Good evening, from a quiet room where Nancy is comfortably sleeping.
The palliative care team here at the hospital is continuing to support us in lovely ways. I didn't realize that they were connected to the Zen Hospice Project, which I've known of and respected for many years, and that our chaplain teaches at Spirit Rock (a wonderful large buddhist facility right over the hill from where we live). The intention/structure I've been holding all year, for Nancy's recovery, just does not serve any more. As I let go of my intention, the relief I feel inside is hard to describe. My attachment to her recovery has been a good thing, has served her and us very well, and has been a big weight on my shoulders. Now I have more capacity to start to deal with our outer lives, her final journey, and my own transformation and sorrow.
Today we met with the chaplain, some of the team members, and the lip reading pair for an hour. Nancy has been tired and napping all day, common after dialysis, so she was not very talkative. But the intention of palliative care is clear, and one of the first things we hope is to create an opportunity for Nancy to talk about anything she wishes, request what she needs. The chaplain is arranging another meeting on Friday or Monday to continue the conversation.
In the mean time, I'm setting up a shared calendar for the people who are coming to sit with Nancy around the clock. As I mentioned yesterday, this really helps Nancy feel safe. Tonight I started sending out the invitations to folks that have volunteered. You can still send me a note if you want to be a part of her core support group. I am asking members to take a 4 hour visit, or an overnight shift staying with her, at least occasionally, as we go forward. I'm continuing to be here from 6 to 9pm each evening, and most of the days on the weekends. Liza Leeds and Lily Kaplan are helping me hold this, and I want to publicly thank them for their kind assistance.
Nancy is continuing to do fine, although upon waking, she sometimes doesn't know where she is, why she can't move or talk, and gets very frightened. Otherwise, she is aware of her situation, shares some of her feelings, and is napping a lot during the day. Tonight we played Krishna Das during the prayer circle, the Heart Full of Soul album. She's always loved kirtan, and especially Krishna Das, whom we've seen live on two occasions.
As I sit here, it strikes me that I'm watching all the same monitors (pulse 93 BP 90/60 SpO2 100 respiration 10 temp 38.0). But the numbers don't mean the same thing. Before they were the critical indicators as she descended into a septic hell, underwent surgeries, survived infections. Now they are mere data. The journey is different now, and the data doesn't matter, except to tell us when the journey has ended. So I hardly pay attention to the monitors any more. Who Nancy is, and what she needs, are far more important. That's the gift of palliative care.
Love,
-tdc
-tdc
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