or in the middle: finish what you came for then hightail it home? Or perhaps, after all, this is at the bottom: we’ve all had bad news, even scary medical news. But it is never really bad.
The "C" Card
I wandered in and out of sleeplessness and was on a 7am flight home to Boston, phoning colleagues from my seat on the plane to beg them to facilitate the meeting on which I would now have to cancel. I heard myself pleading with one colleague, hoping she could find a way to cover for me. “But Joel has cancer,” I whispered to her. That was, officially, the first time that I told anyone that. It felt false, a manipulation, “playing the ‘C’ card,” as they say. Yet in the next moment the power of its truth overcame me. To my astonishment, I began to cry. That was the moment when I knew that life was not going to yield to my well-crafted plans.
Welcome to the other side of the looking glass, the province of the sudden caregiver.
A Roadmap for Your Caregiving Journey
Immersed in chaos and reeling from the added responsibilities of this new caregiver role, I felt keenly the absence of any guidance. I sought, and could not find, a roadmap, a tool, a way to predict what might happen next so that I could be ready for it.
In early April of 2016, my wonderful, funny, scary-smart husband, Joel, left us here on earth to make our way in this crazy world without him. Within weeks of Joel’s funeral, and while the experience of our 18-month battle with cancer was fresh in my mind, I sketched out a roadmap for sudden caregivers, drawing on my lived experience and my daily journal entries and the wisdom of my foundation in Positive Psychology, which emphasizes resilience, grit, strengths, and optimism. I am grateful to my Alumni Association at the University of Pennsylvania for the grant they awarded me to get this community off the ground.
This online community is meant to serve anyone who finds themselves taking on the role of caregiver, and especially those to whom that role came "suddenly."
The most important way you can support this community is to join it, help other members, and share it open heartedly with all who may need it.