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Winston Ross | Longreads | December 2019 | 21 minutes (5,290 words)
A week before Thanksgiving last year, I got a call from an officer with the Berkeley Police Department. As I’d suspected, it was about my mother.
My mom, who was 73, hadn’t lived in Berkeley for 28 years. In early November, she told a neighbor she was headed from her home in Springfield, Oregon, to California, to see some old friends. She’d be back, she said, in a year. A couple of days after that, she showed up in our old neighborhood in south Berkeley driving a white Toyota Prius inexplicably decorated with decals of children’s handprints. She then began walking casually into strangers’ homes and refusing to leave.
As the largest wildfire in California history drove tens of thousands of people from their homes and from the Golden State altogether in search of refuge from pernicious levels of smoke and ash choking the skies, my mother headed straight towards the inferno, her car loaded to its ceiling and her loyal dog, Bosley, at her side. And I was powerless to stop her.
When the cops called, I had a pretty good idea why. When the officer said she’d been sleeping in this strangely appointed Prius on the streets of my hometown, I wasn’t surprised. My mother had a home but refused to live in it, convinced I had bugged it as part of a nefarious plot I’d conceived to create a Truman Show out of her life. She traded in her three-year-old car for another one because she believed I’d somehow hacked and disabled her keys. She was homeless by her own making, or at least by the paranoid conspiracy that had overtaken her mind.
The root of this conspiracy is a syndrome as old as medicine. It is a condition an alarming number of health providers, psychiatrists and others who can both inflict and treat it know too little about. That condition is called post-operative delirium, and it afflicts as many as half of elderly patients who undergo surgery, or two million older Americans, each year. As measured in longer hospital stays and follow-up care in nursing homes, delirium’s estimated costs have reached more than $143 billion annually. When you consider that the country’s fastest growing population segment is people over 65, those numbers are certain to grow.
“We should anticipate we’ll see more of it. We’ve always had a problem,” Karin Neufeld, clinic director of psychiatry at Johns Hopkins Bayview in eastern Baltimore, told me. “My colleagues haven’t paid attention to it at all, for many, many years.”
As I learned last year, post-operative delirium can quickly plunge an otherwise normal person’s life into chaos.
Early last summer, Mom was in many ways living her best life. She’d retired at 68 and moved to Oregon after a turbulent life, from her father’s suicide when she was 18, to a dysfunctional marriage, to a few decades of ineffectual attempts to self-medicate her trauma with food and alcohol, her chronic pain with opiates. But she seemed happier than she’d ever been. Our relationship was at a high point.
Then, in search of relief from years of incessant pain caused by arthritis in her shoulder, she scheduled a replacement surgery, which would be her fifth joint replacement, after both knees and both hips. The surgery fixed her shoulder, at the cost of her mind.
I lived a couple hours north of my mom, in Portland, and I’d planned to see her right after the June 21st procedure. When I arrived, the charge nurse told me my mom’s doctor had forgotten to write an order to have her transferred from the operating room to a space that allowed visitors. I couldn’t see her, and since the doctor was in another surgery, they had no idea when she’d be moved. She’d be fine, I reasoned, and left. My mother woke up alone.
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In the intervening hours and days, my mom wrote me a string of loopy and overwrought text messages, complaining that the nurses weren’t taking her grievances seriously because someone had written “bipolar” on her chart. A few months earlier, Mom had casually mentioned to me that she had for 17 years hidden that condition from me, with the help of a drug called Trazodone to help her sleep and abate her symptoms. I planned to get back down to Springfield a few days later to check on her.
Five days after the surgery, I was building a deck in my backyard when I looked at my phone and discovered a string of distraught and mostly incomprehensible missives, with one thing clear: my mother wanted me to get there. Now. I dropped my tools onto the half-built deck, tossed some clothes and food in a bag, and raced down Interstate 5.
For the next year, my life devolved into a roving crisis. Among the many things I learned is that my mother’s story is at once unnervingly common, her condition one that is underdiagnosed by the very professionals tasked with trying to heal the sick. When at one point I called her surgeon’s office to report that my mom had what I then knew as “post-surgical delirium,” the charge nurse put me on hold. When she got back on the line, she said flatly, “The doctor said he doesn’t treat post-surgical delirium.”
That’s the rule, not the exception. Most doctors neither treat post-operative delirium nor anticipate it, Neufeld told me. “The culture has been one of disbelief,” she said. “When you’re telling people to take really good, thoughtful care of patients, their eyes glaze over.”
Delirium, which can develop from surgery or old age or acute illness, describes a set of conditions all manifesting in some form of confusion. Delirium comes with wild hallucinations, intense paranoia, disorientation, memory loss, and other deficits in so-called “executive function,” from working a remote control to managing medications. It’s unclear whether delirium is the cause of an already present decline or if it uncovers conditions already at work, Jim Jackson, a neuropsychologist at Vanderbilt University’s Critical Illness, Brain Dysfunction and Survivorship Center told me. Every day that delirium goes undiagnosed increases the odds of permanent impairment.
Veterans with delirium may think they’re back at war. Sexual assault victims may develop vivid (and untrue) memories of been raped by a healthcare provider. “We had an individual here who was in the CIA, convinced he was in a terrorist training camp, being tortured,” Neufeld told me. Another patient who’d undergone a lung transplant during the H1N1 flu epidemic developed a strong belief during his treatment that a sushi restaurant just outside the hospital was serving human flesh. He told psychiatrists “I know it probably didn’t happen,” Neufeld relayed, “but I made my mother walk with me around the perimeter, to see if there was a sushi restaurant there.”
If quickly assessed and treated, delirium can clear up within days. If allowed to fester, it can lead to severe long-term cognitive decline. Dementia, even.
I arrived in Springfield that day last June to find my mother manic and agitated. She was angry at the doctor who’d performed her surgery, wanting to sue him for keeping her in the O.R. for as long as he did. She rambled for minutes in answer to questions that weren’t asked of her.
For the next week, her increasingly worried roommates texted and called me regularly with disturbing updates. Mom was barely sleeping, was constantly rambling, upset, threatening to sue the hospital. In one particularly uncomfortable state, she agreed to take an antipsychotic her doctor had prescribed. She said it paralyzed her, and the experience left her highly suspicious of that medication and my involvement from then on. She also agreed to go to the hospital, despite deeply ingrained fears of being institutionalized, a la “One Flew over the Cuckoo’s Nest.” After a few cursory checks of her vitals, hospital administrators sent her home again. There, her condition deteriorated.
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Descriptions of delirium date back to Hippocrates, who called what’s now known as hyperactive delirium “phrenitis” and hypoactive as “lethargus” and warned that this “wandering of the wits” was a harbinger of bad times ahead. But only in the past 15 years have doctors and hospitals begun to grapple with the power of this destructive syndrome and the ways they might be able to stop it. “The vast majority of surgeons know very little about post-operative delirium,” Daniel Davis, senior clinical researcher at University College Hospital in London, told me. “They don’t know what they don’t know, and they don’t recognize what they don’t understand. There are very few systems of care well-prepared for it.”
What happens to our brains as we age is not unlike what happens to the rest of our bodies. They grow vulnerable to injury, which is why exercise, a healthy diet, adequate sleep and avoidance of alcohol and tobacco use are critical — for everyone. But until recently, doctors have failed to pay enough attention to protecting the brain during illness, hospitalization and surgery, times when “the aging brain is extremely vulnerable to damage that may not be reversible,” Harvard professor and leading delirium expert Sharon Inouye wrote in a post at the Milken Institute. As Inouye and colleagues Tamara Fong and Samir Tulebaev wrote in the journal Nature Reviews Neurology in 2009, “delirium can be a key factor in initiating a cascade of events that may lead to a loss of independence, decline of executive function, institutionalization, and ultimately, death.”
Delirium is preventable, even in these high-risk settings. To detect it, the best doctors look for “medication misadventures,” Daniel Davis, senior clinical researcher at University College Hospital in London, told me. “We always start with drugs, drugs, drugs, and then drugs,” he said. That means a careful analysis of what medications a patient is on before the surgery, because it’s by this point well-known that certain medications (or a plethora of medications) will likely trigger post-operative delirium. My mother was taking opiates for her pain and Trazodone, a serotonin reuptake inhibitor, to manage her bipolar syndrome, before the surgery. Those drugs — either taking them or withdrawing from them — are common delirium triggers. She should have been weaned from them weeks before her shoulder replacement. She wasn’t.
When it seemed like the only option, I packed enough things for a longer stay and headed to Springfield. Getting my mother to eat, bathe, take her medication, do her physical therapy and get to sleep was like trying to teach a toddler on cocaine how to run a Fortune 500 company. She interrupted me and everyone else constantly, insisting we endure rambling diatribes about how “getting ahead of the pain” was akin to two freight trains passing one another. She argued with everyone about everything. By the end of each day, anyone in her orbit was exhausted. And at night, her increasingly severe delusions would take hold.
“I need to go to Portland,” she awoke me to say at 4 a.m. in early July. “Amelia is having my grandbaby.” Amelia (my partner) was not having anyone’s grandbaby. Mom wasn’t wearing her shoulder brace, and refused to put it back on. The doctor said she didn’t actually have to wear it, she insisted. I begged her to go back to sleep, to take her meds. Some version of this happened night after night. Once, it was to demand to her roommates that I be kicked out of the house. Another time, she walked outside barefoot in little more than a nightgown and stood in the yard.
I searched desperately for a cause. Her surgeon’s office stopped returning my phone calls.
Two weeks after the surgery, I finally realized she needed more help than I could marshal. I found her in her recliner, mumbling incoherently, then repeating with a blank, creepy gaze: “Winston? Are you here? Trust. Verify,” again and again. “I’m here,” I’d respond. “Trust,” I began to reply back to her. “Verify.” It was as if she were in the middle of a bad acid trip. I did my best to comfort her, but also to insist that she wear her brace and that she be careful with her healing shoulder, which she’d come to describe as “the baby.” She would detail in long-winded prose to caregivers how “the baby” needed to be supported as she came in and out of her brace. “You’re hurting the baby,” I tried explaining to my mother as she rolled her full weight atop her new shoulder in that recliner, again and again. “Winston? Are you here? Trust. Verify.”
Cahoots — a local crisis intervention service — came and convinced her to go to the hospital, the right hospital, the one where they know how to deal with elderly patients suffering from mental illness. Sometimes opiates can cause symptoms like the ones my mom was experiencing, they told me. Maybe that was the issue. Maybe if I could get her weaned off of them, she’d get better, I hoped. She got worse.
There are multiple cognitive tests available to providers to detect delirium. Even at this better hospital, doctors never performed any delirium-specific testing. They ran a CAT scan and an MRI and would often give my mom a general cognitive assessment known as SLUMS, for St. Louis University Mental Status exam. Mom performed about as poorly as you could on the SLUMS. At one point, her score was a 4 out of 30.
The right prevention approach can reduce the incidence of delirium by as much as 40 percent, researchers estimate. After surgery, getting a patient up and moving around as quickly as possible is critical. “One of the worst things we can do to people is keep them in bed,” Neufeld says. At Hopkins, a team of rehabilitation therapists do nothing but mobilize people in the unit, urging even patients who are “really sick” to get out of bed and walk, “maybe even on the day they come in.” Patients should be constantly reminded where they are, what day it is and what time it is; they should be regularly stimulated cognitively in any other ways possible. The sleep cycle is particularly important, as what’s called “day night reversal” is one of delirium’s hallmarks and most challenging expressions, Neufeld said. I knew none of this advice before my mom’s surgery.
Mom spent several days in the hospital, where her delusions continued. She thought a woman in a room a few doors down was her former roommate, and that Chelsea Clinton was a nurse there. After some doing, I moved her to a skilled nursing facility that specializes in physical rehabilitation and they made sure she ate, bathed and completed therapy. Then, inexplicably, my mom took another turn for the worse. I again rushed to Springfield to find her red-faced and furious, at her caregivers and at me, insisting that she was being trapped there, reminding me that her mother “died in a place like this” (which is true) and angrily demanding to go home. The nurse described her as “Bonkers. Absolutely bonkers.” Amelia and I calmed her down, and hoped she’d stabilize. She didn’t.
A few days later, I got an email from the administrator of the facility, saying my mom had tried to escape, and that they’d taken her back to the hospital. The nurses there told me she’d tested positive for a urinary tract infection, which can explain at least the exacerbation of my mom’s agitation and delusion, if not the root cause. And for the first time, a doctor or the hospital psychiatrist had suggested what that underlying cause may be: a condition they called “post-surgical delirium.”
I spent a frantic day researching everything I could about this condition. I have since learned that as we age, the body undergoes homeostenosis, the progressive shrinkage and constriction of every organ system’s ability to respond to stress. The aging brain is particularly prone to being affected by drugs that cloud its “sensorium,” wrote researchers in the Journal of Anaesthesiology and Clinical Pharmacology in 2017. That leaves some older adults “teetering on the edge of neurodysfunction,” say the study’s authors. Add a stressor — a surgery, anaesthesia, drug withdrawal — and “compensatory mechanisms are overwhelmed.” The brain simply can’t deal.
Eight of the 10 patients in my mother’s hospital wing, the acute care facility for the elderly, were in some way confused, one of her doctors said. In his experience, this was common. And incurable.
I knew my mom was racking up steep bills living day after day in a hospital. I also had learned that sometimes the best solution to post-surgical delirium is to return a person to familiar surroundings, where they can reconnect with a world that’s less confusing. Mom was taking Trazodone and Seroquel and becoming increasingly cooperative and cheerful with the staff. What I didn’t know then is that these drugs could, if administered for too long a period of time, ultimately make her worse.
After six nights, we all agreed maybe it was time to give her another try at home.
Mom didn’t get better. Not long after leaving the hospital for the second time, she had a series of delusional epiphanies. She didn’t need medication, she decided. She abruptly stopped taking anything, and she immediately turned as manic and uncontrolled as I have ever seen her. She insisted neither the doors to the house nor the refrigerator needed to be shut, that Bosley should be able to eat right off her plate, that she didn’t need to walk with a cane anymore, that all of her pain was in her mind, that she should knock down all of the interior walls in the house, that she was on her way to becoming a foster parent, that you didn’t need to press the accelerator down on the car for it to drive — “It just goes!” — and on, and on, and on. The more manic she got, the more she verbalized a series of delusions. Some of her revelations were beautiful. Others were terrifying.
These “hyperactive” expressions of delirium were easy to spot and to understand as a major problem. I now know that after a brief stint of lucidity, patients tend to swing into into “hypoactive” delirium: withdrawal, lethargy, apathy, staring blankly into space, slurring their speech. At the time, I and some of Mom’s care providers would take those more subdued hours as a sign of progress, and we often decided to act upon the good news: sending her back home again, for example. Now, I know she was simply en route to a different brand of mental illness.
My mom trashed her house. She packed things she decided she no longer needed into big white garbage bags, she tore through every cabinet and drawer in the house. She stopped showering, drinking water with any regularity, or eating unless someone cajoled her into it. She wandered out into her neighborhood and into people’s yards. And she turned on anyone who tried to help her. She locked herself into her bedroom and refused at times to let her roommates into the house. They called Cahoots, for the umpteenth time. The cops came. The cops took her back to the hospital.
My mom arrived in the depths of a furious manic episode. Only an intramuscular injection of Haldol stopped her from violence against the hospital staff. Nurses wheeled in a bed with tent-like sides that zipped up around it, which was the only way to prevent her from repeatedly trying to escape. Only when she agreed to take her medication was she allowed out of it. It was clear by then that my mom couldn’t return home anytime soon. I had to pursue long-term care.
During this third round at the hospital, Mom let me know that she was onto me. Well, me and my friend Simon, who is a casting director, and who I had surely hired to mastermind the creation of this so-called “hospital” and to fill it with actors who posed as doctors and nurses. She was fine with it for awhile, though, because she knew we were doing it to “teach her something,” and she appreciated that. Until she didn’t.
I worked to get her enrolled in Medicaid and to find the best memory care facility in the area.
“Thank you for getting me out of jail,” my mom texted me a few hours after she arrived at the locked facility I hoped she’d spend the next several months of her life in. “I am happy.”
Her happiness was fleeting. She grew increasingly competent, which I verified after finally getting her in to see an actual neurologist, two hours away, in Portland. Mom scored a 26 out of 30 on her cognitive test. She was talkative and tracking more and more complex subjects, which would become both a good and a bad thing. The clearer she became, the more convinced she was that she didn’t belong in a memory care facility.
Not long after her arrival at memory care, Mom began a series of infantile clashes with the staff. They let Bosley visit, on the condition that she keep him on a leash and pick up after him. She let him roam all over the grounds untethered, then lied and said she hadn’t. They let her have sewing equipment if she agreed to put it in a locked cabinet every night. She ignored that instruction again and again, until the staff had little choice but to take those things away from her, which only made her more rebellious and angry. After a couple of weeks, she became fixated on escape. “I could climb that fence,” she told one of her friends who came to visit. “There are spots where the trees are very close on the other side. I could just climb over and walk 1.7 miles (she used her iPad to determine this) and be at my house.”
Mom didn’t climb the fence, but she tried everything else. One day, she started emailing realtors and pretending to be interested in buying houses in her old neighborhood. Would they be willing to pick her up and drive her to look at the houses for sale? Of course! The realtors replied. And then they showed up at her memory care facility and were turned away.
As plot after plot failed, mom grew increasingly frustrated, and deceptive. She stole things from her neighbors and Gateway’s staff. She poured coffee on the care manager. She lied to her old roommates and her friends, telling them that she was allowed to leave unsupervised, to go to yoga. She asked for long lists of groceries, which always included alcohol: whiskey, tequila, champagne.
My mom was learning the system. When she was in the hospital, she had claimed “men” there were abusing her, and came to believe that’s why I got her out of there, so maybe a similar tack would help her escape from Gateway. She called Cahoots and 911 over and over again, insisting she was being mistreated and that she be taken away from Gateway. The first time, she successfully convinced Cahoots to take her back to the hospital. The ER doctor didn’t admit her, and the staff put her in a cab, which she promptly redirected to her old home. Oddly enough, she didn’t try to get in.
She stabbed herself in the wrist with a sewing needle so she could use that as evidence that the staff had harmed her. She told the police that I had strapped her to her recliner earlier that summer. She said whatever she thought would set her free. No other consequence, not the damage she might do to our relationship or to any of her friends, mattered. All she cared about was getting out.
So on a gorgeous day in late September, after nothing else freed her, she convinced a friend to walk her to lunch at a Thai restaurant just down the street from the facility. When lunch ended, she simply refused to return.
Mom had researched her rights to leave memory care on her iPad. So when her friend got up to leave the Thai place, my mom just stayed, then called a cab, directed it to her old neighborhood and went home.
I hoped someone who’d regained enough cognitive ability to escape from memory care would be able to manage herself at home. But she refused to stay at home. A week after she got out, I got a message from Mom via a new email address she must have just created. There was no text in the body of the message. The subject line: “fuck u.”
What came next were the reports, from neighbors and friends. She thinks I’ve bugged her house, and refuses to stay there. She thinks I’ve hacked her car keys or disabled them somehow, and is convinced the car isn’t driveable. Despite that, she drove the car to a Toyota dealership and demanded replacement keys, blocking the driveway and resulting in her arrest for trespassing and the impounding of her car. I later found a report from Corvallis police, describing this odd scene: “While (Toyota Manager Brian) Carter was talking to her she began to raise her voice and ask each person present if they were a Democrat… Officer Ray tried to talk to the female and she continued to ask him if he was a democrat loudly. She then looked and started to walk towards the employees and shouting ‘ARE YOU A DEMOCRAT?’” The officer warned she’d be arrested if she didn’t leave, and began to count 1..2.. She started counting with him: “2…3…” The cop handcuffed her, then asked her name. She revealed only her maiden name. Then, the day she was born. “It was a Wednesday,” my mother replied. And with that, my 73-year-old mother was off to the clink.
Mom was immediately matrixed out of jail, and she hopped in a cab to get back to the hotel she was staying in at the time in McMinnville, from which she was evicted after her credit cards were declined and she’d trashed the place.
My mom told friends she was headed to Alaska to see a friend she knew from Dutch Harbor. Ultimately, she changed her mind and decided California was the place to be, wildfires and all.
About three days into her trip came that call from the Berkeley police. Right around the same time, her neighbor let me know Mom had pulled up to say goodbye with the car loaded full of gear, Bosley perched at her side.
Despite the dearth of well-educated providers across the country who might better anticipate and then treat post-operative delirium, there is at least a growing movement to do a better job. Inouye developed the Hospital Elder Life Program, which is now in place in 200 emergency rooms, intensive care units, post-acute and long-term care settings and palliative care across the country. Hospitals like Hopkins are developing “post-ICU clinics” or “ICU recovery centers” to treat patients who’ve had a major surgery after they leave the hospital. And there’s a substantial focus on educating physicians and nurses about the magnitude of this problem, Jackson says.
About a third of patients who develop delirium never return to their baseline state of cognitive function. Another third improve. The rest get worse. “The absolute numbers are definitely going to increase,” as the population ages, Davis says. “But you’d like to see the percentage go down.”
Part of the reason to expect more cases is that medical advances have emboldened both surgeons and older patients to undergo procedures that might have been too risky a decade or two ago, Jackson told me. “Now it’s not that uncommon to see people well into their 80s getting a shoulder or knee replacement that wouldn’t have been recommended a few years ago,” he said. “Now, physicians are increasingly willing to do these things. But because older patients are more vulnerable, they get these surgeries and get delirium. And there continues to be a lack of full appreciation for the risks.”
The reason for that, in part, is because there’s a disconnect among most surgeons in post-operative care. “Providers treat patients very intensely in a hospital setting, those patients go back home and the key providers don’t have sustained contact with the patient anymore,” Jackson says. “It almost never happens that a physician or surgeon sees one of these patients again unless they wind up in the ICU.”
Several times a week, Jackson and his colleagues hear a story like mine: “People who say ‘I went to a leading academic hospital, I’m a sophisticated medical consumer, my family was all over this, and no one told us to look out for these things to happen’,” Jackson says.
Fighting delirium effectively is a worthwhile investment for hospitals. My mom spent weeks in the hospital thanks to her condition, and while Medicare reimbursed most of her bills, the hospital had to absorb her $350/day copays. Davis’ own father went through a similar ordeal about a decade ago, after he was diagnosed with early vascular dementia, he told me. “Until he got into so much financial and physical trouble that he had to let us take over, he was continuing to do things that were harmful,” he said. That took seven years.
Davis advised me not to be optimistic. “The likelihood she’s going to get as good as she was a year ago probably isn’t there anymore,” he said. “The paranoia is enough to impair her ability to get good care. I doubt you can actually protect her from herself.”
Last Thanksgiving, when I began writing this story, I had no idea where my mom was. After catching a plane to D.C. with Bosley by her side, she wound up in Marshall, Va., where she found an apartment, signed a lease and wrote a bad check for the deposit, plus first and last month’s rent. That led to her eventual eviction and to felony fraud charges. As she hid out in the apartment, she drank, and when she left the apartment to buy more booze, she got into more trouble. Convinced of some romantic interest on the part of the manager of the local market, she started stalking him, and was ultimately arrested for harassment. She spent her 74th birthday in the Fauquier County Jail. She later told people I’d had her beaten in her cell.
After a series of urgent but also cryptic phone calls from her mortgage lender, I decided to apply to become my mother’s “rep payee,” meaning her Social Security checks would be sent to me and I could use her finances to get her out of arrears in Oregon and to pay for some kind of housing in Virginia. Bosley died, somehow. My mom told people I poisoned him. I filed for a conservatorship, which is sort of like a power of attorney, and spent the next few months paying lawyers to convince a judge I should manage my mom’s finances.
In the end, I lost. She dialed into the hearing in May and, sounding perfectly competent, regaled the courtroom with a story of how I’d strapped her to a chair after her surgery, and drugged and starved her, before having her committed. Everything she’d done, she argued, was to escape “my abuser, who is sitting in that courtroom.” To escape me. The judge decided her fit to manage her own life, I emailed our friends and family members of the result, and haven’t heard from her since. Thanks to a glaring failure to anticipate and treat an increasingly common syndrome, I once again spent Thanksgiving having no idea where my mother is.
I hope she’s safe.
* * *
Winston Ross is a freelance writer based in Portland, Ore. Some of his work can be found at winstonross.wordpress.com.
Editor: Sari Botton