If you are a new visitor to my blog, may I suggest you start at the beginning of our journey with Bipolar by visiting my archives

Thanks for reading.

Monday, June 27, 2011

A Book Review

Saturday Josh and I ran errands.  One of our errands was to go to the library.  There was a book there I'd been advised to read.  "Depression is a Choice"  by A.B. Curtiss.  The author believes that depression and mania can be treated without the aid of medications.  The premise being that we 'learn' to follow a path of depression and that we can 'learn', or reprogram ourselves, away from depression and mania.

I have barely begun reading that book.  That's not the book I want to talk about today.  While looking through that section of the library, I picked up another book, "Hurry Down Sunshine" by Michael Greenberg. 

Michael's daughter, Sally, suffered a manic episode at the age of fifteen.  This is the story of their experiences.  It was a 'difficult' read because so much of what this father experienced, mirrors what I experienced during Josh's mania and hospitalization.  I could relate to his feelings of fear and sorrow.

Once his daughter came home (she was hospitalized MUCH longer than Josh was), Michael became almost obsessed with monitoring his daughter, and her reaction was just like Josh's was when *I* was obsessively monitoring him; "Do you think I'm insane?  Is that it?"

Her mania, the things she said, so reminded me of the things Josh said during his manic phase, and then after, once medication had kicked in, she seemed to be trying so hard to figure out what happened, what did all this MEAN.  I remember Josh expressing those same thoughts, along with shame and remorse and the realization that they could no longer trust their mind.

It was disheartening to me to read the Epilogue, to realize that, even though Sally was stabilized on medication and doing well, Bipolar continued to impact her life.

This book is very well written, and if I actually had writing skills, I could have written a very similar book based on my experiences with this disorder.  The glaring differences to me, between Sally and Josh, are that Sally was a minor when she suffered her first full blown mania.  Josh was already a legal adult, and that changes things a bit.  First of all, when symptoms begin at a young age, the prognosis isn't as good regarding treatment, and because Josh was a legal adult, I had no real power to force treatment. The last real difference seems to be in the experiences with the mental health environment.

Sally was hospitalized longer and it seems, her family was much more active in the process than I was allowed to be.  Even though Josh had signed releases allowing for an exchange of information about his condition, I was NEVER able to get much information while he was hospitalized, nor was I allowed to visit.  Josh was not even close to stable with his medications when he came home and *I* was given no after care education at all.

Because Josh was given a dual diagnosis of Bipolar II AND drug dependency (pot usage), his after care focused heavily on the drug dependency and I believe this caused him to bail on the outpatient program.  He didn't stay in treatment long enough to see any benefits from anything being done for him.  Sally had no underlying drug use, and Sally had not been suicidal as Josh had been.

Reading this book brought back all that turmoil for me, it's a very accurate portrayal of the myriad aspects of a Bipolar diagnosis.  Michael captures all those feelings of being 'lost' and 'out of control' so well. When you're first faced with this situation, you're like a newborn baby; the lights are too bright, the air is cold on your skin, you are so much out of your element and the overwhelming feeling is one of, "put me back in there to float in blissful oblivion!"  You just so badly want things to return to normal.

But normal isn't easy to come by with this disorder.  For the patient or for the family members. 

I suppose, from my vantage point, I view this book as a cautionary tale for anyone struggling through the maze of Bipolar.  You can do everything 'right'; you can find something resembling 'normal', but you can still get derailed.

It sounds like Sally has been able to fashion her life in a way that works for her.  I only hope Josh is able to do the same.

Saturday, June 18, 2011

A Sense of Responsibility

Having just recently made this blog 'findable' via search engines, I realize I have a responsibility to anyone who might land here seeking information, support, or a CLUE what the hell to do with THEIR Bipolar Son.

Since I began letting Search Engines 'crawl' over my blog, my stats have shown the searches that land people here on my blog.

Things like, "Should I kick my Bipolar son out of my home" and "Bipolar Son ruining my life".

My heart breaks when I see these things, because I GET it.

I get the frustration, the heartache, the FEAR.  I've woken up and gone back to bed every evening with all those feelings for over a year now.

Right now Josh is receiving treatment.  He's SO much 'better'.  But things aren't 100% wonderful.  He continues to drink alcohol on occasion, he isn't taking his medication exactly as prescribed, his sleep is upside down AND he isn't completely his 'old self'.

He isn't working and I'm paying his rent and utility bills.  He just received his last check from his old job, that will be his gas and food money until it's gone.

So things aren't 'normal' yet, and there still is fear that I live with everyday.  He very easily could decide to stop his medications, he might increase his alcohol usage in an attempt to 'feel better', or begin using pot again.  He might refuse to see his therapist or make his next doctor appointment.

Nothing can be taken for granted with this disorder.

Other mothers who have a Bipolar son may read here and think, "Yes!  I'll kick my son out.  That worked for THIS mother!"  But I'd hesitate for anyone to use my experience and apply it to their own situation.

Offering to help Josh get his own apartment did eventually result in him FINALLY coming to me and asking to see a doctor.  The stress of trying to work everyday in the hopes that he could eventually become financially independent DID cause him to cycle to a degree that he couldn't live with, hence his request for medical help.

But any number of things could have happened as a result of handing him responsibility for his own existence.  He could have killed himself.  He could have done something in a mental state that resulted in police intervention.  The outcome could have been very different, and I'll point out, we're not at the 'end' here.  We haven't reached a 'happy ending' yet.  There is no way to predict what might happen today, or tomorrow.

I'll also mention that in the year and half since all this 'began', Josh's condition, everything I've tried to do to help him, has spiraled me into debt.  I HAD a nice little savings account and no debt.  I now have NO savings and have had to use my equity line of credit to help him.  My debt is mounting.  Even if Josh were to stay in treatment and slowly become financially independent from me, the amount of debt I have amassed will leave me battling it for YEARS.

The fact of the matter is, that for Josh to get the medical help he needs, *I* have to pay for it.  He isn't able to, and no one is going to treat him if someone isn't paying the bills.

We are 'lucky' in the sense that Josh has a private health insurance policy.  *I* have been maintaining the payments for his insurance to the tune of $200+ a month.  I have refused to let him become uninsured, my fear being that he'll never be able to get insurance with this diagnosis.  Our state insurance plan requires that you be uninsured for six months to qualify.  How stupid is that?!!

But even with insurance, the uninsured costs of Josh's care (especially his hospitalization last year) are staggering.  Plus I'm supporting him, trying to help him stay in his own apartment.

Would I suggest this to anyone else in my situation?  No.  I wouldn't suggest anything to anyone.  Bipolar manifests itself differently in each person.  There is no ONE way to treat it, there is no ONE way to move through all this.

I have moved through it by the seat of my pants.  I've made many missteps and I've occasionally 'lucked out'. 

More than anything I would hope that any other mother of a Bipolar son who might read here would find comfort in the knowledge that they're not alone, but I sure wouldn't want them to ACT with their child based on my experiences with MY child.

There's too much at stake and everyone moves through this disorder very differently.  Every situation is different, everyone's circumstances are very unique.

Having researched this disorder till I'm SICK TO DEATH of it, I have come to believe that Josh's symptoms, the way this disorder manifests itself in HIM, is very mild compared to many.  Yet, even though it's 'mild', it has totally derailed his life and without treatment he'll never have a 'normal', functioning life.  I cannot imagine having to deal with more severe symptoms.

The best advice I can give, is the best advice I've received.  Over and over again I'm told to take care of myself first.  My friend A reminds me that when flight attendants give their safety talk, they admonish passengers to put on their own oxygen masks, before helping others. 

In all of this, sometimes the ONLY thing you can do at any given moment, is to take care of YOU, because so often, you cannot really take care of THEM.  As I've moved through this, I've done my best in each moment and then tried very hard to let go of it.  Let go and let God.

That's hard to do when the outcome is so fraught with negative possibilities, but the reality is you have to continue to live your life and make the best of a bad situation.

Easy to say, often not so easy to do.  I'd be lying if I said I haven't cried myself to sleep many times over the last year and a half.  And sometimes, that's what you NEED to do.  Let it out and then regroup and face the next day with renewed determination.

One thing I know for sure is I won't give up.  Not yet.  Easily HALF the homeless people you see on a street corner talking gibberish are people who have a mental illness and their families have been forced to finally 'give up'.  I don't ever want to be faced with deciding to give up on Josh, but someday I might have to.

At what point do you decide that you can do no more?  I don't know, I just know that I haven't reached that point yet.  Not by a long shot.

For me, there is always the option of letting Josh move back in with me.  The only upside to that is the money that would be saved.  The downside though is that it will negatively impact my day to day life AND it might 'allow' Josh to not fight so hard for himself, for independence.

Bottom line, day by day is how you cope with this.  It isn't helpful to project and try to figure out the future, because things change with this disorder so quickly.  You make the best decisions you can make and then sit back and wait to see what happens.

That's what I'm doing, waiting to see what happens next.

Thursday, June 16, 2011

An Update... A LONG ONE (but the most promising one I've ever written)

Sorry about that, I had to take my blog offline for a short time.

Josh had borrowed my laptop, and then he called and needed the password to MY user profile.  He was having cable/internet installed and needed logged in as administrator.

I hadn't anticipated this eventuality and I didn't want him to 'find' this blog while logged in under my profile.

He has asked me not to write about him, and I've grappled with that.  While I understand his position, I also feel like I have a right to share *my* part of this story.  I do so here on my blog anonymously.  Josh is not my son's real name.   Were someone to happen upon this blog who knows us in real life, and then if they took the time to READ a large portion of it, they might be able to put two and two together and realize who we really ARE.

I've told Josh, "I write about my experience with this as a mother, and I do it anonymously.  You know honey, there may be other mother's out there who are struggling as I have and if something I write helps just one other mother, well, I feel a need to do it.  But more than that, it helps me.  It helps me to 'put it out there'.

So I will continue to write here, and starting today, I'm changing my settings to have google crawl over my blog.  Previously, I'd not made this blog 'findable' through searches.  That changes today.

On this blog, there is 'misinformation'.....because my knowledge base is forever changing.  I've been forced to LEARN about this disorder, as my son's experience with it has changed.

The biggest thing I've learned through all of this is that with this disorder, nothing is set in stone, there is no ONE experience with it, no ONE treatment for it, no ONE right path to take.

Now, for an update on Josh.

After moving into his apartment, while working mostly third shifts at a restaurant, he began really struggling.  It seemed to me that he was cycling every few days.  One day he'd be manic and animated, a few days later he would be an emotional wreck.

This played havoc with his work responsibilities.  He'd call in sick frequently, because when it was time to go to work, he was a crying, gooey mess.  He even had this happen AT work.

During this time I was deeply concerned.  It seemed that the stress of LIFE; the stress of work, the stress surrounding beginning to be responsible for RENT and EXPENSES, was too much for him.

And I beat myself up.  *I* did this to him!  I offered to help him with an apartment and he couldn't handle the stress!

Just about the time I was considering what other alternatives were available, he came to me and said, "You had asked me to see a doctor for a second opinion.  Find me a doctor."

Over a year after his Bipolar diagnosis, and he finally had ASKED to see a doctor!  Happy days.

Well, not so much.  And I KNEW this.  I KNEW that his request to SEE a doctor was just the first tiny baby step.

I researched doctors and made an appointment with one who was recommended to me. 

A few hours before we were to go to the doctor Josh called me.  He was filling out paperwork to take with us.  "What is this doctor's name?"

I told him and he wigged out!

Apparently this doctor was the doctor he'd seen while hospitalized and he hated him.  Well, to be fair, he hated everything about that hospital experience, but he felt this doctor didn't listen to him; asked questions and never waited for an answer.  "Mom, he never spent more than two minutes with me.  I'm not going to see him."

"Well, the hospital experience is much different than private practice.  In the hospital, the doctors have such a heavy case load, they don't have TIME to spend like they do in their own offices.  Can't you give this a try since we already have an appointment?"


"OK, well, I'll call them and cancel the appointment and we'll find another doctor."

"Forget it, I don't wanna do this anyway.  Just forget the whole thing."

I was crestfallen.  And I was ANGRY!  "Way to have my back God!!  Thanks a lot!  Of ALL the doctors I researched...I chose THIS one?!!!  WHY?!!!"

Hey! I had to take my frustration out on someone and God seemed like he could handle it.

I never KNEW the name of Josh's doctor in the hospital.  I had left countless messages asking him to call me, but NO ONE ever called me with the exception of the Social Worker.

A week went by, with Josh continuing to cycle, continuing to have issues as a result.

He came back to me, very dejected, and said, "OK, I've researched this till I'm sick of it.  It's hard for me to think that I really am Bipolar, but everything seems to point to it.  I know one thing, I can't live like this, so I'll go see that doctor."

Of course, I was thrilled, but of course, I knew this was just one more tiny baby step.

Turns out that the doctor I had found wouldn't be available to see Josh for WEEKS.  I wasn't willing to wait WEEKS; Josh needed help NOW.  I discussed with the receptionist other alternatives and was told that Dr. H could see him within a few days.  I had been referred to two doctors in this practice, and Dr H. wasn't one of them.  I grappled with this decision.  I knew that whoever saw Josh was going to have to be AMAZING.  I was only going to get this one chance to get him in front of a doctor.  But my options were limited and so I made an appointment with Dr. H.

I went with Josh to his appointment, but he didn't want me to go back with him.  When he came out he had a prescription for blood work, a sample pack of an anti-psychotic, a prescription for an anti-anxiety medication and a prescription for a mood stabilizer (an epilepsy medication).

He said he liked the doctor a lot, that he felt HEARD and that the doctor had explained all the medications to him.  The doctor asked him to see a therapist there at the practice named David.  He told Josh that therapy was as important as the medications.

He told Josh that the Bipolar II diagnosis was spot on, that he felt Josh had been experiencing episodes of hypomania and that he has a separate generalized anxiety disorder.

Josh began taking these medications and the results were almost instantaneous.  The changes in him were amazing.  He LOOKED better!  He was no longer white as a ghost, the dark circles under his eyes were gone and he had LIFE in his eyes.  He smiled, he joked!  His entire demeanor was different. 


A week later he came to see me and told me that he didn't like the medications.  We had a long talk where he told me that he could see the positives, "On one hand I'm getting all these good things; I'm happier, I'm coping better and all that, but I feel like on the other hand I'm losing the part of myself I love the most."

"OK, but Josh, give this some time.  It seems to me that as your body gets better adapted to this medication the positives will increase, and by simply functioning better, you'll regain and actually be able to benefit on that other side."

In the end, I got him to agree to stay on the medication and then talk to his doctor about how he's feeling at his next visit, just a few days away.

I went with him to that appointment and I joined him when he met with the doctor.  I told the doctor that Josh wasn't sure he wanted to remain on medications and that he questions whether he's really Bipolar.

This doctor is Indian, and talks very distinctly.  "OK Josh, let me ask you, does this medication seem to be helping at ALL?"

"Yea, I'm happier and I'm not so anxious.  I'm able to cope really well and everything."

"OK, now, what side effects are you having?"

"Well, I take that anti-psychotic right before bed and it's messing me up.  I sleep for like 12 hours.  I've slept through my alarm and I miss work.  I slept through 18 calls from my manager the other day!"

"OK, well, what I'd like you to do is take just half on nights when you have to work.  The rest of the time, take the full dosage.  That should help clear up that problem.  OK, any more side effects?"

"No, I haven't noticed anything."

"OK Josh, this is what I want to say to you.  You are on the lowest dosages of all these medications possible.  You are seeing very positive effects and no side effects.  Do you know how LUCKY you are?  Don't think of this as Bipolar if you don't want to.  Doesn't matter WHAT was wrong with you that was making you unable to function, this medication is working!  Here's what I want you to do.  I want you to commit to continuing these medications for one month.  I'll see you back in a month and I can almost guarantee you that you'll see more positives AND you'll realize you haven't sacrificed anything on the other side.  It's only been 11 days; in another month you will become stable on these drugs and I think you'll be pleased.  I want you to see David regularly too.  OK?"

Josh willingly agreed to this. 

Since then he's had trouble getting all his dosages in as scheduled due to his wacky work schedule.  He met with David and really liked him and I think he got a lot out of their first session.  He sees David again next week.

He wound up quitting his job because they were very upset he'd slept through those 18 phone calls.  He tried to explain that he'd been on new medication and had since seen the doctor who adjusted his dosage, but his manager kept yelling, wouldn't listen, and so he quit.

Probably for the best anyway.  Josh needs a DAYTIME schedule that is static.  He's actively seeking a new job.

For the most part, I feel like I have my son back again.  On this medicine, it's like we've rolled back the clock about a year and a half.  He is functioning better in every way.  Occasionally his mood seems a little off, but I don't think he's consistently taking his meds on time AND it sounds like he's drinking alcohol on occasion.  I've talked with him about this, about how alcohol disrupts what the medicine is trying to control, but I can get nowhere with him on that front.

Of course, I'd love to see him continue on these meds and with therapy.  IF he would continue down THIS path, I feel confident that he can regain a normal life.  But with this disorder there are no givens.  I realize that he could step off this path at any point and I see my job as being the one to REMIND him how bad it was before he started treatment.

As a mother, the one thing I'd like to feel is secure where he is concerned.  When you face a crisis, there is nothing better than that feeling of finally being able to let out a big sigh when it's over; that calming breath you get to take when you finally get on the other side of it.

It's sad to me to know that it may be a very long time before I feel confident that I can let out this breath I've been holding for the last year and a half.

Everything happens for a reason.  I LOVE Josh's doctor, so all that yelling I did at God?  Well, I've had to apologize for questioning his plan.  THIS doctor is the one Josh was supposed to see and that's exactly what happened.

Josh said to me last night, "I don't know how you've done this Mom.  How have you gotten through all this?"

"Well, first of all I love you.  I would walk through fire for one of my kids, but secondly, none of this is your fault.  You were dealt a crappy hand, right at the VERY moment your adult life should have been taking flight.  I won't stop fighting for you until I see you soaring."