Thursday, August 4, 2016

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. 


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