A few days after posting about our current predicament, my friend Emily called with urgent news: she'd just heard Gail Sheehy on NPR and I had to read her new book. I picked up Passages in Caregiving a few weeks later. In it, Sheehy, author of the spectacularly successful Passages: Predictable Crises of Adult Life and many other books, speaks of "eight turnings" in caregiving. That post of mine, titled "A
turning for J&J," was written in what Sheehy identifies as the first, Shock and Mobilization. (We're now in The New Normal, according to Sheehy, a fair description of how it feels, a phrase that our friend Carole used after the initial crisis period ended.) I'd used the phrase without benefit of having read her book.
I'm struck with many of the words Sheehy's uses, which so perfectly capture this strange land: shock and mobilization, the new normal, the in-between stage, the long goodbye. We've used them all, others have used those same terms with us, all seemingly spontaneously.
There is no lingua franca for this kind of experience. As our friend Tom (Emily's hubby) said, "We don't know how to do this. We're not trained." Yet when you're in it, the descriptive terms fall out of our mouths without our having googled "terms for stages of terminal illness." Yes, Elisabeth Kubler-Ross identified five stages of grief, which are both similar and different. Much as I respect her work and have found it useful, those stages don't really apply to where we are with this.
Sheehy's book is filled with stories, including her own, the 17-year saga of her husband, Clay Felker's, cancer. She was the caregiver; they suffered mightily, including financially to support him; and she's drawn brilliant conclusions, including the one that stands out for me: establish your network and you'll be OK. In our experience, our "friendhood" has meant everything to us.
Buy multiple copies of her book and give them to everyone who's going through what Jeff and I are.