13.

THIS TIME THE damage to Margaret’s leg was more serious. It was heavily bandaged, which made getting her in and out of bed and walking much more difficult. “I think you’re going to need help,” she finally said to me, at last opening the way for a nurse to come in during the day. She still did not want a live-in nurse installed in one of the guest rooms, although as we would soon discover it is the nighttime when bad things usually happen, particularly when it’s necessary to help the patient out of bed and get her to the bathroom and back. It was typical of Margaret to say that I needed help, not she. She shied away from anything that suggested weakness or fear on her part.

Still, we had made a step forward. On Dan Scharff’s recommendation I interviewed Laura Sanders, an attractive, bright, energetic RN with over thirty years of hospital experience, who was now doing private home care. She and her husband lived only ten minutes from our farm, and better still, she and Margaret took to each other immediately. That freed me to start in on what we needed to do in the house. With Dan’s help I persuaded Acorn Stairlifts to put in a stair lift in one day, with the minimum of noise or a fuss, so Margaret would be almost unaware that it was going in. I also gave the bath lift a trial run, without much success. Also important, I found, thanks to Colleen, a couple of backups for Laura, which gave us nurse care seven days a week during the day, and with all that arranged I began to explore the possibility of home hospice care, just in case, as I told myself. But events were now moving rapidly—so rapidly that it was hard to mistake them for anything but the warning signs of much worse to come.

Keeping up a cheerful spirit of optimism toward those one loves is an English character trait, a Panglossian gene built into my DNA, no doubt inherited from my insanely cheerful actress mother, who would have said to a corpse, Oh, cheer up, darling, you’ll be better in no time. “The show must go on” was my mother’s motto, she believed it was her duty to be bright and vivacious, and perhaps selfishly she looked upon other people’s lack of happiness as an attack on her own. Margaret was not quite so determined to put a cheerful face on things, but she too was not one to let anyone she knew wallow in grief, still less herself. “Buck up!” was what her father would tell her if she was in low spirits or had a fall from a horse; he did not lavish sympathy on his daughter, or anyone else. But at some point, I was beginning to recognize, realism is kinder. Margaret was still going out daily to the tack room leaning on her walker to have coffee and check up on her horses, but by now she was no longer able to mount the patient Monty, even with Miguel helping her up the three steps of the mounting block and into the saddle.

She could no longer write herself, of course, but on February 25, 2017, in the diary in the tack room, in which everything to do with the horses had to be recorded, Megan wrote, in capitals, “MARGARET’S LAST RIDE.”

Less than eight days after Margaret’s latest visit to the ER I had to call for an ambulance again, this time at ten o’clock at night—Margaret was suffering quite suddenly from acute shortness of breath, her heartbeat was alarmingly high even to my untutored touch, her ankles were swollen with fluid, she was gasping as if she were drowning, her speech was garbled and desperate. Once again, the ambulance came swiftly, and once again we were greeted in the MidHudson ER as if we were old friends, but this time there was a perceptible change of atmosphere. Margaret was being treated like someone who was in serious trouble. We no longer had a problem, we had a crisis.

A doctor appeared at once. Margaret was put on oxygen and an IV hydration drip the moment she was in her room. An EKG was taken, she was attached to monitors, and we—the usual cast, myself, Miguel, Maria, Colleen, and Megan—were asked to leave the room while Margaret watched us go with wild, staring eyes. It took some time before the doctor was able to emerge and tell us that Margaret’s breathing and heartbeat were under control and she was resting peacefully. As soon as she was stabilized she would be taken for a “CT angiography chest with intravenous contrast,” to see what was going on.

Ironically, Margaret was about to have, now that she was no longer in any position to resist, the CT/PET scan that she had been putting off. The results confirmed the presence of two growing tumors in her lungs, enough to suggest that the edema in her legs and the shortness of breath were caused by the spread of tumors in her body.

A few days later, when she next saw Alain for a new MRI, his notes reflected the unmistakable deterioration in her condition. He saw a distinct decrease in the coordination of her right hand and “some increased difficulties with regard to her speech,” as well as an unsteady gait. There was evidence of “residual/recurrent tumor within the two resection cavities, with a corresponding increase in mass effect”—in other words, the tumors were once again pressing against the brain tissue in the tightly confined space of the skull. Alain told us all this in terms that Margaret could not misunderstand, and urged her to discuss the option of palliative immunotherapy or chemotherapy with Dr. Rubin, adding, in his letter to Dr. Rubin: “She has indicated to me that she is not interested in pursuing any additional radiation therapy, which is quite understandable given its failure to control the larger two metastases. She may also decide at this point that she does not wish to pursue either chemotherapy or immunotherapy, in the end it is her decision to make.”

Margaret’s speech was in decline. She was beginning to have troubles with the fingers of her left hand as well as those of her right, a sign that the tumor on the right side of her brain was growing again. But her determination not to pursue further treatment remained unchanged. Alain was right, it was her decision to make, and she was making it, as she always did—after all, doing nothing is doing something, in every life decision. She was not in any way suicidal, she had simply concluded that nothing on offer from Dr. Rubin, or even from Alain, was going to give her back the life she wanted or turn her back into the person she had been. She didn’t like it, she was as afraid of death as most of us are, she did not believe in an afterlife of any kind—Margaret had simply looked into the future and seen nothing there she wanted. She did not propose to “go gentle into that good night,” and from time to time summoned up the energy to “rage against the dying of the light,” to quote from Dylan Thomas, one of her favorite poets. Anger, fear, and anxiety consumed her in ebbs and waves, but she struggled to keep them under control, her father’s daughter to the end. Most of the time she was placid, exhausted by the slightest physical effort; at other times, unpredictably, rage suddenly gripped her, filling her with a brief burst of energy in which she shouted over and over again, “Who is to blame for this?” Sometimes she blamed me, sometimes the doctors, sometimes fate, sometimes people whose names I didn’t always recognize. Someone, she would repeat, fists clenched, her face distorted with anger, must be to blame for all this, someone would have to pay. Then, as the effort drained her, the rage subsided and she fell quiet again. It was not comfortable to be the target of her rage, but I recognized the impulse—when terrible things happen to us, we all need to blame someone, usually the person who is closest. Strangely, it was in these outbursts that Margaret seemed most like her old self, energetic, strong, vigorous, determined not to put up with any crap. But they only lasted a few moments. What Siddhartha Mukherjee in The Emperor of All Maladies calls “the vulgarity of dying” frightened her more than death itself. The future was terrifying, the present was becoming unbearable at a quickening rate. The stairs were almost beyond her strength and balance now, she needed to be spoon-fed, she could no longer hold her toothbrush. Walking from the front door to the tack room, a journey of about a hundred feet, was no longer possible even with help and the use of a walker; Miguel and the barn crew brushed away snow, cleared away ice, put down sand daily, preparing the way for Margaret with such care and devotion that they might have been responding to Isaiah’s call “to make straight the highway,” but the distance was too much for her. She was increasingly housebound, a sad fate for someone whose lifelong passion it was to be outdoors in every daylight hour.

About a week after her latest visit to Alain she fell again, this time on her way back to bed after getting up to go to the bathroom, even though I was holding on to her. She landed on the floor beside the bed. I was not strong enough to lift her up and put her back on the bed, she had no strength in her legs to help me, so eventually I had to call Miguel and Maria to come over in the middle of the night, and after she had been made decent by Maria—Margaret’s nightgown had bunched up around her shoulders—Miguel and I lifted her off the floor and put her into bed. Although her speech was by now indistinct and difficult to understand she made a great effort to say slowly, enunciating each word as clearly as she could, “Enough, we can’t do this anymore.”

It was clear to me that the next step was hospice care at home. Palliative care, which Alain had suggested in his letter to Dr. Rubin, would involve caring for her in an outpatient setting or a hospital without attempting to treat the systemic disease; hospice care, which was also called end-of-life care, would involve keeping her as comfortable and as pain-free as possible without attempting to impede or slow down the inevitable, and was for patients with a life expectancy of six months or less.

Hospice care is an old idea, dating back to the eleventh century, when hospices were founded by religious orders, initially to care for the sick, the wounded, and the incurably ill as they returned from the Crusades. Since in those days almost everybody who sought such help died, the word hospice eventually came to signify a place in which to die, as opposed to a hospital, which signified a place in which one hoped to be healed. With the decline of the religious orders, hospices too drifted out of use in the English-speaking world until revived on a large scale in the twentieth century, stripped by this time of a religious identity.

In the eighteenth and the nineteenth centuries it became more usual to die at home, if possible surrounded by family. Indeed, “the deathbed scene” became a staple of fiction, and the obligatory last chapter in any biography. Deathbed scenes, moving or horrifying, dot the works of almost every English novelist, Dickens being the most memorable—little Nell’s death in The Old Curiosity Shop is the most famous in English literature. Doctors mostly played no major role at the deathbed except to sit helplessly by the bedside, gold pocket watch in hand, feeling the pulse of the dying patient to pronounce the death when it happened.

After the First World War it became more frequent (and was considered more “modern”) for people to die in a hospital, with consequences with which we remain familiar—patients dying while wired up to monitors and kept breathing with tubes in the throat or the nose, attached to a ventilator and IV drips. It is, after all, the purpose of hospitals, doctors, and nurses to keep patients alive, not to let them die.

It was with this in mind that Dame Cicely Saunders founded St. Christopher’s Hospice in London in 1967, and set in motion a movement that has since spread throughout the English-speaking world to focus on the “total pain” of a dying patient, that is, both the physical pain and the anxiety, and to provide comfort for the patient rather than attempting to prolong life.

Even for those who are very ill—and for those who love them—seeking hospice care is a difficult decision. I could not help feeling guilty for abandoning hope, illusions, faith in miracles or an improbable last-minute reprieve as I made the decision to seek home hospice care for Margaret. For those patients in unremitting pain it is perhaps an easier decision, but Margaret was not in physical pain, she was in a state of intense anxiety at the prospect of encroaching helplessness and death.

As I was soon to discover, anxiety is every bit as terrible as pain, and perhaps its equal. Pain can be controlled by medications up to a point, even at the risk of placing the patient in a state of suspended animation, but so long as the patient’s mind is working there is no way to stop him or her from thinking, I am dying, I will soon be dead, no combination of drugs and painkillers can prevent the patient from knowing what is going to happen in weeks, days, hours, or minutes. Hardly anything could be more anxiety-producing than that. The shelves at CVS are full of “get well” cards, funny or sentimental, to send to those who are ill, but there are none for those in hospice care that read, “Die well,” or even more unlikely, “Die soon.” We do not deal easily with the fact that somebody we know or love is facing death, and knows it; still less with the idea that death, which we spend our lives denying, putting off, or struggling against, is now the best outcome. Every step I made toward putting Margaret into home hospice care felt as if I were condemning her to death, and yet I knew it had to be done. I would just have to live with my guilt feelings, I decided.

Colleen had already connected me to Hudson Valley Hospice, and getting Margaret enrolled there did not present any problems. Despite the dogged cheerfulness of the HVH staff, there was no way to soften the reality. Margaret would have an HVH “case manager,” Donna Engle, who would visit her as soon as possible. HVH would deliver a fully adjustable hospital bed with sheets and pillows, a bedside commode, an adjustable hospital “over-bed table,” a wheelchair, oxygen, briefs, pads, and other continence-care supplies, gloves, adult wet wipes, a bedpan, and much else besides. I said that I wasn’t sure about the hospital bed, Margaret’s strongest wish was to die in her own bed, I thought the sight of a hospital bed might alarm her, but we compromised by agreeing to put it between the cars in the garage until it was needed. A truck would bring these supplies, with two people to carry everything and put it all in place. Sifting through the paperwork, I saw it included a small printed brochure entitled When Death Is Near: A Caregiver’s Guide and a typed four-page list describing “Signs of Approaching Death.” I put these to one side and out of sight to read later, with considerable foreboding.

There is a certain relief, at any rate for the caregiver, in putting the patient in the hands of home hospice care. First of all, there is backup, someone to go to day or night with a problem or a question; second, there’s organization and support, a framework in which to care for the patient. I remembered the famous line from Graham Greene’s screenplay for The Third Man, “Death’s at the bottom of everything . . . leave death to the professionals.” It was a film Margaret and I had often watched together, sitting downstairs in the library, or upstairs stretched out on the bed, with a couple of Margaret’s cats lying between us or curled at her feet. Most eighteenth century houses have small bedrooms—it was hard to keep them warm back then—but by some fluke ours was huge, and over the years Margaret had got it exactly the way she wanted it, with a chaise longue over in one corner (which she never used), big comfortable chairs, souvenirs and knickknacks from her travels spread out everywhere. She liked to lie there on winter afternoons, after riding and walking in the morning, to do the Times crossword puzzle (in ink, of course) in the company of her cats. As I explained to Donna, a warm, smart, patient, and experienced nurse, this was where she wanted to die, not in a hospital bed. Donna did not seem surprised, she had no doubt dealt with far stranger requests during her career. Her practiced eye took in trouble spots, small rugs that could easily lead to a fall, not to speak of the highly polished eighteenth century wide-plank pine floor, which was only too easy to slip on even for someone in good health, places where if Margaret fell she might hit her head against a sharp corner. There would have to be a certain amount of shuffling around of furniture in the interest of safety, convenience, and comfort.

I anticipated some degree of resistance or shock from Margaret; transitioning to home hospice care is in effect making death certain, it’s generally limited to patients who have less than six months to live, and in fact many people (or their families) don’t choose hospice care until shortly before death. That Margaret knew she was dying was one thing—of course she did by then—but becoming a hospice care patient set the official seal on the fact. Her oncologist, Dr. Rubin had certified it, Medicare had signed off on it (Medicare A covers hospice care 100 percent), HVH had accepted her as patient, she was now officially dying, it was no longer a faraway event or one about which there could be any doubt. Although Margaret would hardly have been aware of it, medical decisions would now be made by her hospice team; her doctors might be consulted, but day-to-day care would be in the hands of HVH henceforth, with the aim of making her comfortable rather than “curing” her. She showed no surprise when Colleen sat down beside the bed and broke the news to her. If anything she seemed relieved to be in good hands. Margaret’s decreasing mobility and growing helplessness—there was now almost nothing she could do for herself—made it clear to her that she needed professional help, much as she didn’t want to be surrounded by strangers or subjected to anything resembling a hospital routine.

When Colleen had gone I sat down beside Margaret. “It’s good that we’ll have the home hospice care started soon,” I said, holding her hand. It felt tiny and cold.

“I don’t want anything changed.”

I looked around. Nothing much had been changed so far, except that the big oak table on which the television set sat was cluttered with boxes of first-aid dressings and everything needed to care for the wounds on Margaret’s legs. The bedroom looked just as it had when Thom von Bulow had redecorated the house a few years ago, paid for by an unexpected (and regrettably brief) surge of movie option money; it had looked a bit shabby before, and now it had a certain English chic-shabbiness. Margaret possessed to a degree that surprised most people all of the domestic skills: she could decorate a house, iron a shirt, pleat a skirt, cook a crown roast of lamb for a dozen people, polish silver until it shone like a mirror. At some point in her life she had picked up all that from her mother Kit, whose standards in such matters were those of Edwardian England, not to speak of Margaret’s father Paul, who would briskly reject an overcooked vegetable or a glass with a fingerprint on it. Until equine competition took over her life, Margaret loved decorating—upholstery fabrics, pillows, curtains, every pillow and piece of furniture in the bedroom meant something to her.

“We’ll change as little as possible,” I said, wondering where we were going to put the commode, or if it could be hidden for a while. But that would surely defeat its purpose?

Margaret lay propped up on pillows, hardly moving. It was difficult to remember that only a few weeks ago she had been riding, walking, driving, planning to go down to the city and visit the wig shop with Tom. Since April of last year our lives had been dominated by what Margaret’s next MRI would show, but quite suddenly it no longer mattered—another MRI would merely show us what we already knew, that she was dying, and that she would probably not live long enough to try on the wig that Tom was having made for her.

“I just wish it were over,” she said.

I had not been expecting a call from our nearest neighbor Thom Schwartz, a tall, slim, grave, neatly bearded man who resembled Saint Francis of Assisi without the tonsure or the robe, or at any rate the stone statue of him that stood in our garden close to the birdbath. Thom was Margaret’s favorite neighbor—he did not shoot deer out of season on our land, or ride a four-wheeler or a snowmobile on it, or set traps; occasionally he and his children walked on it, but he always asked permission before doing so, and on the rare occasions when we met him he was always charming, considerate, and softly spoken. He had a sharp sense of humor that matched Margaret’s. I had known that Thom and his wife were both nurses, but until he came by and talked to me about Margaret I had not realized that he was one of the night nurses on call at Hudson Valley Hospice, very likely the person I would soon be reaching out to whenever something went wrong at night. We exchanged cell phone numbers, and chatted about how to look after Margaret. I said that so far I didn’t think I had done all that well. I had probably done better than I supposed, he said. Most people thought they had failed some kind of test, but there wasn’t one. He too thought that 24/7 care would be a good idea, but I would know when it was time for that when I got there. I should call him whenever I had a problem, day or night. “This, this, is the hardest and best thing you’ll ever do,” he would write later, and that is pretty much what he told me then.

He was right.

As the world narrowed down for Margaret, it inevitably narrowed down for me as well. Looking after someone who is dying gradually fills one’s life to the exclusion of everything else, it’s on-the-job training to the nth degree, there’s no manual that tells you what to do, what to expect, what to tell the person who’s dying. I had managed to find an agency that supplied around-the-clock nurses, which I could already tell we were going to need. This turned out to be a time-consuming and aggravating challenge, unlike enrolling Margaret in home hospice care, and was not covered by Medicare. The agency would provide two nurses a day, one from eight a.m. to eight p.m., the other to cover the night shift, and we labored mightily to deal with the paperwork and to draw up a schedule—it was obvious to me that until I got to know the nurses a lot of my time would be spent managing this, explaining how to find us in the boonies, and making sure that people arrived on time to replace each other.

Dawn and I set up a cork bulletin board on an easel in my office, with each day divided in two so we could plot who was coming when, keep track of the names, and record their cell phone numbers. It occurred to me that my solution to the emotional challenge of looking after Margaret was to keep busy, but that did not mean it was make-work, it still all needed to be done. Planning is an affirmation of life; looking back on it, I realize that I was drawing up charts of day and night care extending far beyond the amount of time Margaret had left to live—it was a way of ignoring reality, perhaps of even supposing that one could prevent it, like someone drawing up a mental shopping list as their car skids toward an accident: “I will live, I will buy ketchup, paper towels, toilet paper, cat food . . .” Anchoring the mind in the humdrum routines of life has a calming effect because it suggests that at least something is under control. One can’t halt the progress of the disease, or even slow it down, but one can make plans, lists, buy supplies, make sure the patient is comfortable. As if keeping busy were a solution to something, I became the master of the checklist.

It is a measure of Margaret’s increasing isolation—unable to talk except with extreme difficulty, unable to email, increasingly unable to walk, to pick up a spoon, to wipe herself, to brush her teeth—that I managed to get the stair lift people to install it in one day without her even noticing that it was going on, although it was all taking place within a few feet from her. It came as promised, prefabricated pieces that clipped into place without a problem, and I caught a break toward the end of the day to take an inaugural test ride on it, feeling slightly foolish as I went silently down and back up the stairs, with my seat belt fastened—here was at least one useful improvement accomplished.

One of the reasons I had for getting it installed in the first place was to take Margaret out to the barn to see her horses, which I thought might cheer her up a bit. I explained it all to her at teatime in the bedroom: the stair lift would take her smoothly downstairs, I had tried it myself, we could wheel her across the dining room to the front porch, then carry the wheelchair outside, push her to the barn to see her horses, and bring her back upstairs again without a problem. I had imagined it as a cheerful scene, Margaret wrapped up in her warm coat with a blanket over her legs, feeding her horses a treat, with myself and the barn guys smiling in the background. I may have sounded a touch overenthusiastic about it, as if I were selling her something, because she listened quietly, then shook her head. “No,” she said.

We didn’t have to do it today, I assured her, it was getting late and dark anyway, we could do it tomorrow or the next day, it would be easier in the daylight.

“No,” she repeated, and her expression told me everything I needed to know.

She had already said goodbye to all that, without drama, the last time she was in the barn.

The stair lift never got used.