Lessons learned – Episode 1

This is the practical part of this blog - perhaps the only part you are really interested in.  Maybe you are wondering: what did you learn from your experience that will be useful to others? Or, Holy Moly I am freaking out and sailing without a rudder can you please share something that might help me?

Ok, fair enough. So here are some take-aways from the first episode, in no particular order:

1.     If a person you love is acting bizarre and is just not himself/herself (you will know this in your gut) then you need to get them a medical evaluation and most likely on one or more medications. Ideally, they will agree with you and go along willingly to a Psychiatric Hospital. However, depending on how far gone they are, they may be highly resistant to the idea. Psych hospitals can only do voluntary admissions (i.e. the person gets on the phone and says that they agree to come in). Alternatively, a Psych Hospital can do an involuntary admission with a 72-hour hold if the patient has been referred from the ER. So your best bet, if you are dealing with somebody who is completely uncooperative, is get them to the ER and then the “process” will take over. It’s unpleasant, and may involve your loved one traveling to the Psychiatric Hospital handcuffed to a gurney in the ambulance, but sometimes for their own safety you have go through this. 

2.     Do not take as final any opinion that is rendered on the spot by an ER medical doctor. They are not trained in diagnosing psychiatric conditions, and sometimes a definitive diagnosis takes many days of observation. 

3.     You will be your loved one’s advocate at the hospital. No difference here between a psychiatric hospital and a medical hospital. Staff are busy and looking at the big picture. You are focused on the well being of one person. Be pleasant, make friends with the staff, find out what is allowed and what is not, ask questions and if you don’t like the answer, research it. 

4.     Expect that they will have a stay of about 2 weeks (on average) as inpatient at the hospital. You will be able to bring them things that will make their stay more pleasant. Like a brand new pillow, favorite clothes or certain snacks. Everything you bring will be searched by the staff before it will be brought to your loved one. If you are bringing sweatpants or a hoodie, you will have to remove the drawstrings. This is not only for their safety, but for the safety of all the patients on the ward. 

5.     There is much to be said about the selection of the hospital. Based on our experience, I would suggest pretty much any of them other than the adult male ward at New York Presbyterian in White Plains. The Haven at NY Presbyterian was wonderful and I would definitely recommend it, however it comes with a really big price tag, which most people can’t afford. I know we can’t.  Plan on about $1K per day as your out-of-pocket expense (i.e. the portion that your insurance will not cover).  I will say more about our experience at other hospitals in later sections. 

6. Before your loved one is discharged from the hospital, make sure there is a plan in place for next steps. There should be a referral to a psychiatrist and a first appointment already made. Understand that they will be fragile and should not plan on resuming "life as normal" immediately upon discharge. 

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 big decision (chapter 8)

August 21 , 2010 – NY Presbyterian Hospital

            I am the first one into Scott’s room since Chuck is speaking with a nurse. The nurse is undoubtedly   going through the bag of items we  brought for Scott checking everything  since that is usually what happens as soon as we arrive.

Scott is sitting on his bed. No sooner am I in the room that he says he wants to talk about going back to school. I feel assaulted, having hoped to defer that topic for a while, given yesterdays’ disastrous results. With a heavy heart I merely look at him and sink into a chair, waiting to hear what will come out of his mouth. I am not sure I am strong enough to go back to the place we were yesterday.

He looks at me and says that he has been thinking about it and he agrees it would be a good idea if he stayed out of Middlebury this semester, and maybe take a class or two at a local school.

I leap up and out of the chair with joy. I literally feel as if I’ve been told that I just won the lottery. Tears start to run down my face as I place my hands on either side of Scott’s face, telling him how wise I think that decision is. Chuck walks in and wonders what fabulous thing has just happened. I share the good news with him, and Scott elaborates on his decision.

He tells us how the topic came up in group therapy this morning. Two of the patients he really respects: the recovering alcoholic trader and the doctor, urged him to skip a semester. They told him that he had his whole life ahead of him, that there is no rush, and taking a semester off with a couple of local classes could be a really good thing for him in the long run. 

And here’s the miracle part …. he listened to them. He HEARD them. Unlike his response to us, or to the doctor, or to the social worker, he internalized their advice, and agreed with it. Part of me wonders whether Nana or Pappa had a hand in this sudden recovery of his senses, or maybe they spoke through the voices of these other patients.

Scott goes on to say, that in thinking about things, he realizes that we have always provided him with good advice. He trusts us and if this is what we think is the best thing for him, then he agrees. Clearly the medication is starting to lay the groundwork for the path back to a 'normal' Scott. While stress and setback can still make the beast of psychosis rear it's ugly head, the 'scaffolding' that Dr. S. talks about is in place and it is supporting the return of rational thinking.

At the time I am stunned. I wonder how this miracle of rational thought has returned to Scott. But I am too joyful to ponder the question too long. We leave his room to head to the dining room for a celebratory snack and along the way we tell everyone we see of Scott’s good decision.

A call for help (chapter 7)

August 21, 2010

The next morning I am full of dread. Acid churns in my stomach and I wander restlessly from room to room, unable to do anything for more than a minute, as I wait for my daily call from Dr. S.

When he does call, he introduces me to the notion of dissociation. I am not quite sure what it means at the time, but I grasp that it has to do with how Scott, who had been making such good progress, slipped back into psychosis and denying the reality of the world when confronted with the bad news of not returning to college.

Dr. S. actually questions out loud whether Scott might remain in this dissociative state we have pushed him into, but then reassures himself that the medication will give him the scaffolding to hold on to reality. Great. I love it when a doc has a dialog with himself that results in scaring the pants off you.

I am alone in the house. Chuck had to go to work to keep his business up and running and my older son Justin was over at a friend’s house. Scott’s hospitalization was very hard on Justin, and he dealt with it by not really dealing with it. The movie ‘Shutter Island’ was fresh on everyone’s mind that summer, and Justin said that the grounds and buildings of the New York Presbyterian hospital remind him exactly of Shutter Island.

I decide to go for a hike in the woods. We can do that just by walking off the back of our property. I always take my hiking buddy, our gorgeous loving German Short Haired Pointer with me when I go. He is of course blissfully unaware of everything that is unfolding but is always on hand for a hug and is happy to lay with his head on my lap for hours at a time, if only I would let him. 

Our house abuts 100 acres of woods so we have lots of good trails. The hike is aerobic since it goes up and down hills and soon I have my heart beating fast. My goal is to try to create some endorphins through exercise. I believe I succeeded. I resolve to put aside the soul-consuming fear that Scott would disintegrate permanently into a dissociative state. I also resolve to call upon the spirits of passed family members for help.

Oh boy -  this is the part where she has a complete meltdown, you are thinking now. 

Call it the edge of insanity, call it enlightenment, call it desperation, or call it an exercise high, but in my mind I reach out to my Nana who had passed away at the age of 101 and my father who died 9 years earlier and had been a great pal of Scott’s.  I ask their spirits for help, to come to the aid of his wandering mind and to bring him back to his senses. I was not sure where Scott’s mind went when it wandered away but I thought maybe they might have better luck getting the two them reunited. With this call for help, I feel reasonably functional and somewhat optimistic.

No sooner am I back at the house on that beautiful August day that a bird flies into one of our windowed walls. It makes a loud thumping sound, and I worry that it injured itself. The other part of my brain thinks: Nana or Pappa, acknowledging my call. I walk over to the window to ensure there isn’t an injured bird on the ground. Not seeing one, I turn and start to walk towards the stairs to get changed and ready for visiting hours. As I am turning, another bird hits a different window with a second loud thump.  Second spirit, reporting for duty, I think.

Yes, I suppose I truly am nuts at that point, but in my heart I am really glad to have them onboard.  

(continue reading) 

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 Diagnosis (chapter 5)

Wednesday, August 11th  2010

For the first few days we have no diagnosis for Scott. The morning after he was transferred to the Haven he was seen by his medical team. I don’t recall exactly who was on the team, but I know there was at least his doctor, his social worker, a nurse and probably some other mental health workers. 

Perhaps that’s another reason one pays a premium at the Haven – just the concept of having a ‘medical team’ is somewhat reassuring. Contrast this with what happened in the Men's Ward where we had to fight to get just 10 minute's of the doctor's time. Scott’s doctor, whom we will refer to merely as Dr. S., was a lifesaver and real blessing. My husband Chuck and I were still completely overwhelmed and terrified by the situation, but we were moving towards firmer ground and Dr. S. helped to get us there. He spoke with us daily, in a manner that was straightforward and open. He didn’t sugar-coat anything, but his directness, calm demeanor and matter-of-fact presentation helped to make things a little less scary. 

He explained how Scott was still in a paranoid delusional state and still believed that the cars parked outside the hospital were there to watch him. He further explained that in this state, he couldn’t just tell Scott that he was having a psychotic break because it would all just get folded into his paranoid view of the world. Instead he said that he would wait and as the medication started to provide some scaffolding for Scott’s jumbled mental condition, it would eventually crack the door open just enough for Dr. S. to get his foot in.

Far from making a snap decision like the incompetent and unthinking doctor at the ER, the  team at the Haven are monitoring Scott and his reaction to the medications he is being given.

Scott was immediately placed on very high doses of Lithium and Zyprexa. Still he remained very manic and volatile, and so he was also given Thorazine to help calm him at times when the bull started to rage. This usually happened at night, when sleep evaded him and he would get agitated. I recall Dr. S. telling us that if any of us were taking the medication that Scott was on, we would lay down and sleep for a week. But Scott was like a run-away freight train at that point all the lassos that Dr. S. threw up around him were unable to slow him down.

When Scott is manic he gets fixated on sports, usually football. At the Haven, he only wanted to wear athletic clothes with sneakers, and he liked to set the treadmill at an angle of 15 and run on it. In the middle of a conversation or sometimes during a meal, he would drop to the floor and start doing push-ups. This thing with push-ups he had been doing for some time. 

We were so naïve we missed all the warning signs. If we had known anything at all about mania, we would have been tipped off when during a July 4^th weekend party at a friend’s house, he got up at 6 a.m. after only a few hours sleep and decided to jump in the pool and swim laps at great speed. He tried waking all of his friends but they were hung over and told him to go away; saying he must be crazy. He told us all this upon his return from the weekend away, in his ebullient verbose way of that summer, but we merely shrugged and marveled at his high energy.

Yet his high energy eventually degraded to erratic behavior. When the psychosis came, it seemed to us that it came quickly, but in reality he had been able to ‘cover’ it for some time. It was only after he was hospitalized that we started to discover some of the things he had been doing. For example, we discovered in his wastebasket a check for $200 that he had thrown out, but fortunately had not ripped up as he had most of the other things he was getting rid of. We found a hardcover book that he had attempted to burn in the outdoor fire pit (not sure what his thinking process was but the book was the Diary of Anne Frank). He had been practicing self-defense with golf clubs and garden tools, knocking the head off a hoe as he smashed it against a rock. It eventually came out that he thought his father and I were with the CIA and were plotting to have him killed. Therefore he had to cut his ties with his past and be prepared for the attack when it came. My heart hurt to think of him in this dark place. 

And so we waited for a diagnosis. Dr. S. seemed to feel that Scott’s symptoms pointed to a mood disorder, especially once he found out that Chuck’s father suffers from Bipolar Type II, but it seemed that he was still reluctant to rule out schizophrenia. Bipolar has a strong family tie, and if one member of the family has it, it is much more likely that others will too. It is also more common in males.

Dr. S. would eventually settle on a diagnosis of Bipolar Type 1, the more severe of the multiple types. These days they talk about a schizo-affective spectrum and don't rush to label an illness with a tidy label. But the waiting to know what he had and therefore what we could expect as a prognosis was hard, and it was hard to have Scott be so different from his usual self … so ‘crazy’.

Most of us have an inherent fear of madness. This fear stems from our old lizard brains, and is often irrational. We fear snakes and things that move in the dark, or the spider that drops from the ceiling into our hair. We fear people who, in less enlightened times, were labeled ‘lunatics’. We fear the institutions where they were housed. The term ‘lunatic asylum’ conjures up Hollywood-conveyed images of terrifying spaces overflowing with people who have left the boundaries of what we understand to be our fellow humans. We are all tainted by these images. When a person you love abruptly becomes somebody else, somebody unrecognizable, unpredictable and irrational – and you know that the things you say and do are now being interpreted by him through some distorted lens, it is as if the ground beneath your feet has cracked and you have been swallowed into a dark chasm. We lose our foundation and we lose our way. Our minds were gripped by fear,  our thoughts darting about like insects trapped in jar. Chuck and I feared this madness that had claimed our sweet son. We feared it deep down inside our old brains, where a knot of terror sat like a malignant tumor.

Yet we had an unspoken pact to never expose these feelings inside the walls of the hospital. When we pressed that buzzer to request entrance to the Haven, whatever turmoil or anguish we had been engulfed in up to that second, we covered up with a smile and an outwardly calm demeanor. Scott was so volatile, that our primary goal in those long days at the hospital was to keep him calm and to distract him if he looked like he was headed towards an agitated state. Because he had so much energy, it was hard to be indoors with him, but it would be many days before he was cleared to spend an hour or two outside in the courtyard under the supervision of mental health workers. Fortunately they have a ping-pong table at the Haven, and we spent hours and hours playing ping-pong. Both Scott and his father are quite good, and Scott’s greatest glee was to challenge his father to a game in hopes of beating him. Sometimes he would win, but not always.

As the days passed slowly by, Scott started to forge bonds with the other patients. While we had been motivated to move him to the Haven so that he would be with other people his age, it turned out that the patients who had the greatest influence on him were adults. There were two people in particular who played an important role in his path to healing. One was a recovering alcoholic whom I gather had been on a bender and checked himself into the Haven. He was in his mid-forties and I believe he was a successful businessman who may have been involved in commodities. Group sessions took place in the morning before visiting hours, and we came to find that Scott was wholly impressed with what this gentleman had to say, and respected his input. The other patient was a doctor. I do not know why she was in the Haven but she read a lot and was doing research on her condition. When Scott went into crisis in his second week at the Haven, these two would play a pivotal role in helping him at a time when neither his doctor nor his family could reach him.

(continue reading) 

 

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)