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.
14.
IT SHOULD COME as no surprise that caring for the dying brings one back to the basics of living, not just in the sense of looking after the bodily needs of the dying person, which inevitably become closer day by day to those of an infant, but to the spiritual needs, which increasingly involves presence, and touch. To talk to the person who is dying, even if he or she can no longer reply, signifies one’s presence; to touch, to hold hands, to hug the person who is dying is to be for a moment at one with them.
The Hindu spiritual leader and guru Mata Amritanandamayi (Amma) has based her entire message on this, having apparently hugged millions of people over thirty years. Amma is not necessarily a saint as we define sainthood in Western terms, she does not for example perform miracles, nor does she convey a blessing in the sense that a priest might. People tell her their troubles, she listens patiently, then she wipes their tears and hugs them. A huge international order has grown around her from this simple beginning, some of it devoted to such ambitious social schemes as cleaning India’s rivers, disposing of its overwhelming garbage, or building toilets—as always in India, it is difficult to separate the secular from the religious impulse—but at its core is the simple act of hugging a stranger.
Or a loved one. It was Alain, a neurosurgeon attuned to darshana, who brought Amma to my attention, when he emailed me on March 28 about the results of Margaret’s CT scan. “[Amma] exudes love and compassion for all by simply touching and holding people against her,” he wrote. “We are all in need of love and in this trying moment for you and Margaret I hold the two of you in my thoughts . . . The fact that a CT scan showed additional tumors in the lungs comes as no surprise. Obviously the cancer has spread unchecked throughout her body . . . At this point my feeling is that enough has been done in terms of medical interventions. She has been very brave but there comes a time when we have to accept that all life must pass.”
“. . . all life must pass.” I read this message again and again, touched and impressed by its compassion and wisdom. It confirmed what I had come to believe many weeks ago, that what mattered most now was to make Margaret as comfortable as I could physically, and to be present for her as much as possible, for surely the worst thing about dying is the terrible sense of loneliness, the knowledge that you are going, quickly or slowly, with or without pain, to where you can no longer be reached, ever, and going there alone. More than anything it is the loneliness of dying that frightens those approaching death as much as death itself.
The world had closed in tightly around Margaret, first confining her to the house, then to her bedroom, finally to her bed. Day by day the bedroom began to resemble a hospital room as the supplies and the equipment from Hudson Valley Hospice slowly but inexorably began to take over every surface. The wheelchair, folded now, the walker and the canes, were pushed out of the way into a corner of the room, a sign that Margaret was not going to be needing them anymore, that it was bedsores we would be worrying about soon, not her slipping on the floor or tripping on a rug.
It was clear to me that I would need to start 24/7 nursing care shortly. I didn’t think Margaret would like the idea, each step in extending her care must have seemed to her as if she were losing control over every part of her life, being reduced to an object that was being looked after rather than a person, but practically speaking I couldn’t see any way to get her through a night safely at this point without help. I felt guilty about making decisions Margaret would have wanted to make by herself, or at least be involved in, but there was no longer a choice.
I consoled myself with the fact that we had three guest bedrooms, so I could put the nurse in one of them and fetch her when she was needed, Margaret would not have to see her except when it was necessary. I didn’t have to worry about whether the guest bedrooms were ready; they were always ready, with a new bar of soap in the bathroom, a fresh box of Kleenex, an intercom system on the telephone, miniature bottles of shampoo and body lotion, plenty of towels, all the comforts of a good hotel room—Margaret wasn’t her mother’s daughter for nothing. As it happened, we had not had any guests since her illness began, but we were always ready for them.
It was not just guests that Margaret didn’t want, she also didn’t want visitors. I had suggested to her that if she wanted to see her goddaughter Tamzin, now was the time to do it. I had emailed Tamzin to tell her how things stood, that Margaret was in hospice care, that she was more or less confined to her bed, and that no further treatment was planned or possible, and Tamzin had offered to fly from the UK at once. Ordinarily, Margaret would have been overjoyed to see Tamzin, but she shook her head and even was able to say, “No!” vigorously.
I was surprised, and even disappointed. Of all people, Tamzin was the best at organizing things, and, speaking selfishly, her company would have pleased me, but I should have known better. Years before, when Margaret heard from Tamzin’s mother that her father Paul Mogford was dying at a local “cottage hospital” near the village of Broadway in England where Margaret had grown up, we decided we had better go and see him before it was too late.
In those days the supersonic British Airways Concorde was still flying, it was only three hours and fifteen minutes from JFK to Heathrow, so we took it, rented a car at Heathrow, and drove straight up to see Paul. When we entered his room he turned his back on us, he lay there silently, facing the wall of the tiny room he shared with another terminally ill patient. His back was partly exposed by the hospital gown—although Paul always had a trim figure, he had lost so much weight that each vertebra stood out separately, as if his spine had been prepared for an anatomy class. I thought that he might not want me, a comparative stranger, to see him like this, so I gave Margaret’s hand a squeeze and stepped out of the room to leave them together.
A few minutes later she walked out, her face composed but white, her lips compressed.
“Did he say anything?” I asked. She shook her head.
“No, he wouldn’t talk to me,” she replied. “He wouldn’t even look at me.”
I suggested that we give him a little time, then try again—after all, we had flown across the Atlantic to see him, and we were not in a hurry—but Margaret said no, she knew her father, he wouldn’t change his mind, and that was that.
“Let’s just go home,” she said firmly.
So we did just that. We drove back to Heathrow, returned the car, took the next westbound Concorde, and were back in New York City on the same day we had left it. I thought then that it was vanity on Paul’s part—he was the most fastidious of men, he managed the immense farm of the wealthy Holland-Martin family, always dressed in a perfectly pressed tweed suit and gleaming shoes, a striking, handsome figure of a man. But I came to realize that it was more than this—he was a man who kept a tight control of everything, himself included, he hadn’t asked Margaret to fly over and see him dying, from his point of view we had forced ourselves on him, and he neither approved of our visit, nor did he want Margaret to see him helpless. We had violated his privacy. Had she asked Paul first if he would like her to visit him, he would probably have said with gruff affection, Don’t waste your money, girl.
He died two days later, and when we flew over again it was to dispose of his ashes, and Kit’s, for she died in a separate nursing home of the complications of senile dementia. Paul had placed her there, and never once went back to visit her, she would no longer have recognized him anyway, and he was not one for useless sentimental gestures. In the end Tamzin’s father and I scattered Kit and Paul’s ashes in the duck pond behind where they had lived for nearly fifty years. I felt an inexpressible
sadness for the death of two people I had hardly known as Mike Blinkhorn and I gathered up the empty containers for the ashes, which looked very much like vacuum flasks.
People supposed that Margaret didn’t want her friends and those she loved to see her as she was now out of vanity, and of course that may have been partly true, but what mattered most to her was that like her father she didn’t want to be seen helpless, above all she didn’t need or want pity. Lying in bed with her hands trembling, unable to brush her own teeth or blow her own nose, was not the way she wanted Tamzin, or anyone else, to remember her. She wouldn’t see her friend Linda, like her slim, blond, and athletic, who drove up from Ridgefield, Connecticut, three or four times a week to exercise Margaret’s horses. She told me to say no to all the friends who wanted to see her. The only exceptions she made were for Megan, who was something like a surrogate daughter and could tell Margaret how her horses were doing; Megan’s mother Colleen, who was an LPN, and therefore had professional standing and could deal with Margaret’s wounds and with the best way of keeping her comfortable; of course Laura, and the HVH nurses who came in once a day to make sure she was being properly looked after—they too were professionals. Dawn, as well, could come upstairs and visit her—now that Margaret was unable to deal with phone calls or reply to emails, Dawn was the person she trusted to fend off friends who wanted to see her, or at least speak to her.
I called the nurse care provider and told her that we needed to get started, and we agreed to begin that night at eight o’clock. What did I need to provide for the nurse? I asked. Nothing, she replied, he would bring his own food, fruit juice, and water. “He?” For some reason I had always assumed that the nurses would be women, which had been the case up to now. It turned out that “he” was Sylvan Wilson, and that he was Jamaican. I contemplated this with a certain doubt. I wasn’t sure how Margaret would feel about being cared for by a man. I didn’t think the fact that Sylvan was Jamaican would matter, Margaret was not a bigot, but I would have preferred to start 24/7 care with someone with whom Margaret might bond more easily, like Laura, with whom she had bonded instantly. “Sylvan is the best we’ve got,” the nurse care manager said, “you’ll see.” I wished there had been a chance to audition the prospective nurses, but that had not been possible, and it was in any case too late now.
I told Margaret that a night nurse was coming, which she accepted with something between resignation and relief; at least there would be no more accidents. I fed her dinner—I was still bringing in food, this time Japanese food from the Tokyo Tavern in Pleasant Valley, she was quite fond of their avocado rolls and the hibachi shrimp. I chopped everything up until it was virtually puréed, and fed it to her by spoon, alternating each spoonful with a sip of water through a straw, and reinforced it with a bottle of chocolate or vanilla Ensure. The main thing was to do everything very slowly. She ate very little, but the meals at least gave some shape to her day, and she quite liked to see the food neatly laid out on a tray, with a vodka tonic beside the plate—even though she did not eat much of it or take more than a sip of her vodka tonic, the sight of it all cheered her up a bit. Spoon-feeding her was a trial for both of us. I was terrified she would choke, and after even a few spoonfuls she had eaten as much as she wanted—she looked forward to dinner but she hated the fact that it was followed by the tedious routine of brushing her teeth and getting her ready for the night. On the other hand, Margaret was fanatic about caring for teeth, even in the most difficult of circumstances. On safari, for example, she flossed and brushed meticulously three times a day, which is perhaps why unlike most people in England she had perfect teeth despite all that sugar and chocolate. It might have been thought that taking care of her teeth would be the least of Margaret’s concerns now that she was dying, but this was not so. It had to be done for her by one of the nurses, using a stainless steel emesis basin, it mattered as much to her as ever.
The nights seemed endlessly long and difficult, Margaret slept badly despite the sleeping pills, and the only thing that soothed her was the presence of one of her cats on the bed. Kit Kat, normally quick to scratch, was snuggled at Margaret’s feet or curled up beside her, as was Ruby, a kind of feline Florence Nightingale who had nursed Mr. McT, an oversized bully of a cat, when he was dying of cancer, embracing him with her front paws. I do not like to anthropomorphize cats, or any other animal, but the cats both knew Margaret was ill, they may even have known she was dying, and took shifts on the bed, changing place at two-hour intervals without any fuss so she was never alone. Kit Kat was usually aggressive with strangers, while Ruby normally hid when anyone she didn’t know came upstairs, but both cats overcame their natural instincts to stay as close to Margaret as they could get, purring away so she knew they were there. Her hands shook too violently to make stroking them easy.
I took the tray downstairs and cleaned up, and promptly at eight the doorbell rang. Sylvan was tall, broad-shouldered, dressed in white athletic clothes, a down jacket, and a jaunty cowboy hat, and hugely cheerful. The combination of a West Indian accent and my deafness made it hard for me to understand him at first, but it was clear at once that he was overwhelmingly friendly and competent. He was carrying several plastic bags, which he put in the refrigerator—his dinner, he explained. I began to tell him about the guest rooms and the intercom, but he laughed. It was his job to be close to the patient, not to sleep, I needn’t worry about him, he would make himself comfortable. I thought I should probably introduce him to Margaret, but he politely waved the suggestion away—it would be better if he went up and introduced himself to her. That seemed to me unlikely, but as I was soon to discover Sylvan was a force of nature, hard to deflect. He bounded upstairs carrying his coat and a bottle of water. I waited anxiously at the foot of the stairs in case she protested, but I heard nothing except subdued murmurs. I gave them half an hour, then went up to see how things were going.
Sylvan had pulled a chair close to Margaret and was talking to her in a deep, gentle voice. Clearly, they were bonding. She seemed relaxed, and even the trembling of her hands was less severe. Contrary to my fears, Sylvan rapidly became one of her favorite nurses, so much so that when he arrived one night without his usual bag full of food for himself she made sure that I drove to Ray’s deli to get Sylvan his dinner. She asked every afternoon if Sylvan was coming, and when told that he was, she visibly relaxed.
What was most striking to me was just how good most of the nurses were; the fact that Margaret was dying did not change their attitude toward her, they were almost universally attentive, caring, and gentle, even though they were not specialists in hospice care like the nurses from HVH. In their hands Margaret was always made as comfortable as she could be, there was never the slightest hint of the indifference to the patient about which so many people complain. These nurses cared. And the people from HVH were beyond praise, whether it was Donna; Margaret’s nurse case manager, Priscilla, who came every two days to give Margaret a sponge bath; Marialice, who came by frequently to check her vital signs; or Thom, who took the time on his way to work or on his way home to drop in, kneel down by Margaret’s bed, and talk to her.
All the same, Margaret’s decline was increasing. From time to time she was able to speak, but it was often impossible to understand what she was trying to say. Sylvan and Laura were able to get her out of bed to use the commode for a few days, but on March 30 Donna decided it was time to put in a catheter. That too was a setback, a further increase of her helplessness, confirmation that Margaret would never get out of this bed. She was as firmly trapped as an animal in a snare, there was no relief, and no escape.
When we first bought our house in Dutchess County nearly four decades ago we had no idea about the number of people who had been given permission over the years to use the land by the previous owners: the local fox hunt, deer hunters, bird shooters (pheasant, geese, wild turkey, duck), snowmobilers, bird-watchers, to name but a few. We tried to deal fairly with all these people and more, compromising on those
Margaret could live with—bird-watchers, for example, or fox hunters—and saying no to those she couldn’t, like deer hunters. After all, you don’t want to live in a state of constant vendetta with your neighbors. But it came as a surprise to us during our first winter to find a raccoon with one foot caught in an animal trap. It had tried to chew its foot off to get free but failed, and was lying in a pool of its own blood on the snow staring at us. This was in the age before cell phones, so I cantered back to the barn and asked Richard Bacon, the husband of Roxy Bacon, who looked after our horses, to get his .22 and put the raccoon out of its misery, which he did. I told the fur trapper the next day that we didn’t want him setting snares or traps on the land anymore—it had never occurred to either of us that there was anyone still fur-trapping only ninety miles from New York City—but I have never forgotten the look in that raccoon’s eyes, not fear or anger, it was past all that, just deep, bottomless despair.
I saw the same look in Margaret’s eyes now, as I sat holding her hand and talking to her. Talking to someone who is dying is never easy. Dwelling on happy times in the past risks making them feel worse rather than better, knowing that they are leaving all that behind; talking about the future is pointless when there is none. The words one must never say are, You’re going to get better, you’ll see, which is what we all instinctively want to say to those who are sick, even very sick—optimism is the best thing we have to offer, even when we don’t believe it ourselves, for it is often true that if people think they are going to get better, they might. Hope is a wonder drug, as every doctor knows, the oldest one, and it sometimes performs miracle cures. But it is a pointless cruelty to preach optimism to someone who is dying and knows it. Margaret knew she was dying, she would have known it anyway—you don’t go into hospice care without knowing what the end will be. I found it best to acknowledge that and talk about how her horses would be looked after, and her cats, and explain what I intended to do with them, practical matters like that. When she did not agree, she shook her head; when she agreed, she nodded. She was not in pain, whenever she was asked that she shook her head, she was on a heavy dose of haloperidol (Haldol) and lorazepam (Ativan) every four hours, which kept her composed. At this point she was hardly able to eat anything, she was drinking Ensure through a straw. As I emailed a friend, “Speech almost impossible, also use of hands, everything shutting down, kidneys, etc., melanoma tumors in both lungs, terrible to watch.”
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