Passing

by Michael Korda

  I had been sleeping beside Margaret, but this was no longer practical since a nurse was beside her all the time, not to speak of one of the cats, so I had a folding cot set up outside in the hallway by the bedroom door—that way the nurse could call me if there was a problem but I would not be in the way. As long as I was within hearing next to the bedroom door, Margaret was satisfied, but it made her nervous if I went downstairs or left the house.

  It came to me as I sat and held her hand that what this was now was the deathwatch.

  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 “r
eading 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.”