Caregivers Coping With 'Ambiguous Loss'

Dealing with the unknown

When Bob finally did emerge, euphoria gave way to reality.  He was riddled with deficits and needed to relearn how to speak, read and write. There was no guarantee of recovery with a traumatic brain injury (TBI), no percentages or potential outcomes offered. I teetered between hope and despair, even after it was clear his recovery was moving in the right direction. Would the old Bob come back? Or would he be a simpler, less capable version of my husband?  Would we be “us” again, or would I be living with a stranger?

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In the eight months since that day, I’d been carrying the emotional part of our marriage solo, pumping out hope and cheering him on, making every decision and protecting the children at all costs. I was exhausted and losing altitude. But this unexpected altercation about a piano, of all things, flooded me with relief and hope. Maybe I could begin to step back and let him shoulder more? 

A different kind of loss

 “Your husband looks so good,” friends and strangers would gush during the months after his injury. Cue the polite smile. And yes, he did. “But how does he seem to you?” I wanted to scream.

“What a lucky family.” And we were. Yet, if I’d hoped to share a true moment of worry or even a bit of my struggle, I quickly scrambled back from that ledge. What right did I have to feel sorrow? Bob was alive and recovering. Shame nudged out sadness. 

I had always thought of loss as something black and white, something absolute. But there was no simple name for what I felt. “Complicated grief?” “Ambiguous loss?” A therapist helped me to realize that I’d joined a quiet club of people grieving in the shadows — parents with disabled children, caregivers of loved ones with illness or injury, or the addicted child, the death of a thousand dreams.

There seems to be no room in our culture for the half-light of that in-between place. Loss that falls short of death is complicated. It sure feels like loss, but it isn’t always defined as one. Fear mingles with gratitude; panic overwhelms relief. At one point, I actually envied my widowed friend. Her husband’s death, though truly horrible, was final. Ultimately, she had nowhere else to go but forward.  But I lived in a world of uncertainty, rocketing between hopeful scenarios and the possibility of a lifetime as caregiver.

Gratitude tinged with grief

The individual losses felt like a series of paper cuts. I craved that unarticulated connective tissue that binds a marriage. I’d loved the way we shifted responsibilities and strengths, the unspoken negotiations between a couple, the grooved patterns and institutional memory of a twosome. Would he have the same sense of humor? Would we? We were largely intact, but in innumerable, inchoate ways, trauma had rearranged us.

Of course, I understood that grief and gratitude could exist on the same plane. And I was incredibly grateful for Bob’s miraculous recovery. But to move forward, I needed to mourn the outlines of the old us, the parts that now fit together differently. That proved difficult in a world so defined by absolutes – alive or dead, grateful or mournful, before or after.

The trick was to learn how to live in the challenging spaces, to hold fast during the unexpected moments when profound sorrow engulfed me and to balance those with the reminders of what was good and possible and real.

A new normal

We are different now. But Bob would tell you that after 30 years of marriage every couple is different. We are all shaped and sculpted by our responses to what life throws at us — the big events and the little cherry bombs, and he is right.  There are moments I still work on acceptance, or give in to tears. But most days I’m simply happy to be here, more keenly aware of how precious this is, even in the heat of a good argument.