A Room with a Darker View

by Claire Phillips

  Chaos of night

  My mother was no longer elusive. She was no longer the harpy flying about her white-carpeted apartment on a broom. Instead she was docile, willing to share with me the nature of her present delusions or hallucinations. Listening to my mother as she explained and enacted the terror she experienced alone in her apartment, I became privy to the intimate workings of a nightmare. The dividing line between waking and sleeping had been plundered, the chaos of night in full bloom.

  In the short, narrow hallway between her bedroom and walk-in closet, she demonstrated for me the endless running, directly overhead, that “they” performed throughout the night. She ran in place, pumping her arms. It was a quick-paced, cartoon-like motion. I had not seen my mother animated like this before. I was relieved that she felt safe enough to share the dissolving parameters of her consciousness with me. I was also astonished. In the past her psychosis had manifested itself in the form of unfounded accusations, conspiratorial theories, life-threatening delusions. She was being pursued by corporate entities. Her teeth were melting and on the verge of falling out. Today she seemed vulnerable, almost precious. Like a young child, she was energized. Confused. She plopped down on the couch and confessed to me a host of worries, mainly about “them.” Overhead pounding and loud voices were keeping her awake. She wanted to sleep but couldn’t.

  “Not to worry, Mom,” I tried reassuring her. “You have the right medication now. In a few days you will be feeling much better.”

  Medicare days

  John and I conferred on what to do next. I confessed that I was not up for seeing our mother go through another hospitalization and recommended that we keep her at home and take care of her ourselves. I was not adept at handling hospitals and doctors. I did not want to endure what we had gone through two years earlier at Ramapo Ridge. I did not want to encounter my mother in what is known as the “residual phase” of the illness, the one that follows the “active phase” of energetic hallucinations and delusions. I had found it nearly unbearable to watch her become what I refer to as catatonic, a state in which she was listless, inactive, and often unreachable.

  “I have the time. I am only teaching two days a week this month. Why should we risk another hospitalization so soon?” I said to my brother. He agreed. We could do this ourselves.

  Over a recipient’s lifetime, Medicare grants those suffering from mental illness no more than six months of hospitalization. After her last relapse, my mother had only one hundred days of Medicare left. It seemed ironic. We had waited fifteen years for our mother to qualify for Medicare so that she could move to California, where medical insurance for those with pre-existing conditions had become prohibitively expensive. But now it seemed she still did not have enough medical insurance to cover her needs, even with the private supplemental insurance that she had purchased. My brother repeated this reality often, reminding me that once she reached the last of those days, she would be forced into bankruptcy. This terrified me. As a part-time instructor at a number of educational institutions, I was just able to cover my own living costs. I was not sure what I would do if my mother were to lose her access to Medicare and become a dependent of the state of California, a state that shortly after the subprime debacle appeared to be teetering on insolvency.

  I considered my mother’s age. She was seventy-three years old. Already she had broken one hip. Myriad medical complications could arise. What if she were to get colon cancer like her mother did in her early seventies? She had already had one hip replacement. What if she needed another? Her routine visits to the doctor did nothing to ease my mind. One doctor had recently prescribed for her a cholesterol medication renowned for its deleterious side effects. Was he not aware of the numerous medications she was already taking? My mother followed her health-conscious AARP diet to the letter. I could not understand how she could be a candidate for high cholesterol.

  Then there was the fall she had shortly after moving out to California. While she might have more days to spare for physical calamities, the same was not true for psychiatric care. Another psychiatric hospitalization could cost my mother her remaining Medicare days. I was not prepared to forgo this safety net.

  Secondary features

  John and I devised a plan. It was essential that someone oversaw our mother’s medication. On those days when I was not working, I would drive to our mother’s apartment to administer her pills once in the morning, and then again in the evening until we could procure the help of new full-time health aides. My brother would help on those days he didn’t have his daughter or was not commuting long distances for work. It was critical that our mother received her pills at the appropriate times and with food. A single missed pill would cause an immediate setback.

  In her compromised state, everything became more difficult. Simple decisions were almost impossible to make. Activities of the most basic kind took an unpleasant amount of time. Dressing was especially hard. Mom found fault with all of her clothing. Everything smelled. It didn’t matter if I had just had the item professionally cleaned. She was also convinced she smelled, no matter how often she bathed or changed her clothes.

  Because my mother suffered from phantosmia, or olfactory hallucinations, she required almost daily acquisitions of new bottles of deodorant and dozens of new toothbrushes, which was particularly strange given the fact that for the past twenty-five years, my mother was loath to waste money on superfluous purchases of any kind. Living on a limited income, she had adhered to a strict budget, clipping coupons and shopping sales, rarely purchasing something extra for herself.

  In addition to the endless supply of soaps and deodorants she insisted we buy, she required me to procure a limitless supply of lip balm. Dehydration was among the chief side effects of her medication. She could not drink enough water. Ordinarily, my mother maintained a healthy routine of drinking several glasses of water per day in order to combat the dehydration associated with her medication. However lethargic and confused, she could no longer maintain this protocol. To add to the misery, no brand of lip balm would suffice. The Kiehl’s lip balm, Burt’s Bees Lip Balm, ChapStick plain and cherry flavored, Carmex, Whole Foods Vanilla Lip Balm. Not one of these was right. Everything stung, or was deemed dirty, or was soon lost or disregarded.

  Another couple of weeks

  With each passing week, my mother grew more irritable and cantankerous. Her delusions only intensified, causing her to become hyper-vigilant about cleanliness. This was especially strange as she had never been a stickler for neatness. Sloppiness of any sort was unbearable. The health aide workers that we hired for a pitifully low wage were placed under gross scrutiny. Not allowed to share her refrigerator despite being there all day, they were told they had to eat outside of her apartment. Not one of her health aide workers was deemed clean enough to handle her food, or dishes, or silverware. Whenever I confronted her about admonishing these women, she claimed not to know what I was talking about. I began to wonder if her denial was related to her illness, or if she was just being stubborn.

  Outings also proved difficult. One afternoon, I arrived unannounced and suggested we go for lunch.

  “Where would you like to go? The Cheesecake Factory or the Farmers Market?” For as far back as I can remember, my mother’s favorite restaurant to go to in Los Angeles had been The Cheesecake Factory. She also enjoyed eating at Loteria in the Farmers Market, but on this occasion it was impossible for her to make a decision. It was very difficult to get her out of the house. She was convinced that as soon as we left the apartment, her address book or her phone would be stolen. The others, or they, as she called them, would appear in our absence to steal her things. I had a terrible time getting her to leave her closely guarded bed. Only when I had recovered her address book and phone from the sheets of her unmade bed could I persuade her to leave.

  On the short walk over to The Grove, she changed her mind a number of times about where to eat. Growing exasperated, I finally told her we were going to The Cheesecak
e Factory. After taking a seat close to the balcony overlooking the busy plaza, she changed her mind again.

  “Maybe we should have gone to the Mexican restaurant.” She could no longer make a decision without enduring an inordinate amount of self-doubt. I wondered why she was like this. What had happened to make it so impossible for her to stabilize and make routine decisions? As she picked unhappily at her chicken Cesar salad, a dish she would have eaten with gusto just months ago, I tried consoling her.

  “Don’t worry, Mom. Your pills will start working soon. You’ll start feeling better in a couple of weeks.”

  “You keep saying that,” she said. “You said that weeks ago: Another couple of weeks,” she parroted my words. Then she confided in me something I didn’t want to acknowledge. “I don’t think my pills are working.”

  I knew my mother was right. She was a bright woman and had communicated something important to me. I was unable to react properly. She was in need of a stronger dose of Seroquel, an amount that might cause her blood pressure to elevate dangerously and could only be administered to her in the hospital. Nothing my brother and I could safely give to her alone at home. Rather than pursue a conversation on the inevitable next step of another hospitalization, I focused on her eating.

  “Go on, Mom. Have another bite.”

  Bananas

  Over a month into our caretaking foray, my mother’s condition continued to deteriorate. She was hostile when I arrived the following morning to help her with medication while we were between health aide hires. She didn’t trust me to correctly pour out a carefully measured cup of Cheerios for her, but was no longer capable of doing this, or anything else, for herself. Before she had been able to do everything on her own. Now, dressing took hours. She insisted that her hip was broken and that she could no longer walk. When my mother was not expressing irritation or anguish with her perceived ailments, she was lying helpless and laconic in bed. She wasn’t eating.

  Former delusions from a previous relapse had resurfaced with stubborn tenacity. Once again, she believed her teeth were falling out, making most foods “too dangerous” to eat. She stopped eating the Lean Cuisine frozen dinners that had been the mainstay of the past thirty years, the bland one-hundred-fifty-calorie meals she purchased for under two dollars at Ralphs Market. I immediately placed her on a daily regimen of two Ensure drinks, the calorie-rich diet supplement, and even this was a battle. Because I did not routinely cook, I tried stocking her kitchen with sandwiches from Whole Foods instead. From the time she had moved into Park La Brea, she had dutifully eaten a half chicken-salad sandwich for lunch, always saving the other half for the following day. I had trouble getting her to do even this now.

  “Please just take another bite,” I would plead.

  “The crusts are too hard,” she would complain. “They hurt my teeth.”

  If I insisted, she would whimper, kicking her legs under the table like a small child. Previously, she had adhered admirably to a strict daily regime of eating certain fruits and vegetables, careful, for example, to eat a banana each day to regulate her potassium intake. Now she hated bananas and screamed if I brought her a new bunch. I don’t want to look at them! Don’t bring me any more bananas!

  Beverly Center

  In no time, my mother and I were locked in an ugly battle. Whenever she rejected a choice of food or drink I made for her, the sparring would begin. It wasn’t long before I was shouting at my mother: in the kitchen, when she would hover over me while I tried to prepare food for her; in the grocery store, when she derided all of my food choices.

  It was ghastly how low I had sunk, bursting into loud, irate tears at the cash register in Whole Foods and in the Beverly Center after my mother accused the salesperson who had helped her choose some sneakers of overcharging her. I could not handle my mother’s paranoid remarks, shouting like an unruly teen in public places.

  “Fuck you!” I shrieked loudly in the Beverly Center, when I found it all too much to bear.

  I felt agonizingly alone, despite being able to email or call my brother whenever I felt overburdened. It became clear to me weeks into her relapse that I had no choice but to write about my family history. I could not keep the torment of her relapses and my disappointment in the medical system to myself any longer. Whatever else I had hoped to accomplish in my professional life would have to wait.

  Psychiatry and neuroscience

  Studying as much psychiatry and neuroscience on the subject as I had time to access easily between grading papers and appearing at my mother’s apartment to help with groceries and other daily needs, I discovered the literature on the topic had exploded, with new memoirs on the subject of schizophrenia and schizoid affective disorder appearing monthly. Many people coping with a chronic mental disorder had taken to self-publishing.

  After reading one work, I was taken aback once again at how little I understood of the actual timeline of the illness. Outlined within these pages were the powerful effects of each of three stages: prodromal (or beginning), acute (or active) and recovery (residual). Most striking was the commentary on recovery. The author of one work claimed that it took him at least a year to fully recover from the depression and mental flattening that precipitated a return to “normal.” As the author described it, it was as if he were blanketed in a heavy fog for months after the months of intense psychosis had dissipated.

  Here I was expecting my mother’s return to “normal” to occur in two months. I was not prepared for her to suffer in a state of mute agitation for an entire year, and now recognized my impatience for what it was: a profound state of ignorance. After enduring months of fierce hallucinations, manic sleepless nights, and after ingesting copious amounts of anti-psychotic drugs with little to no exercise, what hope did my mother have of regaining her equilibrium after such a short passage of time? This thin, self-published memoir with its appropriately dark cover was eye opening, and I regret that in the midst of a difficult period personally and a short geographic move, it went missing.

  On the shelves at the library I found more memoirs, notable biographies, medical histories, works on the history of psychoanalysis, science-focused medical tomes such as Richard Noll’s American Madness, and works of feminist literary analysis and history including Elaine Showalter’s disturbing and immensely readable study of hysteria and the treatment of women with mental illness, The Female Malady. Reviewing these works, not only did I come to realize how fluid our interpretation of mental illness has been, from hysteria and dementia praecox to our present understanding of schizophrenia and its biological roots, I also came to realize how poorly the treatments had worked until recently. Whether women who received treatment in the mid-nineteenth century suffered from schizophrenia or not, I cannot say, and perhaps no one will ever know. Showalter, however, details the horrifying use of “sexual surgery” or clitoridectomy on women who were institutionalized and being treated for mental illness.16

  Overcrowded institutional custodial care continued through the late 1800s into the 1930s, when aggressive treatments such as the insulin-induced coma, which required that patients be repeatedly injected with large doses of the hormone in order to produce comas came into favor, along with electroshock, the production of seizures by the use of electric current. The lobotomy or prefrontal leucotomy was introduced in 1936. While there was some success in “calming patients,” it fell out of favor after notable abuses in the 1950s when lithium and neuroleptics, first generation anti-psychotic drugs, became available.17

  In 1959 when my mother first showed signs of this illness, neuroscience was still in its infancy. Electroshock treatment was the prevailing treatment for schizophrenia. If there was no improvement, confinement to a state hospital was the next step. Reading up on these practices, none of which sounded the least bit desirable and were, in fact, quite harrowing18 and, in some cases, deadly, I came to wonder whether my mother was privy to the same information. If so, was this partially the reason that she never sought treatment all those
years ago?

  The paranoid type

  Doing further research, I was struck by the subcategories of schizophrenia, which include the paranoid type, the disorganized type, the catatonic type, undifferentiated, and residual19. Those suffering from paranoid schizophrenia were reported to be the highest functioning, at least in early editions of the Diagnostic and Statistical Manual of Mental Disorders and in sundry publications. People with paranoid schizophrenia are generally more capable of relating to other people and performing at work; their symptoms do not usually appear until later in life. Delusions are usually based on a central theme and continue along characteristic lines for some time. A major stressor is often the cause for those who live with the condition to experience an increased intensity in symptoms. Because they often feel persecuted, they can be quick to anger. A flat affect is not uncommon. Jocular or giddy behavior at inappropriate times, like laughter at a funeral, is a common symptom. People who suffer from this subtype category in particular fear revealing their symptoms to strangers. They can have difficulty maintaining ordinary daily activities such as bathing and brushing their hair and teeth. That this subcategory has been deleted from the DSM-V has left me more than a little perplexed.

  In his notable book Whispers: The Voices of Paranoia, Dr. Ronald Siegel reports how the origins of paranoia are believed by neuroscientists to be located in the “limbic system”: a group of neurons and hormone-secreting structures deep inside the center of the brain considered to be highly feeling. The primary features of paranoia, Siegel conveys, are “hyperalertness and hypersensitivity to the smallest details…. The paranoid becomes rigid and inflexible;” the person “is attuned to any possible threat.”20 This seemed more than evident in my mother’s case. Her attention to detail was agonizing and a source of great distress. Whether it was the attention paid to a tiny bit of charred skin on a rotisserie chicken or the unfamiliar substance in a pot of boiling soup, the most-minute detail was often suspect, indicative of countless potential horrors.