The phone rings. The hour is past midnight, and my bedroom is dark. I reach for my phone, already knowing who is on the other line. The hospice nurse speaks in clipped, muted tones. Mom is “in decline,” and if I want to be with her when she passes, I need to come down to the hospice center now.
I get out of bed and make my way to the bathroom. I brush my teeth and put on clothes. I look at myself in the mirror. My face is expressionless. I don’t feel sad or scared. More, anxiety. Am I doing this right? What’s the right way to do this? I shut off the light.
My wife Allison is awake now and sitting at the bottom of the stairs. By her face, I can tell she also knows what is happening. Why else would I be dressed and looking for my keys at three in the morning?
But she asks anyway, and when I tell her she starts to cry. She asks if she should come with me. I say no. I don’t want her to see any of that.
The drive from our house to the hospice center takes only five minutes. The road leads out of our small Pennsylvania town to hills and pastures with cows and farmhouses on either side. From there, I take a sharp turn onto a gravel road where trees line either side, making a tight canopy overhead.
It’s easy to miss the transition from town to country. The difference between them is subtle. The town is a small oasis of civilization — houses, businesses, a liberal arts college — among vast stretches of grass and trees and marshes and rivers and other small towns.
The hospice center is a converted house with four bedrooms. It has a kitchen and a living room and dining area where bay windows open to a view of the neighboring hills.
But Mom has not seen any of this.
Ten days before, Mom and Allison and I made the journey from Las Vegas to Cleveland by plane. Then we drove for 90 minutes from the Cleveland airport to our home. When we pulled into our driveway, Mom was weeping with the pain. I had decided to wait until we got home to give her the next dose of liquid morphine, and she was certainly not interested in the scenery.
By the time we pulled into town, the sky was dark and she couldn’t see the grass or the trees. She could barely see the deer that stepped in front of our car, when I slowed to a stop and the deer blinked stupidly at us and ran away.
She had no interest in watching the sunset, only asking that I drive faster so she could have her medicine.
Why I was so anxious for her to see the scenery, I don’t know. I suppose I wanted this all to be a thing we experienced together. I wanted us to see the same things. We were already so separated. We had such different concerns.
The spare bedroom on our house was not at all a hospital room. I thought she would like that. Shelves on every wall were lined from top to bottom with books. I had pushed my desk to the foot of her bed so she could watch Game of Thrones on TV. The windows were always open and the sunlight streamed in. If she looked outside, she would have seen trees and blue sky.
But she never looked outside. The things that mattered to me didn’t matter to her. We both focused on what we could.
When she made the trip from our house to the hospice center by ambulance only four days after she arrived, she cared even less. “Care” is the wrong word. She couldn’t think about it, not even passively. I don’t know what she could think about, or if “think” or other words of cognitive state applied anymore.
She had made a profound change. Another separation. She had stopped eating and talking. I didn’t realize how much we had been talking until she stopped. She slept almost all the time and made only short, one-word answers when spoken to: Yeah. Okay. Alright.
Death was like a stairwell into a dark cellar. Each step I could see her less. Her personality had become reflex, not the product of a working mind. She stared off into the distance for minutes at a time. She no longer knew where she was or what was happening to her. The only thing she seemed to recognize was my voice.
When I would say, “Mom?” to her, she would respond, “Yes, dear.”
The doctors had given Mom six months. Now ten days after getting her to Pennsylvania, she was dying. I thought we would have more time. I thought I could take her outside, maybe even take her to a museum in Pittsburgh after she felt better. I wanted her to see things.
What was the importance of her coming here? Everything moved in concert to speed up the bureaucratic machine of medical insurance and airline regulation, only for her to arrive and leave again. She didn’t even get to see the Pennsylvania spring from her window. If she didn’t see where she was, why did it matter?
It doesn’t make sense.
Then again, seeing my mom in Pennsylvania at all doesn’t make sense. I’ve only ever known her against the desert of Arizona. Her presence here feels anachronistic, especially now.
Death itself seems native to the desert, not the hardscrabble earth and melted snow that covers our ground before spring.
It’s hard to communicate the desolation of Arizona in the summertime. Even in densely populated areas, the heat is like an oven blast. Everything is slowed down and washed with a blankness almost beautiful in its uniformity. It’s less like weather happening to the world than the world and the weather deciding all at once to change together, and every single person responding accordingly. They avoid going outside during the daytime. They seem to talk less. Fewer things happen.
This sounds like it would be unpleasant, but it isn’t. It’s like a dream or a hibernation, a purgatory where objects don’t merely exist but signify. When the canvas overawes the painting, the forms that emerge carry heavy meaning.
I will probably always think about death as an Arizona summer. Maybe Mom is experiencing death like this. A hot, blank state where forms are heavy with meaning.
The night nurse meets me at the door of the hospice house. She is tall and pale with big eyes and a tremulous voice. She leads me to Mom’s room.
Mom lies on her hospital bed, covers pulled up to her neck. She is halfway between sleep and wakefulness, as usual. One difference is now her breathing is raspy and labored.
“She keeps trying to get up, poor thing,” the nurse says.
The nurse has mentioned this before. My mom is suffering from something called “terminal restlessness.” She will try and kick off the covers and get out of bed, not knowing where she wants to go. If left alone, she would crawl out of bed onto the floor, so she can’t be left alone.
Every breath sounds like someone sucking the last bit of a milkshake through a straw. It is impossibly loud. It is constant and rhythmic.
I’ve been told by several people that a patient in the last throes of lung cancer does not feel pain in this labored breath. But that seems impossible. Hearing it, I understand why she is restless. That sound would make anyone restless.
They have brought a cot into Mom’s room for me. They don’t know how long it will take.
I sit with her and hold her hand and listen to her breathing. I try talking to her. Sometimes she responds with a word and sometimes she doesn’t. At one point the nurse comes in to check her, and Mom calls us both “worry warts.” These are the last words she says to me.
Her breathing becomes worse. She won’t go to sleep. Who could? The sound is unbearable. I can’t imagine that she is not in pain.
After hours of it, the struggle to breathe becomes even louder. It’s like she is yelling with every breath. I call the nurse in and ask if there’s some larger dose of morphine we can give her to help her sleep. She tells me they don’t even have needles. It is a hospice center, not a hospital. I ask again and she gets on the phone to her supervisor.
The nurse stands on one side of the bed and me on the other. She is still on the phone when my mom’s breath catches. She can’t draw in air. The nurse says “never mind” and hangs up the phone.
My mom’s chest keeps rising and falling with the effort to bring through air. But no air comes. She suffocates. Her lips turn blue. The nurse strokes her hair.
Mom’s eyes don’t close. I don’t know what she sees, if she sees me anymore. I don’t know if she’s there. Her lips are blue, but maybe her eyes still see. I don’t know at what moment eyes stop taking the interest to see — whether this happened days before, when she couldn’t see the trees and the deer that stopped in front of our car, or now.
In a sense, looking into the face of your mother is like looking into a mirror. You look out of different eyes but see yourself. This is my blood. We see.
But now I look into my mom’s face and the same resemblance is there, except the mirror is dead. A dead mirror, in flesh. Her lips have gone from blue to white. Her eyes are staring but not at me.
We don’t see the same thing anymore.
I wait around to talk to another nurse about what will happen to my mom’s body. I sit on the couch in the living room and pace. Waiting.
I hear the big-eyed nurse talking to the body as if trying to comfort it.
I talk to the nurse about cremation and drive home and my headlights reflect and follow on the telephone wires above the road, the light carrying along farther than I can see.
When someone you love dies, there are two deaths. There is the death of the person. And that comes to a lack, a debit. A person is whisked away, and you have to reckon with their ever existing through fading memory and the lack you feel. Different people leave different lacks.
But there is death itself too. Apart from the pain is the reality itself — a palpable thing in the world. Tangible, big, and unmoving. An awful credit. Not a lack, a presence.
As many who have experienced grief will attest, in many ways the aftermath of death is harder than the immediate event. The lack and the presence of death, both concretes, give way to abstractions. Mom herself has become abstract, an urn full of ashes on the shelf. The experience has been relegated to memory, images that don’t correspond to my working model of the concrete universe. I have never not had a mother before. Even that fact takes some getting used to.
The image of Mom’s lips turning blue comes to me at odd times — in bed trying to sleep, standing at the sink doing dishes. I have to know how to think and feel about it. Needing to know becomes the problem. I have a hard time sleeping.
Six weeks later, I am in Kansas with my wife’s family, celebrating her grandmother’s 90th birthday. Grandma Kay is surrounded by family, all telling her they love her. She is happy, at peace. She seems to have figured it out. A solution. She’s not concerned about figuring out a solution, but she has somehow.
A week after we return, I remember a few things. Things and people and books I love. It doesn’t matter which ones they are. They are more important for what they evoke than what they are. And there seems to be a direct correlation between the meanness of the thing and the depth of its evocation. Describing them would be misleading.
I still have a hard time sleeping, but it’s somewhat better. Now Mom’s death is less like something I need to solve. It’s more of a broom that has swept away petty happiness. Life after death seems real, because real life, as opposed to the gray, frittering cares that pass for life, is possible.