Fading...

There is a certain sacredness to sitting with someone as they fade from this life. As a witness you see them retreating back to infancy in some ways- playing with covers, "finding" their fingers, grasping fingers, not holding hands at times. I awakened to Casper sleeping soundly today after a rough night, and now we are in the gloaming ourselves.

Casper can recognize me, and the rest of us, but her eyes aren't really focusing. She responds to being told that we love her, and to familiar voices still, but her conversation other than to say she loves us no longer makes sense. She is having trouble swallowing, and we've started atropine and suctioning and repositioning her. Yesterday she could help a little. Today she can hardly move at all. It hurts like nothing you can imagine unless you have been there yourself. Dr. Mall was entirely correct when he referred to this as "agonal pain." It tears your chest into hot shreds as the tears fall.

The dog was beside herself trying to find a way to snuggle in and to find her Casper somewhere in that change last night. The pain on her face was unmistakable. Fuzzy was absolutely inconsolable. She cried, she moaned, she screeched. The only calming was holding her and then getting Casper to put her hands on her. Even poodles experience that loss and pain.

And yet, there is that sacredness, that trust that Casper has in me and the rest of us. She hears Chloe's voice and reaches for her. She leans over the bed to hold Kerry's outstretched arm. She tries to raise her eyebrows to smile for Jay, and she wants my hands in hers. Last night as the evening wore on and we could see Casper changing, Jay and I sat up late with her. Casper was only present a bit of the time, but she keyed in for the important stuff. I told Jay about our first date, and Casper refusing to kiss me because it wasn't proper. She opened her eyes wide and said "You needed to be shown respect!" Jay added that she never kissed on a first date if it was someone she truly wanted to invest in, and from somewhere deep inside Casper came her North Carolina growling "Mmmm hmmm..." Jay described the talk he'd had with her as they waited to walk down the aisle with her at our first wedding. Casper told him that our relationship was the first time she's ever been truly content and truly loved. The first time her partner's children were loving toward her. The first time she knew it was really, truly right. As he talked her hand found mine. And squeezed.

I think that was our twilight as we entered this next phase. We had time to laugh and share and Casper was still a part of it, snuggled in her nest of pillows and soft blankies and her new teddy bear from Kerry.  We made her talk as much as we could, knowing that her voice would not be a part of our world for much longer.

The house is quiet as we stick close by and sit with her on our own thoughts. In the gloaming each needs to have the chance to grieve with Casper, alone with her and with each other. We know it won't be much longer, and as much as we want Casper to be released from the ugliness that is Lewy Body Disease, I don't think any of us are ready to really see this end. I know I'm not. I also know I can't change this process.

And so I sit with Casper as she fades in and out, making sure she hears my voice and feels my hands and kisses, as she prepares to meet the loved ones she's been seeing and talking to. At some point soon her mom and dad and Linda and her Aunt Myrt will slip in, and take her with them. And I will hold onto the knowledge that for this time in her life she knew what love was and that she left here surrounded by it.