15.

THE BODILY FUNCTIONS don’t stop at once. The catheter needs to be kept clean, the catheter bag has to be emptied regularly, bowel movements require shifting the patient and careful cleaning afterward, lotion needs to be rubbed into the skin. By the first week of April Margaret could do nothing for herself, keeping her clean and comfortable was day and night a full-time job. It meant too that we seldom had much time with just the two of us together—with 24/7 care there was nearly always something going on in the bedroom, if only in the background. One night, when Sylvan was on his break downstairs eating his supper in the kitchen, Margaret did her best to squeeze my hand, and, trying hard to articulate each word, said, after several tries, “Let me go,” with a long pause between each word.

I understood exactly what she meant, she was talking about euthanasia—an early interest of my son Chris’s, who attained a certain notoriety early on in his life by founding a pro-euthanasia group that was somewhere between a cult and an activist collective, and produced a degree of outrage that is still reverberating three decades later. I was not against euthanasia in principle—had it been legal in New York State I might even have been in favor of it for someone in Margaret’s condition—but I had a strong reluctance to being her killer, which is what it amounted to. During the year since her diagnosis Margaret had never shown any sign of being suicidal, even when faced with news that might have made anyone consider it. She kept a treasure trove of sleeping pills, pain medications, even laudanum (tincture of opium, an old-fashioned but effective remedy for diarrhea) in a flowered zipper bag in her closet, just in case she ran out of her supply of sleeping pills or was suffering from pain or a bad cold or stomach trouble when she was competing, but she was not an addict, she never exceeded the prescribed dose that she took every day. The zipper bag was insurance; as long as she knew it was there (or in her baggage) she wasn’t worried.

Between what was in my bathroom medicine cabinet and hers, not to speak of her “stash” in the closet, there was enough in the house to commit suicide many times over, and that is without taking into account that she had a carry pistol permit and owned two pistols, one of them always kept loaded in the drawer of the bedside table on her side of the bed (a legacy of her time in Kenya during the Mau-Mau “troubles”) and her over-and-under twenty-gauge shotgun propped against the bedroom mantelpiece. I did not take any of this away from her, or even unload her pistol—to do so would have shown a lack of confidence in her that she would have deeply resented, besides, in my experience people who want to commit suicide will always find a way to do it. One of our neighbors did so by injecting herself with a syringe full of horse tranquilizer from the medicine cabinet of her barn. Margaret’s closest friend Robin had committed suicide in 2011 at the age of fifty-seven when he reached the end of his tether. Robin called her the night he did it to say goodbye, and she tried to talk him out of it. She understood why he had decided to die, but she thought he was being cruel to those who loved him; her own instinct was always to carry on in the face of difficulty. She felt the same about the suicide of another friend, who killed himself with an overdose of alcohol and sleeping pills, after taking which he wrapped a plastic bag around his head to suffocate himself. Margaret thought his suicide was his final bid for attention, and his method of doing it was gruesome. In any case, if suicide had ever seriously tempted her during her illness it was now too late, that ship had sailed, she could no longer do it herself.

The thought of doing it for her had of course occurred to me, that was only natural in the circumstances; had she been an animal I would not have hesitated, but she was not. There were practical difficulties too. I had no idea what a lethal dose of lorazepam or clonazepam might be, but I did know that getting it wrong might result in Margaret surviving in hospital for some time with severe brain damage in a vegetative state like Claus von Bulow’s wife Sunny, hardly an outcome Margaret would want, and I had a natural reluctance to call my son Chris and ask him how much of either medication I had to give his stepmother to kill her. Furthermore, now that a caregiver was present day and night it would be impossible to give Margaret a whole lot of pills without being noticed; each one had to be placed on a wood tongue depressor, followed by giving her a small amount of liquid through a straw and making sure she swallowed it. It was a slow process even for a single small pill, let alone a fatal dose of pills one by one.

Then too there was the moral-ethical question, quite apart from the practical and the legal ones—killing someone you love is a different matter than putting an ailing pet down or a trapped raccoon. Margaret and I both held each other’s health care proxy and DNR, but not resuscitating a patient in cardiac arrest is a world away from killing him or her. In a large family there might have been a chance to sit down and discuss it, although who knows how many families actually do so, but there were, in effect, just the two of us, I was on my own. I took her hand—the trembling was acute now—and said, “I’ll see what I can do, but I can’t do that.”

Margaret did not seem surprised, she nodded and closed her eyes. Was that a sign that she accepted my decision, or that she had anticipated it? I made a mental note to find out if her medication could be increased, not to the point of killing her, but to the point of altogether dulling her anxiety. As a start, I doubled the dose of her sleeping pills—we had enough of them, so that wouldn’t be difficult, nor was it likely to set off any alarm bells among the caregivers. Once she was asleep and Sylvan was back from his dinner I lay down on my cot outside the door—Margaret was calm as long as I was within hearing—and opened the HVH pamphlet on what to do when death is near. Before, I had glanced at it superficially, thinking there was still plenty of time for that, but I decided I had better read it carefully now.

The exhortation on the front page to “let the pure light within you guide you on your way” I dismissed—it was a nice thought, but like much of the language surrounding death it assumed a degree of spirituality or faith that I did not think Margaret possessed any more than I did. Serenity was not her strong point, and I did not think she was at present searching for “the pure light,” although if it existed I hoped she would find it. The second page was less touchy-feely, a straightforward comment on the importance of providing comfort and support to someone entering this last phase of life, but the table of contents got down to the nitty-gritty: “Changes in Elimination,” “Restlessness and Agitation,” “Surge of Energy,” and “Moment of Death.”

I resisted reading the end first, which is what I usually do with how-to material, since the last chapter or paragraph very often sums up everything before it, and I began at the beginning. It was reassuring to know that withdrawal from friends, family, and the world is a normal part of the dying process. That was certainly true for Margaret, and there was a certain comfort to knowing that she wasn’t alone, that this was a normal part of dying. “Changes in Appetite,” that was certainly happening—Margaret was no longer tempted by any of the things she normally enjoyed. “Changes in Elimination” were taking place, it had been necessary to add a glass of warm prune juice to her diet, and we had already inserted a catheter. “Changes in Breathing” had not yet occurred, nor extreme variations in body temperature. So far there was no sign of confusion and disorientation; on the contrary Margaret’s mind seemed as sharp as ever, she was simply losing her ability to express herself as a result of the tumor’s increasing “mass effect,” or pressure, on the left side of her brain. I did not think that “reading something inspirational or playing soft music” would calm Margaret’s anxiety; there had been a harpist playing at times in the lobby of the Wellness and Cancer Center at Northern Westchester Hospital, but the music got on Margaret’s nerves rather than soothing her.

I thought that playing Willie Nelson singing “Always on My Mind” might be more likely to soothe Margaret, as well as The Phantom of the Opera and the sound track from the 1993 movie Gettysburg. None of these were necessarily inspirational, but Margaret played them so often that from time to time I had to replace the CDs in her car. “Surge of Energy” had not yet taken place, nor “Saying Goodbye,” which would obviously be the most difficult moment, and for which HVH recommended, “Listen to the wisdom of your heart, and follow its guidance,” which did not sound any more helpful than letting the pure light guide Margaret. The last chapter was “Care for the Caregiver,” which consisted of solid commonsensical advice, much of which, I realized, I had not been following. I had not been going outside at regular intervals to smell and feel the fresh air, despite the first signs of beautiful spring weather, or doing deep breathing exercises, or lying down for twenty minutes at a time, or drinking plenty of water—in fact, I was drinking more bourbon than usual, and starting in on it earlier, which was probably not a good idea. I had not given much thought to the need to stay fit and alert throughout Margaret’s passage toward death, however long that might be. Caring for her would obviously demand a degree of physical stamina from me, as well as a firm emotional balance. “It is the hardest thing you will ever do,” Thom had warned me, and who would know better?

He was right too. Putting the dying person in the best possible hospice is one thing—family, loved ones can visit him or her every day, depending on the visiting hours—but home hospice care puts you face-to-face with the dying person twenty-four hours a day, there is no driving home when visiting hours are over to have a drink, a bath, warm up dinner, look at the mail, then go back to the hospice again the next day. Of course, I was fortunate Margaret had 24/7 care, which makes a huge difference, but even allowing for that I was still the backup for things that require more than one person, like lifting Margaret in bed and cleaning her up after a bowel movement—it’s as if life had been suddenly taken over by piles of disposable adult wipes and StayDry underpads. Big plastic tubs that had to be emptied twice a day replaced the wastepaper baskets, Aloe Vesta ointment had to be massaged into Margaret’s skin in the hope of preventing bedsores, Q-tips had to be used to clean up secretions from her eyes, foam rubber oral mouth swabs replaced a regular toothbrush, a mass of medical supplies began to fill the bedroom. Thom would eloquently write of it, “Dying is often—in my experience, usually—gruesome, excruciating, and hellishly long.”

Margaret seemed to panic if I was out of sight for long, so I had an intercom put in that enabled the caregiver to call me if I had gone downstairs to my office or to the kitchen for a cup of tea, with a special buzzer for emergencies. I was never away for long, and seldom left the house at all, communicating with people mostly by email since I didn’t want Margaret to overhear me answering questions about her condition. I emailed my son Chris to describe the situation: “Margaret is home, immobilized in bed . . . She is, frankly, dying, but no way to know how long it will take. She finds it difficult to speak due to brain surgeries, but wishes she were dead.” To Alain, who had offered to drive up and visit her, I wrote: “Thanks for your generous offer, but Margaret finds it increasingly difficult to speak clearly, and I fear it might cause her additional stress . . . The problem is, frankly, entre nous, that she not only finds it difficult to speak, she is often incoherent, and her anxiety level and obsessive compulsive disorder are both terribly high . . . At the moment she doesn’t want to see anybody, and flies into a panic if I leave her for only a few minutes. She is physically very strong but in the circumstances this is a mixed blessing. I think a visit would increase, rather than alleviate her mental problems.”

Margaret was like somebody drowning in the sea of her own anxiety, desperate for someone to throw her a life buoy, but there was no life buoy to throw. Donna advised increasing her Ativan dose, in the hope of giving her a little relief. When I held Margaret’s hand it trembled uncontrollably and she gripped my fingers so hard that her nails dug into me, it was as if she were trying to hold on to life. The increased Ativan did help some, but it was still terrible for her, looking ahead to nothing. I found myself wishing she had some shred of religious belief to give her a sense of where she was going, of something after death—I wished it for myself too, but religious belief is not something you can develop at the last moment, and bringing in a pastor or a priest at this point, far from giving Margaret comfort, would only too likely be read by her merely as a sign of imminent death. “Long, difficult day,” I wrote a friend, “it would be easier if her mind weren’t sharp, but sadly while her speech is very muddled, it is.”

The next day was worse still. “Margaret’s level of anxiety is rising sky high,” I wrote Alain, “and the hospice . . . has increased the dosage of Lorazepam to three 0.5MG sublingually a day, plus what she [gets] at night. They feel that the Dexamethasone (two a day) may be increasing her anxiety, and making her hyper, and wonders if it is still needed, or can be cut down at this point?” Alain agreed that it could be eliminated.

At this point, pills had to be slipped carefully under Margaret’s tongue with a tongue depressor, she could no longer swallow them, and her mouth had to be kept closed until they dissolved under her tongue. The change in medication was made, and perhaps more important Donna added morphine every four hours to her other pills. The morphine worked miracles almost at once. For the next few days and nights Margaret’s state of mind improved. I read several long emails aloud to her, one of them from Tamzin which she enjoyed, and she was able to take a little Activa yogurt every day and some Ensure. At times we were able to have something like a conversation, although it was hard for Margaret to find the right words and pronounce them. Still, she managed to say quite distinctly, “Field of Dreams,” several times, with a look that clearly asked me to pay attention. I nodded and squeezed her hand, I understood her perfectly, she was talking about her “Field of Dreams,” the name taken from the title of one of her favorite movies, starring Kevin Costner, in which the spirit of a dead baseball star tells the hero to plow under his corn and build a baseball diamond: “If you build it, he will come.”

Margaret had taken seven acres of our land and turned them into a perfect cross-country riding course for herself, the grass as smooth as a cricket pitch, with seven of her favorite and most challenging jumps (or fences) arranged in a circle, including a hay wagon, a ditch, a table, and a big, solid log fence. When she was healthy, at the end of every ride she took her horse over the jumps, the last one a stone wall that Miguel had built for her, with a bush on either side. It was a test for horse and rider, they were all stiff jumps. Of course she would want to be buried there, it was her showpiece. I promised I would do it, and that seemed to calm her down. It was clearly something she had thought about carefully, and reached that decision, her mind was still working perfectly even as her body was failing.

A couple of days later she began to suffer from constipation, a result of the morphine. I emailed Donna to ask if we should give her two glasses of prune juice every day instead of one, I was worried that might bring on diarrhea, but she replied at once, “Give more prune juice, it is most healthy and has lots of fiber.”

I could always count on a prompt reply full of firm commonsense from Donna, but by the next day Margaret took a turn for the worse. “Prune juice seems to have worked as you suggested,” I reported, “however, Margaret is increasingly confused and incoherent, unable to finish sentences or find the right word, and constantly waving her hands about. Are these simply signposts along the way or are they likely to increase in severity?”

Margaret’s hands moved all the time now, as if she were shadowboxing, but the movements were aimless and random, it was clearly not something she willed, it was automatic, out of her control, she was not even aware she was doing it, a sign of extreme agitation. At times she clawed at her skin or lips, tearing at her skin, drawing blood, and, more dangerous, tried to pluck at the tube of her catheter. I tried to hold her hands still, but that merely increased her agitation. This alarmed me, I wasn’t sure the 24/7 caregivers could cope with it. Would they have to restrain her?

I reported this at once with alarm to Donna. “I am beginning to doubt the possibility of [continuing] to keep Margaret in home hospice care. Her acute mental distress, inability to speak clearly, and random picking at her skin and mouth that draws blood worry me very much.”

Donna replied quickly, “It sounds like she is transitional,” and instructed me to increase Margaret’s dose of Haldol. “What means transitional?” I asked, and she emailed back, “Declining. Tom will explain. He is on the way.”

Tom Herman was the HVH social worker, a man who was calm in any circumstances, indeed he positively radiated calm, which was just what I needed at the moment. He did not pretend to be a nurse, but he had the look of a man who had seen (or heard) everything when it came to dying. He thought I should talk to Donna about decreasing the interval between doses of Ativan, Haldol, and morphine, and not reach any hasty decision about moving Margaret to a hospice. If I decided to do it, he would make the necessary arrangements, but I should keep in mind that periods of hyperactivity would probably be followed by periods of exhaustion. Had I read the four typed pages I had received along with the pamphlet When Death Is Near? I had not. He gave me a look that suggested now was the time—even past the time—to read it. He would report back to Donna.

I left Margaret in Sylvan’s care, went downstairs to my office, and found the four pages of Signs of Approaching Death. I had written “Oh, God!” on the first page after reading the title, and asked Dawn to file it away until I wanted it. Here it all was, reduced to the basics: “Appetite Changes,” “Breathing,” “Circulation” (“Some areas of the body, particularly around the lips, nail beds, and the part of the body on which the patient is lying become blue or purple in color.”), “Confusion,” “Dreams,” “Eyes,” “Fatigue,” “Fever,” “Loss of Body Functions,” “Muscles,” “Perspiration,” “Restlessness,” “Secretions.” These signs of death would not necessarily appear in this exact order, but the definition of “Restlessness” described Margaret’s condition exactly. “Occasionally, the patient may become restless. He/she may move around in bed, pull at the bed linens, or reach out and pick at the air.” Under “Comfort Measures” for this condition, I read, “Do not try to stop the patient from picking at the air; it will only make him/her more agitated.”

Picking at the air was disturbing to watch, it was like seeing someone who doesn’t know how to swim desperately trying to save herself from drowning and failing. The look in Margaret’s eyes was one of despair and terror, as if she were aware that she had lost control of her own body, the nervous system was detached from the thought process, it was merely a physical symptom of extreme agitation. Picking away at her own skin was worse. Was it a way of confirming that her body was still there, that she was still alive? I had known people in good health who did this until blood was running down their face, apparently unaware they were doing it. Was it a self-destructive impulse, or simply the need to feel something, even pain, and perhaps to inflict punishment on oneself, or to produce guilt in someone else? But for Margaret there was no conscious decision, she may not have even known she was doing it. As long as she did not try to pull out the catheter herself, which would be terrible, the worst she could do was make her skin bleed. The nurses tightened the bedcovers below her waist so she couldn’t get her fingers around the catheter tube, tried to keep her hands from her face as much as possible, and took care of the skin injuries with antiseptic and Band-Aids.

We cut the interval between medications from once every four hours to once every three, with Valium added to the mix, and just as Thom had predicted Margaret lapsed into a precarious calm. Donna sent an LPN over to examine her and assess the situation. Margaret was now dozing, her hands were still, she was breathing regularly and apparently relaxed. “Margaret still sleeping,” I emailed Thom that evening, “seemingly doesn’t want to eat or drink anything, should I just let her sleep and give her sublingual Rx’s at 8:30?” He emailed back that this was a good plan, and that he would stop by later or tomorrow. The next day Margaret seemed to rally a bit. “She is conscious and trying to communicate now,” I emailed Donna in the morning, “but seems very weak, a rally, or part of the process?”

“Part of the process,” she replied. You could always count on Donna to give you the straight truth.

Margaret struggled to speak, but she was not incoherent as she had been a few hours ago. Signs of Approaching Death warned that speech may be slurred or nonsensical; her speech was certainly hard to understand, but by no means nonsensical. The nurse and I strained to hear what she was trying to say. “She’s asking for cream?” the nurse asked incredulously. “Ice cream?” “Cravings come and go,” the pamphlet noted, but Margaret was not fond of ice cream, it seemed unlikely she would want some now. I bent over so my ear was close to her lips and asked her to repeat what she had said. She did, and it dawned on me after a moment that what she had said was, “Cremation.”

“Yes,” I said, “of course,” and gave her a kiss.

I understood, people don’t go in for open caskets in England much. A few years back Peter Banks, who had looked after our house for years, died. A big, robust middle-aged man, he came over after we had ridden every Saturday morning to have coffee with us in the tack room and find out what needed doing, accompanied by his black and white Australian sheep dog Faye. Faye was a large, exuberant, and friendly dog who sometimes used to ride in a crate attached to the pillion of Peter’s Harley-Davidson; she was a working dog whose job was to chase the geese off the lawns of the Culinary Institute of America in Hyde Park, where Peter was in charge of maintenance. Margaret adored her, although when Faye saw someone she liked, she was apt to charge straight at you to be petted, and with her low center of gravity Faye could sometimes knock you down with her enthusiasm.

One Saturday morning Peter had his coffee, saw to a couple of things that Margaret wanted done, went home with Faye, and about an hour later we got a call from his ex-wife Joyce, a Hyde Park police officer, informing us that he had died in the kitchen of his house, which was not more than a quarter of an hour from ours. We were stunned—an hour ago he had been hale, hearty, cheerful, and then, suddenly, he was dead, a heart attack. When we went to the wake a few days later Peter was in his coffin, wearing his favorite Harley-Davidson T-shirt, with Faye sitting mournfully by the coffin greeting those she knew, this time without joyful exuberance—she knew death when she saw it. Peter’s face was waxy; he looked like himself, certainly, but there was something gruesome about the makeup and the careful manicure. Peter was a man who worked with machinery, he always had a bit of grease under his fingernails, he didn’t look “peaceful,” as they like to say in the funeral business, he looked dead. We stood in line to pay our respects and when we reached the coffin and Margaret looked at him, she didn’t cross herself or pray, she just paused, head bowed, then squeezed my hand hard and said, “Don’t you ever do that to me.”

The idea would never have crossed my mind. One of my favorite books when I was at school was Evelyn Waugh’s The Loved One, with its hilarious send-up of American funeral practices, and I was at Simon & Schuster in 1963 when we published Jessica Mitford’s best-selling The American Way of Death, a searing exposé of the American funeral industry. The last thing I would have done was put Margaret in an open casket, on display.

Margaret went back to sleep. “The patient becomes more tired, sleeping more and more,” it noted in Signs of Approaching Death. “Fatigue” was apparently the seventh stage before death. I went outside for a breath of fresh air, where Bill Conklin, a friend and master plumber (he is actually a master of almost every trade, not just plumbing), was working. In a house as old as ours, even death cannot interrupt the occasional plumbing problem; in this case a septic issue. I had smelled it a couple of days ago, and asked Bill if he could take care of it without bringing in a backhoe, so Margaret wasn’t disturbed—nothing was more likely to upset her than the fact that we had a plumbing problem, except for a sick horse.

Bill had managed to find the problem, isolate it, and was just about to fix it. I said I was just about to make a pot of tea for myself, and asked if he would like some. He said yes, so I made two mugs of it and sat down next to him on a stone wall near the kitchen. We sipped in companionable silence. It was brisk outside, but not cold, spring at its best. Bill is a big man, and, like many big men, gentle and soft-spoken. I told him what Margaret was going through, and explained that from time to time I just needed a break. He understood, he knew about Margaret, then slowly he told me about the death of his son a few years back, who had been hit by a driver while riding his bicycle on the road outside the house. He had thought he would never recover from that, but he had, it had changed him, he never stopped thinking about it, but you had to go on, I would see. I was touched and moved, comforted in fact, by the story of a tragedy worse than mine, for what could be worse than the death of your child? One thing you can say for living in a small town: everyone has a tragedy and none of them is secret, or at least not secret for long.

The next day Marialice, one of the HVH nurses, came by to check on Margaret. She was tiny, trim, efficient, sympathetic, with the surprising strength that good nurses very often have; no matter how petite they may be, they can swiftly move or lift a patient, whatever his or her size and weight, and do it gently and smoothly. I enjoyed her visits, and Margaret responded to Marialice’s presence, which always managed to soothe her. When Marialice was ready to go, I walked her out to her car, a white four-door sedan that seemed vaguely familiar. It wasn’t until she was about open her door that I noticed the license plate—it was one I had seen around Pleasant Valley a hundred times, in the Acme supermarket parking lot or on my way to Dunkin’ Donuts, a vanity plate with a message that Margaret and I had never been able to decipher. Some of them are easy, of course, as in “GOMETS” or “MUSTANG68,” or Margaret’s, which was “MEMSAHIB.” For years I had “AUTHOR” until I got tired of people coming up to me at gas stations to tell me they had written a book. Others appear to be written in code, you see them briefly from behind and for hours afterward you try to figure out what they mean. I said that I had been trying to puzzle out the meaning of her license plate “MISUDAVE” for years, “I miss Dave,” she said, which made sense once she had said it aloud. Dave was her son, she explained, he had been killed riding his bicycle on the road outside their house. “You’re Bill Conklin’s wife,” I said, and for a moment we stood there in the driveway, with tears in our eyes, and gave each other a hug.

It was exactly one week before Margaret’s death.