Things have shifted quite a bit for Ellen in the last two weeks, with notable further cognitive decline (mentioned in her previous blog post) and turning inward. Ellen spends most of her day resting with her eyes closed and will open them in response to a greeting and sometimes engage a bit with whoever has appeared, although often she is not lucid and/or not able to get out the words. Hand gestures and facial expressions are becoming important modes of communication. However, from a few on-point contributions she’s made to conversations going on around her, we can tell she’s listening and still has her sense of humor. When Spee told her, “I’m just removing this bug from your grapefruit juice,” she replied, “That’s probably the only protein I was going to get today.”
Indeed, Ellen is eating and drinking very little now. In recent days, she seemed to have less pain, discomfort, and nausea, which is a relief. She does get up and around a bit, although her mobility is decreasing steadily. On the list of “no longer doing” are using the computer, looking at her phone, reading, and getting tasks done like putting stuff away in its place. However, when something is out of place, she’s still pointing and giving us a meaningful glance and is clearly satisfied when we take the appropriate action.
As of three weeks ago Ellen started a “chemo holiday” as the side-effects just became too much to bear. This last week we’ve had lots of discussion about starting hospice soon, which will probably happen early next week. Those of us caring for her have been reviewing her “Five Wishes” document (advance directive) about end-of-life wishes for how she wants to be made comfortable, how she wants people to treat her, and what she wants her loved ones to know. She wrote, on the one hand, “As I am dying, I want people to be informed as to what is happening. Clarity and frankness about the situation as it unfolds is very important to me. My loved ones and friends should be able to find out what is going on with me, to the extent that they want to know,” and, on the other hand, “I hope that my loved ones can come to remember me for what I was like before I became seriously ill, rather than just remembering the last part of my life. I want them to remember me living rather than dying.”
We are grateful for all the thoughts, care and holding in the light that we feel from all of you coming our way.
-Eric & Spee