As I have shared, when Mama J moved to Louisiana I asked to photograph her and began this blog as a way to work through the emotional toll of becoming a caregiver to an aging/dying parent. I didn’t realize it would all too soon become a vehicle for keeping friends and family apprised of her condition in her hospice bed.
It’s hard to express what’s “wrong” with Mama J right now. I used the word in-between in the title of this post, and it’s perhaps the best way to explain what’s happening.
In-between describes this space between life and dying, a space that B and I were not prepared for. Foolishly, selfishly (both for her and for us), I thought I would come to her apartment one day and find her, fallen asleep never to awaken.
But life, and dying, don’t always work that way, and her time is evidently not run out. Mama J is no longer herself. Due to oxygen depletion, or carbon dioxide buildup, or the falls, or whatever else is happening physiologically (aside from the devastating long-term effects of her COPD), she has suffered some cognitive impairment. She sometimes knows us or what is happening and sometimes repeats a word over and again. She has referred to both her parents, both long dead, and people we don’t know. She asked for soup last night, and B rushed to get her some, but when he returned we both realized she was playing out something that was only happening in her head. Sometimes she can respond to a request, and she has said “I love you, too.” An automatic response, programmed in? Or God’s way (and hers) of comforting me? She wants up and out of the bed and the chair, and fell again early this morning, hitting her head. Mostly she is sleeping, as her body works whatever processes it is trying to work right now.
We have been faced with the difficult choice of what to do next. Her social worker and doctor and Medicare have decided, at least for now, that she is “well” enough to transfer to a nursing facility, perhaps as early as Monday. I look at her and wonder if they are talking about the same patient. I’ll admit to saying “That’s bullshit” to the social worker through tears of frustration. One nurse says she will not leave hospice. Another says she’s improving (um…). All agree that she is not yet “imminent” or “actively dying,” yet the infamous little blue book (have you read it yet? Rush right out…) Gone From My Sight has a checklist of mental changes “one to two weeks” from death that we can check off every item on the list. Disorientation. Check. Picking at clothes. Check. Talking with the unseen. Check. Agitation. Check. Check. Check.
We have decided that once they “release” her, she will stay here at the hospice. It is clean and quiet, and she is getting excellent care. If she runs out of money before she runs out of life, we’ll figure it out.
I want to say how much your love and prayers and kind words mean. When I write to someone on Facebook or in a text and say I’m thinking of you or praying, I mean it and do it with my whole heart. But I’ve not really been on the receiving end before, and it’s a powerful gift of a place to be. I can’t express enough our love and thanks.
Meanwhile, Mama J is still here. In between herself and forever, somewhere. I hope her journey will be easy, and not long.
To read about the Adventures With Mama J from the beginning, start here: And Mama J makes 3
Next post: This is grief