Friday
She was sitting on the edge of her hospital bed in the darkened room when I entered early on Friday morning. In the dim light filtering in from the hallway I could see her there, hunched over, her head down, silent.
"Good morning, Mom," I said, coming up behind her and touching her shoulder as I leaned over to put my backpack on the chair. She started and looked around to see who spoke.
"Sue?" she asked.
"No, it's Bill," I answered, coming around the corner of the bed and into her line of sight.
"When is Sue coming?"
"Soon, Mom," I said.
"Are you real?" she inquired shakily.
Sometime in the night, between dreaming and waking, Mom had lost her way. Except for brief flashes of lucidity over the next three days, she would remain lost, wondering whether she was alive or dead, whether the voices around her spoke to her from this world or from the next.
And sometime in the night she seemed to have decided it was time for her to leave this world, which had become insubstantial to her, confusing and frightening and more than a little annoying, even if still filled with people she loved. They were there in her mind, it's true, but they were no more real, now, than the figures of other loved ones, long gone, who had begun to cluster around her in the twilight she inhabited. Later that first day, as she named them, I asked, "Are you seeing them now?" "Yes," she replied, sounding surprised that I could not.
None of that mattered now, though, and indeed it all would unfold later as she hovered between the two worlds until, finally, she made up her mind and made her escape. All I could think to do right now was to sit on the bed next to her. I put my arm around her shoulders. She leaned into me, rested her head on my shoulder, and her rigid body lost some of its tension; she breathed a sigh of relief, and for the moment it was enough.
The orderly found us that way when she came in, some time later, with breakfast. I had to help her eat; she seemed to have forgotten about spoons and bowls and food. "Is this real?" she would ask, over and over again, with each new taste.
At about 10 am the doctors came in. "How are you today, Mary?" they asked. "I don't know," she said. "I can't seem to figure out what's real and what isn't, or what's going on. I heard this terrible coughing and rasping during the night (her neighbor in the double room), and I thought at first I was making that awful sound, that maybe I'd died. But now they tell me it wasn't me, it was someone else. I don't know what that's about. All I know is that I was gone, dead maybe, and that Bill brought me back, holding me until I came back. I know that was real, but that's all I know. Are you real?"
The doctors had no explanation, really, for what had happened. Too much carbon dioxide in Mom's blood, they thought; that would explain her confusion. But it didn't, not really. Her breathing and oxygen levels returned to normal and stayed there over the next 36 hours but something had radically changed. It seemed like disorientation, but in fact it may have been we who were confused: despite the possible physical imbalances, Mom was nonetheless shaping a course toward a new goal. She was determined to leave a world that, as her strength and breath and vision waned, was constantly closing in around her, and it took us a while to recognize and accept her determination for what it was.
Over the next couple of hours, Mom tried to reconstruct what had happened, doggedly repeating over and over again a sequence of events that seemed to explain where she was and when. "I came into the hospital for pneumonia," she would say, "and I was getting better. Then today I woke up with this awful sound in my ears and I didn't know where I was. Then I had some breakfast, right? And the doctors came, didn't they? But were they real? Was the food real?"
I tried to help her but often she would ask questions more metaphysical than factual: she wanted to know why she felt so dislocated, or whether the voice she had heard in the night was God. "I don't know, Mom, I can't tell you that;" and the confusion would return.
Mom was still there, though, behind the confusion. More than once she looked at me and said, "I've really put you through a hard time, haven't I? You haven't had it so hard since Amelia, not since her illness. I'm sorry." Concerned about others, always!
The hours passed, until, at around one in the afternoon, Mom said, "I think I'm going, maybe soon. Please call Sue." I got Sue on the phone and said, "I don't know if this is real or not, but can you come over?"
Sue arrived a little while later, and when she was seated on Mom's bed, holding her hand, Mom said, "I want to go now. I think the reason I'm still here is because I changed my mind and came back. Your father always used to laugh at me because I couldn't make up my mind, but now I've decided: I'm going to go." Sue and I probed gently, trying to figure out what this was all about, but it became clear that Mom, at least, was convinced that it was time for her to die.
She spoke about how much she loved her three children, how much joy we had brought her over the years; she said no mother could have asked for more than the happiness she had had with us for all these years. Mom named almost every member of the family, immediate and extended, and said, repeatedly, "Please tell them I love them very much, that I left with love for them in my heart." She would return to this theme several times, adding names to her list; sometimes, she would seem to awaken with the memory of someone else she had been thinking about, and she would ask whether she had mentioned them, whether they knew that she loved them.
And then she composed herself to go, saying, "Well, this is it. I'm going. Goodbye." She laid her head back on the pillow, her breathing slowed, she placed her hands over her chest and said no more.
So we waited. Some demon inside my head began insisting that this wasn't real, that her resolve was simply another of the games her poor mind, flooded in CO2, was playing on her. I found myself struggling not to chuckle as I thought of the expression on Mom's face when, after working so hard to leave, she discovered she was still here with us. And we waited.
After a few minutes, her eyes did indeed open. Looking around, she repeated the question she had asked so often this difficult Friday: "Is this real? Am I still alive?" Twice she said she didn't know "who's in charge now. Maybe it's God, maybe it's Jesus or Bahá'u'lláh, I don't know; but I think we'll all get along well."
She tried a couple more times, but with no result. Her resolve was clear and daunting. She was trying so hard to leave this world behind that it was touching, a little sad; or, at least, Sue and I were sad, because we began to realize that, with her usual persistence, Mom would in fact succeed, we just didn't know when.
One such exchange was telling. We were trying to talk with Mom about her condition, reassure her that as soon as the CO2 wore off she would feel better. "Of course I will," she said. "Where I'm going there's only happiness."
The sense of taste became important somehow. Mom opened her eyes, sometime in the afternoon, and asked, "Do you know the most beautiful fragrance I ever tasted? It was an orange blossom." We discussed how she had taught us that lilacs, clover, sour-grass taste good too, are not just beautiful and good-smelling. She exclaimed how delicious the applesauce was that the nurse brought. Because she had shown no interest in eating her lunch, Sue asked if she wanted some of the slice of leftover Christmas fruitcake Sue had made. Tasting a little morsel Sue broke off for her, Mom smiled and said, "Now that's real!"
Eventually Mom drifted into an uneasy sleep. As I held her hand--Sue had gone to close up her office, which she had left that afternoon in a rush--Mom seemed to be testing something: "Wetter," she would say, then "Dryer, a little dry." Raising her eyebrows, noting a change, she would say, "Wetter now, very wet....dry...a little dryer...wetter...dryer...wetter...." On this litany went for ten minutes or so. I puzzled, all over again, about what she might be seeing, what was she experiencing; what was it she was testing, with its alternation of wet and dry?
After a while she awoke again and, perhaps out of sheer frustration, Mom became very anxious. She sat up, tried to stand, worried with a new urgency about where she was and what was real, about her oxygen. We called the nurse and, after what seemed like hours, the nurse came in with some medicine for anxiety. As the drug took effect, Mom calmed down. We would leave, Sue and I agreed, and get some rest. Mom was comfortable, resting, well cared-for by a staff we had had to train to meet her needs. But now we could rely on them, and so we could go. My vigil, after nearly sixteen hours, was over.
We wondered what we would find in the morning. Would Mom be back, her mind once again clear and sharp, or would her resolve to die have held during the night?
Saturday
Arriving in time to catch the doctors on their rounds, Sue and I found Mom awake but still seeing a different reality that the one we and the other people in the room were experiencing. For a while it seemed as if the clouds might part: Mom was trying so hard to reconstruct the sequence of events that had brought her here. She knew about the ambulance ride, knew about the pneumonia and the hospital room and her dreadful roommate; but she couldn't put them together to her satisfaction, couldn't seem to get the pieces of the puzzle to stop shifting around in her memory. It was as if her mind were caught in an endless loop, rehearsing the things she felt some confidence about knowing, yet unable to see them in coherent, stable form.
Mom must have been exhausted but she kept working her problem, even after she had admitted that she didn't seem to have the wherewithal to solve it. Sue felt that some part of Mom's mind or spirit was working on the facts of the situation, while another part was packing for her trip. And as she packed, Mom gave us glimpses of the world on whose threshold she was hovering.
She had been drifting, not quite asleep, when she opened her eyes and said to Sue "I never knew." "Never knew what, Mom?" Sue asked. "That there were so many choices about when and how you leave." We discussed this later and thought perhaps she was referring to her efforts to die, which had given her so much frustration. Earlier in the day she had said several times "I'm ready to go," or "Why is this taking so long?" or "If there were a plug, I'd pull it; I'm ready to go but I can't!" After seeing her choices, though, she seemed calmer. Had she chosen one of them?
Mom was calmed, too, by our acceptance, or at least Sue's more perceptive grasp, of the fact that Mom intended to leave. Sue began talking with her as if it was Mom talking about this and not some random byproduct of imbalanced chemicals in her blood stream. Mom seemed comforted by our accepting her decision, not resisting her or trying to tell her she was mistaken; when we finally understood what she had been trying to tell us, she could relax.
On another occasion, she opened her eyes again and, wearing a big smile, said to Sue, "I've been on the most wonderful trip!" "Where did you go?" Sue asked her. "Why, everywhere! It's so wonderful, so beautiful. You know, I never realized how it all goes together." "What do you mean?" "All the people, all the places, all history, all the beginnings and endings all flow together, they're part of the same thing, and they go on forever. There's no end to it, and it's so beautiful. Is that God?" Mom wondered.
Mom said again, and several times during the day, how much she loved everyone; she was concerned, really until she stopped communicating with anyone, that the important people in her life knew this.
In the evening she talked of calling some of the members of the family. We suggested maybe tomorrow, thinking that she might be more clear-headed then, but she said, "No, I don't think so. That'd be stretching it." But we didn't get to call: the nurse came in again, as one or another of them seemed to do almost non-stop, and then Mom began talking.
What came out was maybe Mom's last lucid moment, and it was a story about a hellish ambulance ride she had taken with Dad back in Arizona. Suddenly, Mom was back, just as we had always known her, recounting how they had taken an agonized Dad first to a hospital that had too long a line to attend to his urgent relief, and then to a place that had a single doctor on duty. Indignant, Mom recalled this fellow giving Dad a cursory look, then bustling off on some other errand and leaving him in the most awful pain. Every time Mom tried to push the doc, the fellow would reply "I can't do anything more, I'm the only one here and I have another ambulance coming in in just a few minutes." It didn't take Mom long to size up the situation and shift tactics: "Then we're leaving. Get that ambulance back here and tell them we're going to another place!" "Oh, I can't do that," the hapless doctor said, "there is a lot of paperwork and I can't take the time right now to fill it all out. You'll just have to wait." We could imagine, from her voice and body language, how that went over with her on that long ago night! "I told that doctor, 'I don't care about your paperwork and your rules. Get that ambulance back here right now. We're leaving if I have to call someone else and get them to drive us!.' "
Reflecting on this event, Sue and I realized that, in many important respects, the Mom we knew was still with us, even though in some ways her subconscious was gone walkabout. Because that was true, when she spoke, with such clarity and purpose, about leaving, we felt pretty sure we were also hearing the wishes and intentions of that "real" Mom. And because she was always strong-willed and persistent about things important to her, we began to accept with some degree of calm that she would accomplish this goal, too.
The memory of that awful night seemed to galvanize Mom, even as she retreated from the here and now. She became agitated and unreasonable, forcing us to ask the nurses to give her an anti-anxiety agent once again. On this sombre, stressful note, the dark night ended and Sue and I left the hospital.
Sunday
At 7:30 the phone in my hotel room rang. Sue, who had been too tired to go home and who had therefore stayed at the hotel with me, answered with foreboding: the only ones who had that number were the nurses. Any call would be bad news. She spoke quietly with them for a moment and, hanging up, turned to me. "Mom's blood oxygen dropped during the night to 37% and her heartbeat is irregular. They said we should come soon."
Just a few minutes later we arrived at Mom's room to find her wearing an oxygen mask. She opened her eyes a little bit when we came in and tried to speak, but her voice was rough, her words incomprehensible. Mom looked small and tired and pale, her hair awry on the pillow; there were bruise-like circles around her eyes.
We sat with her, oversaw the removal of the mask, and agreed with the doctor and the nurses that what Mom needed now was what they call "comfort care": no hoses, no frequent visits to check vitals or draw blood, no telemetry to monitor heart and oxygen and temperature. All those attachments were removed, replaced by the simple oxygen hose she had worn at her nose for all these last years, and she rested, her blood oxygen levels returning to almost normal levels.
Our day was, really, a vigil. I played my violin for her; she had been such a constant source of encouragement to me about this, had bought an instrument for me long ago. "We should have done this yesterday," Sue said. I agreed, but I like to think she still heard me.
We sat with her through the day, sometimes taking turns so one of us could go talk with the nurses, so Sue could make calls, so we could get something to eat. We went to the cafeteria for lunch together and spent the time laughing and crying, recalling things about Mom and our family, sharing memories that, with some surprise, we discovered were new to one or the other of us.
Sue, for instance, shared a story that was so indicative of who Mom was. Shortly after moving to Missouri, Sue related, Mom would get really disturbed when a storm would approach, calling Sue as many as five times a day urging her to drop whatever she was going and go home. Finally, Sue asked why Mom was getting so upset. "I hate storms," Mom said, much to Sue's surprise. "But you taught me to love storms," Sue replied. "I have such happy memories of sitting with you in a window seat, eating green grapes and watching some dramatic storm pass by outside. Now you tell me they scare you?"
It seems that when Mom was very young, in fourth grade maybe, a storm had come to Glen Ellyn, where she grew up. The school sent all the children home, so Mom, a frail little girl in a dress, began walking home alone. Part way there, the storm caught up with her; the wind gusted her into a thorn bush where, terrified, caught on the thorns, Mom waited for the storm to pass.
"Then why," Sue asked, "did you never tell me about this, never let on about how you really felt about storms?" Mom replied simply "I didn't want my children to be afraid."
By four o'clock, Mom's breathing had become shallow, her heartbeat fainter and fainter. It seemed at one point as if she might be struggling to swallow, so Sue went out to the nurses' station to see about setting up something to take off the accumulation of saliva. I sat with Mom, looking into her face.
She seemed too quiet to me, too still. I looked hard for any sign of breathing, any flicker of movement of her eyelids or at her throat, where a vein pulsed softly...but I could find none. Pretty sure she was gone, I went out in the hall, asked the nurse to get the doctor, and took Sue's arm in mine, heading us back toward Mom's room. We stood there, holding each other and looking at our Mother, knowing the worst; and we waited.
After a few moments the doctor came in, went over to Mom and tenderly sought confirmation of what already seemed a certainty. The doctor looked up at us, nodded, put her stethoscope around her neck, and walked over to hug us both.
Mom's long journey among us was over and another had begun, underneath, as James Taylor sings it, other stars, beneath another sky. She had wanted to take this journey, was eager for it. She felt no pain, no fear, only concern that we who remain here might know how happy we had made her, how much she loved us. Sue had asked her whether she would still be with us, looking after us, peeking over our shoulders. "Like a little angel," Mom said.
