“I don’t think it was a seizure,” I said to her, since I had been reading up on them. I put the car in drive; there was no point to sitting in the parking lot. A seizure sounded like a recognizable and very much more terrifying event—this had been more of a slow, stately roll toward the floor, something beyond her control, but not sudden or violent.
“This is all happening faster than I thought,” she said.
“It probably doesn’t help that you’re pushing yourself so hard, you know. You’re tired, you’re not giving yourself a chance to rest.”
Margaret did not look convinced by this; I wasn’t myself, although I thought an occasional rest couldn’t hurt. “I don’t want to be sent away somewhere to die,” she said. “Don’t do that.”
“Okay.” I felt some unease. This was something somebody, perhaps Colleen, had suggested—that I should look into the Kaplan Family Hospice Residence across the river in Newburgh, which had a reputation as the best hospice in the Mid-Hudson area. I had looked it up on the internet. I thought of it as something to keep in mind in the long term, if or when push came to shove, not something in the immediate future. It was small—eleven beds, each with a bathroom, a view of the gardens and small terrace—and looked as serene and comfortable as a place to die could be. Of course, it was a well-orchestrated sales pitch, with beautiful photography, smiling, caring faces, and soothing background music; still, even allowing for all that, it seemed like a good choice. Unrestricted visiting hours, including pets, and a “professional on-site chef manager” sounded promising, although I did not imagine that Margaret would benefit from “spiritual care” or use the meditation room. Kaplan did not accept people until they had less than six months to live, and many of their patients arrived in the last days of their life. We had no way of knowing at this point into which category Margaret might fall, but it was clear enough from the expression on her face that she was not going there until she was helpless or unconscious, if then, so I put it out of my mind. Whatever was coming, I would have to deal with it myself at home, rather than moving her to Newburgh to be cared for.
I did not think I could have done that anyway. Nothing had puzzled Margaret more than the fact that when her mother was clearly beginning to sink into senile dementia her father put Kit in a nursing home, and never once visited her there. Margaret was her father’s daughter, much more like Paul in every way than like her gentle mother Kit, but even so, from time to time she would ask why, how could Paul have done that, and ask me to promise not to. I always thought of this as a rhetorical question; I was older, Margaret’s mind was as sharp as a tack, I had always assumed that she was much more likely to be looking after me and thinking about putting me in a nursing home than the other way around. But here we were, exactly where we had never expected to be.
I realized now that if she was going to stay at home, I had a lot of changes to make. Some of them were minor, others more ambitious, like putting in the stair lift, a shower, or a state-of-the-art toilet, things that were in the nature of long-term projects. That there might not be a long term had not yet fully dawned on me.
With the help of Colleen and other friends I began to put together a list of local people who were reliable professional caregivers. Margaret was still determined not to have anybody living in the house, but she might put up with somebody coming in during the day to help look after her. I made a mental note to ask Thom Schwartz, who had lived down the road from us for over twenty years—I remembered that he and his wife were nurses—if he could recommend someone. I did not see all this as something that was immediately necessary, it was more a question of getting prepared for the future.
I was wrong.
There was no repetition of Margaret’s fall at the Galleria and we rearranged her schedule to give her time for an afternoon nap every day, which did indeed help some. Her hairdresser Tom emailed from New York that he had taken a photograph of her over to the wigmaker so that she would have a wig that exactly duplicated her hair when it was at its best, that is to say, after he had just done it. On February 27 she had her first postoperative consultation with Alain, who felt she was “recovering well” from surgery. He noticed the occasional word-finding difficulty, but he remarked that her speech had improved since the surgery. She was to continue on a small dose of dexamethasone to inhibit any swelling in the brain, and stay on Keppra to prevent seizures. We were sufficiently buoyed by that to order dinner in from nearby Joseph’s Steakhouse in Hyde Park, a quiet oasis of dark wood in the New York City steakhouse tradition, more or less dedicated to the memory of Frank Sinatra. Margaret’s favorite meal was a filet mignon with béarnaise sauce and onion rings, fresh asparagus béarnaise, and Joseph’s famous peanut-butter-and-raspberry torte, the last a present to us from Joseph. Of course, everything had to be cut up into tiny pieces for Margaret, and she didn’t eat much of it, but what she ate, she enjoyed. I opened a bottle of 2012 Napa Valley Waypoint and we clinked glasses.
Only a week later Margaret had another serious fall, this time while brushing her teeth in the evening. She slipped over to the right and before I could reach her she was trapped between the sink and the toilet, bleeding from several lacerations on her leg. Again, it was not a seizure—she simply began to list slowly like a ship rolling over and was unable to stop it. This was not a violent fall, but her skin was by now so fragile that the slightest impact could draw blood. Although her weight was down to 106 pounds, Margaret was not easy to lift from her predicament, since she was wedged into a narrow space and I worried about hurting her more. She was bleeding profusely now, but perfectly conscious. “I’m ruining the bath mat,” she said, quite clearly. I thought that was the least of our problems. I called our barn manager Miguel, who came over at once with his wife Maria, and the three of us managed to extricate Margaret from where she had fallen, then take her to the emergency room at MidHudson Hospital to have her wounds stitched up, the first of several visits there. I had no particular reason to choose MidHudson over Vassar—they were both about the same distance away—but Margaret had been coming to MidHudson daily for her physical therapy, so it was on our flight path.
In the ER, as I filled out the list of the medications that Margaret was taking, it occurred to me that her falls might to some degree be explained by what she was on, although that would prove to be wishful thinking. The list included acetaminophen-oxycodone, allopurinol, 100mg; aripiprazole, 2mg; atropine-diphenoxylate, 2.5mg; clonazepam, 0.5mg; conjugated estrogens, 0.3mg; fluconazole, 150mg; Keppra, lorazepam, 2mg; lovastatin, 20mg; naproxen, 500mg; progesterone, 200mg; and Venlafaxine, 50mg.
A quick look on my cell phone at the possible side effects of Keppra alone was enough to make me nervous—they ran the gamut from suicidal thoughts and paranoia to vomiting and double vision, and that’s without even considering how all these medications might interact with each other. The ER doctor raised an eyebrow as she read this list. “Has she been on all these a long time?”
“Except for Keppra and a couple of others, yes, most of them for years,” I explained.
“Did this happen before or after she took the clonazepam and the lorazepam?”
“Before. I give her those when she’s in bed, with a little Ensure or warm milk.”
She shrugged. “Then it’s probably all right, I don’t think they have anything to do with her fall.”
Margaret was quite comfortable in the ER. Colleen and Megan had come over, so there were a few of us clustered around her bed as the doctor glued up her wounds (no surprises there, horse vets had been using Krazy Glue instead of sutures for years) and a very nice male nurse with extraordinarily elaborate tattoos that covered every visible square inch of skin gently bandaged her legs and tended to her rehydration drip. Unlike most ERs, which are busy, noisy places, this one was quiet and restful; in fact, Margaret dozed comfortably. I tucked this observation in the back of my mind just in case—God forbid!—we needed an ER again. By midnight she was back home in bed sleeping, with one leg elevated o
n a pillow as instructed.
It was soon apparent that Margaret’s lacerations took a lot longer to heal than with earlier wounds. The dressings had to be changed frequently. Colleen came over to show me how to do it, but there was never any chance of my being able to match the speed and neatness with which she changed a dressing. Whether it was the effect of the cancer or the radiation, Margaret’s skin was now extraordinarily fragile, bruises appeared for no reason and refused to heal. Nevertheless, over the next few days Margaret carried on as before, riding Monty and exercising, although I now held on to her arm much more tightly in the Galleria and tried to keep her in the dead center of the mall so there was no danger of her falling into a plate-glass window.
I did not want to be distracted from looking after Margaret by any health problems of my own, but I had recently lost almost all the hearing in my right ear. I supposed that my hearing aids were at fault—no device is more temperamental, never mind how much they cost—and found time to fit in a visit to my audiologist, who found there was nothing wrong with my hearing aids, and, having given me a hearing test, rushed me in to see Dr. Jason Cohen at once. Since it is usually difficult to get an appointment with Dr. Cohen in a hurry, this was enough to warn me that I was not about to hear good news. And so it proved: a sudden, precipitous loss of hearing in one ear can result, I learned, from an acoustic neuroma, a tumor growing on the cranial nerves that connect the ear to the brain.
The appropriate treatment for it was brain surgery to debulk the tumor, and the first step was to have an MRI, for which he wrote me a prescription. It occurred to me at once that two people recovering from brain surgery in one house was likely to prove very difficult. On the way home I called Alain, my go-to now for all such questions, who reassured me that in the event that an acoustic neuroma was diagnosed (extremely unlikely) brain surgery might not be necessary. He had taken care of many acoustic neuromas with Gamma Knife radiation as the sole treatment, I should not let it worry me. Then I called my electrocardiologist Jeffrey Matos in the city, always a kindly and sensible listener, and he pointed out that I couldn’t have an MRI anyway because of my implanted pacemaker-defibrillator.
I metaphorically slapped myself on the head—of course I should have remembered that! I called Dr. Cohen, who put me on dexamethasone instead to see if that would reduce any swelling, so Margaret and I were now on some of the same medication. As it turned out, the dexamethasone worked over time, and my hearing gradually returned to what it had been—not great, but sufficient. I told Margaret I was suffering from an ear infection, there was no point in burdening her with another medical drama at this point in her life, but it brought home to me how dependent Margaret was on me as her only caregiver. I had no backup if anything went wrong. Even a fall from my horse or a bad case of flu would create a real problem.
These worries were borne out only a couple of weeks later, when another fall, this time in the kitchen, gashed Margaret’s leg open almost to the bone. She lost so much blood that I called 911, and knelt next to her until the Pleasant Valley Fire Department ambulance arrived, trying to stanch the blood with one hand and hold her hand with the other. The ambulance arrived promptly, the crew consisting of three familiar faces from Dunkin’ Donuts, plus a Dutchess County deputy sheriff who arrived at the same time. They were all efficient, kind, caring, and professional. The staff at the MidHudson ER were surprised to see Margaret back so soon, but once again they patched her up efficiently and she was home in bed by midnight.
It was apparent to me now that I needed help, despite Margaret’s reluctance to have a stranger in the house.
PART III
“Field of Dreams.”
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.
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br /> 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.
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