A Life Sentence

I haven't written here in a LONG time because my life has been full of changes and Josh has been doing so well.

He continues in his job as a Dog Washer and generally loves it.  He really does like dogs more than most people! 

He has made new friends at work and actually has a girlfriend.  He acts very responsibly in all areas of his life; keeping his apartment clean, getting oil changes...basic things we all do, but things I didn't even realize that Josh cared about doing.  He's paying his own living expenses (although I'm still paying about half his rent and his health insurance and medical bills).

A couple of months ago I noticed a change in him.  He seemed 'moody' and 'touchy'.  He wasn't tired and he wasn't hungry (two things I know of that create a mood shift for him).  I asked him if he was still taking his medicines and he told me he was.  The next weekend when I saw him, he admitted that he had quit taking his anti-psychotic.  He hated how lethargic it made him feel.  He had been to the doctor that week and told the doctor that he'd stopped the medication.  His doctor said that he was actually going to stop his anti-seizure medicine, but since Josh had stopped the other, they'd just see how that went.

Josh lost his 'shine' when he stopped that medication.  That glow he had, the ever present smile and obvious joy in his face went away.  It made me sad to see him in this diminished state, but slowly, as his body adjusted, he seemed to get better; not as good as he was on the medicine, but better.

Josh is going to Grooming School in mid February.  He has mixed emotions about this.  He has favorite breeds of dogs, like boxers, labs, german shepherds, etc, and those dogs don't get groomed, just bathed.  He'll miss working with his favorite dogs.  Secondly, Groomers aren't on salary, they make a 50% commission.  The Groomers at his store make almost twice what he does, but that's only if they have enough work.  Thirdly, Grooming School is 'free' (you have to buy about $600 worth of tools) but you have a two year commitment with the store and if you don't honor that commitment, you have to reimburse them for the education (a lot of money).

I encouraged Josh to go to Grooming School, arguing that he can still see and 'play' with his favorite dogs who are being bathed, as he has time in his schedule, and I told him that he NEEDS to make more money, that I'm just about finished subsidizing his existence.

And then.....he told me last weekend that he's going to stop taking his anti-depressant.  I'm not just unhappy about this, I'm pretty pissed off at him too.  I know it's his life and his decision, but I think he's doing what so many Bipolar people do.....derail their progress because they think...in their heads...that they're doing FINE and will NOT acknowledge that the medication is what's keeping them fine.

I told him how I felt, I reminded him that when he asked the doctor to add the anti-depressant, IT was what  HE said made him feel better.  I reminded him what his life was like before the medication and pointed out how far he's come since he began treating his Bipolar.  And I told him that THIS was the worst possible time to experiment with his life...just getting ready to start Grooming School...just beginning to really be able to support himself.

Deaf ears.  It all fell on deaf ears. 

I said my peace, made the best points I could make and told him, "Your life, your decision, but I cannot continue to support you, so if this causes you to cycle, you are on your own."

I'm going to have one more talk with him.  The tools he needs for school, he can buy at his store and they will deduct the cost out of each check, but all the groomers say their tools suck and break and have suggested he buy his tools on his own elsewhere.  He asked if I could help him buy the tools and he'd pay me back.  Of course I'm willing to do this, but I think my willingness to help him out financially ONCE AGAIN, is going to have a stipulation placed on it and that stipulation is that he make no more medication changes until early summer (he tends to cycle in the spring).  Of course, he can agree to this and then not really take the medicine, but if he does that and things go haywire, he's gonna have to deal with the consequences.  And if he feels I'm strong-arming him, he can buy the tools at the store and have them deduct the cost from his checks.

All of this reminds me that this Bipolar stuff is really a life sentence, and not just for the poor person suffering the disorder, but also for every single person who cares about them.

And I care deeply about Josh.

In Response to a Comment

On this post, Robin commented about Josh's violent behavior a year ago and questioned his rapid cycling early this spring.

Robin, when Josh was violent it turned out to be the result of the anti-psychotic that he was on.  It is one of the side effects.  When he stopped the medication, ALL the violent behavior ended.

When Josh was cycling up and down so quickly, he wasn't on ANY medication at all and hadn't been for 9 months or so.  He was experiencing quite a bit of stress in his life at the time.  This is when he actually sought medical help for the first time and the doctor said he was experiencing hypomanic episodes.

Does that clear it up?

Thanks for the comment

It's Just Too Sad

In just ONE week, these are the searches that brought people to this blog:

boyfriend is mean to my bi polar son


can i ever stop worring about my bipolar son


for the love of god i can not handle my bipolar son


how to explain to child that mom has bipolar


meds overcharge


mom of bipolar son


my bipolar son took his life
my perspective on bipolar

my son is 21 and said he has never been happy, always bored


my son is hopeless

What these searches remind me of is twofold.  First that there are SO many people struggling as I have with their bipolar children, but secondly, and probably most important to note, is how many people are left to turn to the internet for information and support.

Our society has GOT to get with the program and put an end to the stigma attached to mental illness, and the mental health profession has got to begin doing a better job of educating and supporting not only the Bipolar patient, but the families and loved ones of someone diagnosed with this disorder.

Every single thing I know about Bipolar, I learned from reading books and searching the internet.  It shouldn't BE that way.  When Josh was diagnosed while hospitalized, I received NO information and ZERO support.  Our journey through this disorder could have been so much easier if I had been educated and if there was ongoing support available to assist me as questions and problems cropped up.

I attended our local Bipolar Support Group, and that was incredibly helpful but desperation led me there.  I am 100% convinced that the experience of Bipolar could be very different if more attention was given to education and support of loved ones.

Everyone who reads here and emails me says that it helps to know they're not alone with all this.  Sadly, they are not.  As parents of Bipolar children we are in a club none of us signed up for, and the number of members in this club is staggering.   The saddest truth is that this is a club we'll belong to the rest of our lives.

How true is the search, "can I ever stop worrying about my Bipolar son."

I KNOW the answer to that one.  No.  I don't think it will matter how well Josh is doing, now or in the future, 'worry' will always be there for me, no matter how far in the background I try to force it.

Because of the stigma attached to mental illness, many people don't share their struggle with the people in their lives, but how is the stigma ever going to be diminished if we don't TALK about this? I openly share my experience with this disorder with anyone willing to listen, yet I also try very hard to respect Josh's wishes. His cousins STILL don't know about his illness. I'm sure they wonder, "what the hell happened?" as they've watched their cousin's life spin out of control. But he isn't comfortable sharing this with them, and so they're left to wonder.

Things have to change and each one of us are responsible for making that change happen.  I for one am beginning the process of identifying how to do that.  I have no idea WHO to contact, but I'm going to go back to the internet and figure out the best options for having my voice heard.

I refuse to struggle in silence.  This blog has allowed me to connect with people who are struggling as I am, but I feel compelled to take my story to a broader audience.  It's not enough to get through the tough times, I want to make people's struggles easier in the future.

Oh the Difference!

Josh began working last week and so far he's enjoying it.  He's worked four days in a row, pretty long days, and when he stops by after work, he's tired.

But he's also very happy, full of stories about the dogs he worked with that day.  He's finding the differences in dogs very interesting and their different personalities amuse him.

As I've spent time with Josh over the last month, the changes in him are stunning.  His mood is very stable, the Josh I saw yesterday, is the same Josh who will walk in my door today.  As he prepared to begin this job, there seemed to be very little anxiety about it; what I would consider to be 'normal' anxiety.  He hasn't taken his anxiety medicine in months, feeling like he doesn't need it.

He told me recently that he considers himself to be happy and that the anti-depressant seems to have really made a difference for him.  Yet, he also feels like he's 'boring', "my thoughts are so boring to me, I miss my insane mind."

We discussed this, the fact that many people who are on medications for Bipolar feel that way.  "But Josh, an insane mind doesn't produce a happy, successful life.  The doctor is going to begin removing some of your meds soon, so maybe you'll find that some of the creative thoughts you're missing will return."

Here's an example of a change I see in Josh that really surprises me.  He gets up for work two hours before he needs to leave, feeling like he enjoys some time in the morning before work.  This from my son who has always hit the snooze button until the last possible minute, or beyond, IF he even heard the alarm at all.  He sets FOUR alarms, afraid of oversleeping, but wakes up every day when the first alarm goes off.  "Then I have to run around and shut off the other three alarms, it's kinda nuts!"   His sleep schedule is right side up for the first time in a long time.

It's these seemingly small changes in Josh's general routines that surprise me, in a good way.

I've also noticed that he willingly does things to help me out; small things, but in the past if I'd asked Josh to, say, help me move something, he'd have balked and complained and acted as if I'd asked him to rebuild my house from the ground up.

The journey to THIS place has been so long and difficult, and I feel so blessed that every single day I get to actually 'enjoy' my son again.

Will this last?  Who knows, and that's probably one of the more difficult aspects of this disorder.  So many people struggle and finally find 'normal', only to lose it again somewhere along the line.

I've been in this living hell called Bipolar long enough to know that my job right now as Josh's mother is to be there for him as he begins rediscovering life.  I am mindful of the facts; I know this could all go tits up at any time, but I have laid my fears of this aside and tasked myself with simply being in each individual moment, and I thank God when I pray every night and ask that God continue to move through Josh's life.

He Got the JOB!!!

Josh got the job he was wanting.  Hopefully things will continue looking up for him.

He deserves it, he's a good kid who has gone through hell.

Almost a Month to the Day Later

It's been almost a month since I posted my last fairly frantic post.  Josh is still in treatment and doing fairly well mood wise.

He's yet to find a job, although he HAD a job offer contingent on passing a drug test.  But, oh, he had smoked pot with his friend a week and a half or so prior to the drug test, so who knows if he'll actually pass it and get the job or not.  If he doesn't, I HOPE it is a lesson for him.

He has made reference to his 'bipolar' lately, as if he might actually accept that he has it.

In this journey I remind myself to look at how far we've come.  He's in treatment, his mood is pretty stable, he actually cares about keeping his apartment clean, his laundry done.  He's trying to eat more healthy foods and he's been working out regularly, and it shows.

During the first two months on medication he had gained 25 pounds.  He needed the extra weight, but he has turned it all into muscle.  He looks really good.

So that's where we are today.  I try very hard to appreciate the positive changes and have patience with the job thing, but sometimes I get frustrated.  Still, in the end, I'd rather have him where he IS than homeless, or in a psych ward or dead.

I appreciate all your comments and the private emails I receive.  It all makes me realize just how many parents are struggling right along with me and my heart and prayers go out to each and every one of you and your children.

It's Never Easy

Josh's continued unemployment concerns me, for two reasons.  One I think a job would help him get on a much needed schedule; add some structure to his life, plus he's bored and lonely, so it would help with that.  And of course secondly, I'd like him to begin supporting himself.  It is a financial burden to be totally supporting him right now.

He can't seem to get his sleep turned round.  He sleeps all day, until 4 or 5 PM.  He needs to be up during daytime hours so he can actually look for a job!

In addition to that concern, I'm concerned in general.  He still doesn't really WANT to believe he's bipolar and the things he's said make me realize that he isn't looking at medication as a long term thing.  He'd love to not be taking them.

So I called his therapist yesterday to voice my concerns.  Josh has never signed a release form so that I can communicate with his new doctors, so I knew that I would only be able to give information to his therapist; his therapist wouldn't be able to give me any information.

I told his therapist of my concerns, that I'm totally supporting Josh, what our arrangement is, and that I'm frustrated that Josh's sleep schedule is such that it doesn't help with the job search.  I told him that I never know how hard to push Josh, not wanting to create anxiety or stress for him, but also not knowing which side of that fine line between enabling and helping I'm walking on.  I told him Josh still doesn't really accept the diagnosis and isn't thrilled being on meds.

He asked me, "Do you believe Josh is Bipolar?"

"Yes.  It breaks my heart, but I've learned enough about it to be pretty sure he's gotten the right diagnosis.  I can't find anything else that explains what happened to his life.  He was my easy child, and while he'd tell you he's never been happy, I would tell you that through his high school years, he was an easy going, fun loving, responsible...great kid.  And then it all went south, his life got totally derailed.  But he doesn't accept this diagnosis yet and he told me the other day he wants to move to his dad's property eventually and stop taking his meds so he can be HIM again."

I got pretty emotional as I talked, I'm sure the guy probably thinks I'm either A) a very loving and concerned mother or B) a complete and total nut case.

Either way, he said, "Well, this is very helpful information to have.  Actually, I see Josh tomorrow and I'm going to tell him I've talked to you and ask him to sign a release form because I think having you involved could help the process along."

"Well, Josh is coming for dinner tonight and I'll tell him I talked to you too, but he may be resistant to signing a form.  He might even be mad I called you, but you know, I'm SO glad he's in treatment, but I still see his mood shifting around and in general I worry about him."

"Well, I'm worried about him too, actually very concerned."

"Are you afraid he's suicidal?"

"He says he's not, but....and I can't say too much here, but I'm very concerned about his hopelessness, I've actually called him several times just to check on him."

"Yes, he doesn't see how anything good is in his future, his negativity is a real problem."

"Yes.....but that's about all I can say right now."

"Well, I've considered coming down a bit harder on him, pushing him to get his sleep turned around and work harder at getting a job.  But like everything else with this disorder, I never know HOW to handle any of this."

"Right now, I think pushing him at all would not be a good idea.  We're at the beginning of this stuff and I think we need to work on where his head is at right now and I don't think he can handle much stress right now."

"OK.  And see, that's the kind of help *I* need with this.  I'm like a fish out of water, I never know the best thing to do."

We ended our conversation and I thought about how I would even tell Josh that I'd talked to his therapist.  I knew there was a good chance he'd be angry.  I have at least gotten better at gauging his mood and knowing when to try to talk to him about things.  I hoped his mood when I saw him would allow us to talk about this.

When Josh came for dinner, it seemed initially that he was not in a great mood.  He'd brought laundry with him to do and was trying to carry it in and my new puppy was all over him.  She loves him.  When I say, "Josh is coming to see you later!" she walks over to the front door expecting him to BE THERE.

As a side note, the happiest I see Josh lately is when he's with my two dogs.  The older dog always loved him, then during the time leading up to his mania, he would get so angry and yell, etc, and it scared our dog.  THEN when he came home from the hospital, the seroquel he was on caused terrible rages, and those rages REALLY scared our dog.  She remained frightened of him for most of the last year, not quite sure about him anymore.  Happily, their relationship has improved since Josh moved out.  He is so happy to see her, she can't help but realize that he's safe to love again.

But anyway, when he came in last night he seemed a bit frustrated, but he quickly began laughing and smiling again as he played with the dogs and talked to me.  At one point, there was a natural segue for me when he was talking about his therapist.

"Yea, I actually talked to him today on the phone."

"Why?!!"

"Well, I'm concerned about you honey and mostly I wanted to get some guidance from him."

"You worry too much!  Why can't you just stop worrying and let me live my life?"

"Well, part of it is that I'm totally FUNDING your life right now Josh, and your sleep schedule isn't conducive to really finding a job, but mostly, I don't really know what you're capable of doing right now.  I thought he could help me with that.  I'm trying to HELP you and I don't want to be doing things that might not be helping.  He's going to ask you to sign a release tomorrow so that he and I can talk, NOT about personal things, but so that, in general, he can guide me to help you better."

"Well, I'm not signing a release form, and Mom, you're doing all you can right now.  Like this, just having me over or dinner or when we go to the movies.  Those are the things you do that help me, the rest I've just got to figure out."

"OK, well, that's your choice, but try to look at it from my perspective.  I'm PAYING for all your visits and if it would HELP the process, why wouldn't you allow me to talk to him?"

"Because I like him mom.  He's the first therapist I've had that I actually like, and that's important, and I don't want you telling him lies and interfering.  Because if you get involved, I'll have to be looking for a new therapist again."

Josh feels like when he and I saw his therapist, Peter, during the time right after his suicidal period, leading up to his mania, that I 'lied' to Peter.  Actually, I sat there with the two of them and was HONEST about Josh's behavior.  His refusal to help with chores, get out of bed for class, his disrespect towards me etc.  We were trying to slowly get him to take responsibility for himself, and he's STILL struggling with many of those same issues.  But he views all that as me lying to his therapist.

But I understand Josh's position....to a point.  His relationship with his therapist is vital and I DON'T want to do anything to change that.  I think more than anything Josh felt like it was Peter and I AGAINST him, when in fact we were both trying to help.  The way he views what happened with Peter is WRONG, but it's his perception and so I have to keep that in mind.

Throughout the night, Josh would bring up the subject of signing a release.  "How do you think it would help?"

"Well Josh, sometimes I don't KNOW what to do, but more important I don't know what NOT to do.  He could help me with that."

Even though we talked about it a lot all night, Josh never really changed his mind.

So I'm going to leave a message for his therapist to call me today before he sees Josh tonight and tell him that Josh didn't seem willing to have me get involved and that I'd rather the therapist not push it too hard right now.  But I need to tell him that in dealing with Josh, the one thing he needs to know is that while Josh was doing very well up to the time his Bipolar began impacting him, that he has ALWAYS been immature, even as a kindergartner, he lagged behind his peers in maturity and THAT is about HALF of the problem we're facing.  I think his therapist needs to know this to effectively work with Josh.  He needs to know that even before Bipolar, while Josh was happy and a good student and responsible with his schoolwork and his part time job work, he NEVER stepped up to the plate, he never wanted to really grow up.  He was often disrespectful to me (NEVER anyone else), lazy and unmotivated (doing his schoolwork and his job work, but never doing MUCH else) and all those negatives were magnified by the Bipolar.

I told Josh last night how glad I am that he's in treatment and that I think his short term goal right now should be continuing to work on his life skills (he's begun working out more, is more conscious of eating regularly, has been working with his therapist on social skills etc) and one he really needs to try very hard to address is his sleep schedule.  "You need to be militant about a set bedtime, and stay within an hour or two of it.  You just can't allow yourself to keep sliding back to sleeping during the day honey."

And I told him that he should probably stop looking for full time work and find a part time job that fits his daytime schedule and is the type of job that has as little stress as possible.  "Listen, I know you feel you NEED a full time job, but I think we should take baby steps here honey.  Since you've started your medication we don't KNOW what you can handle stress wise, so lets start small.  While ultimately I'd like you to be able to fully support yourself, for right now if you're only able to cover your gas and groceries with your job, that's enough."

He told me how badly he wants to work.  How hard it is to have all this time on his hands.  "Don't you think I want the same thing you do?  I hate living like this Mom, I WANT to work."

He also said he'd like to run for exercise but he has no running shoes, "And even if I WAS working, I probably couldn't afford them anyway."

Because I WANT him to develop good health habits, I'm going to tell him to take my charge card and buy a pair of running shoes.  It might be a waste of money; he might get them and then never really develop the habit of running, but it's important enough that I'm willing to spend the money in the hopes he will run.  I'll tell him that he needs to start slowly with it, but run everyday and that within just a few weeks he will have developed the habit of running.  It could be a lifelong positive addition to his life.  He could use the endorphins if nothing else.

I'm able to continue supporting him now that I have a new job, but on the other hand, every dime I spend on him is one dime I could be applying towards the debt I've amassed over the last couple of years, so I WANT him to eventually be able to stand on his own two feet.

He did ask me last night, "Do you think I should consider disability?"

"Well, that's up to you Josh, the only problem I see with it is what your social worker told me, that it WILL limit your life.  We don't really know yet what you are capable of handling, you just started meds, so my opinion would be not to do it YET, it's something we can always do later if we find you just can't handle full time work."

"OK.  Sometimes I feel like I can, and other times I'm afraid I can't."

We also talked about his old bedroom.  I was going to have my handymen paint it, for $200.  "You know Josh, when I asked you if you'd help me paint your old room, there was NO WAY you would help me.  That kind of hurts.  You know what I've been through lately; all I've had to do around here, and it hurts that in spite of all I've done to help YOU, you don't WANT to help me out.  I'm not trying to make you feel guilty, I'm trying to point out that sometimes in life it's appropriate to help others, not only is it appropriate, it can make you feel good that you were able to help someone.  I'm spending so much money helping you, I hate to spend more money to have that room painted."

"How much are they charging you?"

"$200"

"Yea, that's almost half my rent........well, I'll paint it, but will you help me?  I've never painted a ceiling before, and it would be nice if we did it together."

"Of course I'll help, but I've never painted a ceiling before either.  I've never painted WALLS before, but I'm pretty good at trim work now!"

You can bet that when we get the room painted, he's going to get a lot of positive comments from me, about how good of job he did, how much I appreciate it and all that.  I think he NEEDS that so he can learn how nice it does feel to help others out.  There are so many lessons like this that he should have learned by now, and I can't help but feel I've failed him as a parent in these areas.  But it's never too late to learn!

So, as usual, we're not where we need to be, but we seem to be continually moving forward, no matter how small the steps seem to be.