The Long Goodbye
As a geriatric physician in San Antonio, I’ve spent the past thirty years battling against the gradual decline of my Alzheimer’s patients. Now the disease is stealing my own father.
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February 24, 2006, is my parents’ sixtieth wedding anniversary. My family plans a brunch for them in their home. We are keenly aware that this may be the last anniversary my parents will celebrate together. It won’t be an elaborate party, just a bittersweet one. Seven years earlier, my father was diagnosed with Alzheimer’s disease, and he has gone steadily downhill. At 87 years old, he is now a prisoner of his mind. His agitation and paranoia arise from distorted memories, nightmares he can no longer separate from reality. A few days before the brunch, my mother calls me in a panic. My dad is bellicose and paranoid, accusing. Summoning Yiddish profanities he has not uttered in 75 years, he curses at Yolanda, the caregiver who holds everything together in my parents’ household. He will not be bathed or shaved. He will not eat, refuses his medications. He is raving.
“Dad,” I say when I visit their house that afternoon, “what is it? What’s wrong?”
“I want to go home. Please, take me home!”
“But, Dad, you are home.”
“I don’t know where I am. Please, Jerry-boy, take me home. You know the way
. . .”
“I don’t know where else to take you, Dad. You’ve lived here for twenty-nine years.”
“You go to hell! You’re in with them!”
There is no walking away now. He is an abandoned child. He searches for his boyhood home on Boarman Avenue, in Baltimore, or perhaps our first family home there, on Forest Park Avenue. He hears voices but can’t decode what is being said, and his mind assumes the worst: My mother is insulting him, planning to run off; his sons are belittling him, his mother scolding him, his older brothers and sisters teasing him. He is lost, with no father of his own to turn to. I see that he has wet himself; a dark ring marks his place on the couch.
As a geriatric physician in San Antonio for the past thirty years, I have been through this before. I have been cursed, spit on, bitten, and punched by demented old folks over the decades. A poor woman threw a shoe at me when I stepped inside her hospital room. The day before, she thought I was the devil.
As a doctor, I know what to do; as a son, I am uncertain. So I assume my doctor role, retreating into the armor of my starched white coat. I walk to the kitchen and check his daily pill slots to make sure he’s been getting his regular medications. Sometimes my mother, unable to see due to macular degeneration, inadvertently leaves pills in the plastic containers I fill every couple weeks. But everything seems in order.
The pills are often as much a part of the problem as the cure. My father takes eight medications a day; my mother, who is 82, fourteen. They are both on vitamins and minerals, blood pressure medications, diuretics, and cholesterol-lowering drugs. My father also takes two pills for his heart. My mother takes drugs for her diabetes, a thyroid disorder, osteoporosis, and depression. This is not unusual for folks their age.
I spend my doctoring days prescribing medications for my patients, reshuffling the ones they’re on—a tiny dose change here, a retiming of administration there. By now I have written or refilled hundreds of thousands of prescriptions, but my constant goal is to cut back on medications, stop them altogether if I can: Less is usually more. Every geriatrician knows this. Looking through my father’s pills, I recall a patient of mine, Lilly, a woman who first came to see me carrying a brown paper shopping bag crammed with pill bottles—at least forty different drugs prescribed by a dozen physicians.
“This one’s for the high blood,” she had said, “and this one’s for the sweet blood, and this one’s for the low blood. These three are for my bad knees, and this one’s ’cause I’m sad a lot, and this one’s ’cause I don’t sleep too good, and this one’s ’cause I’m tired all the time. I can hardly keep ’em straight, but I got a big list at home tacked to the wall, over the phone in my kitchen. Last month the company cut off the service when I couldn’t pay the bill. All these medicines and still I feel so bad. That’s why I come to you now. That and all these other troubles.” She had handed me a list of symptoms, pencil-scrawled on a ragged piece of paper.
I spent two hours with Lilly, hearing one story loop into another: bad marriages, kids in jail, ER visits, surgeries, strange diagnoses mostly self-made. I knew what was happening to Lilly, what happens to many people like her in a medical encounter. The physician begins to drown in a sea of conflicting information, feels powerless to alter the circumstances of this person’s life. A wave of helplessness washes over doctor and patient both, and he reaches for his prescription pad. “Here, try this,” he says. “I think it will help.” Then he steps into the hall, picks up the next chart, and moves on, hoping the drug he has prescribed helps but doubtful it will. I could not change the circumstances of Lilly’s life, couldn’t make up for her poverty or lack of education or the poor choices she had made. But she improved significantly when, after some lab work and many more hours of listening, I was eventually able to whittle her medication list down to three.
Prescribing for the elderly is complicated. They don’t metabolize drugs at the same rate as younger, healthier patients. The main workhorses of drug excretion—the liver and kidneys—decline in function with age, as do all our organ systems. The elderly, like my parents, are often on multiple drugs (including over-the-counter preparations the doctor might not even know about), and the incidences of unforeseen interactions begin to mount. We know so little about these interactions. Indeed, the pharmaceutical companies are infamous in geriatric circles for not including our elderly patients in drug trials.
These days, between the Food and Drug Administration and Big Pharma, I hang suspended in a netherworld of prescribing angst. The FDA has pulled more than twenty drugs off the market in the past two decades, drugs they first assured me were safe to use but then ended up damaging livers or kidneys or hearts. I have always tried to protect my patients, wait if I possibly can for aftermarket studies to bring more data to light. It is one thing, I tell my patients, to judge a drug’s benefits and risks after it has been given to a few thousand patients in clinical trials; it’s quite another after it has been prescribed to hundreds of thousands upon its general release.
In the parlance of the technology and pharmaceutical industries, doctors like me who are cautious, who do not immediately jump on the company bandwagon every time it trumpets its “latest and greatest” product, are known as “slow adopters.” Now these industries have figured out a way to circumvent my judgment should I fail to join the chorus of cheerleaders for their newest breakthrough. On television, in magazines, they promise an end to arthritis pain, a good night’s sleep, a cure for incontinence, a firm erection. My phone rings off the hook with patients who worry that I may have blocked their path to the Fountain of Youth when I decline their drug requests. Some even change doctors.
I have no sympathy for Big Pharma. I resent its intrusion into the doctor-patient relationship, resent the constant introduction of new—often rushed—products into a marketplace crowded with me-too drugs. Big Pharma is right where it has always wanted to be—smack-dab in the middle of my decision-making process as it tries to influence consumers who also happen to be my patients. And yet here I am, in my parents’ home, rummaging through a basketful of medicines I take down from a high shelf. This is where I store the unused pills—all the psychoactive drugs prescribed by my father’s physician for his recurrent bouts of anxiety or agitation, for his depression and his insomnia, for his memory loss and lethargy, for his confusion and paranoia, for his belligerence and sadness.
I take down a dozen orange plastic pill bottles with white, almost-impossible-to-remove lids. My father’s name is on every label: Some are six months old, some several years. We have been dealing with this for a long time. Haloperidol and risperidone. Olanzapine and quetiapine. Paroxetine and citalopram. Alprazolam and trazodone. Donepezil and rivastigmine and memantine. Organic molecules, various combinations of carbon and hydrogen and nitrogen, oxygen and sulfur—the atoms of which we are all made—bioengineered to slip across the blood-brain barrier, to stimulate one receptor or block another, precipitate a rush of ions through neural membranes, flood synaptic gaps with potent neurotransmitters, flip a switch here, throw a breaker there, block a surge somewhere else.
I settle on the bottle of risperidone. Although I am reluctant to use this drug—any drug—in treating my father, I know that he has taken it before with success. It has worked. It has settled him down, albeit with an added degree of cognitive impairment. My hope is that by continuing to use this drug judiciously, I can maintain the status quo and keep my father at home for a bit longer, delay the decision to relegate him to a long-term facility where I know he will only deteriorate faster.
I bring my father a bisected tablet and a cool glass of his nutritional drink.
“Here, Dad, take this. I think it will make you feel better.”
His eyes, still wild, stare at me. “What’s this for?”
“Dad, you’ve got shpilkes,” I say. I use this Yiddish word, retrieved somehow from my own memory, because my father has lately been interspersing his speech with snippets of this language, his mother tongue—the mamaloshen—the first words he ever heard and therefore the last ones to abandon him.
He smiles. “Az ich habe shpilkes,” he says. And he swallows the pill. “For the shpilkes,” my mother and Yolanda tell him when it is time for the next dose. Before long he is back to his usual demented but pleasant self. This time I have made the right decision.
Three days later, on my parents’ anniversary, those of us who love them assemble in their home. My wife brings a dozen yellow roses and arranges the table. My brother stops at the grocery store for a side of sliced smoked salmon, some cream cheese, a few tomatoes, and a red onion. I drive over to the bagel bakery, and pick up a dozen—onion, poppy seed, and sesame—just out of the oven.
It is a small gathering. Family-oriented to the point of insularity, my parents have made no close friends in all the years they have lived in San Antonio. Everything is ready, and I wheel my father into the living room.
“What’s the fuss about?” he asks as he enters, seeing all these faces he recognizes but can-
not place. For a moment he is frightened.
“Dad,” I say, speaking into his good ear, “today is a special day. You and Mom have been married for sixty years.”
He searches for my mother’s face in the small crowd around him.
“Really? Is that true, Mom?”
“Of course it’s true,” she says. “Do you think we made this up?”
“It doesn’t seem like sixty years,” he says.
“It seems like a hundred to me,” she says. We, the assembled family, laugh nervously.
My brother leans in and asks our father, “So what do you think about all this?”
“I just want to say that I love Mom more today than I ever have.” He reaches for her hand, but she doesn’t take it. I want to believe that because of her terrible eyesight she can’t see this gesture, but I’m not so sure. We all applaud my father’s words.
I push him up to the dining room table, festive with cards. He picks out one. “Did you see these, Mom?” he says.
“I can’t read them,” she answers.
He begins to read to her.
“Have we really been married sixty years?” he asks her.
“Every bit of it,” she says.
“I hope you know I love you.”
“I know,” she answers.
Excerpted from Memory Lessons: A Doctor’s Story, by Jerald Winakur. Copyright © 2009 Jerald Winakur. Published by Hyperion. All rights reserved.