One of the hardest things about care-giving is that the responsibility all falls on you. And it’s not just a weight of doing the details; it’s the emotional responsibility of taking care of someone else’s life.
I said to a neighbor, during that time of caring for my aunt, that it was as if I were co-participating in her dwindling years. She might have felt she was alone, but I was going through it, too. My friend Helen agreed when I mentioned that. She had helped her husband through his battle with cancer, and then his own ending time. She had participated in, and carried, her husband’s struggle and death as if it were her own. After he died, there wasn’t just grief, there was exhaustion, too.
For the last several years of my aunt’s life, I wrestled with not only the responsibility of how to get her needs met, but also with ways to shore up her sense of dignity and control. She needed to have choices; she needed to have a sense of what decisions were being made, and what her options were. She needed to feel cared for, and safe.
But I had to balance those with the needs of my own life. And that was hard. At one point, I was going down to Maryland every 3 weeks. I’d catch up on her paper work, get her to medical appointments, clean the apartment, clean the fridge. Then I’d go home, stare at my own messy refrigerator, and wonder how it could be dirty when I’d just cleaned it!
I think that caretakers are, in some ways, the unseen “collateral damage” of elder care. I had laid out my life and taken her into it, carried her along. And while I was so grateful for the chance to grow even closer to her, that opportunity wasn’t without cost.
Here are a couple of entries from Year 3 of the letters….
A letter in the New York Times recently spoke about losing the people you’ve taken care of, and how it drags you down, how it leaves a large hole in your life, one way and the other, both when they’re here, and when they’re gone. Only someone who’s been there—on that rough, impossible road of carrying someone else—can know what it’s like. We are eaten alive. And still, don’t want to be spared, because what would that mean? The end. The end, the end, the end.
A lonely, impossible, oddly graced journey this caring has been, and still is; never, it seems, really over.
There ought to be a place where caretakers can go afterward, to recover; collapse, breathe, without waiting for the phone to announce the next emergency. So far, I haven’t found that. All my beloveds, in one way or another, keep needing more. And you? I guess you don’t need anything from me now. But the hole you left, the wound I fell into for so long, is still raw. I’m not sure what to do about that. For who would choose not to love? And love means being with—no matter what.
Well….for now the day ahead stretches out before me: beeswax melting on the stove for the new, big basket waiting to be sealed; many phone calls from needy students while I’m writing; the pooch, ready for a walk. And, for just this moment, a life in the middle of care, scented with honey and wax.
On the radio today, I heard singer-songwriter Amy Grant tell the story of helping her parents go through their end times—that rough, hard work of the million details, the unrelenting care, the heavy responsibility, doing it all alone. She complained to a friend, who agreed it must be hard, but it was something else, too. “This is the last great gift your parents will give to you,” her friend said. The opportunity to care.
What gift would that have been, for me? The chance to work hard, to get over myself, to push through the weight of wounds and what I thought I didn’t get, and just give. To fight for you. To hold up your dignity. To dredge up, out of the bottom of my halting heart, as much love as you needed. To offer what I could. More than I could.
The chance to know you, not just as strong and remarkable, but person to person, heart to heart. To bear your tender vulnerability that needed a hand to hold. You gave me that. The work, and the chance to slip through your careful guardedness and into the juicy center of your heart. And into my own.