Monday, July 18, 2016

A Deep Abyss (chapter 4)

Tuesday, August 10th  2010 - Noon 

My sister K. is with us as we pull into the parking lot of NY Presbyterian. It’s visiting hours. We have had no communication with the hospital since we were there last night to find Scott out cold. Parking proves challenging and because I am anxious to go inside to see Scott, my husband drops me off by the door while he goes with K to find a parking spot. Arriving breathlessly on the ward, I see that Scott’s room is empty. The hall is once again filled with men wandering around and there is a cluster of men in front of the nurse’s window, waiting to check out personal items for use during their free time. I don’t notice any other visitors but I am very focused on finding Scott. I see the nice nurse we spoke with last night. 

Where is Scott, I ask her. She is looking very harried and I am not surprised given the number of patients milling around. She gives me a sad look. He is acting a lot more psychotic today she tells me. My heart feels like it stops momentarily, and I get what will become a familiar sensation over the course of the next few weeks; I feel as if something cold and icy is dumped into my veins. But I remain outwardly calm – or at least I don’t collapse on the floor in fear or start screaming - and ask her what he has been doing. I don’t recall exactly what she said, but I think it had to do with punching walls and shouting threats, probably trying to leave again. He refused to take his medication. He may have been acting out sexually. She tells me he is in the “quiet room”, but I can see him if I want.

What follows next is what I have come to think of as my moment on the edge of the abyss. I feel that I looked down into a deep darkness and saw only pain. I walked the short distance down the hall to a room with a man standing guard by the door. The door is open and there is a blue plastic mat on the floor. The walls are covered with similar material, with padding under the plastic. There is nothing else in the room. Scott sat on the floor, on the mat, his back against the wall with his legs straight out in front of him. He did not hear me walk in. His tongue is swollen and sticking straight out of his mouth. He has a steeliness to him, which I can not tell if it is resolve or anger. He leans over and spit saliva on the floor, still without noticing me. 

I put down my purse and slip out of my black clogs preparing to sit on the floor with him. 

“Hi sweetheart”, I say to him. 

At the sound of my voice, he turns to look up me with a look of complete despair and suddenly collapses into sobbing. The sobs wrack his entire body and he lies down on his side. It is a terrible mixture of the mania, fear at having been left there, relief at seeing me, and medication. I lay down on the floor with him and hold him while he sobs. When his sobbing begins to subside I speak to him softy and gently, as one would speak to a small child. I tell him that he should take his medication so we can get out of this room. Then I say conversationally that I don’t really like this room and we should leave it. He nods his agreement. He doesn’t like this room. He is obviously addled, and is having a hard time speaking because of his tongue sticking out of his mouth, but he repeats after me: take medication, stay out of room. I smile encouragingly at him and stand up, giving him my hand to help him stand.

All this time we have been observed, first by the guard standing at the door, presumably through the camera mounted on the ceiling, and eventually by the nurse who comes over after I have cajoled Scott into agreeing to take his medication. The medication is produced in a small paper cup, along with some water. He mechanically swallows the pills and I say something inane about that not being so hard. 

Inside, my heart is shattering over and over and over again. An abyss has opened up. Peering over the edge into the darkness of the abyss I see a future of rooms with padded walls. I see a future with my beautiful son who is addled and needs to be spoken to like a child – jollied into doing what is required by the institution. 

At some point, my husband and sister have arrived. I am not sure exactly when. It must have been shortly after Scott took his pills and they agreed to let him leave the quiet room. Once he is back in his room, the blackness of the abyss recedes and a burning anger rushes in to take its place. I want to know what they have given him to make his tongue swell like that. I want to know what they did to try to keep him calm when he was upset at finding himself alone and locked on a ward with a bunch of older, clearly troubled men. Most look like they must be here on Medicaid and many look like they may have been discharged from a prison (which we later discovered was true).  I ask to speak with Scott’s doctor. We are told that we will get an appointment to meet with her before the end of the week. What?! 

Now, the squeaky wheel philosophy kicks in big time, and the three of us make a fuss, taking turns who makes it and whom we make it to. I am a little fuzzy on the details but as I recall it was not too long before we got a visibly angry doctor to sit down with us in a small room on the ward that has a door and some chairs. There was a social worker involved too, clearly she must have been assigned to our case, and she must have been the person we were put in touch with when we started asking to see his doctor. When we find out that the ‘audience’ is going to happen and are directed to the room, I ask if we can wait one minute while I run down the hall to get my sister who traveled here to provide help and support. This request is also met with disapproval but I leave anyway. I dash to get her, and find her in Scott’s room. He is sleeping again, laying on the twin bed and he has his head on her lap. She is stroking his hair gently and I see the tears in her eyes. I tell her of the meeting and she slips out from under Scott.

The doctor is female and Asian. My memory of her is that she was in her thirties and she was well put together; slim, well-dressed under her white jacket, polished. She is not pleased that we put our foot down about getting a chance to speak with her. That’s ok, because we are pretty angry too. K is to be the voice of reason during the meeting. She has a yellow pad to take notes, and manages to keep the anger out of her voice, even though I know she is as upset as we are. I ask about the medication and the allergic reaction. The doctor states that it is a drug that is commonly used, with very few side effects. She also says “they are very good at imitating others,” suggesting that he could faking his swollen tongue. Her antipathy for the patients is palpable. I am shocked at her suggestion, as if Scott could really manage to fake a swollen tongue, but everything that has happened since I walked through the door of the ward today has left me feeling like I am Alice tumbling in free fall through the looking glass and down the rabbit hole. Almost reluctantly, the doctor agrees to administer the antidote to combat the allergic reaction to the drug - as if it were not actually necessary. When we push on wanting to understand how things could have deteriorated so badly in such a short amount of time, she pushes back detailing his psychotic behavior. This is cruel, because we are his parents and the information is painful. The way she tells us of these things is to throw it in our faces. 

Scott shows up at the door and peers in through the window portion of the door. He looks anxious that we are having this big pow-wow with the doctor and social worker but have not included him. I get up to let him in, and the doctor is alarmed. She clearly does not feel safe with the patients. She requires a guard to be in the room with us, if Scott is to be there. Of course he needs to be there if he wants to be, we point out. The room is small and is crowded: the three of us, Scott, the doctor, the social worker, and now the guard. The conversation is not going well. We want to get him off that ward and out of that hospital. We want a diagnosis. We want to understand how they could have lost control of the situation so quickly as to need to put him in a quiet room.  Scott is confused and when he starts to mutter and mumble that “it could not have been all due to coincidences”, the doctor gets up and says, “we are done here” as she walks out of the room.

I recall saying to my sister as we were walking down the hallway after the meeting: “let’s get him OUT of HERE”. The anger is a respite, because it feels more comfortable than the terror.  Back in his room again, Scott is lying on his bed and I am rubbing his back to keep him calm. Or maybe it is to keep me calm. The antidote is working and the swelling in his tongue is almost all gone. This allows him normal mouth movements, including speech and swallowing.  He is very sleepy though and has drifted off.

While I sit with Scott, my sister and husband go off to make phone calls and discover our options. Four Winds Hospital might be an option, but they do not have a bed at the moment. They might have one tomorrow, and he would have to be transported by ambulance. They have another ward in NY Presbyterian, called The Haven, and they have a bed. This sounds promising, and K digs deeper to see if this option can happen this evening. 

We learn that The Haven is for men and women of all ages. They currently have a few patients (actually I think they refer to them as “clients”) close to Scott in age. It is not very crowded and they have a terrific ratio of staff to clients. Of course, there is a catch. There is an “amenity fee” of $700 a day, which is not covered by insurance. Thus between our co-payment for the daily fee plus the amenity fee, we would be out of pocket around $1,000 a day. They told us to expect a  minimum hospitalization of at least 2 weeks. We don’t have $14,000 sitting around. I point this out to my husband. He replies softly in a strangled voice that he would sell his arm or his kidney if it would help Scott. I quietly agree. 

At some point, through the magic of K pushing on our social worker and making phone calls, it is officially decided that Scott will be transferred to the Haven. A mental health worker shows up at the door of his room with a wheelchair. I am worried about how this transfer will take place. To say that Scott  has been behaving erratically would be an understatement. What if he gets up and makes a run for it while we walk between the buildings. I express this concern to the attendant, and he replies that “if he has to put his hands on Scott than he has lost the battle”. I try to put this in context of finding Scott in the “quiet room”. I also wonder what this has to do with him jumping up and running away, but it turns out that the walk over to The Haven takes place inside, through a series of connected hallways and elevators. Scott sits quietly in the wheelchair, his head lolling forward onto his chest. 

As they open the door for us to The Haven, a completely different energy greets us. Instead of men milling about in a mildly suppressed chaos with an institutional feel and a taste of despair, we walk onto a floor that is carpeted and quiet. There are sofas in the hallway, and the doors open onto to large rooms that have every appearance of belonging in a nice hotel rather than a psychiatric ward. Fluffy towels are stacked on the desk, waiting for the new occupant. His spacious room has a television, beautiful high ceilings, a private bath, three large curtained windows looking out onto the grounds, and upholstered chairs for visitors. 

Scott had completely collapsed into sobbing in the wheelchair as we waited for the paperwork and the nurse on duty at The Haven. I recall leaning over, wrapping him my arms around him and just holding him, not bothering to say goodbye to the attendant who had wheeled him over from the men’s ward. I am not sure why I was angry with him but maybe I was just angry with everyone associated with the previous ward. 

To our beleaguered psyches, that have withstood punch after punch since we lost track of Scott after he left for West Point on Sunday morning, The Haven feels like Heaven. Because it is late and he has missed dinner, they bring him the ‘special of the day’ on a tray. They apologize that he was not able to select his meal from the menu, but assure us that he will be able to for tomorrow’s meals. A menu? We practically chuckle in glee. The meal includes dessert, a Boston cream pie, and as we all sample it we agree that it is delicious. We have tucked Scott into bed - he is completely wiped out, but it feels safe and good to have him here. I am so relieved to have him out of that other ward and away from that doctor, whom we have taken to referring to as ‘the witch’, I feel almost giddy. 

Scott is dozing and I stay with him while K and my husband C. sit out on the sofas in the hallway, catching the duty nurse up on what has transpired so far. At some point I go over to them to ask about medication and inquire about “quiet” rooms. I tell the nurse with significant urgency that if Scott wont take his medication to just call me. I am practically begging. I think I am actually on my knees while talking to her since she is in a chair and C and K are in the sofa next to her. I assure her he will take them if I am there and I really want to avoid having him confined to the quiet room again. I find out that The Haven does not have a quiet room, that they don’t have to resort to such measures. She seems very competent and gives us a feeling of confidence. She calmly explains to me that she wants Scott to take his medication from whichever nurse is on duty, but she promises she will call me if there is a problem.

The rest of the visiting hours are passed quietly - Scott resting in bed, the three of us sitting in his room, talking softly. The Haven has an open dining area with snacks available at all times as well as drinks in a fridge and I believe we snacked and drank, since I don’t think any of us had actually eaten anything all day. Scott appears to be sleeping, but he comments occasionally on our chatter, and soon is awake enough to be sitting up. When we gather up our things to leave and I kiss his forehead goodnight, he is sitting comfortably in bed watching TV. A mental health worker is seated in a chair outside his room and, as per protocol, Scott will be watched 24 hours a day until they are sure he is safe. But the man seems kind and his presence is reassuring rather than intrusive. We exchange quiet pleasantries with him. As we leave for the night, it feels like Scott is in good hands and a safe place.

(continue reading) 

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