A couple days before my mother died she told me that her grandmother had sat in in an easy chair in the weeks leading up to her death. After we brought mom home from the hospital, on hospice, she refused to get in her bed. She stayed in her chair for her last five and a half days of her life around the clock except to use the bathroom. Just like her grandmother. A few weeks after she died, the entire contents of my mother’s apartment got stuffed into my basement. For those first few weeks, I would find myself in the basement with my mother’s belongings a lot. I sat the chair she died in. I looked through her night stand where we found her poetry and tarot cards, I went through the plastic garbage bag with the clothes she wore to the hospital mixed in with dish towels and paperwork from the hospital.
photo by Dani Weiner
I told myself to remember the feelings of profound sadness and unmoored loss that sat inside me. I told myself to try to notice the feeling of confusion about how could it really be possible that I would never see her again, never talk to her again, never hear her voice again, when I could still smell her and I was surrounded by all her stuff. I wanted to remember it because I knew that someday I would be ready to write about it. And I wanted it to be good. I wanted it to be real and raw and capture the grief that was inhabiting my body. I threw myself into grief, somehow knowing that plunging myself head first through it was the only way I was going to ever come out the other side. I was heavy and I was light. I swooned, I cried. I saw her out of the corner of my eye. I saw her in my dreams. I felt like my chest was cracking open and all the pain in the world was streaming through my heart and up to the moon. I yelled at my husband a lot about things that weren’t his fault. I drank a lot. I smoked a lot. I slept for days at a time. I started talking in my sleep again, and then I started waking up screaming, then I started waking up sitting up. My husband told me I would sit up call out to her in the night and fall back asleep sitting up. I never went back to sleepwalking like I did as a kid. Four years later and I still sleep sitting up sometimes. Less and less these days. Four years later and all her stuff is still in my basement.
Right after my mother died I was wracked with guilt. She died in my care; my brother and I were her hospice caregivers. I intellectually knew it wasn’t my really fault. But I wish I had been able to make it a little more graceful for her, a little more dignified. A good death. I wanted so much for her to have a good death, but in the end on that July afternoon I was struggling to get her 90 pound body off the portable commode and back in her chair while she was losing consciousness probably in part from the closer together doses of morphine she’d needed that morning.
photo by Xander Wiswall
The previous night I’d asked my brother if he could relieve me for the whole night. I drank a pitcher of sangria that a member of the hippie housing co-op my mom lived in brought over and smoked cigarettes outside my mom’s back door all evening. I went back to my temporary apartment that the co-op had lent my husband and I across the way and slept a full night for the second time in probably nine days. Between the hospital and then bringing her home for hospice I had subsisted mostly on naps. That mornig I woke up at 11 am because my brother called me. He said he couldn’t get mom to get off the toilet. And when I arrived, there she was in her living room, sitting on the portable commode. Much weaker and limper than she had been the night before. She was slouched over on the plastic commode, leaning on my brother.
We kept asking her if she was ready to move and she kept asking us to wait. Just wait. Her words were slurred and faint, but gentle. After half an hour I tried to move her and she cried out in pain, I’d never seen her face twist in agony like that. I resettled her on the plastic potty and as I gave her some morphine it occurred to me how little my mother had complained of pain throughout the course of her illness. Over the last month that I’d been staying in town to take her to radiation, we kept going back to her doctor for stronger and stronger stuff until she was on liquid morphine that we administered by mouth in these little syringes. But it was only a few minutes, maybe half an hour before she died that she actually let her guard down enough to let me see how much it hurt.
After an hour or so I couldn’t take it any more. I couldn’t let my mother languish, barely conscious on a plastic toilet in her living room all day. I was scared she was going to die there on the can and I couldn’t let that happen. I wanted her to have a good death. Not a died-on-the toilet-joke-death. My mom and I had a shared close relationship with Coyote, the Trickster Spirit who delivers big life lessons as absurd and often humiliating jokes, but this was going too far. I tried to pick her up, but unlike all the other times in the past few weeks, when she’d put her arms around my neck, this time when I lifted her her arms stayed slack and her head lolled to the side. I crouched over, trying to support her whole body with my arms and pull her pajama pants up with one hand. When I got her in her chair she was half laying in with her back in the seat and her head against the backrest like an old rag doll. I tried to get her gently propped back up but every time I did I was reminded of how she used to call us wet noodles when we were little and she tried to get us in and out of our snow suits when we lived in upstate New York.
photo by Xander Wiswall
I yelled at my husband to go find my mom’s neighbor Tammy. Tammy had been Millie’s caretaker for the last couple years until a few days previous, when Millie, who was probably in her nineties, died surrounded by friends and listening to Pink Floyd. I knew that she knew how to properly lift people who were bedridden and unable to help. Tammy came flying in and by the time we got my mom re-settled her heartbeat was already so faint. Tammy said we should call 911. I told her no, that my mom has a DNR. God, I was so glad that she had made that clear when we were at the hospital. It was part of the hospice intake process. I asked my husband to call my sister at work. She needed to come. I sat next to mom and stroked her arm and her hand and I sang Swing Low Sweet Chariot to her, the same song she sang to me and that her father sang to her when we were young. I cried and sang and told her that it was ok, that we would be ok, that she didn’t need to hold on if she didn’t want to. I held her hand until her skin was cold. And that was the last time I talked to my mother.
It took years for me to let go of the guilt and the trauma of those last couple hours of her life. For so long I felt like I failed her. And that somehow I had betrayed her by moving her. That I killed her by moving her. Images and sensations from that day haunted me. I ran through so many scenarios of how it could have been better. If only I hadn’t gone to get some sleep that night. If only I had come over earlier. If only I hadn’t given her that last dose of morphine. But the truth of the matter was she was dying. She had lung cancer that had spread to her bones and her nervous system. Radiation had only weakened her. She was on hospice care. And I did best I could. And I did a damn good job of caring for her. Of helping her die. I let her lead, most of the time. We were a pretty good team, she and I, at the end. She let me help her in ways she’s never let me before. And that helped me feel closer to her. And important to her. Which I needed at the time. Maybe if she’d been transferred from the commode to her chair more gently she would have lived a few more hours, maybe even a whole day, unconscious, but alive. Maybe my sister would have made it to her side before she passed and gotten to say the things she wished she had said. Who knows? But she was going to die, and very soon. We have this idea of death as either gentle and easy or messy and traumatic. But sometimes it’s a little bit of both. I wouldn’t let her die on the commode, and we struggled a bit to get her settled. But once we did I held her hand and I sang her to sleep, just like she used to do for me.