“It’s closed for repairs,” she would say.
“It’s not,” I would counter, urging her to go outside.
The only time she smiled was when she was in the company of her granddaughter.
Then one night when her health aide had the day off and neither John nor I were available to help, she refused to take her pills.
Our mother’s health aide, Laura, called to tell my brother the following morning.
“Your mother did not take her evening pills.”
Upon hearing the bad news, immediately John left work, whisking Mom to the emergency room of Resnick Neuro-psychiatric Hospital at UCLA Medical Center, the one facility where, her doctor told us, he might have some influence.
Admittance
One of the difficulties of my mother’s illness was persuading medical authorities that she was indeed sick and deserving of medical attention. Someone suffering from paranoia does not communicate perceived threats for obvious reasons. However, if it were not immediately clear that she was under the thrall of powerful hallucinations and delusions, she would not be admitted to the hospital and would be denied essential care. It is easy to become distrustful in the face of a system in which insurance companies habitually deny claims regardless of one’s right to obtain treatment. Our best defense would be to claim that our mother was no longer thriving.
John explained it to me this way: “She is no longer drinking water or eating. They have to take her.”
After my brother waited twelve-hours overnight with my mother in the light and airy emergency room with its steel and glass-vaulted ceiling, the next morning he had to leave to fulfill his teaching duties. It was my turn to become versed in the art of hospital admittances—a role I had been ducking for some time. At 11 a.m., I arrived. My mother looked agitated, her eyes wide and despairing. She was still unable to eat, rejecting food that I had brought for her, a sandwich and small Caesar salad. When her turn for admittance came, there were no beds left so we were shown to a makeshift cot in a small annex, where a security guard monitored the emergency room facilities on two separate video feeds. As if she were being slowly dispossessed of her senses, my mother snapped at whomever entered.
“What’s that? … What’s going on?”
Terrified we would be sent away without proper care, I confided in the intern assigned to my mother how we ended up here.
“She was doing fine until the pharmacy gave her the wrong dosage of her meds. We were hoping she would get better on her own after a couple of weeks of taking the correct dosage,” I continued but explained that she was now refusing to take her pills.
“Should she be living alone?” the young gruff intern said within earshot of my mother, folding his arms over his chest.
“Where is she supposed to live? She doesn’t have the income to pay for a reasonable nursing home. She was independent for thirty years,” I gushed. “She had a really good run.”
I regretted my spiel immediately. How would we get a bed in this A-list facility now?
The intern in green scrubs then asked me to list my mother’s delusions. I outlined for him the ones I could recall: “She thinks it’s raining in her apartment when it’s clearly not,” I enumerated. “She says her teeth are falling out. She refuses to eat. Someone is poisoning her sandwiches. She doesn’t think I’m me anymore.” He shook his head. Apparently this was not strange enough.
“You will need to list all of her delusions for the psychiatrist,” he warned in a stern voice.
I was dismayed, flummoxed. What was he hoping to hear? That she was under some kind of mind control? That she believed she was the second coming of Jesus Christ or a reincarnation of Helen Keller?
She had been under psychiatric care for over thirty years. Wasn’t that proof enough?
X-ray
We were in luck. It was decided after a short physical exam that my mother was indeed having trouble. A fleshy ridge had formed under her bottom lip: a consequence of prolonged dehydration, I was informed by a nursing assistant. This ridge had appeared during her last hospitalization, and its appearance frightened me. Learning that she had been in a prolonged state of dehydration was humbling. I had been remiss not to get her medical attention sooner.
The next complaint they addressed was of a “broken hip.” She told the resident about her hip being broken, of no longer being able to walk well. It was in a sense the truth: having lain in bed for a month, neglecting to eat, she had lost much of her coordination. Even though I told the doctors that I believed the broken hip was a delusion, the medical doctors wanted to check to be sure there was not an actual problem with her hip replacement. At first, my mother rejected taking an x-ray, proclaiming a fear of radiation poisoning. But once she had become acclimated to her healthcare specialists, she gave in to their request.
I was beginning to get a clearer view of her illness. She needed time to adjust to her surroundings and gentle engagement in order to establish trust. The results of her x-ray confirmed that she had not fractured or broken anything and served to put an end to her attachment to this belief.
Another week passes
My brother’s return to the hospital was perfectly timed. An exceedingly helpful female psychiatrist had just finished examining our mother. She did not query us or demand proof of my mother’s illness.
“I have both good and bad news,” she said, leaning against the open doorway of the annex where we had spent a good part of the day. The good news was that she had just spoken with my mother’s psychiatrist who had returned her phone call on a Friday night, detailing our mother’s needs in full.
“That’s a first,” my brother noted, delighted a doctor had advocated for our mother for a change. The bad news was that there were no beds. We would have to take our mother home, then call first thing Monday morning to get on the waiting list. This being Friday evening, there would be no more discharges from the hospital until the beginning of the week. We had waited nearly twelve hours in the emergency ward for this disheartening news.
After a worrying weekend, on Monday my brother called the number he was given in the emergency room only to learn that there was no actual “waiting list.” The conditions for becoming a lucky recipient of a bed were nebulous, perhaps predicated on one’s insurance and ability to pay. A week passed before my mother gained admittance to the famed neuropsychiatric facility, with its seventy-four inpatient beds. A staggeringly small number given that “one out of every twenty-four [California residents] have a mental illness so serious it becomes difficult for them to function in daily life.”25
“There is only one small problem,” my brother alerted me. “They have placed Mom in the eating disorder ward.” Apparently there was no space in the general psychiatric ward, and given my mother’s inability to eat, that she should end up here seemed strangely fitting. “But these rooms are huge,” he relayed over the phone. “She has a couch and an enormous bathroom.”
The following day
After parking in the hospital’s pricey underground parking lot, it took me some time to reach my mother’s ward. I traveled on various elevators to the fourth floor, traversing some distance through long dreary corridors before I finally managed to find the correct security door and was shown to my mother’s room. From my brother’s depiction, I expected something more regal. The room was big but drab; though I could hardly complain. There was a hard-looking vinyl couch. The floor was laid with dreary, institutional tile. However the main drawback was the room’s view. My mother’s room did not look out upon gardens, green spaces, or gathering areas like the hospital literature touted. Above the couch, a large window looked out onto a beige-painted rooftop occupied by a vast mechanical and electrical system.
I found my mother seated upright on her bed dressed in the powder-blue button-down sweater I had recently bought her and a pair of baggy pants. Seated beside her was a pretty young nurse’s aide. She explained to me that at first, my mother didn’t want me to visit.
“She
didn’t think she looked good enough,” her aide said. “But then she let me help her get dressed and brush her hair.”
I was proud of my mother for overcoming her anxieties. She seemed more at peace here. Mom smiled at me and lowered her head for a kiss. But once her nurse’s aide had left, the problems began to announce themselves.
“I have nothing to wear,” she alerted me.
“You do. Mom, look.” I found most of what she needed in a built-in cubby area. Several T-shirts, some pants. Underwear. She then cast a frightened glance toward the window and the view of the massive equipment and its billowing steam.
“Look,” she noted in a hushed voice. “It’s raining.” I didn’t have much patience for her worries and diverted her attention, suggesting we take a walk.
Alas, in this bite-sized ward there was just about nowhere to go. The crescent-shaped hallway that facilitated the flow of patients extended no more than ten yards in either direction. I would soon learn that the eating disorder patients, mostly young women and rail thin, were discouraged from partaking in much exercise. Days were spent moving languidly back and forth between the spacious private rooms and the common room, where they worked on uncompetitive games like puzzles or busied themselves with paint-by-number kits, watched television, often times hooked up to a mobile IV. It was a quiet, intimate ward with no more than seven patients at any one time.
Our ambitions for a walk now over, I focused instead on ordering my mother meals from a select and enticing menu, little of which would get eaten.
Noisy wards
After a worrying weekend, on Monday, as promised, Mom was moved from the eating disorder ward to the appropriate facility. The setting was noisier. The rooms were smaller, the hallways longer. There were more patients, more beds. In this environment my mother’s calm demeanor faded. Immediately she grew angrier and more suspicious. When I first arrived, I found her in bed lying prone at a strange angle. She complained especially of the noise. Sensitivity to sound is often linked to schizophrenia. This took a visible toll on my mother. I was also alarmed to find her in a hospital gown that was thoughtlessly open, exposing her belly in a needless way. Did her male nurse’s aid not notice? On edge, I found myself making everything much worse, complaining about my mother’s attire. Eventually my mother’s psychiatrist appeared: a soft-spoken man in his mid-fifties, whose sallow complexion made his admirable commitment to his work abundantly clear.
His first suggestion was that we reduce the amount of Haldol she was on: “You can see she is already beginning to suffer from a Parkinsonian-like dystonia.” The medication had only worsened her condition, he explained. My mother’s fears had been justified. He suggested we lower it back to five milligrams.
“He’s not very smart,” my mother confided in me when he left the room, the same complaint she had about her doctor at Ramapo Ridge. I was beginning to see a pattern.
Medicare days
My mother continued to have difficulty eating. We had been asked by the medical staff to bring any special foods she might enjoy. But nothing compared with what was on offer at Resnick. I was bowled over by the ample portions of grilled salmon, chicken, seasoned rice. These meals were not inexpensive. Dubious I could do any better, I tried tempting my mother with lovely stews, salmon, and rice dishes bought at a neighboring gourmet store. Nothing stirred her appetite. I used more space in the communal refrigerator than was our right, stocking up on high-protein yogurts.
I called her nurses daily to monitor her eating. “Please make sure she eats something. She won’t get better unless she eats.”
Soon my mother complained of terrible constipation. She required an enema. Throughout the painful procedure my mother moaned loudly, accusing the medical staff of purposely trying to hurt her. I grew terribly impatient with her. No one on staff, however, appeared the least bit disturbed by her behavior. This was a gift I could not offer my mother. Whether we had Medicare days left or not, observing the courteous and efficient behavior of the psychiatric staff, I vowed never to forgo proper medical care for my mother again.
The specter of our mother’s dwindling Medicare days was soon to be raised again.
“Your mother cannot stay in the psychiatric facility for more than two weeks,” her doctor told us. “If she needs more care, you might be able to get her signed in as a medical patient of Ronald Reagan for physical therapy.”
“She will need more care than that,” my brother said, reminding the doctor that she had spent three months at Ramapo Ridge before being released.
“That was far too long,” our mother’s doctor shook his head in disbelief. “I think she will be much better in two weeks.”
John then shared his mounting fears with the doctor that at some point the medication would stop working, and she would have to endure her most acute symptoms without the relief her cocktail had afforded her for the past three decades.
“There is no reason to worry,” the world-renowned doctor said to my brother. “If the medication worked before, it will continue to work.”
Our fears were assuaged—we no longer needed to divvy out Medicare days to our mother with punishing paucity. We would be okay.
April 2013 release
Two weeks after my mother’s admittance to Resnick, we were told she was well enough to be released. She was still unable to care for herself, had eaten next-to-nothing in the hospital, and was still weak. We had no choice but to procure more help. Again, I was plagued with doubts that we would find someone up to the task. Her phobias and intense food aversions were hard on everyone. Luckily, my brother found someone willing to put up with our mother’s difficulties. Another young Filipina immigrant, this time in her late twenties, Kate exhibited great understanding and patience toward our mother regardless of her marked troubles, including the constant complaint of persistent hip pain and an inability to walk.
Returning home, she still insisted that her television programs, the loud political fare found on MSNBC that saw her through long and lonely days, had been “vanished” by an undisclosed power. Despite Mom’s delusions, despite her constant criticisms and complaints, Kate never seemed taxed. She was vigilant about taking our mother on walks unlike her previous health aide, who generally caved.
Two weeks post-release, while we had been assured of my mother’s recovery, it felt far from certain. On afternoon visits, I would often find my mother seated at the table, staring fixedly into the middle distance, impervious to the scintillating view out of her casement windows. Laconic and suffering from avolition, my mother exhibited the all-too-familiar symptoms of her previous relapse.
The loss of affect and the compromised hearing were much the same. Whenever I broke into her reverie she would respond with a loud distracted, “Hmmm?”
The end of the line
In the dream, I am standing at the edge of an elevated platform of the historic Chatham, New Jersey station waiting for a train. I have no recollection of being here before. The perimeter of this rail line is leafy and green, bordered by mature mulberry trees. The earth is pungent and rich, perfumed with the smells of late spring or early summer.
I patiently wait for the train, peering down the tracks for the slow appearance of the locomotive engine, just as I once did in high school waiting for the Erie Lackawanna. As I stand waiting anxiously for a train which never appears, studying the rusting ties that lie across slate-colored gravel, slowly the station goes out of existence, bit by bit like the dissolution of the soda-drink stand in a Philip K. Dick novel. The gravel. Rusting metal ties. The dividing metal fence. Green storybook red-tiled roof station house. I am confounded, left alone to wait on a sliver of disappearing sidewalk for no reason I can think of.
A daily spoonful
Over the next few weeks, my mother’s complaints about daily life only intensified. She couldn’t go to CVS with Kate anymore because her aide was a “kleptomaniac.” She insisted after a pedicure that she could no longer walk across her carpet because her feet “had lost
their grip.” Teaching an intensive workshop at SCI-Arc that summer, I was not able to ensure that she was eating during the day.
“The medication doesn’t work without food,” I reminded my mother whenever we spoke on the phone. She was still insisting most foods were too hard. Bread crusts, crackers, and fruit bars were all too challenging; she consumed only the most judicious amounts of yogurt per day. A visit to the dentist did nothing to alter her view. Whenever I asked if she had taken her Ensure, she answered in the affirmative, but the desultory quality of her voice told me otherwise.
I was beginning to grow weary of a situation I could not change. Eventually my promises of stopping by went unfulfilled. Finally, I decided that I would only stop by when I could be joined by my brother and niece. Determined to shield her granddaughter from her illness, this was when my mother was on her best behavior.
Strawberries and cream
One Saturday afternoon in May, I met my brother and niece at my mother’s apartment for lunch. Shortly after my brother finished helping my mother with her bills, we took the elevator down to the lobby for our routine weekly walk. Behind her apartment complex we traversed the sandy pathway circling the large picturesque grounds with its majestic date palms, flowering purple jacarandas, stunning drought resistant plants, and radiant bougainvillea. Compromised and weak, our mother in a white sun hat and matching cropped white pants lagged somewhat behind. We were perhaps not as patient with our mother as we should have been.
“Come on, Joy,” I kept calling back to her. She seemed out of breath and a little flustered by the end of our walk.
Afterward, we piled into my brother’s car and headed for our favorite inexpensive Chinese restaurant located on Beverly Boulevard. We ordered our dishes of deep-fried shrimp in a delicious, incongruous sauce of strawberries and cream, as well as a plate of ginger chicken, and green beans. During this outing my brother succeeded in getting my mother to eat a healthy portion of her meal.
A Room with a Darker View Page 17