My Journey as a Family Caregiver in the Wake of Grief

Later, in the wake of her death, I realized that caring for and loving my parents was one of the ways I’d defined myself, first with my father’s dementia journey and then, after his death, with my mother. What did that make me now? I’d already achieved elder status at my age. Did the term “orphan” apply if you were 62?

My mother popped into my thoughts continually the week after she died, the loss like a low-level thrum in the back of my brain. She had loved birds, cardinals in particular, and suddenly I saw them everywhere, their red bodies in vivid contrast to the snow. I felt comforted with each sighting, imagining her spirit around me, watchful and protective.

It felt like a season of loss, in so many ways. In this last quarter of my own life, I could catalog the things that were waning: physical strength and health; the loss of friends to illness and injury; the truncated runway of life ahead of us. There was existential loss, too, the pandemic, the warming planet, the sense of chaos in politics and societal discourse. So much felt confusing and sad, shorter and precious.

A cloud lifts

The first month many practical and tactical things that needed to be done kept us above water. There was the reckoning around her will, the settling of finances, clearing out her apartment to sell, and setting a date for a memorial. We daughters were still caregivers of sorts, administering in the aftermath of death, and there was determination and purpose around that. The “doing” still connected us to her as it also moved us further from the central fact of her loss, and then a kind of numbness set in.

Recently, a friend’s daughter woke up with a condition called visual snow syndrome. A fuzzy lens had fallen across her entire field of vision overnight, as if she were looking though a windshield in a blizzard. Horrific as it was, it didn’t completely occlude her sight, but it made everything out of focus, so that she had to work extra hard to see. Losing my mother in those first few weeks and months was like that, senses and emotions deadened by a soft focus until slowly, like a blizzard receding, things started to be clearer.

I began to adjust to her loss, faster than I thought I would, and I didn’t know how to feel about that. On social media and the AARP Family Caregivers Discussion Group on Facebook, many people still actively mourned their parents, months and even years after the loss. Was I somehow “less than”? This self-doubt made me feel even more guilty. I’d read social media posts and talked to people whose lives were forever changed by their mother’s death. Did the fact that my mother lived a long, good life make a difference? Was it easier to reconcile her death because she chose her own ending? There were questions I pushed down, because I knew there were no answers. The rational part of me understood there was no one right way to grieve, but still, I compared myself to others. I frequently sought stories of others who’d lost parents, trying to find myself in the ways they processed grief.

‘A lifetime of love’

Today, more than five months after her death, I have moved past the hard stuff. It feels strange to write those words, but time has brought perspective. A child should outlive their parents, but that doesn’t make the sense of loss any less intense.

What do I miss as a caregiver? I don’t miss the long drives to Boston and back, often in the same day. I do miss the hugs from my mother, cradling her tiny bird bones as I wrapped my arms around her. I miss the absolute joy in her face when she’d see me, the way it would light up all of her. I don’t miss the physical place she lived, a reminder, with the wheelchairs and walkers and the monthly notices of death, that my mother was failing with each day that passed.

I do miss the sense of being needed, the usefulness and purposefulness of caregiving. There is nothing more nourishing for the soul than to give to someone else, to do something useful and helpful for another person, especially one who spent so many years caring for you.

I’m at peace now, imaging my mother at peace. I will always miss her, always long for more good days with her. But I will also celebrate the part of the human spirit that moves forward, one day at a time. I recognize how lucky I am to have a trove of memories and for my children to have had so much time with her too. Inside my own mind are the movies I can watch when I want, call up like a playlist of greatest hits and tiny moments.