MY MOTHER IS DYING
Slowly. She is as tenacious in her dying as she was in her living. Although now she is comfortable, or can be made to feel comfortable, which in life was nearly impossible.
“She’s a survivor,” one nurse said.
“As she lived,” I respond.
Her hands and feet are like ice. The cold creeps up her legs, but only to her knees, in four days of this final life process. The opposite of birth the hospice nurse says, for in death the circulation diminishes in the extremities first, or in her words “as the soul leaves the body.” Each shift nurse checks her pulse, blood pressure, and heart rate. Her heart rate remains normal, but they can’t detect her blood pressure. Each evening I feel her legs to determine her progress:
“Should I go?” “Is death near?” “Should I stay?”
“We’ll call you if it’s getting close.” So I go. The drive to my motel takes 20 minutes. It’s late spring and still daylight, but the light is softer. It’s been hard to leave the nursing home, yet I’m afraid it will take forever for her to die. I head to Blockbuster for a video and the grocery store for Vanilla Carmel Fudge ice cream—my nighttime comfort.
The nursing home had called me in Philadelphia late Monday afternoon. “Your mother is very close to death. Her skin is mottled and her body temperature is dropping.” From our previous conversations I know these are the signs of dehydration and the general slowing down of bodily functions.
“How much time do I have?”
“Twenty-four to forty-eight hours,” they tell me. Unsettled, I make disorganized preparations to go. Cancel client appointments, make airline and car reservations, board the dogs. I call friends, sadness and panic gripping me just below the surface; call anytime they say. But even so I feel so alone. Once on the plane I feel the pull inside me to reach the west coast. Yet it’s one of those wondrous days when the sky is clear and clouds aren’t obstructing my view of the ground. The plane passes over the land at what seems like an unhurried pace. I lean my head on the window and drift, watching the patterns of field and wood, the shades of green and brown, rectangles, squares and the curious perfect circles (which I always imagine are landing fields for ships from outer space). I follow the winding rivers and ruler straight roads, the gentle uplifting of grayish land prickled with green into dark gray mountains and barren crags. Periodically I look at the map in the seat pocket to locate where I am. Usually when I fly, I’m asleep before the plane leaves the runway, but this flight helps me as I can only be where I am.
Last time I was here, 10 days ago, I learned she’d had a second bout of pneumonia and was not recovering. She’d been so close to returning to her room at assisted living, but now she was barely eating or drinking. Her body was losing strength and she was losing interest in what was going on around her. But she was calling the shots as she always had. An aid told me how she nagged him until he took her outside in her wheelchair. She sat in the sun, spent a long time looking at the trees and sky, and seemed to listen to the birds. He wondered if she was “It won’t kill me” she said. After this final trip outdoors she went to bed and stayed there.
This time when I arrived she only had short periods of awareness. This was unlike my previous visit when we made a collage together, she tried on the new clothes I’d bought her, and sang hymns with Amy, from the Salvation Army, and the other residents. Also, when Terry from the assisted living home visited she recognized her, although not sure from where, and held on to her hand so she wouldn’t leave.
She never forgot who I was throughout the three or four years of dementia. Now, delighted I was there, although she wasn’t sure why, she held my hand in hers, her long fingers still lovely, even in their thinness. She stroked my hand, saying over and over, “My precious, my precious.” I had rarely experienced such un-ambivalent touch and words of tenderness. I was shocked at how cold her hands were; I held them trying to transfer warmth from my own. I felt grateful to be here at this time in our lives.
Hospice was now her primary care giver. Early in the day she was at her best, smiling and charming when relating with the staff. She’d tell people I was her beautiful Arab girl: “isn’t she beautiful, doesn’t she look like an Arab?” It was clear to me she was liked by many of the staff. They’d come by “Hi Rosie, how are you today?” and tell me of her will and tenacity, her humor and beautiful voice, as well as how stubborn and demanding she could be.
I began hearing more stories about her. The preacher, who gave communion to the residents at her assisted living home, told me his favorite Rose story. “She was sitting in the hall and I reminded her we would be celebrating communion soon. She was in one of her stubborn moods and said she wasn’t interested. I said I would say a prayer for her anyway. She looked slyly at me and said, ‘Let me know how it comes out.’”
Now in this final visit she is quiet. Initially she is turned towards the wall. Her favorite position the nurses say. Staff and volunteers stop by as I sit with her. Amy was shocked by the change. “Just last week she was up and singing with the group.” She encourages me to join her in singing to my mother. As I softly follow along, my tears flow, chocking back my voice.
Ted, the pastor from hospice came to talk and I tell him a bit about hers and our lives. I feel like I’m betraying her and yet I also feel compelled to say how difficult it was for her to be her and how difficult it was to be her daughter. When he says a prayer before he leaves, he holds her arm firmly with his hand and says words that resonate with her life and my understanding of her. I lose it again and my tears flow.
I develop a routine of staying with her through the morning; taking a break mid-day and returning in the afternoon and early evening. I read, worked, and one day, took off for a movie. It felt irreverent to see a movie while my mother was dying, but not only do I love movies, but they help me come back into my life with a clearer head. I saw The Bourne Identity and as a French mini car careened wildly down a long flight of stairs, I call out “do that again!” along with the rest of the college audience. It was a terrific release!
While sitting with her I attend to her needs. Her strength amazed me. Shewould pull herself over by gripping the rail of the bed. I tuck a pillow along her back to provide support. When she pushes her covers off, I pull them up when she gets cool. I get the nurse for her meds when she seems in pain. Early on she rolls toward me and stays on her side or back until she dies. Now I could try to warm her hands or stroke her arm. I’m careful, as she has minimal tolerance for touch. I don’t know what she is aware of, but I begin to talk to her in a soothing voice.
My mother had read and reread the New Testament, searching for release from the suffering in her life. She copied pages of the Bible and prayers in small script on scraps of paper or in tiny notebooks. These writings would veer off in tirades against her enemies or disjointed memories of the past. On my last trip I cleaned out her room and found handfuls of scraps, notebooks and old photos. Her writings disturbed me, even after all the years of knowing she was mentally ill. I throw most of them away. There is one small book that is dedicated to my brother and me. I dedicate (sic) my book to my children who by no fault of theirs were instrumental in my own growth. I wish them to prosper by the contents herin. (sic). Their names are Sylvia Rose Elias 1938 Andrew Paul Elias 1940 who came to my assistence (sic). She loved us and never stopped thinking about us; but I couldn’t get past her pain and paranoia to be with her. The book is written in pencil in a very small print, now smudged with time, nearly impossible to read. I can make out a few phrases, and they are so disturbing I both want to figure out what she is saying and I’m relieved I can’t.
My mother’s dementia was a release for now she no longer acted out herparanoid thoughts. It’s as if a paranoid thought enters in one ear and never comes out again. She was no longer pushing me away, allowing me to do things for her. Because of her age she had been living in a senior apartment building in Chico, CA and the woman in the coffee shop across the street recognized something was wrong. She spoke to the lawyer we had used and he called me. That’s when I was able to get her into assisted living.
Now I talk to her of letting go, telling her she will find comfort and beautyand a release from all suffering. That she will be with her family who has preceded her. The Angels will come and lift her to the table of the Lord where her father (who she sat with on the Lower East Side when he met friends for coffee and backgammon), and her mother (now free from her own hurt and despair), her brother Joe (who in his last years rejected her, yet left more than enough money in his will so she is well taken care of), her sister Melvina, (who loved and played with her until she died at age twelve, when mother was four), and baby Constantine (who died soon after birth) look forward to her arrival. They are happy now and are waiting eagerly to be with her again. Every hour or two I tell her of this peaceful release and the joy that awaits her. Now and again she lifts and turns her head slightly, as if she wants to hear more.
On Friday, day four, Amy and her three daughters stand at the door and sing a hymn to her. Their voices are sweet and beautiful. It’s a respite for me and I’m grateful and sad. I’d been dealing with an ex-investment banker, who was telling me in his banker’s voice, more than I wanted to know about how, in retirement, he became a hospice nurse. I was becoming territorial and protective; my finger to my lips if people were too loud.
In hindsight, four days isn’t a long time. I’ve been with longer deaths; my father and a friend. But it’s like my flight here, no matter what’s going on in me it takes as long as it takes. I’m not sleeping well, and although everyone is kind to me, I’m far from home. But, on this day the panic is rising in me again, she looks frail and closer to death and I need support. I call Hospice and ask if Ted can come by. We talk. I tell him how she lifted her head, seeming to listen, as I told her the Lord is waiting for her. I ask if he would say one of his wonderful prayers over her. I weep with the prayer and seeing her so frail. As Ted finishes he spoke of the afterlife he and my mother believe in. As we talk he was startled when I
said something to indicate that people just die. “You believe people just die?”
“Yes,” I respond, “though sometimes I call myself a just in case Christian.” He seems stumped.
Anyway he says, as he’s about to leave, “Can I give you a hug?”
“Oh, yes,” I say. It is just what I need. He puts his arm around my shoulders and I give in to his strength.
I’ve already planned where I will release her ashes. It’s a lookout on a butte I pass each day. There is a gully below. There is often a haze in the distance tinged with gray and pastel hues. The mountain range, in the distance, emerges as a darker gray-mauve shadow. The Pacific Ocean is on the other side. There are pines growing on either side on the flat surface of the butte. Between the pines is an open area which is desolate, unprotected, and yet beautiful. The spot I want is there, where a small wispy pine clings to the edge of the cliff. Here it can’t thrive, but it survives. It is my memorial to her.
On the sixth day, when I could tell she was much closer to dying, I wanted to give her something more. I found the Salvation Army hymn book. This led to another story. While my mother was still in a wheel chair she decided she wanted the hymn book and wouldn’t give it back to Amy. Finally, Amy said, “I guess you need it more than me,” and my mother held it to her chest as she wheeled up and down the hallway singing.
I tried to sing hymns that seemed appropriate but were new to me. Couldn’t do it. My mother and brother had beautiful voices. I’m tone deaf and flat. I tried hymns I knew: “Onward Christian Soldiers,” “O, Little Town of Bethlehem,” and “Silent Night, Holy Night.” It was a poor attempt and all I could think was mother groaning “Oh, Sylvia, you’re trying, but you can’t carry a tune!” So I read some of the more beautiful hymns as poetry.
It was hard to leave this night. Her legs are cold, but it hasn’t extended to her trunk. Again, reassuringly “We’ll call you.” Driving back to the motel I’m anxious and uneasy. I’m worried I won’t be there when she dies, even though I know it doesn’t matter. But it seems important to complete this final cycle. I’ve stayed at this motel before. It’s a lovely place. There are lovely landscaped gardens. The staff knows why I’m here and they ask how I’m doing each day. It makes it easier to come to a motel each night.
The next morning I both want to rush in and hold back. When I arrive she’s had her sponge bath, the sheets are clean, and her hair is combed. She’s on her back, the sheets smoothly drawn under her chin. Her mouth is open, her breathing shallow. Stroking her forehead, I tell her she’ll soon be with her family in that peaceful heavenly place. The Angels will gently carry her there. The Lord is waiting. Her family is waiting. I’m near tears. My sadness is so complicated. I cry for the mother I longed for and never had. I cry for my mother and her lifetime of pain. I cry for this vulnerable, fragile, tough woman who is my mother.
A week later, when I fly in to pick up her ashes, it’s an unusually overcast day. I’d planned a sunset scattering, but I’m disappointed. I want the usual clear sky with the pastel colored hues the mountains shadowy in the distance. I decide to go anyway and I take the box with her ashes to the bluff. The sun breaks through the clouds behind me as I scrape some of her ashes around the base of the little pine tree and into the ground. Maybe some of her ashes will seep into the soil and nourish the tree while the rest I open to the wind and to freedom.
SYLVIA ELIAS has an MSW from the University of Pennsylvania and lives in Powelton Village. “When I was young, reading and writing was difficult for me. The first thing I wrote about was sitting with my mother as she was dying. I know in hindsight many of the details of our time together would have been lost, so I appreciate the opportunity I had to be with her and record my experience.” She was a member of Rachel Wenrick’s Fall 2015 Creative Nonfiction.