Caregiving and Death

My friend Zoe and I are sitting on the steps on a sunny afternoon, crying. We both lost our parents 10 years ago. Actually, I lost my grandfather, but he acted as a parent to me.

We're crying partly in relief. We've just admitted to each other that we're not sure we'll ever stop mourning. Our memories of watching the people we love disappear slowly have irrevocably changed us, and we're not sure how to be like everyone else.

Zoe says, "You can talk about how someone didn't call you back all you want. The minute you say 'I miss my dead Dad,' you're being self-indulgent."

I smile. Then I say, "I miss my dead Grampa," and the waterworks start again.

Grampa had a stroke three weeks after my high school graduation: four and a half years later he died.

The stroke was the end of my innocence. Before I'd had sex or fallen in love or travelled on my own, I learned pill schedules and bathing and how to most effectively empty a commode and break a fall. Instead of packing for college, I helped move a hospital bed, the kind with the guards on the sides, into his room.

Almost immediately, I learned that both adults and peers wanted to hear the lessons I was learning from the experience, rather than the things that were truly hard, or boring, or frustrating. People engage with the side of death that feels meaningful.

But disease isn't particularly meaningful. The love you have for the person is, but caretaking is dirty, smelly work. It's emotionally draining. Watching someone leave this earth, watching his memory fade and distress increase, these aren't easy things to do.

Courageous. Worthy. But not easy.

I don't regret it, but neither would I do it again. It just exists. I looked after my grandfather when I was 17. It marked me.

I wonder what would happen if those of us with an intimate knowledge of death could express our loss, the feelings of raw hopelessness disease and death can inspire, without being asked to make it a celebration of life.

I think it might make it a little easier.

With a Perspective, I'm Amaya Alonso-Hallifax.

Amaya Alonso-Hallifax is an arts administrator. She lives in Oakland.