Returning to my blog after some years away, I am publishing a personal post on the death of my sister, a bridge over my recent silence.
This is a blog about mysteries, about murder mysteries, and so, in its way, about death. The great mystery writer, Dorothy L.Sayers, as we all know, gave up writing murder mysteries at the time of the second world war, disturbed at the thought of entertaining through murder when the world was absorbed in killing on a massive scale. I have always felt some uneasiness myself with the use of murder for entertainment, and yet I have often read murder mysteries for my own amusement (though I have never been actually amused by horror), and I have even written murder mysteries myself.
But in the last few years I have been dealing with death in my own family, not murder certainly: My only sister died slowly of a rare lung disease, and I found it impossible during this time either to write or read for pleasure the literature of murder. I am emerging from this time, and I will go back to thinking again analytically about murder mysteries, if only because they are such a major feature of the reading, TV and movie entertainment of our times. One can surely ask oneself why this is and I am going again to take up this question.
But first, I am going to take up the question of my sister’s death. When people are dying of “natural causes” we do not talk about murder of course. But dying of “natural causes” rarely seems natural to the people who are going through it, and I have lived in the last couple of years with questions of how the individual deals with “natural dying,” and how society deals with the dying individual. Here is my story of how I experienced my sister’s last years, when I was traveling back and forth between New York City and a nursing home in Caerleon, South Wales.
A Book that Explains Everything
In memory of my sister, Marjorie, who died on February 23 a year ago. She didn’t live to see spring last year. The photograph was taken in her own last spring.
“Somewhere in the house there is a book that explains everything, but I can’t find it. If I could, I would know what all this is about.” I heard her little voice on the phone saying this, saying it as she now said everything, with long pauses between each phrase: “Somewhere in the house . . . there is a book . . .that explains everything . . .” I should have known then that the end was coming, that this was my last chance. I should have walked out of my house, gone directly to the airport, got on a plane across the Atlantic yet again, endured the long flight, and the long bus ride from Heathrow, and burst exhausted into her little room in the nursing home and taken her frail body into my arms and said, “I’ll find it, the book, if it’s in the house, I’ll find it.”
But I didn’t. Instead I thought wearily, “She’s going into a dream world. She’s half asleep on the phone. She isn’t rational any more. I can’t really talk to her. I’m tired myself.” But three weeks later when my sister died, I regretted this more than anything. I did not help her find the book. Not then or ever.
I regretted other things. The last full day we spent together, I sat for hours by her bedside as I always did on those visits. She slept a lot, off and on, but around five o’clock they brought her tea on a tray. I helped her to move from the bed onto a chair. She didn’t want to eat the dreary sandwich on her tray, and suddenly she said, “Let’s go to Curro’s!” She looked animated, hopeful, quite like her old self. Curro’s is a good restaurant down in the town.
I looked at her, her little emaciated body, her uncombed, unruly gray hair, her crumpled T-shirt, her thin, droopy trousers with the clear outline of a diaper in them. “Curro’s!” I said. “How can we possibly . . .?”“We can call a cab,” she said.
“But,” I was hunting for words, “what if you’re ill down there?”
She laughed. A rare sound. She hardly laughed any more. “What difference would it make? I’m ill up here!”
“Yes, but . . . we’d have to get a wheelchair, get upstairs in the lift to the front door, wait there for the cab . . . and then, what if you’re car-sick? And you’re not dressed.”
“I’m dressed enough,” she said. “Who cares at this point?”
I tried to imagine doing this. Perhaps I could pull it off. If only someone else were there to help me. I felt unutterably tired. It was my last evening. I’d planned to leave the home a bit earlier than usual, walk down to the town, grab some dinner somewhere, go back to the B and B., pack and go to bed early. These were the trivial notions that basely went through my mind. These and the seemingly insuperable challenges of singlehandedly getting her in and out of cabs and in and out of a restaurant. How would I get her to the toilet there? I couldn’t do it. I simply couldn’t do it. It was too late.
“Why can’t we? Why can’t we?” she said. How could I resist the pleading note in her voice?
“But what will the staff say?” I asked feebly.
“I don’t care what they say,” she almost shouted.
I looked silently at her. She knew I wasn’t going to say yes. She toyed with the food on her plate, pushed it away.
“I don’t want this,” she said.
“At least drink the tea,” I said hopelessly.
“Tea? I’ve drunk enough tea for a lifetime,” she said, and pushed away the thick white cup roughly so that it slopped all over the tray.
We sat in silence for a long time. “Would you like to watch the TV news?” I said eventually.
She eyed me with pure scorn. Then some minutes later she said, “I’m very tired.”
“Shall we get you into your nightie and back into bed?” I said.
Always this had been a good part of the long days at the nursing home for me, the time when I could help her, could be gentle, baby her a little, could sponge her face with a warm cloth, brush her hair, puff up her pillows, and almost deceive myself into thinking I was making her happy, sitting there looking for seconds neater, better, more herself. I would say good night, walk the long walk down the hill into the town, tired but glad at having been there with her—for her, as I liked to think. I could forget that she was then facing another night alone, a long restless night, waking, dreaming, feeling sick to the stomach as she often was, coughing, waiting for the morning, and another long useless day. I had to forget this for an hour or so. And, I admit, I could.
But this night was different. I could forget none of it. I was leaving in the morning. We both knew it could be the last good-bye. And I had said no to Curro’s. It took half an hour to get her into bed, and then I stood there. “You’d better go,” she said. What were my last words? It is terrible that I can’t remember.
I do remember walking out of the house, onto the road, crying useless tears. It was cold. I was dead tired. I had no heart to go to a restaurant. I went straight to my room, packed and went to bed. On earlier visits to the nursing home I would call her on the phone from there to say I was safely home. I couldn’t do that any more. She had stopped picking up the phone. I knew she was just lying there, facing another long night. She hated the nights.
Why did I never just stay a night with her? I could have said to the nurse in charge, “I’m going to sleep on the chair tonight.” It was a comfortable chair, with a footstool. I often dozed on it during the day. Why had this never occurred to me as a possibility? Perhaps in the dead of night we would have talked, really talked. In the night they put up rails around the bed and she was well and truly trapped. She had to ring the bell for someone to come and take her to the toilet, sometimes four or five times in a night. I could have done this for at least one night. She could have let the railings down. She would have felt almost like a normal person. That was what she always said when I asked her what she would like, she would say in desperation, “I would like to be normal. That’s all. Just a normal person.”
I could have stayed the night once, for God’s sake. But every single evening I was tired. I wanted to walk down the long road, breathe the evening air, eat fish and chips in a pub, drink a glass of Guinness. I could pretend for a couple of hours that everything was normal for me, that my one and only sister was not slowly gasping her life away with diseased lungs in a nursing home. How could this be? When only the other day we were sitting in her pretty little apartment, talking, laughing, drinking tea out of her pretty bone-china tea-cups. But it wasn’t the other day, it was four years ago, and she was already thin then, beginning to cough, beginning to wonder what was happening.
That’s how it’s been ever since, wondering what was happening, wondering what it was all about. The consultant was clear enough when she first made a diagnosis. She gave us a specific name for a known disease “nontuberculous mycobacteria,” something like tuberculosis but not tuberculosis. We all felt better when we had a name for it, but what then? No, there was no certain cure. Heavy antibiotics for eighteen months, which might or might not work. Fine, she would try it, but Marjorie was already too frail for heavy antibiotics. One week of them and she was in the hospital.
“If you cannot tolerate the cure,” said the consultant clearly and simply, “then it will be a steady decline.”
“How long?” we asked.
“It’s impossible to say,” said the consultant, a youngish good-looking woman who talked calmly and precisely, pointing at Xrays on a screen, exuding professionalism and know-how. Except that she didn’t know how to tell us what was really happening to Marjorie, what would happen, what the decline would really be like. “It differs greatly,” she said, “from patient to patient. You must try to eat as much as you can to give yourself the best chance.”
Marjorie looked penetratingly at this specialist in her field. The doctor sat trimly on her office chair, crossing her slim legs, and projecting genuine concern.
Marjorie said, “Do you like to eat a lot, doctor?”
“I’m afraid I often skip meals,” said the doctor.
“Watch out,” said Marjorie, cheekily. “In your job, you’ll soon be a candidate for nontuberculous mycobacteria yourself.” The doctor forced a smile.
At that time, we could still make jokes, the name of the illness tripped off the tongue, we did not think too clearly about dying. After all, it was only the other day that we were in the prime of life, walking along the promenade in Brooklyn Heights, looking across at the skyline in the sun where the twin towers of the World Trade Center were still standing. We were drinking coffee out of paper cups, talking, laughing . . . but it wasn’t just the other day, it was a couple of decades ago. Our father was still alive then, and death was the problem of his generation, not ours.
We had seen him through the last long months of his dying. But there was a different quality to it. It was a far cry from Marjorie’s dying. He was ninety seven for a start, and she was twenty years younger than that when she started to become seriously ill. He had outlived most of his contemporaries; many of hers were still alive, and not only alive but well and active and could bounce into the nursing home to visit her, wearing good clothes and sporting new haircuts. Of course she was glad to see them, but of course it was agony for her to think that she was no longer one of them. She had left the world of the normal too soon, and had gone into that special place where the sick, the aged and infirm live out their “lives,” waiting for the end.
Our father had been waiting for the end too. It was time, he used to say, for him to stop cumbering the ground. But he was in his own home, and we were looking after him, the two of us. It was different for him, and very different for us. We were in it together, taking the night vigils in turn, grumbling, laughing, crying together. And he believed firmly in God. He was going to his long rest. His dying was waiting for God to take him. And when God took him, we grieved for him, and thoughts of our own death did not impinge much on our consciousness. We were then in our late sixties, but until the end he called us “the girls.” While he held on to life, and to us, we stayed young and strong.
After all, it was only the other day that we were teenage girls in Wales, sitting on the gallery in chapel on a Sunday night, trying to concentrate on what our handsome father in the pulpit was saying—we listened to him twice a Sunday year after year—but really looking half the time at the boys on the opposite gallery, thinking of how after chapel we would all go for a walk on the canal bank. How slowly the time would pass, ticking slowly on warm Sunday evenings. Only it wasn’t the other day, it was sixty odd years ago. Did she ever think of our Sundays in the long nights in the nursing home? Those nights passed slowly, slower than Sunday.
“How much longer will this go on?” she would say to me, her pale blue eyes wide in her painfully thin face. When we were young and looking at the boys on the gallery she used to worry about being fat. That last night when I didn’t take her to Curro’s, she weighed less than eighty pounds.
“How long will it go on?” she asked the consultant back at the beginning, and got no answer. By that last night when we didn’t go to Curro’s she wasn’t seeing the consultant any more. She couldn’t make the trip in to the hospital and sit for an hour in the waiting-room. The consultant apparently had no more to say to her. She had not been able to tell us at the beginning what the decline would be like, and now that the decline was reaching its nadir, she was apparently not interested in seeing what it was like. She could, I sometimes thought, have helped new patients if she had made her way to the nursing home and taken a look at the actual dying process. But no doubt she had enough to do prescribing cures for the living who were strong enough to survive. The dying could die slowly without her, without anyone who really knew the disease or what to expect.
“How long will it go on? What will it be like?” These questions were addressed now to the friendly general practitioner who came to the nursing home every two weeks to perform his appointed task of jollying along the elderly residents. He was good at it. He would make jokes. Marjorie stopped asking him her questions about what to expect after he had several times said things like, “If you stopped worrying about your waistline and ate a bit more . . .” She would smile weakly. I think she wanted to scream.
She would put her questions to the nurse manager who would talk about anorexics who had cured themselves by positive thinking. I pointed out to the manager that Marjorie had never been anorexic. “Marjorie is not very positive,” she said, “She pushes her food to the edge of the plate before she has even tried to eat it. It upsets the other residents.”
She stopped eating in the dining-room. Once, about seven months ago, the “decline,” we thought had really hit rock bottom. She was so sick that they thought she was dying and even gave her small doses of morphine. This time, an expert on palliative care for hospice patients came to see her. She came several times, a very nice woman called Jane. She was there to listen, she said, not to talk about the illness itself. She was not an expert in lung diseases, she said. She came in June, but Marjorie rallied for unknown reasons, and when she was still alive in November Jane still came but less often. Marjorie asked her what she could expect. Is this dying? she would ask. Jane said there was no way to tell. She assured Marjorie that her dignity would be maintained at all times and they would make sure at the home that she was not in pain or distress. But when Marjorie said in November, “I feel as if the end is near, Jane, is this what it is like?” Jane said, “Well, Marjorie, you have thought that before, and here you still are.” She did not come back much after that, and there were several months to go before the night when I refused to go to Curro’s.
In those months, a minister came. He came most weeks. I was there the first time. She was skeptical and she was honest. When he wanted to say a word of prayer, or read from the bible, she said calmly, “I would prefer to forego that at this point, it might be nice to do it, or even to sing a hymn, but it would not be totally honest.” He was a good man and saw her point. She had not been to church since our father died. But he went on visiting, sometimes reading and praying, she told me that, and at her funeral, he talked very movingly about how before the end, he had asked her, was she ready to go, was she at peace with God, and she had said, “Yes.” I never asked her that. This was one of the many things I never asked her.
Perhaps the minister really did make it easier for her to live with the fact of dying. I never knew how to do that. I regret not having tried harder. I never felt that she was at peace. I know she wanted to die, she said so again and again, her life in constant sickness and frailty was nothing but a burden, but was she ready to go? Again and again she wanted to know what her illness was all about. “How am I supposed to deal with it?” she would say, “If only somebody would tell me.”
She wanted to be normal again. That I know for sure, and when one night someone failed to fasten the rail on her bed, she managed to lower it, get out of bed on her own and go to the toilet, she did not take the walker that always stood by the bed, and she fell. She lay there a long time before someone found her. She had broken all the rules: The call button was not around her neck where it should have been. She wasn’t doing what she was supposed to do. She was being a normal person, not an invalid confined to her bed, and this led through terrible pain and a broken hip to her death in two days, the death that the mycobacteria alone would not allow her, at least, no one knew when.
I regret that I did not rush to the airport when she told me about the book that explains everything. The minister thought she was at peace with God. I knew her so well, I do not believe in God, I would give anything to know that she was at peace with herself, I will never know now. I wish I had taken her to Curro’s.