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.

Forward Movement Would be Nice

It will seem a bit ungrateful of me to say this, but I'm beginning to feel pretty frustrated with Josh.

I am SO glad that he's on medications and seeing a therapist.  For that alone I will be eternally grateful, but since that process began, and he quit his highly stressful, night job, nothing much else has happened.

It's been six weeks (six weeks where he has one of MY credit cards to use for gas and food, etc.  Six weeks of me paying all his bills), and he still hasn't found work.

I have told him, over and over again, that applying for jobs online probably isn't going to get the job done.  "You need to walk in and fill out an application and then follow up the next day with a call when there is a place with a sign advertising help wanted.

I can't get him to do this.

He saw his therapist yesterday and then he and I went out for dinner. 

"I have something to ask you Mom."

"OK."

"Well, when my lease is up, how would you feel about me living with you again?"

Not good, that's the real, true answer, but of course I didn't SAY that.

"I don't know, it would depend on a lot of things I guess.  Why would you want to do that though?  I thought you wanted the independence of a place of your own."

"Well, I want a HOME of my own, not an apartment.  If I could live with you for a year or two, I could save money for a house.  Dad said that I could build a cabin like his, on his property, and if I paid for the shell, he'd help me finish the interior.  It's only $5,000 for the shell."

"OK, but I imagine the interior stuff has got to run $10,000 or more."

"You think it would be that much, even if we did all the work?"

"Probably.  You're talking kitchen and bath fixtures, kitchen appliances, a heating/ac unit, so yea, with insulation, plumbing, electrical, drywall, I bet it could be at least that.  Then there's flooring too."

"Well, I guess I'd have to live with you more like two years then."

"Well Josh, I'm open to discussing it as we get closer to the time that your lease runs out, but for right now, you need to get a job.  I'm a little concerned though, at the thought of you living in such isolation.  I know there's a town close by where you could possibly find work, but all your friends will be several hours away from you.  I'm not sure if that's the best thing for you.  And I hate the thought of you being that far away from me too, with no cell phone reception."

"I guess I'd have to make new friends.  Maybe it's a pipe dream, but I feel like I want to be ME again.  On this medicine, well, I function better and the anti-depressant has helped too, but this isn't me."

"I know you'd love to live surrounded by the woods and all, but Josh, without medication you'd be living in a bad mental state most of the time.  It would become hard for you to hold down a job again.  While it SOUNDS like an answer to you, I can see many problems with the whole thing, but we can talk about it further in six months or so, ok?"

So even though my boy is on medication and doing better, this isn't something he can see himself doing long term.  I'm not terribly shocked by that, yet it still disheartens me.

I'm going to leave a message for his therapist and ask that he call me.  While he doesn't have permission to share information with ME, I feel the need to share my point of view with HIM. Josh sees him again Wednesday, and it doesn't escape my notice that this therapist is scheduling Josh twice a week now, instead of once every two weeks.  I'm sure he sees a real need for intervention here and so do I, so I'll intervene as I'm able.

But no, I don't want Josh living here.  I don't think that's in his best interest or my own.

Oh, and he's gained TWENTY pounds since starting his meds.  It looks GOOD on him, it does, but much more weight and it's NOT gonna look so good on him.

The Halfway Point

Three months ago I offered to help Josh re-establish his life by supporting him in a studio apartment for six months.  The original plan was for him to contribute to his support in increasing amounts during the six months, so that by the end of the six months, he would be able to completely support himself.

Here we are at the halfway point, and he's unemployed.

Not exactly what I had in mind.  While you could look at this and say this experiment has been a dismal failure; it certainly hasn't played out according to plan, I would say that we're headed in the right direction.

Josh is in treatment; on medications and in weekly therapy.  That alone is worth the money I've spent.

God has answered my prayers in bringing Josh to this point.  I've prayed for lots of things over the last year or so, because Josh's situation isn't the only thing I've been struggling through, in fact, I can think of no other time in my life when I've had AS MUCH to deal with, and I feel strongly that if God is only going to answer ONE of my prayers, this is the ONE I'd want him to address.

And he has.  I continue to ask God to walk with Josh and give him strength and guide him to true acceptance.

But lucky me!  God has also answered several of my other prayers.  He has helped ME in accepting the ending of my personal relationship and he's given me the strength to move forward with my life.

He's also answered my SECOND most important need.  He has put a job opportunity in my path that will allow me to climb out of debt and continue to support Josh financially as long as necessary. 

The relief *I* feel to have Josh in treatment AND my financial situation addressed is HUGE.

Josh considers himself to be agnostic, yet I have a deep faith in God.  Even Josh said not too long ago, "I don't know Mom, you look around at the world, all the beauty and wonder, HOW our bodies are so intricate, how we reproduce.  It's all so finely honed, it almost makes ME believe that a higher power must be at work."

I know that for me, sometimes the ONLY thing that helps when faced with a crisis, is my faith that there is a higher power at work in all of it.  When I'm able to turn my problems over to God....things always seem to begin heading in a better direction.

I spent a lot of time early in Josh's diagnosis holding onto it all so tightly, afraid to let go and let God because I suppose I was angry.  If God could LET THIS HAPPEN, how could I ever trust him to handle it? 

Silly me. 

Eventually, as the stresses in my life began piling up, I had no choice but to turn it ALL over to God.  Certainly when basic functioning was becoming a problem for me, I realized that *I* was powerless over almost ALL of my concerns.

I sit here today with hope, something I haven't felt in a long time.  While I know Josh may continue to struggle with acceptance, that he may give up the fight, I also know that no matter what happens, I'll get through it.  With the help of my friends and family, and my faith.

You might find it interesting that I don't attend church.  I was raised in the church, and have turned to the church sporadically as an adult, but I sit here on a Sunday morning blogging, not in a church pew.  In spite of the fact that I don't 'worship', I feel I have a strong relationship with God. 

My faith has been shaken this past year or so, and I've had to remind myself of the story of Job...that perhaps my faith was just being tested.  I don't KNOW, I'm not able to enter into a deep philosophical discussion on the matter, I only know how I feel about my relationship with God.

Perhaps there IS no God and all my praying is received by no one.  Maybe it only serves to calm me and bring me a new awareness of how I need to move through my challenges.  Whatever is at play, it works.

I believe in God for the same reasons Josh expressed.  SOMEONE much bigger than me created all of this, and while I believe that God gives us free will, I also believe that he guides our lives.  He gives us challenges so that we can learn and grow.  What I have learned this last year or so, will guide the remainder of my life...I can apply these lessons to all areas of my life.

Let's hope that Josh is able to find work soon.  Not so that I can relinquish financial responsibility to him, but so that he can begin to rebuild his life.

We've Ramped Up to Where we Are

I wonder if parenting experiences are similar for people who have sons or daughters who have Bipolar.

For me, I realize in looking back, that I 'learned' how to enable Josh, long before I ever knew there was a mental illness at work.

Josh was my 'easy' child.  Always.  The only real difficulty I ever had with him related to his incredibly, over the top, sore loser thing.  Seriously, if this child lost at Monopoly, the board would go flying and he'd stomp off in anger.  As he got older, he got better at taking his losses with something close to grace, but he was always very competitive.

And then this easy child became more difficult.  More combative.  Less easy to reason with.  We could have a fruitful discussion about a current issue one day, and then, two days later his reaction to a continued discussion on the same topic would have him yelling and screaming and slamming doors.

Some of the good skills I use today when communicating with Josh, were established back then, but also, some of the bad skills I developed back then have been in play since Josh's diagnosis.

It has been an ongoing struggle to identify the things that work, and the things that don't, but I can tell you, ALL of it started during the few years before Josh actually began having the types of problems that lead us to a diagnosis.

I remember long chat discussions with a blogging buddy of mine back then, BEFORE Josh began having major problems.  I remember trying many different things to get Josh more in line with where he should be, but his mood was ever changing.  He'd be as lovable as a newborn kitten one day, and a few days later he'd be an angry lion.

I began enabling Josh back then, because so much of the time I was just trying to keep the peace.

Tough love is...well...tough to DO, and back then I had many things going on in my life that made it very easy to 'lighten up' too much on Josh, but once his issues became more severe, I had no choice but to figure out HOW to do Tough love right...consistently....and stick with it.

That has been one of the hardest things for me, because the ramifications of doing something like tossing your child out of your house, has such potential for some serious consequences.

I think that I realize better today just how important it is to take all this with a one day at a time attitude.  Each situation you're faced with as you travel through a new bipolar diagnosis, well, you can only do your best at the time.  But I can clearly see that I was given many opportunities along the way...some of them I didn't embrace as I should have, and others seemed almost 'destined'.

Kicking Josh out of my house was one of the hardest things I've ever done, and certainly I agonized over that decision every single day, but I learned to make peace with the decision and worked on taking care of myself so I could be really strong for the NEXT step, whatever that might be.

I would encourage anyone facing a similar crisis to spend some time honestly looking back to identify how the patterns you use got established in the first place, and when you look back, it's usually easy to see what works, and why, and what you should have done differently.

I'd be curious to know how many parents feel as I do; that all this started long before I realized there was a serious medical issue at play. 

The one thing I've found out for sure is that there is a special skill set you must develop when dealing with a bipolar child who is a young adult, and you also have to develop a pretty thick skin as well.  Josh and I have always shared a very close relationship; his friends were often astounded that he would shout back to me as they flew out of the house on their way to do something, "I love you Mom!". 

Because we've always been close, and because he was always so easy to parent, the disconnect in our relationship that is very much a part of Bipolar, has been especially hard to adjust to, hence the need for the thick skin.  I think Tough Love becomes so much harder to accomplish when dealing with Bipolar...there is so much at stake, so much that can 'go wrong' and I always have a strong feeling of not wanting to do something that might push Josh towards suicide.  I do not want to have to live without him or with THAT guilt the rest of my life!

For me, I've found that looking a ways back has helped me a lot in dealing with this current situation.  Unfortunately, I don't get a 'do over', I can only do better from here forward.

Medication Overload

While the changes in Josh on medication are amazing, he seems to have days when he's not at his best.  His mood at times remind me of 'back then'; back then when he wasn't on meds and he'd be full of negativity and everything *I* do is 'wrong'.  To hear him tell it, when he's in one of those moods, I'm the biggest idiot to ever walk; I don't even know how to park my car correctly.  He is NO FUN to be around when he's like this and I steel myself as I take hit after hit.

I've been worried about these mood shifts, wondering what is causing them.  Is his medication just not dialed in correctly yet?  Is he derailing the process by occasionally drinking?  Is it situational? (He's not yet found a job, so he gets lonely and bored).

He saw his doctor last week, and before his visit he expressed that he wasn't sure what the purpose of the visit was, what he should say to his doctor.

"Well, you need to be honest with him and tell him how you are feeling on these medications.  You're worried about your weight gain (12 pounds since he began his meds just a few months ago), so tell him that, and tell him how long that one med is making you sleep.  He can make adjustments if he knows what you're experiencing.  I think you should tell him that your moods have been shifting a little bit too."

"Mom, everybody has mood swings, so I'm not telling him about THAT."

"Well, your mood swings probably aren't 'normal' mood swings, they're based on your disorder.  You may not SEE them, but I do."

"Well, I'm not telling him that."

Fine!

The doctor added an anti-depressant to Josh's pill regime.

"Why did he add that?"

"Cause I'm depressed?"

"Oh."

The new medication is one that does not have weight gain as a side effect and the doctor feels it might actually help suppress Josh's appetite.  Josh says he feels better with this new med; more focused and more energetic.

As I talked to Josh about all this, I could tell he had done a good job of communicating with his doctor, but he said he feels so anxious when he has to meet with his doctor and therapist.

"You should probably take one of your anti-anxiety pills before your visits." (he takes these only as needed)

"Yea, I think you're right, I think it might help.  I just get so self-conscious when I have to talk to them."

His doctor wants to see him again this Friday to re-check the new med and Josh sees his therapist tomorrow.

Josh needs to find a job; I think things would begin to get 'better' for him if he were working and could finally normalize his schedule.  He wants so badly to work.  He had a job interview last week, but the job was only part time (28 hrs a week) and it's on the other side of town.  We discussed whether he should take this job or not.  Josh feels so badly about the fact that I am supporting him.

"Well honey, I think it's really important that you get the right job.  Whether you take this job or not is your decision, but I don't want you to take it if it's not a situation that's going to really work for you long term.  I'd rather keep paying your bills another month or two if that means you get the right situation in the end."

I gave him several ideas about other places to apply for work, several of them are low end clerical type jobs, but I think a job like that (40 hours in a low key office environment) would be a good jumping off point for him.  It's so hard for someone like Josh (no skills, no college degree) to find a job when so many people are out there looking.

We went to a movie this weekend and afterwards we were sitting at home talking and he said, "I feel so bad for you Mom, you've been through so much with me."

"Well, if you really feel that way, then keep doing what you're doing; seeing your doctor and taking your meds, because I know it's the only way you're going to be able to have a better life."

"Dr H asked me if I believe I'm Bipolar and I told him no."

"What did he say to that?"

"He just scribbled in my chart."

Yea, I just bet he scribbled in Josh's chart...probably a note to this therapist to help Josh with the issue of acceptance.

I cannot imagine what it must feel like to Josh to not 'believe' in his diagnosis, and yet, be treating it.  And because he's in this headspace, I worry that he'll eventually give up the fight and stop his meds.

I have an awful lot of respect for him that he IS doing this though.  I know that right now, his life pretty much sucks, and yet, he's hanging in there.

He has been spending quite a bit of time with his 'good' friends who are home from college for the summer.  I dread when they all go back to school the middle of August because that will put Josh further in isolation.  It would be nice if he has work by then to occupy some his time.

Josh's general demeanor isn't the only improvement I see since he began meds.  He regularly cleans his apartment and that is a gigantic step.  He has always lived like a sloth, but I've told him that my hairdresser, whose husband has bipolar, has told me that her husband MUST HAVE a neat organized home and work environment or she notices it causes him mood problems.  Josh has been keeping his apartment very neat and tidy which amazes me.

As a mother, this journey has been so difficult, and yet, I have had to learn that this isn't MY journey.  Because Josh is in treatment, I feel a huge relief, but I know that anything is possible and I try very hard to just be there for Josh in appropriate ways.  I can only offer guidance and advice, but he gets to make all the decisions.  Right now, for the most part, I see him making mostly good decisions and so I'm able to relax a bit with all of this.

It's very hard to know what is possible 'if only'.  If only he'll stay in treatment.  If only he'd get a job.  But it doesn't escape my notice that NONE of this is in MY control.