The Story of My Father (15 page)

This whole period—the period after he moved and when he seemed to retreat so profoundly and rapidly into his illness— lasted only for a few months. I did what I could, starting with the daily visits and at the end going out only a few times a week. After all, as I told myself, I had my own life too. I was trying to work during this period—trying and not succeeding very well. I was starting on a new novel, my third. I’d been starting, I felt, for four or five months. I was very upset about my father, but I was also desperate about my work. I felt miserable, ineffectual in every part of my life.

Late in April I decided I needed to take a break from Dad. I resolved to go if I were called by the nursing staff, but otherwise I’d stay in the country for at least a full week and try to work in a sustained way.

It was nine days before I saw Dad again. I stayed in West-port, alone. I got a lot done. Not once did the phone ring from Sutton Hill. A good sign, I thought. This had been a good idea.

I breezed in again about nine-thirty on a lovely spring morning, waved hello to the nurses, and went straight to Dad’s room.

I was shocked. Dad was still in bed, still asleep in the restraints they used to keep him from wandering at night. I leaned over and spoke to him. He seemed to hear me, he turned to me and made a noise, but he didn’t truly wake up. He was unshaven. His color was awful. He looked dead.

I went back to the nurses’ station, my heart pounding. Why wasn’t my father up? What was wrong with him?

Oh, they were sorry, they didn’t know I was coming, but he’d had a little bug, a fever, and they thought they’d let him sleep.

How long? I asked. How long had he been sick?

Just yesterday and today, they told me.

But why hadn’t they called me?

Because they didn’t want to bother me, they’d already called me so often.

And what was the bug? What did the doctor say?

Actually, he hadn’t seen the doctor yet. She was away, on vacation until tomorrow. They couldn’t really tell what was wrong, but it didn’t seem bad. He’d been coughing a little, he had a fever. That was all, they thought. A little bug.

I told them it seemed like more than that to me: I couldn’t really wake him.

Oh, no, they said. He’d been up yesterday. If I wanted to wait, they’d come down now and get him up and dressed, and I could help him eat a little breakfast.

Yes, I said. I’d wait. I went into the day room and sat down, my thoughts swirling.

I was even more upset when they brought him to me. He was, after a fashion, up and walking—that is, he was vertical; his feet were moving. But it took two of them to support him, and his head was lolling, his eyes partially closed. It seemed to me that he was still not truly conscious.

The head nurse—one I liked in this case—brought a wheelchair for him, and the two aides lowered him into it. I tried to speak to him. It was clear that he could hear me. He turned to my voice again, his eyes opened a little, and he made noises in response. But he never really threw off his unconsciousness. I realized that what he reminded me of was my grandmother, dying. And that’s what I thought: that he was dying. I’d thought it the moment I saw him. Something had come to him quickly, some disease, and he was dying.

After he ate a little—he could chew, he could swallow—I pushed him out into the courtyard in his wheelchair and we sat together for a while in the sun. The air was gentle, cool and humid and lovely. I talked to Dad about it, about how wonderful it felt, about spring. A man, a former priest who sometimes visited one patient or another as a volunteer, came up to us, delighted to see Dad, and tried to talk.

Dad didn’t respond. “He’s ill,” I explained. “I’m not sure exactly with what.”

I could see the man was taken aback at how Dad looked and was behaving, and oddly that relieved me—the sense that someone else besides me thought something was gravely wrong here. When I wheeled Dad back inside, I asked that the staff put him to bed, and then I went to talk to the head nurse again. I told her I thought my father was very ill. I told her I was shocked that he hadn’t seen a doctor, given that. She was apologetic; he’d been so much better yesterday. And she had already put a call in to the doctor. Dad would see her first thing tomorrow, before she did anything else post-vacation. I stayed for the rest of the day, giving Dad liquids, feeding him again, but he didn’t ever truly wake.

Everything seemed a little crazy to me: Dad’s nonresponsiveness, the nonresponsiveness of the staff, my own conviction—I understood what it meant just then, to feel something
in
your bones—
that he was dying. It wasn’t rational, but I knew it. I knew it.

When I went home that night, I called everyone—my siblings, my father’s one remaining sister—and told them I thought Dad was dying. By their responses, I could tell they thought I was a little crazy too.

What did the doctor say? my aunt wanted to know. She was herself a nurse.

He hadn’t seen the doctor yet, I said.

Ah. Well. Would I call back, then, after he’d seen the doctor?

Yes, I said. I would.

I got out there the next morning before the doctor arrived. Dad seemed the same to me, not unconscious but not conscious either. I sat by his bedside and waited for her arrival.

I had never liked this doctor. I’d chosen her from the roster of doctors available at Sutton Hill because she was a woman. Dad had had a young woman doctor in Denver, the one who had diagnosed him, and he and my sister had both liked her very much. It had seemed to me at the time I made my choice that having another woman physician might help him in his transition to Sutton Hill, might be reassuring to him. But defying all gender stereotypes, this woman was cold and brusque, as unlike my sister’s description of his Colorado doctor as she could have been.

When she arrived, she was again cold, almost rude, I felt, even under these circumstances. Her first concern was to establish that no one had called her—that my father’s having been allowed to descend this precipitously into illness was not her fault.

I felt a contemptuous rage for her. I understood that, I said. And no one on the staff had blamed her.

She examined him. When she pressed his abdomen, he cried out piteously.

After she’d finished, she turned to me and began to explain my options in a businesslike way. She could hospitalize him for tests. There was the distinct possibility that they’d have to do some exploratory surgery on his abdomen; she thought cancer was likely. And maybe they could repair what was wrong or treat it. But the shift to a new place, the hospitalization itself, the surgery, the drugs, all would be aggravating to the Alzheimer’s disease, would certainly intensify his deterioration, and offered no assurance of physical recovery.

The alternative was to do nothing. To keep him here, keep him on antibiotics, keep him comfortable—he would have hospice care, essentially. But because he wasn’t really conscious enough to eat, he would die within a few weeks. If this was what I wanted, I would have to sign a DNR—a Do Not Resuscitate order—and the process would begin. She was silent for a moment, and then she said the only even remotely kind or sympathetic thing I ever heard from her lips: “I know this is hard.”

She meant the decision, but she was wrong. Other things were hard, would be hard, but the decision wasn’t. Over the years, Dad had signed several living wills, stating his desire to be allowed to die if he couldn’t live with dignity, stating his wish that if he were terminally ill with no hope of recovery, no extraordinary measures should be taken to keep him alive. My sister had told me that at least once he seemed to be asking her, in a roundabout way, whether she would actively
help
him die, something she had felt was out of the question for her—as it would have been for me.

But this, the descent of an illness, an illness whose arrival he’d been too deranged to report to anyone, an illness that through the staff’s and my inattentiveness had been allowed to progress to a point where it was threatening his life—this was different. Part of what I’d felt the day before when I’d concluded he was dying was
relief
for Dad. A kind of joy, really. His body was so strong, his heart so good, his health so generally solid, that I had thought he would live until the Alzheimer’s disease wrecked him utterly, made him forget how to move, to breathe, to eat. I had thought I would be caring for him in a vegetative state for a long time before the end.

It seemed to me he had already endured a multitude of humiliations and losses, that there was virtually no indignity he hadn’t faced—and yet I knew we’d barely begun. That he should die now, that he should die naturally and quickly before he lost completely his sense of who he was, who he’d been, this seemed to me a pure boon, a generous and unexpected gift, the answer to the prayers implicit in the formal, formulaic language of his living will. In fact, I had lain awake much of the night before in a state of nervous tension, hoping this would be possible, hoping my sense that my father had begun his dying was correct.

Hoping, and feeling simultaneously a sense of gaping loss. And shame too: shame for hoping it, and shame connected to my having stayed away too long. If I’d visited a few days earlier, surely I would have sensed the gravity of this illness. Surely I would have had him seen by a doctor—any doctor—sooner, and we wouldn’t have arrived at this point yet.

But we had arrived. We had. And guilty as I felt, terrified as I was, shamed as I felt for feeling it, I was
glad.
I was glad that my father’s body had found the way out, the reprieve from what had been waiting for him.

I told the doctor that I’d already thought about this and I wanted to sign the order. She said she would have it prepared. I asked her how long it would take him to die. She said she wasn’t sure, that it depended a little on how long he continued to eat and drink. Maybe a week, maybe several. She said she’d instruct the nurses that he was to have no pain; he’d get regular morphine. She said she was sorry and then she left. I never saw her again.

I stayed with my father the whole day, feeding him a little, giving him liquids. I left the room when they came in to turn him and change his bedding, but from the hallway I could hear him cry out.

Before I left that evening, I stopped at the nursing station and signed the DNR.

That night, at home, I called everyone again. This time they believed me. I could hear the shock in their voices—some of it, I think, at me, at my choice. I could hear that most of them didn’t share the sense I had of a kind of frightened elation for Dad, on his behalf.

So it began. Every day I rose and dressed and had my breakfast, and then, as if I were going to a job, I drove out to Sutton Hill, feeling frightened and weepy each time I drew near. Once I arrived it was better. I held him, sang hymns to him, or read to him, mostly scripture, a lot of psalms. I brought tapes of the music he’d liked to listen to in New Hampshire and played them. Sometimes I just sat silently by him. I fed him, as long as he could swallow food. I gave him water and juices, at first from a cup and then, when that became impossible for him, from a straw, releasing it drop by drop into his mouth.

The nursing care was wonderful through all this, except for the morphine, which I sometimes had to fight for. But he was always clean, and the women who handled him were tender and loving, sweetly solicitous, especially when they had to cause him pain, which happened whenever they moved him.

My husband came out with me twice. Ben came once. But most of the time I sat alone with him. It took him ten days to die. The organism wants life—clings to it desperately, in fact, whatever the terms—even when the intelligence has decided that the terms are so degrading that death is preferable.

Every morning on the drive out—beautiful day after beautiful day, as I recall them—I was terrified that I’d arrive and find him already dead. It seemed to me part of a pact I’d made, with him and with myself, when I signed the DNR—that I would be with him throughout. That he wouldn’t die alone. The thought that he might made me wild. One morning, after I’d gotten off the highway and was nearing Sutton Hill, a bird flew into my windshield with a loud
thunk!
My heart lurched. As I drove away, I could see it on the road in my rearview mirror, a flopping motion, then stillness. It was a sign, I thought, and began to cry. But when I arrived, Dad was still alive, shrunken now, his nose enormous in his face, his hands held up like claws on the sheet, but breathing. Snoring loudly, in fact. I was so grateful I kissed him over and over.

In all this, I tried to imagine what I would want, dying. To feel loved, I thought. To feel connected to those I had loved. So I held him. I stroked his face, his hands. I kissed him. I spoke the names of the people he’d loved: my mother, his parents, his children, his siblings. The last few days, as his body labored, I told him over and over it was all right to let go, that he didn’t have to work so hard. By then, I think, he wasn’t conscious. He probably didn’t hear me at all. But I kept doing it, in part, I suppose, as a kind of consolation for myself.

He died early in the afternoon on the tenth day, breathing more deeply and slowly, then pausing for a long time between breaths. Then one last breath, and I knew he was gone. His color changed, nearly instantly. He was suddenly, palpably,
absent.

All the grief I’d held in for days—really, for years—poured out of me. I didn’t care how loud I was. At some point, one of the aides came in, then quickly left. The head nurse came a moment later and sat with me awhile, and then the kind woman in charge of social services replaced her. When I finally felt ready to leave, I called my husband, and he came to get me.

At home, I went upstairs to lie down, to weep some more. I had called one of my brothers from Sutton Hill and asked him to call my other siblings. My husband offered to call a few other people—some of my friends; his parents. I could hear his muffled voice rising from downstairs as I lay in our room. At one point, talking to his mother, he laughed about something they’d moved on to, and I felt a shock, a jolt: life went on, then, for others. It would, of course, go on for me too, but at that moment it seemed an impossibility. I felt locked into this grief, as though I’d never get out. I couldn’t imagine, actually, wanting to. Dad’s dying had been like a long labor, the work mostly his, but the experience for me as profound, as isolating, as the labor of birth. For weeks after my son was delivered, I remember, I was stunned by it—by what I’d gone through, by how alone with it I’d felt, by how astonished I was by it, and by how isolating that astonishment was. Others held my son, admired him. They saw him simply as a big healthy baby. But when I looked at him, part of what I saw and felt was how he’d come to me, that long solitary labor, the amazing combination of agony and release that I felt I could explain to no one else. And in some nearly parallel way, this is what I felt about my father’s death. It was what I returned to frequently, it was privately
where I lived,
for a long time after it was over.