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)