Collecting bottles, tossing leftovers, taking out the garbage
Subscribe and Save up to 45%
My father, as he approaches death, never speaks about it, but I know he’s thought the matter through and wants to avoid a lingering, painful end. I’m sure of this because of the pills I found in his closet.
I came upon them one morning last week while he was in the shower and I was trying to bring some order to his room. On his closet shelf, just above a row of dress shirts and the soft plaids he now likes to wear, sat a flowered cotton bag. I got it down, opened the drawstring and pulled out one small prescription bottle after another — a dozen, all told. They were all labeled “Nembutal 100 mg 30 cap,” and each carried the same directions: “One capsule by mouth at bedtime as needed for sleep.”
Before helping my dad out of the shower and into his clothes, I ran the bag upstairs and stashed it in my dresser. It’s safe there, because he can no longer climb stairs. He also can’t fix his own meals or read the paper or dress himself without help. He suffers from both asthma and atrial fibrillation, but his greatest ailment is dementia, probably of the Alzheimer’s type. His language, memory, and self-awareness are all vanishing under its relentless assault, which is why I now live with him in his house on Cape Cod, Massachusetts. The one thing he has asked of my brothers and me is not to put him in a nursing home.
The night after I found the pills, I sat down on my bed with its creaking horsehair mattress and spilled the dozen bottles onto the bedspread. The prescriptions had been written between 1997 and 2001 — years when my father was entirely lucid — by three different doctors in two states. I opened each bottle, poured out the small yellow capsules, and counted. Almost every bottle held the full amount.
His plan had been clear to me from the moment I’d found the bottles, but the next day I went on the Internet and looked around to confirm. “Nembutal” is a trade name for pentobarbital, a short-acting barbiturate once commonly prescribed as a sleeping pill. A sedative and hypnotic, the drug is sometimes used for physician-assisted suicide. Marilyn Monroe had Nembutal in her system when she died, and my father, with over three hundred capsules in his possession, had enough to kill an ox.
I also found that they’re still potent. I took one of them at bedtime and dropped off in twenty minutes. The next night I took two, and sleep overwhelmed me before I’d read five pages of David Shenk’s book on Alzheimer’s, The Forgetting.
Right-to-die groups advocate Nembutal as an effective and peaceful way to commit suicide. Derek Humphry, the founder of the Hemlock Society, wrote about the drug in his 1991 bestseller Final Exit. There’s no copy of that book on my father’s shelves, but I’ve seen brochures from the Hemlock Society in his desk, and I know he was once a member. Back in the days when my father spoke openly about such matters, he made it clear that he didn’t want to be trapped in a failing body or be a burden on anyone. The pills were obviously intended to be a way out: no pain, no mess, no scandal.
For most of my father’s ninety-one years his mind has been clear and focused. At Harvard, Joe Thorndike was managing editor, then president of the Crimson, the student newspaper. In 1934 he took a job at Time under Henry Luce, and twelve years later, at thirty-three, he became Life’s third managing editor. He founded a pair of hardcover magazines, American Heritage and Horizon, edited dozens of books and wrote three himself, the last when he was almost eighty. Yet today, if I leave him unattended, he’s apt to emerge from the bathroom with his incontinence underwear pulled up over his pants. Though the lawn has been covered with snow for weeks, he’s confused about the season and guesses that this is summer. One night he tells me that we have a visitor, that it’s Mitt Romney, and that we have him in the refrigerator.
Over the last six months my father has been losing his nouns. It started with proper nouns: the names of people he’s known for fifty years or the name of the street where I grew up. Now his common nouns are also escaping him. He can’t come up with the word plate or fish. Most likely, I think, he has forgotten about the bag of sleeping pills — no matter that several times a day he walks past the open closet where I found them. He certainly hasn’t asked me about them. But then, if he were intent on killing himself, I’m sure he wouldn’t say a word about it.
I see no signs that he’s ready to end his life. He still eats with pleasure, still makes jokes, still shuffles over an icy path with my arm around him to reach a wooden platform above Nauset Beach. From there he stares out in silence over the blue Atlantic, the ocean he has loved since childhood, when his parents rented a summer cottage near Marblehead.
But what if he does want to kill himself, and I have taken his pills? In theory I defend his right to suicide — though I wouldn’t want him to get confused, as he often does about his other medications, and wind up swallowing too many Nembutals by accident. It’s possible, though, that he would know exactly what he was doing. There’s the rub about moving into his house and looking after him: I’m never sure when to let him choose and when to choose for him.
We coerce the elderly as a matter of course: we make them stop driving, we decide what medications they should take, sometimes we put them in homes against their will. And then we tell them, as we decide almost everything about their lives, how they should feel about it: Cheer up. Don’t worry. Just relax. I haven’t put my father in a home, and I haven’t insisted that he spend afternoons at the senior center, as many people have advised me to do, because my dad resists going. Still, his days often go better when I get him out of the house, especially in the late afternoon, the time of day when despair tends to engulf people with dementia. If I can convince him to take a drive down to the harbor or over to Cape Cod Bay, just looking out over the water will lift his spirits.
The next day, however, we’re back to the same struggle. He doesn’t want to go anywhere or do anything, and once again I try to persuade him. The truth is, starting with my cheerful greeting in the morning, I coerce him all day long: I encourage him to eat and drink. I urge him to do his exercises. I ask him a stream of questions that are essentially manipulative. I’m trying to keep him involved because I’m afraid that, without my steady guidance, he could withdraw from life completely.
If you asked my father how much help he wants and how much I should be choosing for him, his answer would be clear: he dislikes being helped, and he wants to make his own decisions. He’s an independent and restrained New Englander who accepts my help only because I insist. He’d prefer to be left alone. He’d also prefer not to be touched. When I guide him into the shower or offer my arm to him as we emerge from the bathroom, his hand goes unerringly to grab a bar, the doorjamb or the edge of a shelf. If I put my arm around him, he acts as if he’s unaware of my assistance. He wants to manage on his own.
Periodically he asks me, “When are you going back to Ohio?”
I lie and tell him, “One of these days,” because I know he doesn’t want to think that he’s not going to get better (which he’s not) and that I’ve come to stay with him until he dies. Though it would be completely out of character for him to ask for assistance in killing himself, he might one day remember those pills and ask me for them. If he does, I will give them back, but not happily. I’m not ready for him to die.
All spring and summer I think about those Nembutals nestled in my dresser drawer. My father’s mind keeps deteriorating, his memory failing and his nouns growing more elusive.
“I have to go . . . out there,” he says one night, lying in bed.
“You mean to the bathroom?”
He shakes his head, fighting to remember. “No, that’s not it.” He sits up, swings his feet to the floor and gives a little wave of his hand. “Out there,” he repeats.
“You mean the doctor’s office, tomorrow?”
This guess is so far off the mark it brings a grimace. “No, no, I have to go . . . I have to go . . . out there.” His eyes close with the effort.
“You mean the living room?”
His whole body relaxes. “Yes, the living room.”
All his life my father has talked easily and eloquently about history, economics, art, archaeology, literature, and politics. What he’s never talked about are his private thoughts and emotions. As he once wrote me, “I am not enthusiastic about the uninhibited expression of all one’s personal feelings. If everyone told everyone else exactly what we thought of each other, I am afraid we would all end up at each other’s throats.” But feelings are exactly what I want him to talk about. I want to know his emotions surrounding my childhood, my mother, and their marriage. If not that, then I want to hear about the months we spent in France when I was seven, or about what it was like to work at Time with Archibald MacLeish and James Agee. Or if none of that, I wish my father would talk about the place he’s in now, a world of infirmity and approaching death. I’ll be there myself someday, and I’d like to be prepared.
My drive to make him talk is, I think, masked grief — or perhaps anger — at his lifelong silence. There are nights I lie in my bed and scream silently into my pillow. I don’t want to scream at him, but the internal conflict is always present: my love of him versus my anger at how he has held himself apart. Now that dementia has made it difficult for him to remember, I clearly cannot blame him for his silence. Yet sometimes I do. If he’s sitting in his lift chair, somber and silent, and I tell him I’m going out for a walk, he gives me a bright “Great,” or “OK!” — his way of saying, Everything’s fine in here, don’t worry about me. If his face collapses in misery, he won’t talk about it. If I urge him, I get nowhere.
“Dad, I know something’s bothering you.”
“It’s . . . nothing. I have to go . . . in there,” he says, and staggers to his feet. He grabs his walker and disappears into his bedroom.
Over dinner he often recovers. We do most of our talking then, and afterward I look for ways to keep him involved. Tonight I suggest we watch another segment of a Ken Burns documentary I have on tape.
“All right,” he says, but he doesn’t get up from his chair at the table. He looks sad and drawn, his chin resting on the knuckles of one hand.
“Come on, Dad, let’s go in your room.”
He says, “Sure,” but he doesn’t move. He tells me he has to look at the newspaper first and stares at the front page, his eyes hooded and face contorted. The documentary might engage him, if only he’d consent to watch it. “How about now, Dad? Come on, let’s go in there.” I stand behind his chair and give it a nudge.
“Wait, wait, wait.” He isn’t ready. He has to puzzle something out. His mouth is taut, and at the end of every breath he gives a labored moan. I hate the sound of it — hate him for making the sound. “Give me ten minutes,” he says.
At the end of twenty minutes he isn’t ready: there is still something he has to do, something he has to remember. I think, Fuck him. I can’t carry him on my back. He’s a polite, stubborn old man who’s gone a lifetime without ever talking about how he feels, who has smothered every complaint and troubling emotion. Go ahead, I think. Sit there and rot.
It’s not often I get fed up with him. Later, upstairs in bed, I feel ashamed.
Though Dad never asks for food, he finishes whatever I put in front of him. I have to be careful not to give him too much, because he will eat it all. Hunger and satiety both seem to have disappeared for him. Sometimes, if I notice him laboring over his dinner, I’ll ask, “Is that about enough?” and it always is. But if I don’t ask, he’ll go on eating.
Clearly, if I were to empty a few dozen of those Nembutal capsules into a bowl of ice cream and set it in front of him, he would eat it without hesitation.
My father falls. He recovers slowly, then continues to decline. By November he rarely gets out of bed. He’s incontinent, and the hospice aides teach me how to turn him with a draw sheet so I can clean his bottom. He lies in bed, he can’t walk, he’s completely dependent on me and his other caregivers — and I know he never wanted to live like this.
Ten days before the end, his pleas begin: He wants to get out of bed, to get out of his room, to get out of the house. “I need to get out of here,” he says. “Help me, please. Can you help me get out of here? Out of here, I need to get out of here. I have to get out of here” — a rising chant that goes on for half an hour.
I think more seriously about slipping him some of those Nembutals, but I can’t do it. I’ve told my brothers about the pills, and their response was the same as mine: though it might be for the best, neither of them could do it. So instead of answering my father’s pleas with sleeping pills, I stop offering him food and drink, save for the water he needs to swallow his medications. As the doctors say, I “let nature take its course” — though we’re far from nature here. Every few hours I give my father oxycodone for pain, Ativan for distress, Levsin for the deathlike rattle in his throat. The morphine waits in the refrigerator in a stoppered bottle. I don’t want my father to suffer. For much of the day he lies in bed peacefully, numbed by the oxycodone. Then something overwhelms him, and he begins again to plead for my help. He wants to get out of here.
I pull one of the Nembutal bottles from my dresser drawer and count the yellow pills: a full thirty. No one has ever survived a dose of forty. Somehow it’s a comfort to me to know the pills are there, though I don’t have the nerve to use them. I’m afraid of an autopsy, of confessing the act to my brothers, of being tried and sent to jail.
Instead, as my dad’s kidneys give out, I start the morphine, which sends him into a stupor. One evening, after a long silent stretch, he stops breathing. My hand is on his chest when his heart stops beating. I climb into his bed and lie beside him for an hour, weeping.
None of us wants to suffer helplessly through a decline of body or mind. If I get to that point, people say, just shoot me. I’ve said the same myself. But it’s not a realistic plan. Who would get the gun, and who would pull the trigger? My father would never have tossed off such an unconsidered, almost flippant remark. Nor would he have hinted that one of his sons should take responsibility for his death. But that’s what I heard in his repeated chant toward the end: Just shoot me.
I might imagine that when I’m falling apart and ready to let go of life, someone — a loved one, a sibling, a son — will help me out of it. But I doubt it.
John Thorndike’s description of his father’s dementia [“Just Shoot Me,” August 2010] speaks to the difficult decisions faced by those of us who become caregivers. Not once did I ever dream that my smart, adventure-seeking, loving husband would one day become the kind of person Thorndike describes. No one ever prepared me for this: the forgetfulness, anger, stubbornness, sadness, anger, immobility, slow thinking, anger. I am afraid of what’s to come. What will I do? At what point do I stop providing care? Who will I call for help? There are no Nembutal pills here, no guns, no morphine.
Of all the mistakes I made during the year I took care of my dad, the one I most regret is having removed those Nembutals from his reach. In my book I write, “In principle, I don’t believe in stopping him from taking his own life, but in practice that belief has fallen before a more primitive desire: I don’t want him to die.” That’s an explanation, but no excuse. By the time I found the pills, I think my father’s dementia had wiped out all memory of them. Still, Stoney is right: I should not have interfered. I’ve thought about this a hundred times.
In “Just Shoot Me” John Thorndike makes it clear that his father, when he was lucid, did plan his own death and had obtained the means to bring it about without a mess. Why did Thorndike interfere? I am ninety-four myself and believe that it is our right to decide when we go and by what means.
I will order his book The Last of His Mind: A Year in the Shadow of Alzheimer’s, which may have the answer to my question. In the meantime I thank him for an account that will help me initiate a conversation with my own children.
I appreciated John Thorndike’s essay about caring for his terminally ill father. I’m a certified nursing assistant, and after years of attending to my own and other people’s dying loved ones, I still find these stories to be full of mystery.
Thorndike refers to “just shoot me” as an “unconsidered, almost flippant remark.” I agree, and yet I have heard many people say it. I never let the remark pass without encouraging the person who makes it to recognize his or her personal responsibility to leave clear instructions for loved ones to follow and to have conversations about possible scenarios for failing health and old age. In the end only those who actually commit suicide or avail themselves of assisted suicide where it is legal have true control over how long they put up with the decline.
As a caregiver I see a rapidly growing number of people who want to stay at home but need help. Qualified, dedicated, trustworthy paid professionals are few and far between. I believe that in the next twenty-five years we will legalize physician-assisted suicide, make a real commitment to palliative care, and come to better value and fairly compensate our caregivers.
I admire Thorndike for not squirming out of his difficult contract with his father. People like him are destined to help guide the ship.