“You look terrible!” Priscilla exclaimed when I came into her office one day in September 2014. Earlier that day I’d helped the home health aide give her a shower, but I’d also rushed in and out of my own office whenever I wasn’t needed, furiously trying to finish a freelance editing project. I’d gone back to the edit once I got Priscilla settled at her computer, but the fact that I was “pushing” to finish showed clearly in the drained look on my face that she recognized with alarm the next time I walked into her office. We realized that trying to do freelance jobs was wearing me out when added to overwhelming daily care responsibilities and long-term accumulating fatigue. We wondered how much longer I should keep accepting these jobs.
The answer came a couple of weeks later. It was a day when no one was supposed to come in or out, so I expected to have plenty of uninterrupted time for freelance work. But as I sat down hopefully at my desk, the phone rang twice in succession. Priscilla’s nurse practitioner and home care nurse were following up on some symptoms that had concerned them. Over the course of the day they each came in for complicated, extended sessions, and a friend also kindly but unexpectedly dropped by for a visit, bringing something she’d baked for us. Throughout the day I kept trying to return to the freelance project, but several times, literally just as I was sitting down and saying, “Finally I can get to some editing,” I’d be interrupted again. In the end, I did one paragraph for the whole day!
“It was an awful day,” I wrote in my journal, but it was also a very helpful day, in that it showed me I could no longer promise clients in good faith that I’d be able to meet specific deadlines. That settled the matter. There could be no more freelance assignments after this one. We explained the new situation in an email to the group of people we had started calling our Dear Praying Friends (from my usual salutation). We asked them to pray with us that I’d somehow get this last edit done. It took another couple of weeks of hard slogging, but I was able to submit it by the original deadline.
God had us covered for the income we would now be missing. A little earlier in the year, many of the people Priscilla referred to as her “Williams kids” (because we’d first met them when they came to our church as students at Williams College) had gotten together and collected a significant gift for us to live on in just such an eventuality. “We want you to have as much time as possible together,” they explained. Their wishes would now be fulfilled. My time with Priscilla would be both quantitatively and qualitatively greater now that I’d no longer have to look over my shoulder at looming freelance deadlines. Over the next year and a half, other friends additionally provided for us very generously, so that I was able devote myself full time to Priscilla’s care for the rest of her life. I can’t put into words what a magnificent gift this time together was and how grateful I will always be for it.
Even if I weren’t trying to do freelance work, Priscilla’s needs were still expanding to the point where I was no longer able to keep up with many household tasks. For a while, a neighbor had kindly been sending her house cleaner over to help us, but now we recognized that we needed even more help than this—with things like laundry, in addition to cleaning and vacuuming. This same neighbor then connected us with a young woman of many talents who was looking for occasional work to supplement her income as an artist and singer-songwriter. (You can listen to one of her songs here.) She started coming for several hours at a time, first once a week, then twice a week, to help with regular household tasks and also with what we called “special projects.”
For example, at one point Priscilla accidentally backed her power wheelchair into a framed watercolor of orchids that her brother had done for her. She cherished this painting and we’d hung it in a low (and thus vulnerable) spot because she wanted to be able to see it from her “day bed.” The painting fell off the wall, the frame broke, and the glass shattered. But who better than an artist—our new helper—to take it in and get it reframed? Hearing that we now had her coming in regularly, some other friends sent us a generous gift specifically earmarked for “household help,” to cover her well-earned wages.
So the last quarter of 2014 saw some significant life changes. I gave up freelance work to devote myself full time to Priscilla’s care, and we had someone coming in regularly to help with many domestic tasks. And there was one more important change. Different women from our church had been alternating sitting with Priscilla on Wednesday afternoons while I ran errands. But now they all started coming at the same time, because none of them wanted to miss the visit with her. A devotional/prayer group was born. Each week they’d read a selection from a Christian book and then pray for one another and for other needs they were aware of. Priscilla always looked forward to these times and I know the other women did, too. One of them confessed to me, “I first started coming so you could run errands, but now I come to see Priscilla.”
But all of this nearly didn’t happen. The doctors had predicted that Priscilla would likely die by the fall of 2014, and she almost did. In my next post I’ll explain what happened.