One of my Lenten resolutions is to keep trying to work through, and to write about, what my mother's illness and death and the time after have been for me. For us all, including Elizabeth, who has taken to pinning me down several time a day to ask, "You mum died? She died? You sad, Mama? You sad about you mum died?". It's so difficult to escape conversation with a three-year-old. It's lovely that she knows and is concerned, but the persistence of three-year-old conversation is like going though a minor inquisition.
The girls and I are still all recovering from influenza, and I am fighting the weariness and lack of interest in food and short-tempered-ness that comes after illness. It's made worse by occasional stabs of grief. I was just holding my phone before going to bed, and remembering that a very short time ago I slept and ate and lived my whole life with my phone on, charged, and near, waiting to hear if something had gone wrong- at the nursing home, and then at the hospital, and then, much more intensely, at the hospital, as we waited, and knew we were waiting, for Mum's death.
I've spent today feeling dizzy. I don't know if it's from memories or from being sick.
I am remembering now, more intensely, with more perspective, what it was like to be at the hospital, faking confidence, sitting with Mum, listening to the doctors and nurses bustling around. Using the hand sanitizer on the way into and out of every room, always. Gradually becoming aware that probably Mum couldn't eat or drink anymore, that it wasn't just lack of care at the nursing home, but that she was unable to take anything in by mouth. Being appalled to find out she had had food in her mouth for more than twenty-four hours, and her agitation was because of the discomfort.
Beginning to agonize about whether or not we would put in a feeding tube. We talked to friends, I read the articles on the Catholic Bioethics site, we talked about extraordinary care versus ordinary care. Some moments I thought that definitely food and water were ordinary, necessary- my God, how can you deny someone food and water?- and other moments I would see the words about the body rejecting food and water in preparation for death, and about the prolongation of dying. And I read about infection, and aspiration of food through a tube, and that sometimes demented patients require arm restraints and medication to permit tube feeding, and then we had the results of the swallow test. She couldn't. She couldn't swallow.
And I talked to Dad, and told him the pros and cons, and he listened, and thought, and said, "She wants to die." And I nodded, and said, "We'll do palliative, then. She'll be given pain meds, and the doctor says it takes seven to ten days."
And we made the decision, and the next day when we arrived back at the hospital Mum was on oxygen but was fighting it, taking the mask off, fighting the nurses, and I thought of putting a feeding tube back in over and over, or of sedating her to give her another month or two of life, and I thought, This is the right decision. We've made the right decision.
It took her nine days to die. She was mostly comatose after a day or two, and she was constantly on morphine, although after she was moved to palliative a nurse came in and I asked what the noise Mum had been making was, and the nurse looked at me sympathetically and said, "She's moaning. I'll get her more hydromorph". And I was appalled that my mother was lying there in pain and unable to express it.
I think we made the right decision. I know we did, but what gives me nightmares, frightens me when I'm alone, and breaks my heart is that I'll never know whether that was what she wanted. All through her illness I had to make decisions for her, I had to help and guide, and sometimes she fought me and I lost, when she could no longer reason. And I wanted, always, to be able to explain. To be able to tell my smart, wise, tactful mother why. Why things were happening to her, why I was making the decisions I was. I wanted to be able to cross that horrible gap between us that her illness had made, and I wanted my mother to tell me that she loved and trusted me, and that she understood.