
29 May 2025:
It’s been a minute since I’ve updated this diary. Partly because there’s been a lull and mostly because I am just too tired and sad.
I’m sad that things have unfolded for Ellen in this way. Wheeled from her home on a gurney, confused and soiled, a week alone in a hospital bed—frightened and alone, followed by post-acute care, and then placed in a perfectly fine and much nicer room than the out-of-control squalor of her home. And I recognize that for her this new room is a sort of limbo… both temporary and forever.
I’m tired of her aggression, incivility, stubborn refusal to eat in the dining room, refusal to eat at all, refusal to shower because she won’t bear the indignity of having help in the shower room.
Tired and sad because her life, even now amidst all these swift and enormous changes, could be so much better if only her change was internal uplift at best, or openness to the possibility that this chapter could be okay.
Cleaning out her home I found a card that I sent to Ellen for her birthday in 2017, she was 77.
Dear Mom,
It was a great treat to spend time with you. You look well and happy-ish.
My wish for you this year is that you embrace more of your life, more of the world. One of the things I have aways admired about you is your openness to the world the way you make friends & enjoy.
I have seen your world shrink in the past year. I have tried to help you engage in Tai Chi, Yoga, Water exercise, classes at Dominican, all to get you around more people besides Anderson Cooper! & Rachel Maddow! Of course I understand that you have to MAKE the choice. I’m just surprised that you have not. It makes me wonder about changes you may be experiencing.I am glad that you have wonderful friends, of course you do! And I recognize that you may by content at home alone with Ladybug. But you have shared with me that you are not.
You don’t have to wait until Monday, or the first of the month, or New Year's Day to make a decision to enrich your life. Maybe the time is now? Every minute is an opportunity.
I love you,
Natalie
I shared this card with a close friend and her response surprised me. She said something along the lines of, “That’s a lot” Or perhaps she said, “That would be hard to receive.” I remember sending the note with so much love and concern. And I remember thinking, “Oh god, I hope someone notices if/when my world shrinks!”
…
Years ago I listened to a *Moth Story Hour in which James Braly spoke of sitting at his sister’s bedside at her death. His entire dysfunctional family was in the room with him, fighting for attention, eating jello, listening to the swish and sigh of her morphine pump … when he looked to the nursing staff for help to squelch the dysfunction, to make the room peaceful, the nurse said,
“In my experience, people usually die the way they live. Maybe it is not your job to make things right.”
That line always stayed with me. Ellen may not be actively dying, but she is certainly living the way she always has, only louder. And maybe it is not my job to make things right. Maybe that was what my friend’s response to the birthday card was about. There was a lot of assumption in the card that it was my job to make things right. I have felt for nearly my entire life that is my job to make things right for my mother. I cannot wait to put that burden down.
In Ellen’s view I am Godzilla. A terrifying and bossy person who has taken control of her life. Maybe that’s who I’ve been since the moment I was born. Twenty-two-year-old Ellen alone and frightened and tired in a different hospital only now without a partner and responsible for an infant!
And, in my view, Ellen is Godzilla, a selfish and cruel person whose failure to plan has taken over my life. (Please, dear reader, plan for your old age! I beg you…) The list of tasks and responsibilities is unending and thankless—medical and financial. I won’t bore you, but believe me.
So here we are, two Godzillas wrecking each other’s lives. One mad, one sad. It is temporary and forever.
*Please do hit The Moth link and scroll to the bottom to listen. It is fantastic!
I have been learning exactly the same thing.
It is the hardest standing by and respecting the choices a parent —or anyone you love—makes. I am so sorry you’re going through this. Sending lots of love.