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.
Wednesday, July 13, 2011
Monday, July 11, 2011
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.
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.
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.
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.
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?"
"NO!"
"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.
Amazing!
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."
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?"
"NO!"
"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.
Amazing!
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."
Tuesday, May 3, 2011
A LONG Talk with Josh
I was driving to a client appointment yesterday morning when Josh called. I sat in the parking lot at my client's office for over an hour talking to him.
He had a lot to say and finally I asked, "Honey, are you a bit manic today?"
"No, I took an adderall because I have a lot to get done today and it makes me like this."
"Well, be careful with those, I've read that they can trigger a manic episode."
He told me that he's staying at his job, but that he's embarrassed because the night he gave his notice he'd had a 'breakdown', complete with tears.
"Did something happen that upset you?"
"No, nothing at work, but something I was thinking about upset me."
This triggered my memory. As a Junior in High School Josh worked at a local grocery store as a stock boy. He had an emotional breakdown, complete with tears, one night there too. He had been having issues with his Dad and in thinking about that situation, he had a breakdown.
This made me think about some of the other jobs he'd gone through back then. His first job ever was at Target, stocking shelves. He was there maybe six months when he quit because he hated it and the people. Then he worked at the grocery, which he quit and then he worked as a busboy at a local breakfast/lunch restaurant. He quit that job too. Then he landed at the video store, and he worked there for over two years. He was in his element at that job, which is why I think he stayed as long as he did. But it makes me wonder if Bipolar wasn't present back then to some degree.
Anyway, Josh had been reading and reading about schizophrenia in an OLD, OLD encyclopedia set his Dad had given him. He seems to be trying very hard to figure out what's wrong with him.
"Well honey, reading that probably isn't helpful, the information is so outdated."
"Yea but Mom, this Bipolar thing seems so fuzzy, I just can't figure out where I fit into all this."
"Well Bipolar IS fuzzy, it manifests itself so differently in each individual person, but a doctor should be able to wade through it all and make an accurate diagnosis."
I told Josh about Jim Phelp's book and the Mood spectrum he describes and that I've felt that Josh falls on the depressive side with a slight underlying mania that feeds his negative thoughts.
"Yes! Now that sounds like what I'm feeling."
I told him to come by and get my Kindle so he could read the book, that I thought it would be helpful to him.
He talked a lot about how his mind is working and he said he has had a few auditory hallucinations, where he hears music. "Living in an apartment is great though, if I hear something I just assume it's the neighbors."
He was concerned that those hallucinations are an indicator of schizophrenia.
"Well, a woman I know who has Bipolar told me that she has hallucinations too, but that she KNOWS they're hallucinations. A schizophrenic often doesn't realize that what they're experiencing isn't real."
"Well that's reassuring. When I have them, I KNOW they're not real. I guess I've been thinking that since I have those I MUST be schizophrenic."
"No, and really honey, from the reading I did about it, I really don't think you need to worry about that. So many of the symptoms between the two conditions are the same, but you HAVE to have significant hallucinations to qualify as a schizophrenic."
"Oh good. But what about my paranoia."
"Well, do you think people are out to get you?"
"No, not really, it's more like I think people are talking about me and stuff like that."
"What I read about a paranoid schizophrenic is that they SERIOUSLY think people are out to get them, like tapping their phones, poisoning their food, stuff like that. I think maybe your anxiety is what feeds those thoughts that people are talking about you and stuff. I really think that anxiety is a big part of your problem actually and I think a good anti-anxiety medication could really help you, in fact, that could be all you need, I don't know."
"I agree, I think I need something for anxiety."
Josh expressed concerns about the costs of all this care.
"Well, I've kept your health insurance in force and I'm glad I've done that. Yes, this will cost some money, but it will be basic co-pays. Think about how much more expensive it would be if you didn't address this and wound back up in the hospital."
"True, but I know money is so tight for you right now."
"Honey, please don't worry about that, I don't want you stressed about money. You concentrate on getting well and working towards being able to handle your own rent and living expenses."
"Well, I've already got $70 saved up for my June rent. We talked about me giving you $200 this month and that shouldn't be a problem."
Josh stopped by in the afternoon to get my Kindle, use my computer and do some laundry.
I spent a couple of hours with him, but then I had to leave for a late afternoon client appointment. Before I left I told him, "Honey, I am so proud of you. I know this is so hard, all of it, and I'm so proud that you are self aware and intelligent enough to process this and want to get help."
The look on his face told me that he appreciated my comment.
"I keep thinking about things like being on medicine and never being able to drink again. I guess it's hard to accept that there are things I can't do anymore."
I told him about the essay I'd read on acceptance and that the woman who wrote it expressed that very same thing, "but she realized after struggling against this disorder for twenty years, that she could either accept the limitations this presented so that she could stay healthy and have a good life, or she could continue to quit jobs, throw away relationships and travel the country like a vagabond and never really find any satisfaction. "Josh, it's a choice that every Bipolar person has to make. You have to CHOSE to accept the limitations so you can stay healthy."
"Yea, I guess so, but that is hard."
"I know it is honey and honestly, there are people who have Bipolar who are able to occasionally drink in reasonable quantities. They just know that doing so will throw them a little off kilter and they prepare for it and handle it. They know they can't go on a bender, but they can have a beer or two once in a while. Other people just can't drink, either because of the Bipolar or the medication they're on. All this is unknown for you right now and you'll have to figure out as you go along what is possible for you and what actually causes your illness to get worse."
Right now, and really since he moved into his apartment, Josh's mood has stayed in the normal range, possibly leaning alittle more towards mania actually, but the depression has lifted. I know that the depression can settle back in at anytime though and I don't think in a depressive state, Josh would be able to maintain this desire to get help. So for me, time is of the essence here.
I'm waiting for Josh to text me his schedule for this week so I can call the doctor and make an appointment. I will adjust MY schedule to accommodate this.
He had a lot to say and finally I asked, "Honey, are you a bit manic today?"
"No, I took an adderall because I have a lot to get done today and it makes me like this."
"Well, be careful with those, I've read that they can trigger a manic episode."
He told me that he's staying at his job, but that he's embarrassed because the night he gave his notice he'd had a 'breakdown', complete with tears.
"Did something happen that upset you?"
"No, nothing at work, but something I was thinking about upset me."
This triggered my memory. As a Junior in High School Josh worked at a local grocery store as a stock boy. He had an emotional breakdown, complete with tears, one night there too. He had been having issues with his Dad and in thinking about that situation, he had a breakdown.
This made me think about some of the other jobs he'd gone through back then. His first job ever was at Target, stocking shelves. He was there maybe six months when he quit because he hated it and the people. Then he worked at the grocery, which he quit and then he worked as a busboy at a local breakfast/lunch restaurant. He quit that job too. Then he landed at the video store, and he worked there for over two years. He was in his element at that job, which is why I think he stayed as long as he did. But it makes me wonder if Bipolar wasn't present back then to some degree.
Anyway, Josh had been reading and reading about schizophrenia in an OLD, OLD encyclopedia set his Dad had given him. He seems to be trying very hard to figure out what's wrong with him.
"Well honey, reading that probably isn't helpful, the information is so outdated."
"Yea but Mom, this Bipolar thing seems so fuzzy, I just can't figure out where I fit into all this."
"Well Bipolar IS fuzzy, it manifests itself so differently in each individual person, but a doctor should be able to wade through it all and make an accurate diagnosis."
I told Josh about Jim Phelp's book and the Mood spectrum he describes and that I've felt that Josh falls on the depressive side with a slight underlying mania that feeds his negative thoughts.
"Yes! Now that sounds like what I'm feeling."
I told him to come by and get my Kindle so he could read the book, that I thought it would be helpful to him.
He talked a lot about how his mind is working and he said he has had a few auditory hallucinations, where he hears music. "Living in an apartment is great though, if I hear something I just assume it's the neighbors."
He was concerned that those hallucinations are an indicator of schizophrenia.
"Well, a woman I know who has Bipolar told me that she has hallucinations too, but that she KNOWS they're hallucinations. A schizophrenic often doesn't realize that what they're experiencing isn't real."
"Well that's reassuring. When I have them, I KNOW they're not real. I guess I've been thinking that since I have those I MUST be schizophrenic."
"No, and really honey, from the reading I did about it, I really don't think you need to worry about that. So many of the symptoms between the two conditions are the same, but you HAVE to have significant hallucinations to qualify as a schizophrenic."
"Oh good. But what about my paranoia."
"Well, do you think people are out to get you?"
"No, not really, it's more like I think people are talking about me and stuff like that."
"What I read about a paranoid schizophrenic is that they SERIOUSLY think people are out to get them, like tapping their phones, poisoning their food, stuff like that. I think maybe your anxiety is what feeds those thoughts that people are talking about you and stuff. I really think that anxiety is a big part of your problem actually and I think a good anti-anxiety medication could really help you, in fact, that could be all you need, I don't know."
"I agree, I think I need something for anxiety."
Josh expressed concerns about the costs of all this care.
"Well, I've kept your health insurance in force and I'm glad I've done that. Yes, this will cost some money, but it will be basic co-pays. Think about how much more expensive it would be if you didn't address this and wound back up in the hospital."
"True, but I know money is so tight for you right now."
"Honey, please don't worry about that, I don't want you stressed about money. You concentrate on getting well and working towards being able to handle your own rent and living expenses."
"Well, I've already got $70 saved up for my June rent. We talked about me giving you $200 this month and that shouldn't be a problem."
Josh stopped by in the afternoon to get my Kindle, use my computer and do some laundry.
I spent a couple of hours with him, but then I had to leave for a late afternoon client appointment. Before I left I told him, "Honey, I am so proud of you. I know this is so hard, all of it, and I'm so proud that you are self aware and intelligent enough to process this and want to get help."
The look on his face told me that he appreciated my comment.
"I keep thinking about things like being on medicine and never being able to drink again. I guess it's hard to accept that there are things I can't do anymore."
I told him about the essay I'd read on acceptance and that the woman who wrote it expressed that very same thing, "but she realized after struggling against this disorder for twenty years, that she could either accept the limitations this presented so that she could stay healthy and have a good life, or she could continue to quit jobs, throw away relationships and travel the country like a vagabond and never really find any satisfaction. "Josh, it's a choice that every Bipolar person has to make. You have to CHOSE to accept the limitations so you can stay healthy."
"Yea, I guess so, but that is hard."
"I know it is honey and honestly, there are people who have Bipolar who are able to occasionally drink in reasonable quantities. They just know that doing so will throw them a little off kilter and they prepare for it and handle it. They know they can't go on a bender, but they can have a beer or two once in a while. Other people just can't drink, either because of the Bipolar or the medication they're on. All this is unknown for you right now and you'll have to figure out as you go along what is possible for you and what actually causes your illness to get worse."
Right now, and really since he moved into his apartment, Josh's mood has stayed in the normal range, possibly leaning alittle more towards mania actually, but the depression has lifted. I know that the depression can settle back in at anytime though and I don't think in a depressive state, Josh would be able to maintain this desire to get help. So for me, time is of the essence here.
I'm waiting for Josh to text me his schedule for this week so I can call the doctor and make an appointment. I will adjust MY schedule to accommodate this.
Sunday, May 1, 2011
Not Even Sure What to Title This Post
Something pretty amazing has happened and while I should be on Cloud 9, I'm kind of surprised that my feelings are what they are.
Let me explain.
Yesterday I was home all day because I was having a Garage Sale. Friday Josh asked if he could come over Saturday and use the computer to apply for jobs online.
So I was expecting him yesterday, but he never showed up.
About 4 o'clock I began getting worried about him, so I texted him, "I thought you were coming over today."
No response.
By 5 o'clock, I was beginning to get really worried. My BF tried to relieve my fear by saying, "He probably got off work really late (he worked at 10PM) and didn't get to bed till 4 or so this morning. He's probably just asleep."
So I tried not to worry. The BF and I had plans to go out, so we went. But the entire time I kept checking my phone.
Josh finally called, he'd just gotten up and seemed a little put out that I wasn't home. "Well honey, you can go to the house and use the computer." He said, "OK," but he sounded 'weird' to me.
A few hours later he called me, "Mom, I'm sorry to bother you but I really need to talk to you about something."
"You're not bothering me honey, what'd you need?"
"You know you talked about taking me to that Bipolar doctor? Well, I think you need to make an appointment for us."
I was completely taken aback by this, and for some reason, at times like this with Josh I try to react very nonchalantly. I did this when he was manic. The entire time he was behaving like a 'crazy' person, I tried very hard not to let him KNOW that I thought he was behaving like a 'crazy' person. It's the strangest thing, I don't understand why I do this, but I do, and for some reason I didn't want Josh to sense my true feelings at this moment when he asked me to take him to a psychiatrist.
"OK. Well I researched that doctor that was referred to me and I wasn't very happy with what I found so I didn't look further, but I'll get right on that Monday honey. I just want to make sure we get in front of the right doctor."
"OK, I love you."
"Love you too honey."
And we hung up.
I turned to my BF and said, "You won't believe this. Josh asked me to take him to a Bipolar doctor."
"Wow."
"Yea. God, I wonder what made him decide this."
The BF must be like me, cause his reaction was about as nonchalant as mine, but I think we were both sitting there just thinking about it.
"I wonder if he began to regret quitting his job, you know, maybe in a different 'mood', he looked back on it and maybe saw that something bigger was at play when he made that decision."
My BF said, "Well, he could talk to them, just explain he's been under a lot of stress with his move and the new job and all and ask if he could stay."
"From what he's said, I think they like him and it sounds like they think he's doing a good job, so maybe they would let him stay."
And we sat there and thought some more about it and I was wishing I'd asked him more about his change of heart. I was having such mixed emotions. This came out of thin air.
Then Josh called me back.
"Mom, I think I need to tell you something else, when I went to the house, I didn't look for jobs online, I did some research and when you're looking for a doctor, you need to find a doctor who can really make a good diagnosis cause I'm beginning to think that maybe I'm not Bipolar, I think I might be schizophrenic."
"Really? Why do you think that, do you hear voices and have hallucinations? I mean, I don't know much about schizophrenia, but I always thought that was one of the big differences between it and Bipolar."
"Just read about it Mom, there are four basic kinds of schizophrenia, and I kinda see myself a little bit in each of them."
"OK, I"ll research that, and I'll make sure that we find a really good doctor honey, but Josh what brought this on, I mean, are you regretting quitting your job?"
"I don't know."
"Well, if you are, I think you could talk to them about that."
"I talked to my manager last night and she said I could stay, and I'm gonna talk to her again tonight, but I don't know."
"OK, I want you to do what's best for you honey, only you know how you're feeling."
We hung up and I was totally wigged out. "Josh says he thinks he might be schizophrenic and I don't really know much about that disorder except that in reading about Bipolar it seems like schizophrenia is so much worse, so much harder to treat and all."
I got pretty worked up, mostly I was feeling so sad for Josh, that he was going through all this and I was thinking about how he must be struggling so much trying to figure out what is 'wrong' with him.
I began crying thinking of Josh, normal and happy, just a few short years ago.
"Well," my boyfriend said, "this is a start at least."
"Yes, but I guess I'm feeling like that's all it is, just a start. Tomorrow his mood could change and he'll be back to total denial, or during the process of finding the right medication he could hate the process; the way the medication makes him feel to the point of giving up. I'm glad he's taking this step, but I guess I'm realizing what a long road lies ahead of him."
Of course, the first thing I did when I got home is research schizophrenia, and I'm not an expert, but I just don't 'see' Josh as schizophrenic. He never answered me when I asked if he's hearing voices or having hallucinations, so I don't know if he's having those major hallmark type symptoms. The only other area of schizophrenia where I think he fits is paranoia. He's never expressed feelings of people being out to get him, but he recently said that he doesn't trust anyone and therefore he doesn't trust what anyone says to him. This statement was in relation to his job, that his manager said he's doing a good job, but that he doesn't trust anything anyone says anymore.
One of the types of schizophrenia is called catatonic. In this state people just stare into space, sometimes for hours at a time, not blinking. But it also describes people with this disorder to be, well, I guess, unemotional. Incapable of joy or anger. Josh may see himself here in the sense that he feels no joy with life, but he has no problem expressing his anger, so again, I don't see him in this, and he's never appeared catatonic to me, even for short periods of time.
So, I don't know. What I did read is that Bipolar and schizophrenia are often misdiagnosed for each other because there are many similar symptoms, but it seems to me in my reading that hearing voices or having hallucinations HAS to be present and ongoing for a month for a diagnosis of schizophrenia to be made. I'm praying he's wrong because it does sound much harder to treat schizophrenia than Bipolar.
So I'm scared and unsettled. Nothing new here really, I've been scared and unsettled for over a year now. It was just over a year ago that Josh was hospitalized. It has been the longest year of my life.
I have to pass this on too. I spoke with Josh's brother Friday, telling him that Josh had quit his job and I expressed how helpless I felt. We talked about the financial ramifications of all this on me and how impossible it is to talk to Josh about all this stuff.
I got an email from Josh's brother late that night. He sent me links to a bunch of sites that offer financial assistance and medical support for someone with disabilities, including Bipolar.
"I don't know what we're gonna do with that kid, but maybe you could call some of these places and get some help with all this, for you and for him."
I thought that was sweet of him to take the time to look into this stuff.
Clearly we all want Josh to get 'better'. We all realize there is no cure, but there is a path forward for him and I'm trying to not project into the future very far and just be glad that Josh has finally put one foot on that path.
On a lighter note, I hope Josh doesn't have schizophrenia because when I spell checked this post, I had spelt it wrong about half the time. Bipolar is much easier to type.
Let me explain.
Yesterday I was home all day because I was having a Garage Sale. Friday Josh asked if he could come over Saturday and use the computer to apply for jobs online.
So I was expecting him yesterday, but he never showed up.
About 4 o'clock I began getting worried about him, so I texted him, "I thought you were coming over today."
No response.
By 5 o'clock, I was beginning to get really worried. My BF tried to relieve my fear by saying, "He probably got off work really late (he worked at 10PM) and didn't get to bed till 4 or so this morning. He's probably just asleep."
So I tried not to worry. The BF and I had plans to go out, so we went. But the entire time I kept checking my phone.
Josh finally called, he'd just gotten up and seemed a little put out that I wasn't home. "Well honey, you can go to the house and use the computer." He said, "OK," but he sounded 'weird' to me.
A few hours later he called me, "Mom, I'm sorry to bother you but I really need to talk to you about something."
"You're not bothering me honey, what'd you need?"
"You know you talked about taking me to that Bipolar doctor? Well, I think you need to make an appointment for us."
I was completely taken aback by this, and for some reason, at times like this with Josh I try to react very nonchalantly. I did this when he was manic. The entire time he was behaving like a 'crazy' person, I tried very hard not to let him KNOW that I thought he was behaving like a 'crazy' person. It's the strangest thing, I don't understand why I do this, but I do, and for some reason I didn't want Josh to sense my true feelings at this moment when he asked me to take him to a psychiatrist.
"OK. Well I researched that doctor that was referred to me and I wasn't very happy with what I found so I didn't look further, but I'll get right on that Monday honey. I just want to make sure we get in front of the right doctor."
"OK, I love you."
"Love you too honey."
And we hung up.
I turned to my BF and said, "You won't believe this. Josh asked me to take him to a Bipolar doctor."
"Wow."
"Yea. God, I wonder what made him decide this."
The BF must be like me, cause his reaction was about as nonchalant as mine, but I think we were both sitting there just thinking about it.
"I wonder if he began to regret quitting his job, you know, maybe in a different 'mood', he looked back on it and maybe saw that something bigger was at play when he made that decision."
My BF said, "Well, he could talk to them, just explain he's been under a lot of stress with his move and the new job and all and ask if he could stay."
"From what he's said, I think they like him and it sounds like they think he's doing a good job, so maybe they would let him stay."
And we sat there and thought some more about it and I was wishing I'd asked him more about his change of heart. I was having such mixed emotions. This came out of thin air.
Then Josh called me back.
"Mom, I think I need to tell you something else, when I went to the house, I didn't look for jobs online, I did some research and when you're looking for a doctor, you need to find a doctor who can really make a good diagnosis cause I'm beginning to think that maybe I'm not Bipolar, I think I might be schizophrenic."
"Really? Why do you think that, do you hear voices and have hallucinations? I mean, I don't know much about schizophrenia, but I always thought that was one of the big differences between it and Bipolar."
"Just read about it Mom, there are four basic kinds of schizophrenia, and I kinda see myself a little bit in each of them."
"OK, I"ll research that, and I'll make sure that we find a really good doctor honey, but Josh what brought this on, I mean, are you regretting quitting your job?"
"I don't know."
"Well, if you are, I think you could talk to them about that."
"I talked to my manager last night and she said I could stay, and I'm gonna talk to her again tonight, but I don't know."
"OK, I want you to do what's best for you honey, only you know how you're feeling."
We hung up and I was totally wigged out. "Josh says he thinks he might be schizophrenic and I don't really know much about that disorder except that in reading about Bipolar it seems like schizophrenia is so much worse, so much harder to treat and all."
I got pretty worked up, mostly I was feeling so sad for Josh, that he was going through all this and I was thinking about how he must be struggling so much trying to figure out what is 'wrong' with him.
I began crying thinking of Josh, normal and happy, just a few short years ago.
"Well," my boyfriend said, "this is a start at least."
"Yes, but I guess I'm feeling like that's all it is, just a start. Tomorrow his mood could change and he'll be back to total denial, or during the process of finding the right medication he could hate the process; the way the medication makes him feel to the point of giving up. I'm glad he's taking this step, but I guess I'm realizing what a long road lies ahead of him."
Of course, the first thing I did when I got home is research schizophrenia, and I'm not an expert, but I just don't 'see' Josh as schizophrenic. He never answered me when I asked if he's hearing voices or having hallucinations, so I don't know if he's having those major hallmark type symptoms. The only other area of schizophrenia where I think he fits is paranoia. He's never expressed feelings of people being out to get him, but he recently said that he doesn't trust anyone and therefore he doesn't trust what anyone says to him. This statement was in relation to his job, that his manager said he's doing a good job, but that he doesn't trust anything anyone says anymore.
One of the types of schizophrenia is called catatonic. In this state people just stare into space, sometimes for hours at a time, not blinking. But it also describes people with this disorder to be, well, I guess, unemotional. Incapable of joy or anger. Josh may see himself here in the sense that he feels no joy with life, but he has no problem expressing his anger, so again, I don't see him in this, and he's never appeared catatonic to me, even for short periods of time.
So, I don't know. What I did read is that Bipolar and schizophrenia are often misdiagnosed for each other because there are many similar symptoms, but it seems to me in my reading that hearing voices or having hallucinations HAS to be present and ongoing for a month for a diagnosis of schizophrenia to be made. I'm praying he's wrong because it does sound much harder to treat schizophrenia than Bipolar.
So I'm scared and unsettled. Nothing new here really, I've been scared and unsettled for over a year now. It was just over a year ago that Josh was hospitalized. It has been the longest year of my life.
I have to pass this on too. I spoke with Josh's brother Friday, telling him that Josh had quit his job and I expressed how helpless I felt. We talked about the financial ramifications of all this on me and how impossible it is to talk to Josh about all this stuff.
I got an email from Josh's brother late that night. He sent me links to a bunch of sites that offer financial assistance and medical support for someone with disabilities, including Bipolar.
"I don't know what we're gonna do with that kid, but maybe you could call some of these places and get some help with all this, for you and for him."
I thought that was sweet of him to take the time to look into this stuff.
Clearly we all want Josh to get 'better'. We all realize there is no cure, but there is a path forward for him and I'm trying to not project into the future very far and just be glad that Josh has finally put one foot on that path.
On a lighter note, I hope Josh doesn't have schizophrenia because when I spell checked this post, I had spelt it wrong about half the time. Bipolar is much easier to type.
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