*As promised in our very first post, the following story is provided by a guest blogger, edited by us. All names have been changed for privacy. Behind The Wall stands by the authenticity of this story.
Of the many parents we interviewed for our story collection, almost every parent interviewed had a similar story pertaining to ER care and treatment. This is one of many.
My son, Scott, who is in his mid-twenties, was experiencing his second acute, hypo-manic episode in seven months. He was terrified and highly agitated, believing he was going to die from lithium poisoning and insisted on having his blood tested. Right now. About a month before this night he had somehow been convinced by strangers, in person and on the internet, who he referred to as “cult members trying to kill people,” that drinking one’s urine and a gallon of distilled water each day was good for one’s health. While he decided on his own to lower some medications thinking his urine would boost his mental and physical health, he became convinced he had been lethally poisoned by the lithium re-circulating through in his body. He claimed the lithium overdose was causing headaches, and lightheadedness, though my husband and I had noticed he was forgetting to eat for long stretches and we were more alarmed by his news about drinking urine than the idea of lithium toxicity, but relieved he now admitted it had been a bad idea.
Scott and I arrived at a well-respected university hospital and were told to sit in the ER lock-down where emergency psychiatric patients are held. It amounts to two grubby, prison-like bedrooms and a small common area, which is a rather generous description. I was told to leave my purse and cell phone outside the room, which meant I couldn’t contact my husband, who was out of town, or family members taking care of our pets to let them know what was happening to us. Scott had been escorted from our driveway in an ambulance, a scene that lends itself to justified concern. Like prisoners, we were locked in the room. To use the restroom, we had to ask permission and someone unlocked the door to let us out. With nothing to read or watch, I couldn’t ignore the shabbiness of the place, the uncomfortable fiberglass chairs and the kicked-in scuffed walls; I kept wishing for a can of paint to have at least something constructive to do with the empty time before me.
I expected we’d have a wait before someone would appear and help my son. In the ER triage, though he believed he was going to die, I understood he was not a top priority.
An hour and thirty minutes passed with nary a nurse or doctor in sight. During this time Scott was quiet and we exchanged a few words. But as more time passed, he became agitated again and ranted that he was going to die from lithium toxicity. He was sure of it and also that no one would help him. I assured him he was not going to die and motioned through the glass window to the nurses and doctors. His agitation increased, he writhed, paced, and yelled, “I’m going to die.” His 6’2” body would not stay still because stillness, he said, would cause him to die. His eyes were wild and he was frightened. And there was nothing I could do for him.
A non- psychiatric resident finally appeared and asked me if my son had anxiety. Did he really ask me that? Could he see what was happening? He asked if Scott had ever been manic before and if he takes Ativan, an addictive benzodiazepine, used to treat anxiety.
“He’s an addict-alcoholic,” I said. “He can’t take anything in that category. Nothing. He cannot take that shit! He’s been sober for a year and we don’t need to stir up his brain now.”
I was very clear in reminding, or more likely teaching that intern that any benzodiazepine would be devastating to Scott, who is dually diagnosed with bipolar disorder and addictions. Benzodiazepines light up the addictive part of his brain, essentially accentuating the thirst an addict fights daily. A thirst that eventually quiets somewhat over time though never goes away, but comes back with a roaring vengeance with even a drop, like blood to a shark. That was the last thing he needed, especially coming so close— less than a week to be precise—to maintaining sobriety for a full year, a remarkable accomplishment for any addict.
The resident said Scott’s lithium levels would be checked, though did not offer a time frame, then offered a perfunctory nod and left. Scott resumed his crying, yelling, and pacing because he was ‘going to die.’ A nurse arrived to take his blood while I somehow held him still— all 165 pounds of him. When would we get the lab results? No one seemed to know.
I wondered how many hours I have spent in ERs and hospitals, not for my son’s mental illness, but for my own injuries or for either of my two sons. In fact, Scott’s brother was rushed to the ER on numerous occasions, more than I can count, from infancy through adulthood for a rare condition that requires emergency intervention whenever he contracts an illness in which he loses fluids (a flu, for example). There were three different broken bone incidences, torn ligaments and stitches. How kindly the nurses were, making sure my sons were not afraid, outlining procedures in advance, looking us in the eyes as they told us what would come next. Doctors took time to listen to the important parameters for treating my son whose rare condition requires added precautions. These past experiences were in stark contrast to how we were treated on this night, now a mentally ill patient and his exhausted mother.
By hour three, my son continued to occasionally rant and pace. I was trying to keep him still and tried logic… But logic with a hypo manic person, well, that’s another story…
An older woman, who announced herself as the attending physician, cracked the door of the lock-down. Her voice was angry and sharp. She said, “We’re going to give him Ativan and Haldol.” I repeated myself and told her Scott is an addict-alcoholic and can’t take the Ativan. She barked, “This has nothing to do with addictions! I’m the doctor. If he doesn’t get Ativan he will hurt himself.”
Before I knew it, four residents, a policeman, and a nurse were in the room to watch the crazy man pace and scream. One resident laughed. I felt humiliated and sad for my son, a young man who had once been an academic and athletic superstar, who had received a merit scholarship to college, and was now being laughed at by an uncompassionate intern who clearly knew nothing about mental illness.
Before I could refuse the Ativan, or even say anything to them, a resident gave him a shot of Haldol and Ativan. They were gone as soon as they left. My son was soon asleep. I was angry and deflated. Tears stung my eyes.
Four more hours elapsed during which no one spoke to or checked on us. During that time, a young couple, an exhausted woman and deeply depressed man, entered the small common area and sat in the stained chairs, never looking our way.
A nurse came into the lock-down with absolutely no explanation, to whisk us away to the “Behavior Health” area. Scott was drowsy and clearly incapable of fight or escape, and yet there was a police escort. The Behavior Health area was also locked down and my purse was taken away. My son and I went into a dark room and were told to keep the lights out. The air conditioner on this hot July was cranked to what felt like 60 degrees. As my son slept, I wiped crumbs off the chair, wrapped myself in a thin blanket and tried to get comfortable in the fiberglass chair.
We had checked in at 8:30pm and it was now 2:00am. I never thought we would wait so long to get some attention. I tried to rest, but all night I’d been in a state of anticipation, thinking that surely we would see a doctor soon and be able to check out. I had been told he would be seen “tonight” but tonight had passed. At 3:30am a resident came into the room just to apologize for keeping us waiting, telling me there were four people ahead of me and two were adolescents. “By law I have to see minors first.” And then he left.
I felt powerless and helpless. A nurse came by and asked me to close the door. “I can’t sit in total darkness,” I said, trying not to cry. The nurse suggested I wait in the main ER waiting area. I refused because I had seen too much coughing and blood there that night. More importantly I needed to be available to Scott, to advocate for him, though already that night I saw that the staff undervalued my experience and knowledge about his treatment history. I ignored the nurse and propped the door open to allow light in from the hallway. Surely, I kept telling myself, a doctor would soon be there and I didn’t want to be asleep when he evaluated my son.
Over the course of the next three hours, Scott awoke and told me his hypomania had dissipated and that he felt good and was ready to check out. I knew he was good to go home, he was calm and sounded like himself, even if groggy from the Haldol-induced sleep that allowed him to get the rest he desperately needed. The Haldol alone would have stopped the acute hypomania. I was relieved to see him calm, but underneath, I was furious the doctor had ordered an Ativan shot—potentially causing more damage for an addictive brain than had we never come to the ER.
Finally, at 6:00am, well over nine hours after we checked in, yet another resident appeared. But the resident was unable to conduct an evaluation because Scott could not be roused from his deep sleep. The resident went by my report though I’d had no sleep and hardly any food the day before, never a good combination for me even under the best of conditions. I had trouble remembering names of medications and what exactly brought us into the ER. I slurred words. All I could think of was that I was exhausted, cold, and I wanted out of that jail. Please, please let me out.
Scott was cleared to check out and we were told it would be another two hours before the paperwork was done. This is when I finally and successfully asserted myself. I demanded the paperwork be completed within the next hour. The resident listened and we were out within forty-five minutes. We walked out and into a sunny Saturday.
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Marie was making the two-hour drive to visit her aging father when her husband, Greg, calls to tell her their son, who is dually diagnosed with bipolar disorder and addictions, has left the house with a stuffed backpack. The scene is frighteningly similar to an incident that occurred a year prior when Marie’s son left home, went off medication, became homeless and experienced a near fatal overdose. And yet, that morning, only hours before, her son had been in a bright mood talking about starting a new project. Greg also reported that their son had thrown away personal effects including family portraits that had been in his room. He was angry and arguing with his father before he left and some of his thinking was illogical. In that moment, he exhibited signs of suicidal behavior, for him most probably by drug overdose. Marie and her husband had been at this juncture before.
Parents of adult children who live with persistent mental illness say that when things are going smoothly and without incident, “You are always waiting for the other shoe to drop.” Parent / advocates maintain a mental state poised for an abrupt change in plans or even crisis. When asked, “How are you doing?” They say things like, “We are good today,” which implies change will happen, and not always for the better.
Our Behind The Wall contributors have become accustomed to this hyper-vigilant state of being. Jennifer, who was diagnosed with bipolar and borderline personality disorder, had been working and living on her own successfully when her mother, Esme, received a call that she had been rushed to the hospital after a near fatal overdose. Maika’s son, Riley, was earning A’s and positive feedback from his instructor of a difficult community college pre-law class. Maika was optimistic and felt her son was in recovery when Riley stopped taking his medication, a decision Maika was against and that lead to a long downward spiral and a string of harrowing events: a psychotic break, an encounter with the law and a six-month jail term where he continued to suffer from psychosis and was badly mistreated.
Parenting an adult child who lives with mental illness feels like living on an earthquake fault line. Just when a parent feels their child has found footing with a good formula for treatment, a cocktail of meds that addresses anxiety and depression for example, and a routine that works, yoga classes or a even a part- or full-time job, inevitably something changes.
The unpredictable nature of mental illness manifests in small and significant ways. A person living with mental illness works harder than others to function in daily life and his parent/caregiver is constantly monitoring: watching for changes in mood, voice, or thought. Some days, the mental illness gets the upper hand for a day, or maybe a week, after which a person is capable of resuming a regular life. Other times, the ill person makes a bad choice—like going off medication —that causes abrupt change, and requires caregiver intervention to prevent further harm.
Parenting a child with a persistent mental illness requires flexibility. One must sway to new developments. From planning a simple vacation to establishing living arrangements, there must always be an “out-clause.” Parents soon learn that to be available to help their child, they must set-up their own life—their jobs and living situations—to handle change and crisis. They choose flexible jobs or arrange for backup help in advance. Dan, whose daughter lives with schizophrenia, is fortunate to be able to work from home. There were times his daughter could not be left alone at home alone. He still needs to be available for her on short notice to pick her up from her university and take her to the hospital or bring her home for a needed rest when life becomes stressful.
Maintaining constant vigilance of a person who lives with mental illness is necessary because not doing so could mean missing a sign marking the beginning of a life or death scenario. But this kind of constant vigilance can be psychologically and physically depleting. And despite their critical role in supporting their mentally ill loved one, parent/caregivers often put their own well-being last.
Living and caring for a mentally ill person requires a unique flexibility, a willingness to accept the day-to-day, sometimes hour-to-hour changes. Marie’s son was hopeful in the morning and angry by the afternoon, potentially on track toward crisis. But he remained sober, found someone to talk to, and came home with a positive attitude. Crisis averted. What a difference a day makes.
Or, When It’s Good To Break The Rules.
“In other cultures, children live with their parents into adulthood. I don’t understand this push to get them out of the house. Families should be together.”
This is what Catherine said only months after her son, Philip, had died. He had been diagnosed with a serious mental illness. He had gone off his medication, became psychotic, and had lain on a railroad track.
I can still feel the pain in her voice as my sister and I sat in the darkening room listening to her story, surrounded by pictures of him that had been on display since his funeral.
His father and others who didn’t fully understand his illness had, against her wishes, encouraged Philip to move away from her and live in a group house. They said he needed to become more independent. Catherine knew Philip wasn’t capable of many things, including living on his own. From his first break, Catherine had been Philip’s primary advocate and caregiver, made every medical decision, health insurance arrangement, and compiled mental notes about his changing behaviors for his doctors. While living with her, Philip was capable of few things but she encouraged him to attend therapies and workshops that seemed helpful for him and had him on a schedule of things to do each day. That, she felt, was important to his healing. She even adopted two kittens to keep him company during the day when she had to be away for work. But she had little support in caring for him.
At the time of Philip’s death, his housemates were away for the holidays, he wasn’t being monitored and he was very, very ill.
I think about Catherine often. She is a kind and giving person who did everything she could for her son. But she was often doing it alone, and now grieves alone. I think about Catherine when I read or hear about a parent who struggles alone, without support or understanding from a spouse or other family members. Because people living with mental illness do much better when they are well supported by loved ones. The single parents we interviewed told us they had to find ways to cope, and they are exhausted. Often their new partners (who are not the biological parents of their children) have trouble understanding what to do when a person is in a mental health crisis and that scene can get ugly. Parents who are supported by their spouse expressed that they couldn’t fathom how a single parent could care for a child with a mental illness without the other parent stepping in. Because a crisis is unpredictable, all-encompassing and sometimes downright frightening.
Support doesn’t come just from immediate family. It’s a community at large that can make a difference for a person who lives with mental illness. This is why the movement lead by BringChange2Mind and other groups to talk about mental illness is so important.
In her article, Beyond the Brain from last summer’s The Wilson Quarterly, (http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0) Tanya Marie Luhrmann argues that strong community can be the difference between functioning and not for a person living with mental illness. Given that higher stress can trigger mental illness for individuals who have a proclivity for it, she cites research on immigrants and suggests a correlation between weak community for the new arrivals and higher rates of schizophrenia. Luhrmann makes a good case for the efficacy of treatment when family and a tight-knit community surround an ill person.
What Luhrmann talks about regarding community and family and advocating for a loved one with mental illness is what we learned from the parents we interviewed. Successful outcomes seemed more likely for those who were supported by advocates who are supported also. There are times a family must send a loved one away to a qualified treatment facility—for addictions or other mental health issues—but here too, the best facilities create an atmosphere of belonging and inclusion in some manner. It should make sense to anyone that the healing needed by a person in crisis can more likely begin by being embraced rather than rejected into the margins.
Catherine’s dismay that Western society boots a young adult out the door was justified. In her gut she knew her son needed his loved ones—his mother, sometimes his sibling and their circle of friends— around him because he was very ill. Dan and Rebecca also knew their adult daughter needed to lounge around their house for the year after she was released from hospital treatment for depression. Sometimes, for the love of family, one has to break society’s rules. Or make the rules bend toward compassion.
*Blogger’s note: After publishing this post, we heard from one of our contributors who clarified that it is not always in the best interest of the family for a mentally ill person to live at home. When a person with mental illness is unstable or has erratic behaviors, it creates a chaotic and unproductive environment for the family where often the parents devote all their energy to the ill person and neglect other familial relationships. Depending on the phase of recovery, a person with mental illness may do best within a structured treatment facility or a group residence.
Our intended message for this post was that our parent/ contributors have found it is best to make decisions regarding living arrangements and treatments that are in the best interest of the ill person, not what society dictates is the way adults should live. The well-being of loved ones is critical as these individuals are usually the best support a mentally ill person has in his corner.
Thank you to our reader for prompting a clarification. We always welcome comments.