My mom isn’t my mom anymore. Like a cicada at the end of summer, she’s removed her real self – her personality, her memories, and her ability to drive me crazy – and left behind a shell that looks just like her, but isn’t. Not at all.
The hardest thing I’ve done to date is to say goodbye and walk out of that room on Friday. Walk away, while she was shrunken and folded over in a wheelchair, absently picking at the purple and cream afghan she made decades ago. Walk away, when she couldn’t or wouldn’t respond to my “I love you” and my hugs.
Also hard: sitting with her at dinner that first night at the nursing home. She wouldn’t respond to me, she wouldn’t engage. She couldn’t hold her fork and tried to drink out of her coffee cup upside down. I fed her soup and fish and pasta and peaches, all mixed in with my tears and my snot. (Sorry about that, mom.) When she was cold, I put on the only long-sleeved thing we thought to bring to her: a blue and white flannel pajama top, covered in stars. Christopher, don’t forget to bring her some sweaters, ok?
I am undone by how fast she’s come undone. Earlier in the week, she was talking (albeit only when someone asked her a direct question) and responded with “I love you, too” when I left her at the hospital each night. Now she barely nods or shakes her head. She doesn’t seem to know who I am. When she does talk, it’s nonsensical words and phrases. She bites at her fingers and tells me they hurt because the orange snake in the backyard bit her.
Getting her into a safe environment and into hospice care has been a nightmare, but she’s there now. Making the decision to put her into hospice rather than continue medical treatment that very well might not work? That really sucked. How can my brother and I decide what to do with the remainder of her life? How do we know what’s in her mind?
I owe a huge debt of gratitude to the palliative care director and the hospice coordinator who helped us fight for what we thought was best for my mom. It was, they said, the hardest discharge situation they’ve had. I can’t thank them enough for their hugs, their counsel, their answers to my 8,492 questions, and their willingness to stand up against a doctor or two.
The most I can hope for it to keep her comfortable and safe, for as long as she wants to continue living. I would love to think it’s going to be a long time, but I just don't know. It's up to her, now. She’s been miserable for a long time and has made it pretty clear she doesn’t want to continue to fight. I can wish otherwise all I want, but I can’t ever change that.