Leaving The Haven (chapter 9)

August 22 - 26th, 2010

The last few days pass for the most part uneventfully. Chuck and I walk around holding our breath. We are hoping to just get through the days until check-out without any major incident. 

We did have a setback when my husband’s sister who had not spoken to us or to Scott previously, called him at the hospital and during the call urged him to return to college. Not having any of the context, she felt it was important for him not to impact his college career and told him he should get out of the hospital and get back to Middlebury as soon as possible before he messed up his chances there. 

Scott of course agreed with her.

It felt devastating at the time to have him re-examine his decision and put everything back in question, but as I recall it did not last too long and he was back on track by the next day. Sometimes people who mean very well can cause chaos if they are not in the loop.

There isn’t much else to share of this first episode. As it was August our social worker said goodbye to us a couple of days before discharge. She was leaving on vacation and a different social worker would be filling in on our case. (Unwisely) we didn’t think much of it at the time since we were like the proverbial horse that sees the barn in the distance. We were very focused on getting out, moving on, putting this behind us. This again spoke to our lack of understanding and experience with Bipolar Type 1, thinking that we were in the "one and done" category with such a severe illness.

The day finally came where Scott was cleared to the level where he was allowed to go outside on the grounds of the hospital under the supervision of his parents. Hallelujah! We had waited so long for the tennis match that Scott wanted with his dad, on the tennis courts that he could see from his windows. It was the day before discharge, so presumably by the time you are considered well enough to do that, you are pretty much well enough to leave the hospital. We of course were naive enough to think this meant he was actually well. It would take at least another episode or so for us to understand that discharge from the hospital only means ‘manageable symptoms”, not symptom-free, and certainly not ‘well’.

But to us it felt like such a milestone. We had hoped and prayed (in our own way, to departed family members) for this day to come. Scott who is a normally a fabulous tennis player played poorly since he was new to Zyprexa and his legs felt as if they were “encased with cement boots”. This aggravated him, but all in all it was nice to be outside. After tennis he wanted to throw the football around, and I recall both Chuck and I following him around on the grounds, and my thinking that we were like parent geese, clucking and following our little gosling around. Scott was just shy of 19 years old.

We made two major mistakes with this first discharge. Both of them very significant. The first was to leave the hospital and not have a referral to a psychiatrist in place, and the second was to underestimate the importance of staying well for the next 6 months. The brain is fragile after an episode - think of it as bruised - and it needs healthy living with no stress for at least 6 months. This is significant because for every episode that occurs, the likelihood of having another one increases. Once you have had 4 episodes, you are pretty much guaranteed that you will suffer from them the rest of your life (if not controlled through medication and symptom management).

In discussing possible options upon discharge, our social worker had mentioned a working farm for kids recovering from substance abuse and mental health issues. It was live-away for the entire semester. I had  a single overwhelming urge: get him home, keep him close, keep him safe. So living away for a semester was out of the question for me. But with hindsight I wonder if it would have been the better choice for him. He needed someplace to heal, someplace to come to terms with his illness, someplace where he would not have access to bad influences and illegal drugs.

Instead we compromised and agreed to a day program, a few days a week, run by Columbia University. As it turns out, they wont take you unless a psychiatrist refers you, so we had to scramble in the days that followed Scott’s discharge to find a doctor who would see him without a long lead time. 

The folks who ran the Columbia program felt that the fact that NY Presbyterian Hospital had discharged us without a doctor’s appointment already lined up, was bordering on ‘malpractice’ – their word, not mine.

 Ultimately the day program did not work out. Scott went a couple of times and said he could not relate to any of the other kids there, spent the whole time just waiting for it to be time to leave, and saw it as a complete waste of time. Given that viewpoint, I agreed with him.We weren't very happy with the program anyway, as it seemed they kept calling me in a complete lather over one thing or another. Since they managed they program, you would think they would be able to stay calm about issues. One day the administrator called me in a total state, telling me that "Scott was glorifying mania in group therapy!" Yes, I replied, bipolar patients do that, mania is a perfect state in their mind - but shouldn't she have already known that.

And so we allowed him to drop out. And we wished with all our might that he might be one of those cases where he has a single episode that is never repeated. We had read about some examples where people Scott’s age have a manic break, are hospitalized, and never have another episode. But these are most likely cases of drug-induced psychosis that are incorrectly diagnosed as Bipolar.

Of course just wishing for something doesn’t make it happen. Scott was in full-blown denial about his bipolar, and apparently while we may not have been calling denial, we were certainly in some sort of optimistic wishful state. All that seemed to matter at the moment was we had our Scott back. We were blind to the things that experience would eventually teach us. About his continued irritability and what it meant, and how unwell he still was upon discharge.  Nor did we know at the time about the impact that smoking marijuana and drinking would have on his susceptibility to another episode. Of course we didn't allow it, but nor did we place him into a sober living house where all of his social interactions are monitored. Sometimes only time and living through the experience of something can teach you lessons you would rather not to have to learn. 

SECTION II - THE LONGEST SUMMER (coming soon)

The Haven (chapter 6)

August 12^th – August 20^th  , 2010

Scott’s windows faced the tennis courts. From the moment he got there, he was completely fixated on going outside and playing tennis with his father.

Of course he couldn't go outside because he was not yet cleared for it. The Haven has a system of levels and based on this level patients are accorded certain privileges. For the first few days - I don’t remember exactly how many - Scott is watched 24 hours a day. We can imagine that this corresponds to level 0. Gradually, as they get “promoted” to the next level, they are allowed to do things such as go outside in a group with supervision, and I think by the time they get to level 5, they can go outside with family members and no medical staff required.

His fixations are hard to deal with since they are irrationally important in his mind, and lack of resolution leads to frustration, which quickly escalates to a violent mood. He never struck us, nor anybody else in the hospital, but he would huff and puff,  get in your face and says things like “do you know how much I can hurt you”.  He is big and can be intimidating, even when you know what a gentle warm person he is outside of his manic episodes. 

Thus his fixations became very important to us. We longed for him to get cleared to go outside.

Every day there is tremendous angst, for Chuck, my sisters and for me, around what level Scott would be at and when he might get cleared to the next level. The hardest times are the weekends. On weekends the patients need to just sit tight. We often say that they are just "parked" on weekends. Their regular doctor is not there and no level changes take place.

These two weeks are a real mixed bag and a complete emotional roller-coaster. By now my older sister J. has arrived from California and for a short while Chuck and I benefit from having both my sisters with us to bolster us and help us keep our chins above water.  

Much of the specific details of those days escapes me now.  I believe there are the memories that we can’t delete no matter how hard we try and there are those that the mind mercifully dulls slowly with the passage of time. As I recall it was a beautiful August. The sun was warm and the breeze gentle. In the mornings, we would sit outside on the back patio, under a blue sky, drinking coffee and waiting for it to be time for visiting hours. I couldn’t drink caffeine because of my anxiety, but I guess I drank decaf or had tea. 

It was such a comfort to have my sisters with us. They introduced some structure and normalcy for Chuck and me. And maybe they were a distraction. Perhaps I did not allow myself to fall apart quite so completely as I would have otherwise because they were there. Perhaps Chuck and I did not resort to tearing each other apart in our pain because they were there. Either way, we were a team. All of us together. A small group, where nobody managed to keep it together all the time, but usually at least one person was functional and able to provide support to the others. 

I am not sure what we did during those mornings, but I expect it involved research. On the drugs Scott was being prescribed. On bipolar. We started to learn about the different types of bipolar, and what we might expect for Scott going forward. We were such rookies that it was news to us that there are two types of bipolar: type 1 and type 2. 

We have since learned that type 1 leans towards the manic side, always involves hospitalization, and usually comes with a psychotic break. But at the time, when we were so new to bipolar, we scoured the pamphlets from the hospital and the internet, trying to figure out which type he had, and in the absence of confirmation, which type we wished he had. At times we researched what questions to ask, and at times, I at least, practiced escapism, retreating to my garden to pull weeds, or sweep the front steps. Anything to support the illusion that I had some control over some aspects of my life. But all these activities were just preludes to the main event of the day, which was the drive down to the hospital for the start of visiting hours.

Life on the psychiatric ward has a rhythm. A very slow one. Since the group of ‘clients’ was quite small when Scott first arrived, they became a fairly close knit group – or at least as close as one might expect given that each was dealing with his/her own psychiatric issues, and they were thrown into daily close proximity but knew in their hearts they would never see each other again once they left that floor. It’s probably not dissimilar from the bonds between people in a lifeboat.

Chuck, my sisters and I are there every day from the start of visiting hours until the end. The Haven has generous visiting hours, so we are there something like 5 or 6 hours every day. On weekends it is more like 8 hours. We know all the mental health workers by first name, even though they are on rotating schedules, we know the patients, and we even know the patients’ families. Unlike the other ward we had seen at the same hospital, the patients here have their families visit with great regularity.

The familiarity of the daily pattern is somewhat comforting. It is particularly comforting to the patients, but even to the family members – whose nerves are worn down and who are exhausted from their daily trek to the psychiatric hospital carrying the stress of having a loved one here. 

There are often daily traumas, sometimes with your loved one, sometimes with somebody else on the floor, but each of us knows what it feels like, whether it is our turn to be sitting in the hallway crying or somebody else’s turn. We avert our eyes if we don’t know the family member well enough to offer comfort, but sometimes there is no comfort to give. Only the passage of time can bring slow healing to the pain that happens here. 

Other moments are surprisingly, and very fleetingly, happy. I recall a raucous game of Pictionary in the lounge, with one of the mental health workers leading the game, involving many of the patients and family members. There are also rare peaceful times, watching a movie in the lounge on the big-screen TV after dinner, a sleepy medicated Scott laying on the sofa with his head on my lap. Other patients close to Scott’s age whose family members had already started the long drive home, having pulled up chairs, cracking jokes or putting up a running commentary on the movie. Good days and bad days.

We optimistically hope for a unidirectional recovery. My grounding belief – the one that allows me to get out of bed every day, get dressed, put food in my mouth - is that every day Scott will get just a little bit better. And he does have good days but he also has bad days. On the bad days, he slips back into his manic world and becomes irritable, irrational and obsessive. Unfortunately for my grounding belief and me, his trajectory is not unidirectional. Even though we boost each other in our little support team of my sisters, Chuck and I with the catch phrase “good days and bad days”, the bad days are very difficult, and there are evenings where we walk off the ward, out of the building into the summer night air and feel a crushing weight that stuns us all into a heavy silence. On one such drive home, K. tries to make a joke out of the fact that even the cheer-leading squad has punked out. 

It costs everyone to remain calm and upbeat in the face of Scott’s setbacks into irrational, manic behavior. And he is doggedly persistent about it. He wants to get off the floor. He wants to go outside. He wants to play tennis. He wants to know his discharge date. He wants to make plans to get back to college. And therein lies the rub. 

Every day that he is on the ward brings us closer to August 27^th - the day he is supposed to be traveling back to campus at Middlebury College – and the pressure gets ratcheted up. Everyone but Scott knows that it is not possible for him to go back to school on the 27^th. I am still operating in something of an unrealistic bubble, and part of me wonders if maybe he can go back to college, but just get there two or three weeks after the start date. 

I want very much to not break his dream and somehow make it possible for him to go back to school. We speak with Scott’s doctor and social worker about this, and we explain that we are punting every time the issue comes up. Maybe we should just tell him he is going to be a ‘little late’ returning to school … maybe we should wait until he is discharged to break him the bad news. His medical team gives us the excellent advice to confront the issue while he is still in the hospital. Since he will take it poorly, they have the capacity to deal with the consequences and they can keep him safe. Chuck and I agree to have the sit-down and break Scott the news.

It is probably somewhere around the 20^th of August when we have the meeting. By now my sisters have had to return to their lives and their jobs, so it is just Chuck and I with Scott’s social worker and the wonderful Dr. S. who sit down in the room. Thinking back on it now, I contrast it with the meeting on the men’s ward with Scott’s previous doctor. This room is large and airy, with art on the walls and big windows facing out onto the grounds. There are many seats in the room and we only take up a subset of them. 

But I do not notice any of this at the time. My heart is in my throat and I am sweating. The cost of these emotions is even higher because of the need to appear outwardly calm and upbeat for Scott.  I fear breaking this news to him. I know how painful it will be, and I feel that his losing the semester at Middlebury is the worse possible outcome from his being diagnosed as bipolar. I guess that just goes to show that the mind helps us by compartmentalizing facts. Somehow I thought my greatest burden was the pain he would be caused by the fact he would miss a semester or two and not return in the fall to be with his friends and teammates. Clearly, part of my brain must have missed the part about him having a life-long illness.

I don’t remember how it came out: who said what first, but I guess we all took turns giving him the message. Scott’s agitation immediately skyrocketed and he started what I think of as his ‘huffing-and-puffing behavior’. There was real panic in his voice, and the panic was taking refuge in fury. He also loudly proclaimed that if we did not let him return to school he was going to kill himself. I observed that the more Scott got agitated, the more Dr. S. lowered his voice, lowered his gaze and did everything to not confront or inflame Scott. I followed suit and kept my voice low and calming. We were all hoping we could get through this meeting and get past this issue. 

But the situation deteriorated, and soon Scott was getting visibly distressed and regressing into psychotic behavior. He started talking to himself, mumbling about how the events leading up to his hospitalization could not possibly all have been coincidences … they just couldn’t all be coincidences. By coincidences he meant all the ‘signs’ he had seen that showed he was indeed a CIA agent, people were indeed trying to kill him, he was indeed under constant observation, and all the other events his manic mind lined up into his version of reality. Dr. S. saw this regression and suggested gently that we had discussed this subject enough for today. 

For me, with my optimistic belief that progress would be sustained and unidirectional, this setback for Scott was devastating. He stormed out the room and refused to speak with us any further or even to have us on the floor. I was so emotionally fragile myself, that his proclamation of his intent to kill himself was terrifying. My hands were shaking and a weight on my chest was compressing my heart was making it hard to breathe. I recall that after the meeting had disintegrated, I stepped just inside the dining room where I was alone and leaned my forehead against the wall. I seemed to lack the strength even to hold my head on my shoulders. The social worker found me this way and asked if I was alright. “Am just trying to breathe” I replied. I should have known that of all places, a psych ward is the safest place for a person who wants to end his life. It was at this point that I found out that the windows on the floor don’t open and wont break, although I should have probably already guessed that.

Chuck and I didn’t leave the hospital grounds, even though we had been banished from the floor by Scott. I recall sitting in the car, which we had moved to a parking spot where it faced the exit for his ward. From this position we could see people going in and out of the building, but could not be seen from his room. I guess he was right when he thought there were cars parked outside the building with occupants who were watching him.

We had agreed with his doctor that Scott would stay on the ward today and not be allowed outside for that afternoon’s activities, given his threats to escape and to kill himself. I don’t exactly recall why we were sitting in the car watching the building. Maybe we just couldn’t bring ourselves to leave, or maybe we thought he would change his mind and call to ask us to visit during visiting hours. It was a 90-minute drive round-trip to the house, so presumably it made sense to stay put for a while. 

At some point we called the nurses’ station to inquire how he was doing. I guess we wanted to know if he had resorted to punching the walls again or if they had to give him extreme tranquilizers. I was thrown into a complete state of terror during a moment of confusion when they weren’t quite sure where he was. Finally the answer came back that Scott was not on the ward. This didn’t make sense to me since the doctor had agreed to keep him inside. My voice rising in pitch and panic, I think I snapped at the nurse when seeking clarification. Clearly she didn’t deserve this and probably had no idea where my emotional turmoil was coming from, but it did seem to me that given how much we were paying per day, plus what the insurance was paying, they should have managed to not to temporarily ‘lose’ a patient who was suicidal that morning. Eventually it emerged that Scott had gotten much calmer since the meeting earlier in the day and they had cleared him to go with the other patients for that day’s escorted activity, which was a swim in the pool.

It’s funny (or just plain sad) the things that one resorts to when stress has put you in a state of mind that is not exactly completely stable. Again I am fuzzy on all the details but I do remember lurking around behind a building on the hospital grounds, peeking out from behind the hedges in order to get a glimpse of Scott walking back with the group from the pool. I wanted to see him but felt that he couldn’t see me watching him since he had told us to leave. I also really didn’t want to feed his paranoia by having him see that we were ‘spying’ on him, but I had this desperate need to try to see if he was going to break away from the group, or if I could tell from his body posture whether he was terribly despondent. 

Of course I couldn’t see him well enough to detect his emotional state and he didn’t burst away from the group and make a mad dash for the woods or a road while I watched. I went back to the car where Chuck was waiting, and after a while we called the nurses’ desk again to confirm that he was indeed back on the ward and there were no further plans to leave the building that day. At that point, Chuck and I undertook the long sad drive back to our house. 

(continue reading) 

The Men's Ward - New York Presbyterian Psychiatric Hospital (chapter 3)

Monday, August 9th  5:00 pm 

Driving back home from the hospital I can’t speak. I am working so hard to hold on, to keep from completely disintegrating at the thought of having checked our son into that psychiatric ward, that I wonder how I will get through the next hour, and the hour after that, and the one after. I had called my sisters from the ER last night after receiving the first doctor’s pronouncement of schizophrenia, and they had offered immediately to come and help. No, I told them … there’s nothing you could do, I will keep you posted. But today, I realize that I am completely dysfunctional at the moment, and it is not fair to rest everything on my husband’s shoulders. I text an SOS to my sisters. Literally. Very quickly I get a text back telling me help is on the way… details to follow. I put away my phone and focus on breathing. 

_____________________________________________________________________________

 

Later that day we arrive back at the men’s ward with Scott’s belongings. I don’t remember packing them, nor driving back to the hospital. I remember ... collapsing on the couch in our living room, literally prostrate with the pain of what was happening to Scott. I remember, my husband trying to comfort me, telling me that he promised me our son would be ok, and my telling him not to make promises he could not keep. I remember, hearing my husband, who had gone down to the basement to try to keep the sound of his sobs from me. 

Scott is out cold. A tray of food sits on the table in his room. There is some round flat breaded something, which I expect is meat of some type. There are also round carrots, the frozen kind. It crosses my mind that I think they are called “carrot coins”. I can hardly imagine a less appealing looking dinner. A kind nurse is on duty. She smiles at us and we sit together in white plastic chairs in the hallway outside Scott’s room. 

She tells us that he tried to leave after we did and did not react well to finding the doors locked. He punched the walls and became angry. He is not a small guy, and his fury when he is manic can be intimidating. Apparently they gave him some serious tranquilizers since he is now completely comatose. He did not stir when we touched his shoulder or called his name. She reassures us that sleep is the best thing for him now. It is how the brain heals itself she says.  We tell her about our experience at the ER. Amazingly, she scoffs at the ER doc’s diagnosis. I am only a nurse she says, but I can tell you he is not schizophrenic. This is most likely a drug induced psychosis, or mania from bipolar.

Unbelievable! I am so relieved tears fill my eyes. I may have actually taken her hand to thank her for sharing this insight with us. I walk out of the ward to make a phone call since cell phones are not allowed on the floor. I call my younger sister, who lives in Washington DC and is already en-route to New York. “The nurse says she doesn’t think it is schizophrenia,” I say joyfully into the phone. “It’s most likely bipolar”. My sister pauses, not quite sure how to take the information. When did a diagnosis of bipolar become joyful news she must have wondered. We share details on her ETA and that she should just let herself into the house since we will be asleep before her arrival estimate of midnight. That night, we sleep the sleep of the dead. In all honesty, for me it is an Ambien-induced slumber. My goal was to sleep instantly and not have time to think. 

(continue reading)