Passing

by Michael Korda

  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 understoo
d, 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.

  16.

  ON GOOD FRIDAY, April 14, I summed up the situation for Christopher: “Margaret is dying, she is heavily sedated, bedridden . . . She has moments of consciousness, and speaks sometimes, but it’s often hard to understand what she is trying to say. It may be a matter of days, maybe more, I hope not, but I think it is best for her to die at home, in her own bed . . . Don’t call, her mind is still working, unfortunately, so it’s hard for me to talk. I will call or email you with updates when I can. It is a nightmare . . . I am with her 24/7, cot set up outside the bedroom so I can come when she asks for me.”

  The dying can hear. When Death Is Near wisely warns the reader specifically of this. “Because hearing remains intact to the end . . . remember not to say anything in front of the person that you wouldn’t say if he or she were awake.” For this reason I was careful not to answer the telephone in the bedroom when people wanted a progress report, even when she appeared to be comatose. Margaret could hear what was said, there was no point to increasing her agitation by talking about her. I kept the progress reports short, and by email. I reported to a friend that Margaret was “trapped in the bedroom and the bed, unable to move, only the eyes show life . . . She is a prisoner of the disease, and is fighting it with all her strength, but that is a mixed blessing. She is now on medication given sublingually every 3/4 hours to calm her anxiety, plus morphine as needed. It is as bad as anything I can imagine, maybe worse since she can hear, and knows that she is dying. I wish I could end it for her.”

  Morphine “as needed” was the most important thing at this point. Giving it to Margaret every three hours meant eight pills a day. At that rate I would run out of morphine quickly, but HVH told me not to worry, I could have as much as Margaret needed. At this point, however, even giving Margaret her pills had become more difficult—her teeth were fiercely clenched, they had to be gently pried open, just far enough apart to slip the pill into her mouth on a tongue depressor and lodge it under her tongue to dissolve. Her 24/7 nurses, Sylvan, Tameca, Amber, Tashena, Sylvia, and Laura, were amazingly skilled at doing this without hurting her, although you could tell from Margaret’s eyes that she didn’t like having her teeth forced open—who would? Giving her any kind of nourishment or liquid was now even harder. The only way was to fill a syringe with Ensure or water, slip the needle between her teeth, and press the plunger very slowly so she didn’t gag or choke.

  Our old friend Tom Murray wanted to say goodbye to Margaret. I thought she wouldn’t mind this—after all, he was a doctor, a professional as well as a friend like Colleen, she might not mind his seeing her in this state, and so it proved. Tom is a big man, and when he sat down next to Margaret she seemed to shrink to the size of a doll. He held her hand and talked to her quietly for almost half an hour, and the sound of his voice seemed to relax her. Perhaps not surprisingly he had a good bedside manner, he was one of the best ob-gyn physicians in Dutchess County, no doubt a soothing voice had been a significant asset in many a delivery or surgery. He and Margaret adored each other, although they often quarreled noisily and vehemently over dinner, mostly about horses. Tom owned racehorses, Margaret competed on hers. Although they were both Democrats, they argued about politics too, Tom was a friend of Nancy Pelosi’s, Margaret had been close to Robert Kennedy and was on the presidential campaign trip in 1968 that ended in his assassination. However sharp the argument, they never left the restaurant without making up outside, although Margaret would often say as we were driving home, “I still say Tom doesn’t know a thing about horses except how to bet on them.” She never denied that Tom was good at that: he once won $199,000 on a $96 “pick six” bet, he routinely won “four pick bets,” and he begins his day by reading the Racing Forum.

  When he came out of the bedroom he had tears in his eyes. He wiped them away. “She’s dehydrated,” he said, resuming his professional manner with no apparent effort. “You might want to ask home hospice to put in an IV.” I didn’t want to call Donna over the Easter weekend, so I sent her an email telling her what Dr. Tom had said, and got back a stern but sensible reply within an hour. “Hydration is very difficult and not necessary at this point. Margaret is in the last stages and does not need to eat and drink. She should be kept comfortable with mouth swabs and good skin care, unfortunately many people may tell you otherwise at this time. If we do hydration it will only prolong her suffering.”

  “The last stages” brought me up short. I realized that not only I, but even Tom, a doctor, still imagined that Margaret was a “patient,” and that she needed “treatment,” like IV rehydration. It’s a natural impulse: you see somebody who is dehydrated, your first instinct is to give liquids as soon as possible. But Margaret was not a sick patient, she wasn’t going to get better, she was dying, the stark truth was that the more quickly she died, the better for her. I knew this, but on a subconscious level I hadn’t accepted the consequences of it yet, I hadn’t thought of what I was doing as prolonging her suffering, I thought of it as caring for her. Thom emailed me later that evening to reinforce Donna’s message: “It is really in the patient’s best interest to lovingly give her nothing. Anything that you can give her, food or drink cannot be absorbed or metabolized, and will most likely make her feel even worse . . . Donna and I and the other hospice nurses have seen hundreds and thousands of patients such as Margaret, believe us when we say, ‘Just hold her hand.’”

  This was not an easy message to absorb. Margaret wanted, or seemed to want, more Ensure, her eyes flickered toward the bedside table where a bottle of chocolate Ensure stood. Who can say no to someone they love who is dying? Later that night I asked Thom for his advice about the Ensure, and he replied, “Regardless of what Margaret demands you are the caregiver. You have to give her not necessarily what she wants but what is best for her. If she can swallow safely I would give her very small sips. The important thing is to keep her safe and comfortable, not an easy cho
ice. If she coughs or chokes on the tiniest bit it would make her more uncomfortable.”

  I asked the nurse to inject a little chocolate Ensure between Margaret’s teeth with a syringe, and luckily, after tasting it, she lost interest. It may have been just the taste of chocolate that she wanted, a reminder of the Cadbury’s Fruit & Nut bars that she loved—whether or not it made her feel better, it made me feel better, but of course that was not the object.

  A different source of concern was the beginning of a large bedsore on her left buttock, almost inevitable when the dying person is lying on her back almost twenty-four hours a day with all her systems, including circulation, in the process of shutting down. I had been warned that bedsores are awful, and it was true, they are awful, hard to look after, horrible to look at, raw, suppurating, oozing. As the body loses fat and muscle it loses its natural cushion against the pressure and friction of lying down. No matter how many pads and pillows you put under the patient’s buttocks a bedsore is likely to appear, and once it does there is no getting rid of it, no matter how much DermaCerin and Aloe Vesta you slather on and massage in. Our friend Sandra Valenti went to Bed Bath & Beyond to buy wedge-shaped pillows that might make Margaret more comfortable, at the suggestion of one of the nurses, and the pillows seemed to help a bit, taking some of the pressure off her buttocks. Still, the bedsore was dismaying, a sign that Margaret’s body was beginning to decay while she was still alive.

  She was seldom conscious for long at this point, the morphine kept her sedated but restless. I spent most of the day sitting on the bed, holding her hand, feeling useless, but hoping Thom was right. Her hand felt alternately cold and hot—that too had been predicted in When Death Is Near, on page eight: “As the body becomes weaker, so does the temperature control mechanism in the brain.” It was at once reassuring and alarming that Margaret’s body was following the script, going through all the changes, or “transitions,” as Donna called them, that HVH had predicted. Her mental state was hard to judge—when she woke from time to time she seemed frightened or angry, rather than suffering from “Confusion and Disorientation” as promised in the booklet—frightened at what was happening to her, angry perhaps that the rest of us were sitting around her more or less helplessly, and likely going to go on living after she was dead. Why me? is the unanswerable question of the dying, or perhaps more to the point, Why me now?