We had a difficult night on Wednesday, battling restlessness and discomfort. Staying ahead of pain in hospice is a complex and inexact task, especially when the patient can’t clearly express what she is experiencing. Fortunately, with the aid of the visiting hospice nurse and social worker this morning, we were able to settle on a new routine of medication that will help Heather a great deal. And we are switching to liquid medication for her ease and comfort, as swallowing is a difficult exercise now.
Heather is no longer mobile, even with the aid of oxygen, and will spend her remaining days in the hospice bed in our living room. It’s set up by the big south windows looking right out into the branches of our dogwood trees. They are changing from a soft green to a brilliant red, with leaves falling every so often through the sunlit canopy.
I want to share with everyone a few reflections on Heather’s experience these last two months, and I hope that they are helpful in setting expectations for everyone who has circled Heather and our family from near and far with care and support since her first diagnosis in February of 2012.
When she made the decision to end treatment in September, she made it clear to me that she did not want to suffer, and she did not want to linger. Our hospice team’s goals are directly aligned with that first wish. But of course, we don’t know how long her intention to stay or go might take. Based on the experience of hospice nurses, it could be a week. It may be only days. What is clear is that Heather is, as she has always been, the driving force of her experience, clear to the end.
In my many hours sitting with her, holding her hands, talking with her about how much I love her and how wonderful she is and how annoying the dog can be and how the girl’s days are going, I have consistently been surprised by the glimmer of her old sense of humor in even the briefest response, the sheer force of her will in moments when I can’t imagine she has any strength left in the day, and the flash of that smile I will never forget.
I have been reading her the notes and cards, text messages and emails, poems and anecdotes from so many people from all over, all of them offering thoughts on how they know and will remember Heather. Feel free to keep them coming. I will respond as best I can to express her feelings as I share them with her. (Who knew “emoji” were actually useful?)
Heather has had some truly remarkable visits from old and dear friends in the past weeks, and our families of course stay close as best they can. It has now come down to this small world of wonder we have today. I thank all of you for your part in building it for her and for all of us.
-Byron
I learned not to fear infinity,
The far field, the windy cliffs of forever,
The dying of time in the white light of tomorrow,
The wheel turning away from itself,
The sprawl of the wave,
The on-coming water.
from “The Far Field” by Theodore Roethke
