by Sue Miller
And then one day he refused to return to the building when I was taking a walk with him. It was a damp, gray, mean New England day in March, and he had kept turning away from me on our stroll around the grounds, walking a little distance from me, seeming distracted, as if he heard or saw something I couldn’t. At one point he went very close to a little dropoff, a fieldstone container wall, and I panicked. I put my arm through his to try to pull him back from it, speaking to him in what I hoped was a reassuring tone. He didn’t respond to me. He was looking out at the horizon line, and his body resisted me utterly. I pulled a little harder, and he froze.
I put my arm around him, turning him physically back toward the building. Slowly I managed to ease him toward it, one painful step at a time, talking, talking steadily the whole way, a nonstop stream—the same reassuring voice I’d used with frightened or angry kids in day care. Cajoling, scolding, entreating. His body was unyielding, and my arms grew strained. My back ached. It seemed to take forever, but I finally got him inside. Things didn’t get any easier there, though. Every step down the corridor, he resisted; he pulled away. He was remarkably strong. When his eyes met mine, there was rage in them and no love, no recognition.
We were almost at the entrance to the ward when he turned violently, yanking himself toward the doorway to some offices. I pulled him back, ferociously. In a fury, he charged me, slamming himself against me. My arm bent back and I stepped away momentarily, shocked by the pain. Then I redoubled my grip. We stood looking at each other, locked in our strange embrace. Both of us were panting. He said, “You don’t know who you’re dealing with,” in a tone of such hatred, such contempt, that I nearly recoiled.
But I was angry too, simply because he’d hurt me, because he’d fought me. And I was stubbornly determined to get him back on my own.
Why? Partially, anyway, so they wouldn’t put him in restraints again or tranquilize him. But I think too that some of it was useless pride: I didn’t want to admit to the staff that he’d crossed this line with me too—that he could not know me, that he could be as violent with me as he sometimes was with them.
So we slowly did our hurtful dance, inching our way to the ward doors, and then down the hallway in the direction of his room. But at the doorway to the day room, I turned in with him. I felt I simply couldn’t make it any farther. My shoulder was throbbing where he’d bent my arm backward, and I knew my back was in trouble. We made our way to a cushioned bench and sat down. I think we were both exhausted; I know I was. We sat silently for a while, side by side. Our breathing slowed, I could hear it.
I watched his rageful, closed profile. Finally I spoke. I told him I knew he was very angry at me, and that I’d been angry at him too. But I felt I’d needed to bring him back where it was safe, and I’d done it because I loved him and cared about him.
He didn’t answer me. He wouldn’t look at me.
I told him I thought I should go now, that I didn’t think we could have a good visit while we were both so upset. He said nothing. I kissed him and left, letting the nurses know on my way out where he was.
Was there a lesson in any of this, anything to take away? What I saw, right or wrong—what I despairingly concluded—was that my presence didn’t matter. While perhaps sometimes it was comforting to Dad (though this time, obviously, clearly not), it didn’t and couldn’t ever change anything. This was a lesson I had to learn over and over with my father’s illness, even up to the end: that it would be progressive no matter what I did, that he would get worse no matter what I did. I think this is the hardest lesson about Alzheimer’s disease for a caregiver: you can never do enough to make a difference in the course of the disease. Hard because what we feel anyway is that we have never done enough. We blame ourselves. We always find ourselves deficient in devotion. Did you visit once a week? you might have visited twice. Oh, you visited daily? but perhaps he would have done better if you’d kept him at home. In the end all those judgments, those self-judgments, are pointless. The disease is inexorable, cruel. It scoffs at everything.
Still, still, we look to ourselves to have made a difference. We remember everything we didn’t do. This gets played out in painful ways in families too, when one person takes on the care-giving responsibility. Sometimes I wished my siblings would do more—as though that would have made any difference! Just as, when my father was in Denver and my sister had responsibility for him, she felt we others didn’t do enough. It is costly, emotionally, to watch someone move inevitably, step by step, into a dementing illness, and it’s hard not to want to blame someone—ourselves most of all. But it’s useless. At this point in my father’s disease, I tried to talk sense to myself. I told myself I had to realize that what I did made almost no difference to him, that aside from the momentary pleasure he took from seeing me at the start of a visit, nothing that happened between us even registered much with him anymore.
I dropped back from the daily visits. By early April I was going usually only twice a week. Then I got the first call. Was I free? Could I come right away? Dad was in a prolonged violent episode, and they thought maybe I could calm him without a struggle so they could get him tranquilized. And of course I got up, put my coat on, and drove out.
How many times did I go out in all? Five or six, over those weeks, several times from our house in the country where I’d gone to try to get some work done—a house we’d bought in part because it was only a little over an hour and a half away from Dad. My husband came with me one time, and I could feel his appalled shock at the vision of Dad that confronted us: tied down to his chair—which my husband hadn’t seen before— slow to register our presence, slow to come around from his angry terror. My husband had thought he would help me, but in the end he let me do it all: hold Dad, talk to him, untie him, sit next to him, rock him when the attendant came in to administer the shot that would release him into calm and then sleep.
Sometimes I was able to calm him myself by reading to him. Certain cadences, most often the Bible (once, oddly, Simone Weil in translation), seemed to work. Sometimes I sang. Sometimes I just held him and stroked him, as you would a frightened child who’d just waked from a nightmare.
The fantasies he had in this period were violent ones. He was being attacked. “They” were coming to get him, and he needed to arm himself in preparation. He showed me once what he would use: clothes hangers from his closet. “That’s all that’s left to me,” he said bitterly.
I didn’t know then that aggression and disruptive behavior are often signs of physical discomfort in an Alzheimer’s patient. Now that I do, I suspect my father was in pain during these episodes, but that he himself had no understanding of this in a conventional sense and certainly no way to say, “I hurt.” Instead he incorporated the pain into his delusional life. “They” were hurting him—badly. “They” needed to be fought off. And when he fought them off, “they” needed to restrain him, to tranquilize him, in order to maintain some kind of order for the sake of the other patients on Level Four.
Once—somehow, I think, sensing the truth of the matter— I did think to ask him if he hurt somewhere. He said he did.
“Where?” I said.
He couldn’t answer me.
I began to touch him. His shoulders. “Here? does it hurt here?”
He didn’t answer.
He seemed to grunt in the affirmative when I touched his belly, and I reported this to the nursing staff, but when they questioned him he was unresponsive, so we all let it go.
Even on the “good” days now, when I visited unsummoned, he was more deeply out of touch. Often he’d be in his cruising mode, sometimes carrying something—a book, a bundle of dirty clothing. His walk by now was an odd Parkinsonian shuffle, but driven, as though someone were pulling him forward slightly faster than he wanted to go. And of course there was the stopping to strategize about how to get around the things he imagined in his way.
He’d slow down in his lucid moments, sometimes long enough to have the start of a cord
ial conversation. But he couldn’t be held to that for long. Sometimes I’d lure him to his room for a while and talk with him while I could, or read, or sing. But then the other lure, the siren song of his compulsions, his anxieties, would reach him, and he’d want to move again. I’d walk with him as long as he seemed aware of me, as long as it seemed we were, in fact, walking together; but when he lost track of me, I’d tell him goodbye and leave quickly.
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 roun
dabout 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.