Shifts and Changes

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

7 thoughts on “Shifts and Changes

  1. Dorian

    Thank you for this update, Eric and Spee! It makes me so sad to read but I’m glad know. Sending love to all of you!

  2. Shelly

    Please let Ellen know that I have so many wonderful memories of her living and think of her almost every day. Our lives went in separate directions, but I’m grateful for the times we managed to overlap. She is one of the most authentic people I’ve ever known. Plus, she’s the only person who ever rescued my doodles from the trash to present to me years and years later! She is a treasure. You and Will and Jesse and your extended family are lucky to have had her in your life, but I wish you could have her for longer… Please tell her I’ll be thinking of her on her birthday this week, as always.

    • Spee

      Hi, Shelly – This morning when Ellen was relatively alert, I told her about your post on the blog and the doodles story. I don’t know how much she got it, but she certainly smiled in thinking about you and those days when you worked together. -Spee

      • Shelly

        Thanks, Spee, It means a lot to know my communication was shared with Ellen.

  3. Gina Qualliotine

    Many hearts are together in this time of change, in love, bewilderment, wonder, respect and pain. At the center is the love of Ellen and Ellen’s love and life. Ellen you could not be more beautiful and the gift of you more palpable. May we all steady one another and let our love help you through prayer and action as best we can. Amen.

  4. David Millians

    I’ll never forget Ellen. Hugs and hugs and hugs!

  5. Sarah David

    I know Ellen through River and Mountain. She was training with the Susans during my latest pregnancy (the little girl born at the time is now 6 1/2). She didn’t make it to my birth because she had a really important anatomy and physiology exam the next morning. But I have some very vivid memories of Ellen during my prenatal care and her enthusiasm for midwifery– some very dear moments that I remember so well and meant so much to me. I even dragged her out of bed to drive over here with Birdie in the wee hours of a winter morning to check on me–false labor alarm! Oops.

    I was saddened to hear of Ellen’s cancer reoccurrence last summer and ive been following this blog ever since. I’m sorry now that I did not write to Ellen sooner.

    If you, loved ones of Ellen’s, would know that I do indeed remember Ellen as she lived, I hope that would give you some comfort in what must be a very difficult time. I hope Ellen also knows that. If there is a moment that seems appropriate, I hope you can convey these thoughts to her. My prayers are with you all.

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