Contributed by Ellen’s sister Lisa

Aaron and I arrived today from Wisconsin, to see Ellen and everyone else here and because we’d been scheduled to come this weekend for months and were told we’d be needed. We have so appreciated Spee’s blog postings and everything everyone in this loving circle has been doing to support Ellen and her world and to keep her comfortable. So at Spee’s invitation (and as she continues to recover use of her left hand after last week’s fall) here is our experience today of seeing Ellen and being in the midst of the community of care that surrounds her.

Kathryn insisted on picking us up from the airport. We dropped suitcases at Jens and Spee’s and they offered hugs and hospitality. When we went on to Ellen and Eric’s house, Anne U had been sitting with Ellen, and as Aaron and Kathryn and I arrived from the airport and grocery, Eric was just taking over with Ellen. Anne gave us an update on Ellen’s afternoon, which included some wakefulness and time sitting in her chair, then Anne left. Will and Jesse were off with cousin Natalie shopping for used clothing; later they came home with their finds. We helped Kathryn put away groceries and make a dinner plan, and after a while Eric came down to greet us with warm hugs and a somber manner, and let us take some time to sit with Ellen ourselves.

She was asleep; we are told she is now sleeping for most of the day and night. She looks very different from the time of our last visit: sicker, thinner, and somehow paler. She was settled in her own bed, and though the equipment of illness (wheelchair, etc) is in the room, there was no aroma of illness or sense of medical interruption as she slept. I was immediately struck by the fact that Ellen is at home, in her own bed, with her own purple comforter tucked around her, with the gorgeous colors of autumn outside her own window. There was a slight furrow to her brow that her core care team has tried hard to interpret, and Eric, Kathryn, Anne U, Shivani, and hospice nurse Elizabeth have established a routine for her pain medication and other functions that seems to be giving her relief and ease for this new, quieter phase. This afternoon Ellen was breathing comfortably and the room was silent except for the patter and occasional fury of steady rain on the roof above her bed.

We decided not to risk waking her by hugging her or speaking but sat peacefully by her bedside for a while before Eric joined us; then we headed back downstairs where the kitchen had been cleaned by Claire the day before, where Josie had left a list of her cleaning projects that week, where the refrigerator was full of good fresh food from a lot of loving QIVCers, neighbors, and other friends, and from Gina who brings homemade food every Friday. Will went to pick up Eric’s friend Jean-François from the train station, and when he got home we sat down to dinner – Eric upstairs with Ellen and JF – while Jesse and Will joined us with Kathryn. When Shivani arrived to be with Ellen, Eric and JF came down to eat.

The house glowed with the dull light of a rainy fall day. Pink and yellow snapdragons brightened the kitchen counter. Tomatoes of all sizes and shapes – small green cherries, big twisty orange ones, large round variegated red and yellow orbs – were spread across the living room windowsill in advance of the first frost. Everything felt very quiet even when there was talk. Part of this seems to us to be the stillness intrinsic to the location of QIVC. Part of this seems to be about the sadness that Ellen’s voice is almost entirely absent and that the hard work of caring for her as she dies now goes on largely without her active, verbal, conscious participation. Part of this is the set of decisions made earlier this week as recommended by Elizabeth, the hospice nurse, and summarized below by Spee:

The overall idea is that we caregivers will back off and give Ellen the space to “do the hard work of dying.”  She has one foot in this world and one in the next and we need to help her go. We will no longer proactively engage with Ellen and seek in-this-world connection with her (ah, the grief in giving up those exchanges of words and gestures we were having). We will not ask her questions about her state, although we’ll certainly still be assessing her comfort level and seeking to keep that high. We won’t ask her whether she wants us to do X; we’ll say, “I’m just going to give you X now, which will help you be more comfortable” and proceed. We will, however, console and reassure her and continue to let her know we love her.

So part of the quiet in the house is about the integrity of purpose that the grieving, determined people who love Ellen bring to her care. Part of it is about how different this experience is for everyone involved.

We are grateful to be in this caring community today, and grateful for Ellen’s life, the life she has shared at different points with us and others, the life she has made here with her family and community.

Below is a photo of the four sisters: Lisa, Deb, Anne, and Ellen