Wednesday, April 30, 2014

Letting Go

Thomas' session in therapy yesterday was very interesting and a turning point for me somewhere inside. I will try to describe here what is going on with me. I wrote in the description of this blog as a whole that you would read the "candid and sometimes raw point of view of a mom with a son with schizophrenia". Today will be one of those days where ...I will live up to that very prediction in a big way. I write because I know that if you haven't already, some of you will someday feel like I do, or something close to it and I don't want you to feel that you are the only ones.

I sat in the beginnings of Thomas' therapy yesterday as the usual questions were thrown at him asking him to rate anxiety, paranoia etc. Everything thrown at him was a zero with a rare 1 in places. I watched his therapists face as Thomas talked and even he seemed a bit surprised about this seemingly spontaneous recovery of Thomas's. You see, it wasn't just that conversation that had us baffled. Something else had happened with Thomas the day before.

My mom gave Thomas my dad's bike and Thomas rode it to work. Yes, to work. All of his anxiety about being on time that we've lived with for months was gone and he rode off as I cried and prayed he'd make it safely. He hasn't been on a bike for years. Then...then not only did he ride it TO work but he then had to ride it home from work and he did that in the dark of night. The dark with all of it monsters. Only for him there were none. And when I say "none" I mean none. No paranoia, no worry that the car coming up behind him was following him no nothing. He rode home in peace and was fine. It was really a beautiful thing to behold. I didn't think he had it in him but he did and he did it with success and flying colors. Sitting there in therapy, though, as Thomas talked about all of this and all of his zero's both his therapist and I were baffled. What has happened to Thomas. How can he go from such heavy paranoia a week ago to acting like an ordinary young man?!?!?

So now, here is the raw part.

Ask me what I felt.

What came to me like a tidal wave was anger. That and desperate tears, the kind that leave a lump in your throat. What was wrong with me that I felt so angry about what had transpired in that session? I still can't totally put my finger on it but somewhere deep inside I am angry because he is fine. Just like that. No warning, no preparation, no nothing. Please please please don't get me wrong, I am thankful that he is fine, it's all I have wanted for the past few months and even longer than that but now that he is, somehow, for some reason, I am angry and sad. He talks of being independent and moving out and getting his drivers license and I now see that's possible for him. And yet, I am angry. During the hours afterwards my mind began to figure out what to do next. I don't have to police anything anymore. I don't have to question him if he is ok, I don't have to worry anymore. So what did I want to do? I wanted to run.

RUN LIKE HELL.

I wanted to get away as far and as fast as I could. I wanted to escape this cloud I have been under and all of this I was wanting with a seemingly cold heart, one that would be willing to leave her son and husband and just GO. What is the point in staying anymore? The last strings that kept me tied here have been cut and I want to go. I want to find myself, define myself as someone other than "the mother of a child with schizophrenia" or "the caretaker of my ailing father"--who has passed on but yet that still defines me. I feel like an empty, sad shell of a woman and I am sad and angry and very

VERY

Lost.

I prayed and prayed for Thomas to be well. I prayed and prayed that my dad would get better when he was alive. Now, he's dead and now, Thomas doesn't need me anymore. I want to go.

Go.

And I want to stand in a big field and scream until I lose my voice, cry tears of grief until I have none left, I want to fall to my knees and pummel the ground with my fists culminating with wanting to curl up in a ball and catch my breath. Then...I want to find a life, redefine myself, move on.

I lost my daddy. My beloved daddy who I miss with a vengeance every day, every hour, every minute of my day. Now, too, in a way, I have lost my son. He is free to go now. Now that he's well I can see him living independently and succeeding at it. I see him leaving home for the first time and all of this, all of it leaves me empty and angry and sad.

I don't know. I'd ask you not to judge me but the thing is, I wouldn't be being true to the goal of my blog if I didn't tell you what I am going through. I am under extraordinary experiences right now having just lost my daddy. That alone wrecks people but now, also, I have who was once a very sick young man now stretching his wings and is I-----I <---this close from leaving the nest. My life feels empty. I don't know how to be anyone other than a caregiver.

So, again, I don't know. I have mixed emotions, strong ones, and I have to sort them out before my world crashes around me completely. I am utterly baffled how Thomas can be not fine and then seemingly suddenly be perfectly fine. I have shocked myself with my reaction and I'm sure I'll shock you too. But it is what it is. My only hope now is that you find some way to understand what I have written here today.

Tuesday, April 29, 2014

It's Not A Celebration. Not Yet Anyway

Well to those of you who have been supporting me along the way and for all of the rest of you too, I just wanted to let you know that yesterday Thomas and I went to a disability advocate and filled out all of the forms to get Thomas SSI. I finally did it but somehow I am just not excited about it.

To begin with, Thomas had to go through an interview process that covered his history and current state of mind. I found myself again in a sort of twilight zone as I sat there and listened to him describe himself. Every question that was answered made it more and more apparent that he is a very sick young man. As his mom, these sorts of interviews are very hard for me to sit through. I usually hold my breath and I can't bring myself to look at the interviewer for fear her expression will give away her true feelings about what she's hearing. C'mon now. I sit in that room and listen to that stuff and I, if I didn't know Thomas, would think he was utterly crazy and no doubt that would show on my face. So I didn't look at the interviewer. My eyes remained on Thomas as I tried to support him through what he was saying. He was hesitant at first but I told him that if ever there was a time where he needed to tell the truth about what goes on in his mind, this would be that time. So he talked. A lot. After that there was no doubt that we were doing the right thing by coming to this advocate and getting the ball rolling on Thomas getting SSI.

Here's the thing though. I've said this before but today I'll say it again. As his mom, who saw a different future for her boy, it is very hard to come to the point that you realize that the U.S. Government is going to decide that your son has a lifelong disability and that they believe he will never work a full time job (hence the supplemental income and "food stamps") and that he will need medical care and help with paying for meds, for THE REST OF HIS LIFE. Don't get me wrong, I know the money is a good thing. I know that if I die, there will be money to help support him. I know that this may give him independence in a small way. I know all of that.

What it also does though is wrench my dreams for him from my grasp. Yet again, in that interview process, I was reminded how sick he is. The signing of all of the paperwork to get SSI shows how sick he is and all I can think about as this went on and then in the hours since is that the things he wanted for himself and I wanted for him are gone. They're really gone.

He wanted to join the Navy and work on submarines. His dad and I were going to send him off to boot camp and that was going to straighten him out a little bit and get him on the right path. He was going to have a steady income, medical insurance and a girlfriend and maybe someday a wife and kids. He would travel the world, make tons of friends and would serve his country a very proud young man.

Or he was going to go to college and study psychology. He would graduate high school and go straight in to college in the fall and would begin adult life an educated, prepared for the workforce, young man. In college he would make lots of friends, go to parties, drink too much one night an end up vomiting in the bushes never ever again to have another drink because of that experience. His brain was going to be filled with so much knowledge and he was going to emerge graduation day with enough schooling to get himself a decent job and begin a life that would include lots of experience, the ability to support a family and so much more.

Instead, the Navy recruiter told us that they wouldn't take Thomas as a recruit because of his diagnosis of schizophrenia. Poof! Dream wrenched from our grasp. He will perhaps go to college but instead of the quintessential college experience, he would go to classes, study things that reinforce his delusions, and he'd isolate himself from other people not to mention that the stress from school or work or the Navy could cause an episode and he'd be hospitalized. That is his reality. That is my reality and applying for disability, for deeming him "permanently disabled" just doesn't feel like a good thing to me right now. There will be money and health insurance but none of it, none of it will ever ever change that Thomas has schizophrenia and in a lot of ways because of that diagnosis, his path is laid out before him in many ways, a path lined with monsters and CIA agents and whatever else schizophrenia is going to throw his direction.

We applied for disability and were told he will get it because of the nature of his illness but it's not a celebration, not yet anyway. For me, as his mom, today I mourn the loss of my boy and the dreams he had laid out before him just 3 years ago. Today I learn how to find a way to let that all go and to find a new reality.

Monday, April 28, 2014

Talk to The Animals

There's a certain kind of void that appears in your life as your loved one gets well. You go from worrying all the time to this weird place akin to a sun-lit meadow in the middle of the darkened woods. All of the darkness that you walked in, that your life revolved around is now outside of your peaceful place and you can actually stop to breathe again. I find myself in that spot now incredulous that I am here. Aside from the things I saw all of Thomas' young life, the real problems, the first psychotic break, came in April 2012. He had just broken up with a long time girlfriend who he had loved deeply and his grades were dropping. It was from that point forward that life was forever changed. After the psychotic break and Thomas' therapist's now famous words about the possibility of a psychotic break happening again,

"If it happens again and you can't pull him out of it then we'll do something about it."

Really? What do you mean "if I can't pull him out of it? What happens when you "can't pull him out of it?!?!?

It was then that I began my vigil over Thomas. From that point forward he was sick and from that point forward I would not be able to rest. Within 6 months of that he was hospitalized and got his diagnosis, "acute paranoid schizophrenia." I got "the talk" from 2 doctors that broke my heart and frightened me for Thomas' future. Then, of course, from there is was just one crisis after another as he remained under medicated and under immense stress from his senior year of high school which culminated in a hospitalization. It all just never seemed to end.

Then slowly...slowly he started to get better. There were ups and downs but the move towards better health was happening. Now, here we are today. 4 medications are on board and his biggest complaint in the last week came last night when he reported his anxiety before work was a 2 out of 10.

Here we are. Almost regular human beings. It's a very strange no-man's-land kind of place to be. My life that had been built around Thomas, now, is strangely empty. I just lost my daddy and now Thomas is fine and I don't have anything to do. My life had been about caregiving both for my daddy and Thomas and now...

Nothing.

I don't know what to do with myself. I feel like I have no more purpose, no direction. So, here I am in my sun-lit meadow with my Snow White storybook requisite wildlife around me and all I can think to do is strike up a conversation with them. Hopefully they have an idea.

Saturday, April 26, 2014

He's Fine, He's Well, No Worries

I have to chuckle because I think (though I don't know how he'd know it's me) that Thomas' therapist reads my blog. I think this based on how he reacts to me when I'm there in the last 3 weeks and what he discusses with me and with Thomas. If that is the case then I am thrilled that he does because he will see how things are with Thomas and how I am ...handling it all. I haven't had the courage to ask him if he's read the blog because I'm not sure I want a full-on confirmation and if he doesn't then I'm not sure I want to point him this direction since I've been very vocal about how I feel he does his job. Regardless, yesterday went exactly like what I commented about in my blog.

I have made my feelings about desensitization therapy known here. I haven't been a fan of it but part of that is because I saw a Thomas that was really struggling and his therapist didn't and so he went forward with the therapy. Well, yesterday he had plans again to take Thomas to the police station again and I was completely straight-faced and tight-lipped about the whole thing. In fact, I have never said anything to him about how I feel about what he's doing which is why I think he reads this blog. At any rate, the plan was to take Thomas inside the police station. Again I said nothing, I just listened. Right off the top though his therapist was defending what he was doing and told me that he "wasn't being mean" and "wasn't trying to hurt Thomas". I just put my hands up in defense and said "I know" and left it at that. The fact that he was saying what he was saying made me think he has read what I wrote so he knew the truth about how I felt regardless of my reaction there.

Before leaving though his therapist put Thomas through the litany of questions that we have done since he got sick.

-rate anxiety 1-10
-rate anxiety about cameras at work 1-10
-rate paranoia 1-10
-rate depression 1-10
-questions about meds
-rate the believability of delusions from 0-100%

and others. The answers to all of the ratings were either 0 or 1 and the believability in his delusions he rated 10%. I shook my head and kind of didn't know what to think about all of that.

So he's fine?

Really?

Wait.

Really?

Could this be? I mean just a week ago he was highly paranoid about the police and now he's a 0 or a 1 in anxiety and paranoia. It appears that that is the case so I kind of sat there in shock. How is that possible? Do you know how long it's been since he's been ok? Probably never.

Ever.

The only thing about the conversation that seemed out of sorts was Thomas' growing irritation, agitation, defensiveness and wariness. I finally piped up and asked him to rate his irritation/agitation on a scale of 1 to 10. He was, of course, a 1.

Wow.

OK.

So my part of the session ended and they headed off to the police station. Turns out...Thomas went in to the police station and according to him only reached a 2 in anxiety.

Wow.

OK.

So afterwards I went over to my mom's and she asked how Thomas is doing on his new meds.

"Well mom, he's fine, he's well, no worries." and I just laughed. My mom was like "What??" and I just shook my head and laughed and said, "yeah...he's fine."

So that is where we are right now. I honestly don't know what to make of him being fine, being low on all of the scales. I've never known this kid before. A part of me wonders, though, what is he hiding? He was asked about one specific delusion, could there be others he's not talking about? I don't know. It's all just...

weird.

One thing's for sure, I am going to take it all and hold it close and hope and pray that it stays like this for a while.

Thursday, April 24, 2014

How I Celebrate This Day

Well, today is my 42nd birthday and I can hardly believe that I am this age. I look back on my life and most especially my life that included raising Thomas and for so long my life has been about him. He was my only child and he came to me absolutely perfect and so I chose not to have another baby. He has been my life as I promised myself every day of his th...at I would try to ensure his happiness. After all of this time that still remains my goal even though we got this wrench called schizophrenia thrown into the works. I realize now that the reason I had only one child was because what I didn't know then was that I would be called to be this young man's mother and caretaker long past the time that most mother's are called to do. It was interesting because as Thomas grew into adulthood, I knew that I would be a part of his life in a big way far beyond the age of 18. So, for me, today, on this blog, I celebrate Thomas for my birthday. I celebrate the smile I see so much more often lately. I celebrate his courage that he shows in the face of crippling paranoia's. I celebrate his strength that he hasn't given up the fight when even I almost did. I celebrate his beautiful heart that still will cause him to stop and stare at the full moon and comment on how beautiful it is or stand below a bird's nest and ponder out loud where the mom is and how many babies she has. I celebrate his sense of humor which more often than not throws me off track because I don't expect him to make the joke about something that he does--like about hearing voices or seeing things that aren't there. I could go on and on. The fact of the matter is though, I wouldn't be here today if it weren't for him. When I was in some of my worst possible places emotionally, I didn't want to exist anymore but Thomas' very life gave me every reason to choose to go on. He is my life and will always be my reason to be.

Now, the other thing I want to celebrate today is all of you. Lately so many of you have been commenting on my posts and saying some really nice things or sharing your own stories. You have no idea how much that means to me. I know I don't comment on everything that gets said but you must know that I read every one and am touched in some way by them either with heartbreak for you and your situations that are a challenge, gratitude for your successes and I laugh with you when you share something funny. Your presence here on my page means everything to me and without all of you this page wouldn't exist. As of today I have 990 page members which means I'll reach my milestone of 1000 soon which will be a huge celebration for me. Also as of today there are just 6 days until the 1 year anniversary of my page. These are all really amazing things and today it is you guys that I celebrate too. Thank you all for being here, for being candid and honest and for listening to me through every thing Thomas and I go through. I love each and every one of you. ♥

So, to celebrate my 42 years on this planet today, I celebrate the things that breathe life into me. I am a very blessed woman.

Wednesday, April 23, 2014

Meds Day--Bringing Thomas Back

I was very proud of Thomas yesterday as he made active choices to help himself during his meds appointment with Dr. N. yesterday. I, again, can't help but sing Dr. N.'s praises as he listens to not only Thomas but me too and has an educated and experienced view on what Thomas is dealing with. He puts me at so much ease.

Thomas went in to see Dr. N. by... himself as usual yesterday and I wondered, as I always do, if he would tell Dr. N. the truth about what he's going through. I've had enough experience with him to know that either he forgets things or he's hiding things so I never know how a session will go. To my surprise and happiness, when I went in and sat down, I found Thomas with a smile. Dr. N. did what he always does and asked me how I felt Thomas was doing and if I had noticed any changes. I brought up the police thing and he nodded and then we went on to discuss that. Apparently though Thomas had in fact mentioned that to Dr. N. so he was on top of that right from the start. I can see now, after yesterday's appointment, that Thomas trusts Dr. N. and I love that!

After talking a while, Dr. N. came up with 3 different medication scenarios for Thomas. The choices were to leave things as they are, increase the clozaril, or increase the Latuda. I kept my mouth shut as I didn't really have an opinion on it and was more curious to see what Thomas decided. Dr. N. agrees that we decreased the clozaril too fast and that is why we were having these breakthrough symptoms that we have seen for the past couple of weeks. Naturally, because of that, something needed to be done. When the choices were put before Thomas I kept a straight face and barely breathed as I waited for just a split second before he piped up and said that he wants to increase the Latuda. Wow, really? I couldn't believe he was choosing that. Honestly I was leaning towards not doing anything right now and seeing how the next two weeks went but if Thomas wanted that then that was how it should be.

With the decision made, Dr. N. increased the Latuda quite a bit. He also left what little remained of the clozaril in place. I was surprised to hear him say that increasing the clozaril was an option though I was also happy about that too since I think it's the Latuda and the clozaril working in concert to keep Thomas on an even keel.

After the appointment Thomas and I went to Michael's (a craft store) for me to find some drawing/ sketching pencils and I was surprised when he came in with me. We wandered the store together and he was so kind and patient as I picked things up and put them back and tried to make decisions on what I wanted. When we finally got to the drawing supplies section while I looked at pencils, he found a book about how to draw Manga. He briefly flipped through it and then looked at the price and he got excited and he told me he had to check his bank account to see if he had enough to buy himself the book. When he discovered he did he grabbed the book and held it close.

In the car on the way home he flipped through it and we talked about drawing. I told him how I couldn't draw a face to save my life, that the eyes were always too big and things were out of proportion so he would look at sections of the book and find how to do those things and he'd tell me about them. It was a bonding moment unlike any we had had in a long time. We talked a lot about drawing and then the conversation tapered off as I drove. I thought to myself as I drove that it had been so long since I'd seen him draw Manga, let alone draw anything so I was delighted to see him showing an interest in that again.

In a quiet moment I reached over and squeezed his leg and I said,

"I'm happy to see you wanting to draw again. That was gone for a while."

He said,

"Yeah it's been a long time."

Then I said to him,

"You're coming back to me kiddo. I thought we'd lost you there for a while but I can see you're coming back now."

Tuesday, April 22, 2014

A Poem

Sometimes it might feel like
This world is filled with hate
Intolerance for what’s misunderstood
No love for what’s our fate.

The people who sit in judgment now
Find it easy to decide
What’s right for us and for our loves
They take opposing sides.

People come in to our lives
And question what we do
They don’t know how we feel or think
Or what life we have to choose.

This illness eats away at love
For life, for desire, for goals
Its tendrils reach down deep inside
Its darkness takes ahold.

We find a certain kind of peace
In moments lit by light
When schizophrenia backs away
When we can finally stop the fight.

We claim our loved ones trapped inside
Of symptoms that took over
Their very spirit, their essence pure
Our fight becomes much bolder.

Because amongst the grief we feel
For what we lost to illness
We laugh, we love, we hold so tight
To our loved one in the stillness.

For unlike people who stand and judge
We see so much inside
Our loved ones are not just a piece
They’re whole and they’re our life.

On and on we’ll fight the fight
Together we are strong
With love, support and knowing truth
Our resolve and vision’s long.

Life goes on, the other’s judge
What they will never know
But we are here, fighting still
Our strength, our spirit shows.

by Melanie Jimenez

Monday, April 21, 2014

An Opportunity Of A Lifetime

Recently an opportunity fell into my lap that I was honored to receive but surprised at too. Through a support group here on Facebook I was approached to do a TV show about schizophrenia with Thomas. This show is a huge deal here in the United States called Dateline and is on NBC. Even as I type that I am still feeling all the same feelings of honor and ...surprise. I am writing about it now because it appears to have fallen through and I didn't want to say anything until it was a sure thing. Now, since it doesn't seem to be, I wanted to write about it and share with you mine and Thomas' experience through the preliminary process.

When I was approached my very first thought was one of anxiety and fear. I wasn't sure this was something that I wanted to do, most especially to Thomas. I wanted desperately to get the positive word out there about schizophrenia but the price I could pay and that Thomas could pay might be more than we could afford emotionally and psychologically.

I wrote my requisite emails to the producer and finally got a chance to actually talk to her. I could hardly believe I was getting to tell mine and Thomas' story to someone so important or that could make such a huge difference in our lives and the lives of others. Her vision for the show was to pick 3 different families and tell their unique stories about how they deal with having a family member with severe mental illness. It really was a dream come true for someone like me who started my blog because I wanted to do that very thing, tell the story of what it's really like.

I spoke to her for almost 2 hours and she listened intently to my story and asked questions along the way. She seemed very interested in all that Thomas and I had been through and my concerns about being exploited slowly fell away. I told her about his hospitalizations, what they had been like, the struggles I had been through to get him into a good hospital and it was these stories that most piqued her interest. I liked this because I felt that where she was going with her news story was to a place that needs light shed on it, our failing healthcare system.

We also talked about including Thomas in the story and having him sit for an interview or two. I felt this would be a challenge in a few ways since, after all, he has schizophrenia and being on TV might increase his paranoia, for one thing. Another thing that concerned me was that this would put him front and center with me in the fight for recognition about the truth about schizophrenia and I wasn't sure that would be a good thing for him. Lastly, I felt he wouldn't be a good interview in general since his memory is so bad and he's a very subdued kid who often looks to me to verbalize his thoughts and feelings. The show would be fraught with potholes that could trip him up and I wasn't sure this would be good for him.

After talking with the producer I went in to talk to Thomas about it. He had previously supported my doing the show when I initially told him about it but I though since I now had more information that I should check back in with him. I told him all about the call and he lit up. He was actually kind of excited about being on TV and talking about his illness. I explained to him that the cameras would follow us for 3 months and someone would talk to him about his illness, his thoughts, his paranoia, his hallucinations, his fears, his successes and much much more. I thought it was a huge undertaking on his part especially since, at least as far as I was concerned, making his paranoia's publicly known might only increase them. Imagine being afraid of the local police and then finding out those very policemen would now know his whole story as would the rest of the world. I feel like this could knock him down a little bit and make him sicker. Still, he supported it and wanted to do it and I commended him for being so brave. I made it abundantly clear that his life would now be public and that there was a price to pay for that. I tried to dream up as many scenarios as possible for his consideration and every one he shot down with an understanding of what it meant and encouragement for me to move forward with telling our story. He really is an amazing young man.

Sadly though it appears that our part in the Dateline story has fallen through and none of this will come to fruition. I am sad that I won't get a chance to tell the world, a much larger audience than I have here, mine and Thomas' story and therefore the stories of so many of you out there but there must be a reason for why we weren't chosen to speak on schizophrenia's behalf. I have to wonder though, given the circumstances, would you have told your story to the world too? Would you have had your loved on TV and sharing their life for everyone to see, the good, the bad and the ugly? I'm curious about this because even as I walked through part of this big plan, a part of me wondered if I was doing right by Thomas. I had no doubt that my voice needed to be heard but I wondered about Thomas and I wonder about all of you. What would you have done?

Friday, April 18, 2014

Therapy Day

Thomas had therapy yesterday. We arrived there to the announcement that another round of desensitization therapy was in the works; they were headed back to the police station. Poor Thomas went from practically fine to completely scared at hearing that news. He went, though, and I was proud of him for fighting through it. I still maintain that the true test will be him talking to an actual police officer.

The other day I was hanging out with my friend and she told me that her brother is an ex cop. I asked her to explain to him what Thomas thinks about the police wanting to arrest him for his political views and that he's very paranoid about them. I asked her to ask him if, as a cop, he would feel threatened by Thomas in some way given his diagnosis. I thought I'd take another way into this for Thomas and find out exactly what a cop would think. On the way to therapy I asked Thomas if he would be willing to talk to an ex-cop and he agreed that he could probably do that. Go figure. Maybe it's that he's no longer in uniform, I don't know. My mind takes it further though and thinks that this "ex" cop could talk to his "active duty" cop friends and tell them about Thomas which is something I don't want right now. I'm thinking, though, that this could be good for Thomas if this guy were to just sit with him and talk to him about what policemen really think and feel. I don't know...it sounds like it could be a good plan though.

In therapy, however, that whole discussion and others were very annoying. Thomas' therapist must have been in a "I really don't like you mom" mood because he said stuff to me that made me shake my head and have to defend myself. First of all, when I told him about how Thomas might be willing to meet with an ex cop his response was this,

"Well, make sure he's not some militant, white supremacist guy who's going to influence Thomas."

Really.

 REALLY???

Like I'm not going to screen who this guy is before I send Thomas his direction?????? Seriously? That comment made me mad more for the fact that he was accusing me of just going about this without thinking it through first. Oooh that made me so mad. What happened to the therapist that I had for a couple of weeks who supported me?

Then we talked about my husband and I going away for the weekend soon and leaving Thomas alone. He asked Thomas if he would get bored and Thomas said "no" and laughed, as did I. I piped up,

"He wouldn't get bored, he'd be stuck in his room all day playing on his computer. He probably wouldn't know we were gone!"

To that the therapist responded with,

"Ooh burn!! Nice one mom saying Thomas has no life outside of his room, though I'd like you, Thomas, to be more social."

I was immediately defensive because I was, in no way, insulting Thomas and I felt like his therapist felt I was somehow. I explained that what I meant was that he doesn't even mind when I'm gone all day so he'd be fine with us gone for a night.

The session went on and on like this with me being talked down to about the things I said. I told him that Thomas had gotten worse lately and his response was something to the effect of,

"This illness is like the weather, some days will be good, some days will be bad."

It was said in such a way that he came off like a jerk. No kidding doctor that it'll wax and wane with the day and stressors etc. My point was that over all, things had gotten worse lately and it concerned me. My concern, however, was brushed aside like it meant nothing and when it came time for them to do their walkabout to the police station, I was more than happy to leave that office and get as far away from him as possible. He may have been having an "I really don't like you mom" day but I most definitely left that session feeling like I really didn't like him either. This is the second week in a row that I've come away with this feeling and it's not going to fly too much longer before I say something. I've never been shy about letting him know how I feel and if his newfound condescending attitude towards me continues, mark my words, there will be another angry email coming his direction. I am a mama bear protecting my young. Don't undercut me or find some way to threaten who I am or what I do. My son is my life. I will do anything for him and will make sure I am making informed decisions about his life where I have the control.

Grrrrrrr!!!

Thursday, April 17, 2014

The Forgotten Meds

Well everyone, my plan is to take you on my journey to get Thomas disability. What you are going to see and it's something I'm not proud of but that is my apparent lack of commitment to get this done in a timely manner. Part of it is that my life during the day fills up with things like doctors appointments and being with my mom (who is grieving heavily since she ...lost her husband) and my nights I am tired and medicated so I'm not with the program enough to do the work and of course my mornings are taken up with this blog. What I'm waiting for is a clear day or even an afternoon to get started on this. You all have given me so much support and hope where getting disability is concerned so I have the confidence to do it. My hope is that I'll find some time today.

I have to say that the reason I am contemplating a lawyer is because I can just bring them everything (I have all records from all hospitalizations and all kinds of doctors notes etc.) and they will track down the records from Thomas' 3 doctors that he's seen since 2012. His therapist and Dr. N. are on board with doing this so I have their support also. It's all waiting on me. In the end, I'll probably go with a lawyer since that has been my plan all along.

As for Thomas, his latest thing is forgetting his night meds. Yesterday was day 4 of that. After dinner (he usually takes them just before) I checked his pill case and they were still in there. I got frustrated with him and went to his room and asked him,

"Do you even want to take your meds anymore?"

His response,

"Yes I do but I honestly forgot!"

He could sense that I was frustrated with him. He grabbed his water and went and took them and I stood there and told him that this was the last time that I was going to remind him and that he was in control from now on. I told him,

"You will have to pay the price if you forget them too many days in a row and you get sick."

I walked away and sat down to watch some TV. Within minutes I got to thinking that this is just stupid, that if I don't remind him then he will get sicker and I just can't live with that. Especially knowing that all it would take from me is a reminder. I'm trying to help him become independent but this forgetting pills 4 days in a row shows me he's not ready for that level of independence and he still needs me. Feeling really terrible, I went back to his room and said,

"I'm sorry kiddo for being frustrated with you about your meds. That wasn't nice of me to be so short with you. Right now you need the reminders and I will do that for you if I see that you haven't taken them after dinner."

He looked so sad. It broke my heart. I asked him for a hug and he came over to me and held me tight. I told him,

"Kiddo, I love you so much and all I want in this world is for you to be healthy. You have to take your meds or you're going to get sicker and that just cannot happen."

He agreed and with that we struck a deal on how reminders should work. Honestly I'm getting worried about him. With his increased paranoia and his forgetting of meds, we are headed in a bad direction. He has therapy today so I plan on talking to his therapist about all of this stuff.

Needless to say, my work is cut out for me. I need to be better committed to this disability thing and I need to get Thomas better medicated. I dread the talk with his therapist today about the meds and Thomas' worsening condition since he's made it pretty clear he's no longer a fan of meds. I just don't see how Thomas can survive without them. Luckily and ultimately they are in Thomas' hands. They are his decision to make and apart from forgetting them, when reminded, he is more than willing to take them. Thank God.

Wednesday, April 16, 2014

SSDI Etc.

My post yesterday received a lot of response and I want to thank you for taking to time to offer your support and experiences. My day yesterday ended up being taken up with a lot of running around so I was never able to make that call. Today though I plan on checking out the SSDI website myself and seeing what it entails and seeing if I can do this all on my own or if I will ultimately go with a lawyer. I did go and speak with one a year ago (maybe less) and they told me that Thomas' case is a slam dunk and that they'd be happy to take it on. Their rate for doing so is 30% of the back pay which Thomas will get because his diagnosis goes back to a very serious hospitalization in 2012.

2012

Wow.....

We've been at this a long time. I still can't believe it's been that long but then I look back over just the last year and I think about all we've been through, it seems like it's been forever. I'm sorry for saying this again but I really just struggle with the fact that Thomas has schizophrenia. I knew from the time he was little that something wasn't quite right but I just chalked it up to immaturity and/or that junior high and high school are difficult times for everyone. What I missed were the secrets he held like that he felt he was being followed and/or watched. I missed those things for a long time because he didn't tell me. His political beliefs became clear to me pretty early because of a friend of his who had similar beliefs and then Thomas' own morphed into what he is now. Just yesterday I found his project from psychology class in high school where he had drawn all over the bag the symbols of his political affiliation and wrote words about them. Inside the bag were pieces of paper from his class mates either telling him he was crazy for thinking the way he did or they supported him. I can't imagine what it must have felt like to him to read the stuff about him being crazy. Nobody knew, not even me REALLY that he was sick and I wish things had been different as far as that goes so that people might have been more understanding. I suppose that's just wishful thinking on my part.

As for Thomas lately, he is now forgetting to take his nighttime pills which are the most important ones since they contain the antipsychotics. 3 nights now he's forgotten them and for 3 nights I have tried to let it go to see what would happen and I just can't. He's already struggling and 3 days without medications could make a huge difference in how he's feeling. So inevitably I track him down and ask him it he's taken his meds. Last night, though, I went to him and I asked him if he even wanted to take his meds anymore. I thought perhaps the tides had turned and he was starting to try to refuse them. That wasn't the case and he went right out and took them but 3 days now he's forgotten without my reminder. I don't like this. Not at all.

Also, I haven't heard from Dr. N.. I don't know what's up with that. It's been my experience that he doesn't pick up his messages from work very often and his email is the best way to reach him but.....nothing....meanwhile Thomas gets worse. We will see him next Tuesday so I suppose we'll just hang in there till then.

Today is a new day for me. There is a lot to do today but I will at least make the call to the lawyers and get online and check out the SSDI application myself. I have to do this. You are right. It would give him some peace of mind and it would give me some peace of mind too because if I ever die, he is going to need that money to survive. Dear God....if I die. Now that is a thought I can't face right now.

Tuesday, April 15, 2014

His "Condition"

Last Thursday in therapy Thomas wanted me to talk to his therapist about him going on disability (SSI). I have been mulling him going on SSI over and over in my mind lately. I've written about this before and told you how I feel like SSI in a way is a "death sentence" in terms of facing the fact that he has a lifelong disability. I have avoided going through with getting the process started because I just can't face that yet another person or entity (the government in this case) will confirm, yet again, that he does indeed have schizophrenia. It's always been one thing for me to utter the word schizophrenia and to talk about it because somehow it's caught in my world, this little bubble I live in. It's another thing altogether for the outside world to acknowledge it and say the word to me or about Thomas. One of my hardest places to face that he really is sick is in his therapist's office. I am forever waiting for him to tell me that Thomas has anything other than schizophrenia. Oh what I would give to hear that diagnosis change to anything other than what it is. I am bipolar and while it's hard to deal with, there is one thing for sure, I pretty much keep contact with reality 99% of the time. I may get "crazy" with mania or heavily depressed but those are both things that I am able to get through and have found a kind of strength in. Sometimes I wish that his diagnosis is bipolar like me so that I would know what to do to help him.

To me, schizophrenia is not like that at all. For one, the person with schizophrenia is completely out of touch with reality a lot of times and as a mom and caregiver that is the most difficult symptom to deal with. Take for example this thing with the police that has cropped up with Thomas lately, I, now, cannot go anywhere in my car without seeing a police officer and for a split second thinking about Thomas' world view where they are concerned. Right away I am in his mind and trying to assimilate that with my rationality is just plain crazy-making. While sneaky, that cop hiding in the parking lot in the dark last night catching speeders, is completely expected and always gets a cheer from me that he has a good hiding spot. If I ever get a ticket I am going to offer up kudos to the officer for catching me without me knowing how he did it. It's a game of sorts for me and one that humors me a great deal. Seeing it through Thomas' mind though changes everything and it just doesn't make sense to me, not in the real world anyway.

So, back to the SSI thing. I asked about Thomas going on it and we discussed it a little bit and then the part came that is still resonating with me 6 days later and plagues me in my quiet moments. His therapist said as a way to confirm that Thomas should definitely go on disability,

"Thomas just isn't able to work an 8 hour a day, 5 days a week job. He probably won't ever be able to with his condition..."

I pause here because this is where he paused in what he was saying and I swear it took me a split second to start praying that Thomas' "condition" was anything other than schizophrenia. It's funny because I held my breath and waited for what came after that (what felt like a) long pause. What he said was of course what we all know and what I can't face, he said,

"He probably won't ever be able to with his condition..............schizophrenia."

And there it was. Damn it. There it was straight out of the professional's mouth. Thomas does indeed have schizophrenia and he should go on SSI. I can't get that thought out of my mind. I can't stop thinking about the cold, hard truth. The professional said he has schizophrenia and belongs on SSI and I just can't hide from it anymore.

So I spent yesterday picking up the piece of paper with the names of some disability lawyers on it that I need to call. I'd pick it up, feel sick and then put it back down again. This went on all day. The fact of the matter, though, is that the words were uttered and it's time for me to follow through. So, that is my plan for today. I have to at least make that call to the lawyer and get this started. I hate this. There is so much about this illness that needs to be faced. No....that gets thrown in your face and speaking from experience, all of the efforts to hide from it only prolong the inevitable. Today I make the call.

I hope.

Monday, April 14, 2014

Trying To Ignore What's Right In Front Of Us

I made a decision yesterday that I was going to go back to not questioning Thomas about how or what he was feeling. I think part of it was to give him a break but another part of it was self-preservation. I was so tired for so long dealing with this illness and then he started to get better, a lot better, and I actually started to get a taste of freedom. Then it went awry and it seemed like in a split second's time I was right back in the same place I was for all of those months. Since Thomas' symptoms showed up again I have also watched as my family imploded around me as we all watched our hopes and newfound freedom start to go up in smoke again. My husband is the least moved by any changes in Thomas. He looks at the bigger picture most of the time and feels like things will never change, at least that's how I see it. I was a little surprised to one night be on our walk and I was lamenting what was happening to Thomas and I stated that I was so mad that we were back where we were. He was quiet for a while and then he quietly said, "So am I." I knew then that he had, in fact, been moved by the changes and he was in the same place that I was. Nobody's mad at Thomas, he can't help what he's going through but he just happens to be the vessel that holds this nasty illness and because of that, because he's family, we get mad (or sad or even happy when things are going well). It's really a shame because the unfairness of it is twofold on Thomas. Not only does he have to deal with schizophrenia but he also has to deal with our leaking frustration which inevitably comes out on him sometimes. I am not proud to say that but it's true. So yesterday I decided to take a break from it all and just ignore it.

That was easier said then done as the night came to a close and I picked Thomas up from work. We stopped at a light and in front of us crossed a police car. It's funny how in a way Thomas' paranoia becomes mine because undoubtedly he noticed the police car but so did I. Without him in the car I'm not sure I ever really "see" police cars. Because I am functioning rationally, unless a police car is behind me and I've been speeding or I ran a yellow light, I don't really care about them. However that one that crossed in front of us last night made me aware and made me paranoid, not for myself but for Thomas. I watched his eyes narrow as it drove by and he watched it as we turned and ended up following it down a long stretch of road. I felt his demeanor change from a tired young man to one who was completely on alert. I, for one, felt "safe" behind the car because I knew he couldn't "get us" from that angle. The thing was, that was actually a conscious thought of mine because Thomas was with me and keeping an eagle eye on it. How is it possible that his paranoia becomes mine?

We came to the next light and the police car pulled into the left turn lane and we pulled up next to him. I was afraid to look over at Thomas because I could just feel him watching the car with those wild eyes of his. I asked him then, "Are you worried about that police car?" I knew the answer, I knew it but I hoped and prayed that a different answer would come out of his mouth. It didn't and yes, of course, he was worried about the car.

Why oh why does this illness do this to him??? Why oh why does it also manage to take out me, my husband and Thomas' grandma? How is it that in just a few days time we go from seeing a different kind of life back to seeing the life we are most often just resigned to anymore? I don't want this to be our life. I don't want this to be Thomas' life. Instead here we are, all of us together, trying to muddle our way through yet another episode. I'm so tired of it. Aren't you all? You're here too, in the same or similar places. Do you get sucked into the paranoia? Do you finally start to plan a life only to discover that what you had planned was just not going to be?

I don't know. I just hate this. I hate it for Thomas, I hate it for my husband, I hate it for my mom, I hate it for me and I hate it for all of you. I guess what good I can say is that I am so thankful that we have each other to go through this.

Friday, April 11, 2014

Desensitization Therapy For Thomas

I posted a Twitter message last night that I thought desensitization therapy was cruel. I did that because I sent my boy off with his therapist a highly highly anxious and paranoid young man. I was not happy with the whole plan and poor Thomas looked like he was going to jump out of his skin.

Before we got to his therapist's office I had a little talk with him about his feelings about the local police and his (what I call) walkabout planned for the day. From that conversation I learned that he is right back where he was just 2 weeks ago, all of his delusions securely entrenched and paranoia at an all time high. Just last week he reported that his paranoia had dropped to a 1/10 and yesterday he reported that it has since become a 4/10. That's a huge increase in just a week's time and I am starting to blame the lack of clozaril in his system. It's funny how quickly I drop from "caregiver mode" to "everything's alright and now I can relax mode" and go right back to "caregiver mode." I have to admit though that I feel a bit dazed right now because I guess I really had convinced myself that he was fine and I didn't have to worry anymore. Apparently I'm not used to schizophrenia yet and it's changes. You'd think I was, after all this time, but this change caught me by surprise. It's not like I haven't been here before, what surprises me though is the change in focus on his part. I never knew that the local police caused him anxiety until just recently so to me this is new information.

Anyway, he went on his walkabout with his therapist. I waited for him to get back and when he walked in the door he seemed fine. I was surprised. It turns out what they did was go to the police parking lot and stand by a police car until his anxiety level had dropped. Apparently he started at a 4/10 anxiety-wise and ended up a 3/10. That's all well and good until it dawned on me on the way home that a car is just that. A car. No biggie. A car can't arrest you, a car can't judge you, a car can't do anything to you. Of course he stood in front of a police car and only reached a 4/10 max! That's not to say 4 isn't high but what I discovered in the drive home is that the real test is to have Thomas talk to an actual living, breathing officer. That, he promised me, was never going to happen. There it was, though, the real problem and the one, if his therapist would be so cruel as to do this, that would be the real test of Thomas' resolve and healing. Actually talking to an officer would be serious desensitization therapy and might be what needs to be done at some point. Would I suggest it right now? No way, uh uh, not on your life. The young man I have now, the worsening schizophrenic kid, needs only to get back on track with his medications first and foremost.

All in all, my takeaway from yesterday is that Thomas is sick again. There is no getting around it. He's agitated, evasive, untrusting, and hypervigilant. I sit here shaking my head in defeat. Schizophrenia has won again, rearing it's ugly head to remind me that we just cannot escape it's grasp no matter what we really want for Thomas. I am so angry. 2 weeks. I got 2 weeks. That's it.
 
Argh!

Thursday, April 10, 2014

Never Mind

I almost hate to have to write this because after yesterday's post and my shiny new excitement about the appointment with Dr. N. on Tuesday, what happened yesterday puts all of the success and excitement on the back burner.

Ugh. I hate this.
Here goes.

Yesterday Thomas was dealing with anxiety about work at an all time high. That's nothing new except that I felt terrible for him. He took his lorazepam and tried to calm down and it wasn't working. Then I took him to Dairy Queen to get his dinner and I could see something was off with him. You see, Dairy Queen is just across the street from the police headquarters in our town. The parking lot is filled with police cars and there are officers out in the lot. I had been talking to him about his anxiety, trying to help him calm down but when we finished with Dairy Queen we went around the block and had to pass by the police station. You should have seen him. It broke my heart. His speech became robotic, he became stiff and he was leaning so far over to my side of the car (the police station was on his side of the car) that I thought he was going to crawl into my lap! I asked him if the police station was causing him anxiety and he said that it was. Knowing that for therapy today he and his therapist were going to go for a walk and go through the police parking lot and maybe in the building and I asked him about it and he said he was VERY nervous about doing that. On Tuesday with Dr. N. he was saying that he was fine with the upcoming walk because all he could think about was the kind of ice cream he was going to get. He was distracted by that thought I realized because there we were, our experience at Dairy Queen over, and now his mind was free from fun decisions and open to the truth.

I tried to get to the bottom of what was transpiring before me so I asked him if what was going on with him was anxiety and he said it was. But he was so disturbed!!! So I asked him if he would classify what he was feeling was his well-known facet/enemy paranoia. He said it was. My heart sank. There we were having crossed from the garden variety anxiety I had such hope to fix and we were back to paranoia with all of it's unreasonableness. Needless to say I got as far away from the police station as quick as possible and took him home. Once home he talked to me a little more and he said he is still worried that he is being watched by the government and that his running commentary voice is still plaguing him.

What happened?
What the heck happened between Tuesday and now?
Where was my smiling kid?

I am defeated. I was so excited to write yesterday's post because I really thought we were done with this, or close to done for a while. Here is my concern though. He has been rapidly decreasing his clozaril and is just about off of it. What if not having that in his system is what's causing him to get worse? Since Tuesday's appointment he has dropped another 50mgs so is it possible that we've now hit the point where he is again under medicated? Not only that but even though he can't quite seem to put a finger on why he's afraid of the police, I fear that (and this comes from vast experience) that his delusions will kick in in order to explain the paranoia. This is all he needs! The police are everywhere, every day. We see them all the time. Is this going to come to a point where he begins to think that when he sees them he thinks they are there because of him?

I am broken-hearted. I had such hope. The kid that was practically in my lap in the car yesterday, however, is not a healthy, schizophrenia-free kid. Not by a long shot.

What happened?????

Wednesday, April 09, 2014

A Clean Bill Of Health, Sort Of

Yesterday was a day I have been waiting for for a long time. Dr. N. had made me promises about changes I would see in Thomas and at the time, honestly, I didn't believe him. Not even a little bit. When I was called in to Thomas' session however, it appeared that the promises made had come to pass. I walked in to Dr. N.'s office and there was Thomas sitting there with a small smile on his face. Dr. N. sat down and recapped what the two of them had talked about and to make a long story short, Thomas is doing really well, the Latuda is doing it's job and in many ways we are out of the woods for now. It has happened....

Thomas is stable.

Stable in the sense that his hallucinations and delusions are now watered down enough that he is pretty much a fully functioning young man! I'm still in shock but so grateful that Dr. N.'s promises weren't empty ones after all.

The one thing left to deal with for Thomas is his anxiety. As Dr. N. talked and explained anxiety to Thomas and ways to battle it what it sounded to me like were the kinds of things professionals have said to me when I had terrible anxiety years ago. How normal that all sounded to me yesterday. Finally, we aren't dealing with the unexplainable symptoms of schizophrenia like delusions and hallucinations, we are finally dealing with good old fashioned anxiety. Something fixable, something, while it can be serious and is for Thomas when he's at work, it is something that can be dealt with using good old fashioned therapy and a little help from some sort of medication.

Our plan from this point forward is to treat Thomas' anxiety with a medication called Buspar. It's a non-addictive anti anxiety medication that he can take every day and eventually it will get to work in his body, probably in 3 weeks or less. Yes, it's an addition of another med but he is just about completely off of the clozaril now. We will be down to 3 pills here pretty soon!

So, there you have it, a successfully treated schizophrenic young man. After all of the months of watching him disappear, he is now a light in my life again. I am able to go places without him, he is ok to spend the entire day alone and on my horizon is an actual vacation somewhere.

Tuesday, April 08, 2014

Long Trip Today, For What?

Today Thomas and I will be going up to see Dr. N. and my own psychiatrist for medication checks. With Thomas actually going in the opposite direction medication wise (he's coming off of Clozaril) I have to wonder why we're going up there. If you were to ask Thomas, the reason we're going is to get A & W hamburgers. LOL These burgers are his favorite and we used to have an A & W here in town but they closed and now the only place to get them is up near Dr. N.. I told him the other day that Dr. N. may move us to once a month appointments since his meds are pretty steady and the first thing out of his mouth was, "Then we would only get A & W once a month!!" LOL You can see where his motivation lies for making that long trip.

I wonder though, really, why are we going? The Latuda is pretty much doing it's job, we are decreasing his clozaril and that seems to be going seamlessly. What we seem to be left with now is a worsening anxiety and a lack of ability to control anxiety on Thomas' part. I really can't believe we are at this place finally where we are settled on a medication and it's doing a decent job. Just a month ago I was scared that he would never get better and now I see a positive change in Thomas. This all has been marked by a nearly absent need, on my part, to email Dr. N. every time Thomas has something happen. It's been a wonderful place to be in.

So, I wonder what today will bring. Will this be the beginning of appointment's spaced further apart? Will we finally accept that the medication is working? And for me, are we starting the march towards the next big episode and hospitalization? That is how it's worked every single time. Thomas has an episode, he goes into the hospital, they put him on meds that don't work, he leaves the hospital and sees a doctor and we try all kinds of different meds, then we find "the right one", then we have about 4 or 5 months of goodness, and then one day, out of nowhere, I find myself driving Thomas to the hospital in the middle of the night. Don't get me wrong, I am thrilled that the Latuda is working but I've been in this hamster wheel before and because of my experiences, I have every reason to believe we will find ourselves back in the same place all over again in the next 5 months.

I have this thing which has been termed to me as "magical thinking" where I fear that what I say or think will actually make something happen and often times it does so it's been reinforced even though I know that that way of thinking is maladaptive. I'm in that spot now as I write this. What if my saying we have 5 months till the next episode will make it that that is exactly how long we have? Is that borne of experience or "magical thinking"? I don't really know for sure but in the end, all we can do is wait and see.

So, we make the long drive today, get a check up, find out what we already know, cancel two week appointments and move to month ones and then we will celebrate with a "Papa Bacon Burger" from A & W.

Monday, April 07, 2014

What's Right For Thomas

I wrote the other day about the problems Thomas is having at work and a couple of you responded with thoughts about his work and whether or not it's a good idea for him to be working in the type of position that he is. I have given a lot of thought to it since I read your comments but I have wondered that myself for a while. This job of his has always caused him grief in one form or another and it has not been an easy road for him by a long shot. So, the question is, should he stay there or go and find another job?

When he was looking for a job, every place the rehab specialist pointed him to included customer service in one form or another. Fast food work was out from the start because of the amount of pressure he would be under at a job like that. When I was a teenager I worked at McDonalds and me being a highly anxious person at the time, I was tested every shift I worked. It wasn't easy, the pressure was huge and working with customers wasn't easy. I stayed in the job because I had friends that I didn't want to leave. Putting Thomas into work like that would have been a disaster, obviously, so he avoided even applying there. So in the end, he applied for positions in retail and got the job he did.

Originally he was hired to work a graveyard shift from 11pm-4am unloading trucks and organizing the warehouse. He would have worked in the back of the store with a couple other people but then there would have been no interaction with customers and crowds. It seemed perfect for him and was everything he wanted but the hours were just plain wrong. He was sick, his meds weren't working and what they were doing was making him tired. On top of that I didn't feel like it was wise for him to screw up his sleeping schedule since in the past, when he didn't sleep, he got worse. So, his rehab specialist fought to get him out of that position and here he is now where he is. No back stockroom to hide out in, there are crowds during sales and a raging anxiety disorder to boot appear to be making his employment impossible at times. Clearly, for the most part, he is in the wrong job but the question is, "what is the right job for him?"

I remember back to what it took to find him this job in the first place. It wrecked him to have to deal with the anxiety of finding a job, going through the interview process and waiting for an answer of whether or not he was hired. Applying for a new job would be a job in and of itself. Should I suggest he go through all of that all over again? Somehow I just don't feel right about it. I also have to wonder, "is this even my choice to make?" I know him and I know he would tell me he is fine where he is and because of that I am forced to step back and just watch but then be there for him when he struggles.

I don't know what's right for him or I do but it is out of my hands to make that decision for him. I can suggest to him that he find something that better suits him but without the job rehab specialist he is completely on his own to find, apply for, interview for, and get another job. I could help him but it almost seems cruel to put him back through that process. Really, we can't win. Every direction we turn will have pitfalls. At least now he is somewhere where the managers know he struggles and are flexible about it. Perhaps working in therapy to learn how to fight through the anxiety is our only answer. It is failing miserably at the moment but hopefully as the clozaril leaves his system and the Latuda gets to work all on its own, he will be successful and happy in the job he already has.

Saturday, April 05, 2014

Not Quite Out Of The Woods

There is always a reality check for me when I let go of things too much. My day yesterday was about planning my trip with my mom to Vegas. It blossomed into a trip that would include two of my very good friends for a night or two. I was so excited thinking about all of the fun that we would have there.

Then as my evening began I took Thomas to work. He went there feeling really good, another success under his belt. He went there with no lorazepam and with a positive attitude and there was promise for a good night ahead for him.

I came home and sat down to watch some TV and within less than an hour my phone rang and it was Thomas. He sounded like hell. I instantly felt terrible for him. He asked me if I could come pick him up and I quickly agreed but then thought of his decent health lately and I called him back. I asked him if instead he would like me to bring him a lorazepam and he could take it and try to make it through the rest of his shift and he told me no and practically begged for me to come get him.

I was there in 5 minutes and what I saw walking out of the store was someone who looked like they had fought a huge battle and lost. He got in the car and I tried so hard not to start questioning him. I wanted to continue to practice my backing off that I have done lately but I looked at him and he was white as a sheet and could barely speak. What had happened was that the store got very crowded and he had what sounds to me like a panic attack and he said he had almost vomited twice. Well, he definitely looked like someone about to be sick. I told him to roll his window down and try to get some air and he stiffly adjusted himself in his seat and rolled the window down. I looked over at him and I could see how much he was struggling. He was sweating a little and pale so I reached over and felt his head thinking he might have a fever. He was a little warm but seemed fine otherwise.

Then I couldn't help myself, I had to know what his anxiety level was at. When he told me he was a 6/10 I was taken aback. How had he gone from fine to a 6? He's been doing so good lately! Well, apparently the crowd felt huge to him and he felt trapped and with nausea added to the equation now that he had reached a 6, he was really suffering. He barely spoke on the way home except to answer a couple of my questions and he sat there beside me appearing very beaten down to me. I turned to him, squeezed his leg and said, "I am so sorry kiddo that you have to deal with this." I wanted to cry. I have been where he is now, plagued by serious anxiety, and I knew just what he was feeling. To me there is little of the garden variety mental illnesses that compare to serious anxiety. For me personally, I can deal with my bipolar issues but when anxiety enters the equation I am down for the count in a big way. Like his therapist says, "anxiety can be a bully" and most certainly for Thomas last night, that nasty bully had won this battle.

My poor kid, why can't he get a moment's peace where work is concerned? I have, since last night, thought of a new plan for him. Instead of leaving work, maybe he ought to try just excusing himself from the sales floor and going in the back and taking a break for a little bit to calm down. Perhaps that's an option for him? I don't know but I want to see him feel successful and feel like he is in control of his anxiety.

So, poor Thomas had a very rough night and consequently my plans for Vegas go on the back burner for a bit. The truth is, I would give up my trip to insure that he is ok and can get through a day and count it a successful one. Perhaps he's not far enough into his "healthy phase" for me to plan on leaving him. He is awfully new to it and I realized last night that he will have withdrawal symptoms from leaving the clozaril behind so maybe it'll be a while before big changes like vacations for me happen. I am ok with that. My one and only desire is to see Thomas be successful at living his life. The rest is just fluff and frivolity on my part.

Friday, April 04, 2014

Las Vegas, Baby!!

My mom recently planned a special trip across the country but then changed her mind a couple nights ago and now she is stuck with a couple very expensive first class plane tickets. She didn't know what she was going to do with them because they were non-refundable so she needed to find a place to go to use them up. This wasn't an easy task at first but then she discovered that she could break them apart in to smaller trips that leave from our town and go places along the western U.S. You see, we don't live where you can fly first class anywhere. The planes that leave our town are little puddle jumper planes so we're kind of limited in our seating choices. However, she had a brilliant plan for herself, she would go to Las Vegas 3 or 4 times using those expensive tickets broken up into smaller ones.

She talked a lot about taking a trip in May alone but neither she nor I felt she was quite ready to go anywhere alone since my daddy has just passed. We talked about how much fun she would have when she did finally go and I found myself sitting there listening and yearning to go myself. Oh what I would give to get out of this place and go somewhere fun with my mom!! We spent a good portion of the day together yesterday and we talked about everything including how good Thomas is doing lately. We talked enough about it that it began to dawn on me that this is our time!

It's our time!

For 2 years Thomas has been sick, for 2 years my mom has dedicated her life to my daddy and both of us in those 2 years and especially in the last few months have yearned to just get out of this place and go anywhere. As we sat there and talked I began to feel the invisible yet heavy blanket of caregiving begin to lift off of me. They say that sometimes people "see the light" when they discover something new and exciting or when they see changes in their lives that they hadn't seen before. Well, let me tell you, I was seeing the light! I was seeing my freedom, I was seeing that (dare I say it???) I could actually get away somewhere and have fun and not only that but I wouldn't have to worry about Thomas. Could it be? Could I actually get away from it all?

Within seconds of the realization that I could, I told my mom, "Let's go, let's do it, let's go to Vegas!!" They're probably some of the coolest words I have spoken in a L-O-N-G time.

I did go home and I went into Thomas' room and I asked him what he thought if grandma and I went to Vegas and he were left to be alone most of the time for 4 days. At first he was supportive and then I watched as something fleetingly crossed his face. I said, "Go ahead, tell me what it is." He stumbled over his words so I said to him, "Be honest kiddo, what's up?" What followed was him asking if he could go too. I instantly felt horrible. What was I thinking? I can't leave him alone!! Then it dawned on me, he just wants to get out of here too. Poor kid. I talked to him though about what it would look like to go to Vegas with grandma and I. We would play the slots a little but most of the time would be spent wandering the hotel shops and I told him that he just wouldn't have any fun with that. He agreed but his face fell as he did. I felt bad but I realized that he was wanting to go for fun, not because he was scared to be alone with his monsters. I told him nothing was happening any time soon but that grandma and I were going to go at some point. He was fine with it, he really was, and that light I saw earlier with my mom burned white hot.

I can go somewhere. I can leave it all behind!! For once in a long time I will be able to breathe and have fun. It's an amazing feeling. I didn't realize how tied down I was until yesterday. So there it is. I can live again and you know what?

It's Vegas, Baby!!!!!

Thursday, April 03, 2014

Into The Night

Last night I did the bravest thing a mom of a young man just now getting well from a round with serious schizophrenia can do. I sent him off into the night to hang out with friends. Sure it doesn't sound like much but it totally wrecked me for the evening and I couldn't go to bed until he was home safe from his adventure.

Yesterday during the day Thomas came to me so excited because a group of his friends invited him to play a night time game of capture the flag. I've got to say, it thrilled me to death to see him so bright-eyed and excited as he told me his plans for the evening. One of the best signs of a young man with schizophrenia getting healthy again is that they begin to become social again. It's what we get asked about by his doctors every time he sees them, "Are you socializing Thomas?" This, of course, is usually followed by Thomas admitting that he hasn't been and that he's been glued to his computer from morning until bedtime. Last night all of that changed though.

All day I was so calm but excited for his adventure into the night. I imagined him laughing and joking around and acting goofy and having moments of feeling accepted by his friends. I like these kids. They come from good homes, they have a strong moral background, good parents and most are in college. A mom couldn't ask for better friends for her son. I was doing good about him going, was thanking God for giving my son a chance at a real life and I was calm.

Then, for me, all hell broke loose inside my heart and mind. As the evening turned to night time and still the friends didn't show up to pick him up I began to wonder if they were coming at all. I became more and more nervous about the late hour and I worried that they were rejecting him. Then at 9:15pm our doorbell rang and Thomas emerged from his room to answer the door. He asked his friend at the door to hang on a second and he went back to his room and put on his medical alert dog tag and grabbed a house key and as he walked out the door, said "don't wait up, I'll use my key to get in." Could it have been a more perfect mom-of-a-teenager moment? I said goodbye to him, told him to have lots of fun and he disappeared into the night.

I sat in my chair watching TV and it slowly crept up on me. The anxiety, the worry, the questions, the paranoia--the kind only a mom of a young man with schizophrenia can have. You see, his friends know he's sick and I was worried that they might do something to provoke him. Yes, apparently Thomas comes by it naturally, the paranoia, but I couldn't help myself. My husband and I got ready for bed and I got in bed and my world came to a crashing halt. I laid there on the verge of a panic attack, I tossed and turned, I stared at the ceiling and finally my husband turned over and held me. "Are you ok?" he asked. No...no I wasn't ok, I was scared to death about Thomas and I jumped out of bed, put my robe on and went to sit back in the living room to wait. The hours passed and I longed to text Thomas to see how he was but I refused to do it because this was one of those times I knew I had to let go and stop being a mom.

My medications finally took effect and I felt myself drifting off to sleep so I laid back in my chair, turned my phone volume to high and I set it on my chest and I drifted off to sleep waiting for Thomas to come home safely. At 1:15am a text came in from him, "Mom, I'm coming home." it said. I was elated. Before long my boy came walking in the door. I tried to act casual and I slowly got up and started to shut down the TV and lights. Thomas came out of his room and he asked, "Mom can I have a hug?" Yes yes of course you can I wanted to shout but instead I grabbed him and hugged him tight and told him to have a good night and that I couldn't wait to hear about his evening tomorrow when he got up.

Through it all, for him, I hid every anxiety, every worry, every look of concern and I sent him off, free, into the night to be a kid again. I did the bravest thing a mom of a son just now healing from schizophrenia can do. I let go. I let go and he came back to me.

Wednesday, April 02, 2014

Towards A More Independent Thomas

I'm pretty certain Thomas' therapist is reading my blog.

I say this because yesterday's session covered everything I talked about in the blog yesterday including that I was called in to the session. As I sat there and each topic I covered in the blog was touched on, I was having a sort of deja vu experience going on. If that is the case then I'm kind of glad he's here because he'll get a day to day snapshot of what goes on here and how Thomas is and how I'm feeling. It could be a very good tool for him.

Since I wrote what I did yesterday I guess I don't have to cover it all again except to say a few things. He brought up Thomas' moving in to his grandma's and I was right in that his intention had been for Thomas to literally move in with grandma. I had tried to give him the benefit of the doubt in that I was hoping what he was saying was that Thomas should VISIT his grandma but he was quite set on Thomas' moving in with her being a bridge to independence. I explained to him that that option was never on the table and probably never would be. In it's place what we did decided was that my husband and I would take a weekend and go somewhere together leaving Thomas alone in a simulated independent environment. I hadn't given that much thought since it was last brought up because Thomas had expressed that he was afraid that his paranoia would be very bad and he didn't want us to leave. Things appear to have changed though so it looks like a weekend away with my husband is in the works! Woo hoo!!!!!!

I was finally booted out of the session which was fine since we had covered the things that I wanted addressed. I sat and waited for Thomas in the waiting room and then the door opened and I was called back in. What came from that is kind of cool, I think.

The plan for next week is for Thomas and his therapist to walk to a local fast good restaurant but do it by way of walking through our local police headquarters. The idea is that his therapist wants to desensitize Thomas to the police. I think I like this idea. In fact, I like it a lot. Thomas will be with a safe person and he'll get a chance to experience something that scares him and hopefully he can be healed from it.

The plan the week after is for the two of them to go up to the college and look into taking one class. We all agree that Thomas' choice in a major is a little concerning because it feeds his delusions but Thomas' socialization is more important.

The other plan is to get Thomas to learn the city bus system and maybe use it to get himself to work. That ought to ramp up his anxiety but I think it would be a good idea for him.

I have to wonder though, I know the therapist is jumping in with and pushing these new plans because right now Thomas seems to be getting better so we're trying to "strike while the iron's hot" but it makes me a little nervous. It feels like we went from zero to sixty in a short time and perhaps we might be putting a little too much on Thomas' plate. Only time will tell so for now, as far as Thomas and his therapist are concerned, I am going to set aside my doubts and fears and let the two of them have a go at teaching Thomas independence.

Tuesday, April 01, 2014

The (Not So) Hidden Agenda

I am now convinced that Thomas' nausea on Sunday night was anxiety related and was in place because of work. I only say this because yesterday about 3 hours before work he came to me asking for a lorazepam and begging me to get dinner cooked. This "time anxiety" of his is a tenacious little bugger and I wish he could be free from it. He was given a lot of hours at work again this week and I thought if he started working more that he would find a way to use that to prove to himself that things will be ok and that he won't be late to his shifts. As it stands right now, he is in the same place he's always been with this issue. I liken this anxiety to a little gnat that flies around your face and you can't bat it away because it's so small and annoying. Not that his anxiety is small but it is very gnat-like and it's a real pest.

He has therapy today which will be good for him so hopefully he can talk about what happened in the last couple days but I personally have a little trepidation about it because I don't think the two of them accomplish what truly needs to be covered in session. Last week's little stunt about planning on having Thomas move into his grandma's is still fresh in my mind and I feel on alert for what may be thrown my direction next. It's not that I can't handle that kind of thing, it's just that it makes me so mad.

The other thing that's been plaguing me about his therapist is still the whole thing from a while back where he appeared to be talking Thomas out of being on medication. He can call it what he wants, he can defend it until the cows come home however he hasn't shown me that he's dropped the subject entirely. There have been at least 2 sessions since where he has alluded to meds not being a good choice for Thomas. I'm not sure if it's because I have my defenses up after that whole mess or if I'm just imagining things but he has, a few times, made these comments about meds that make me mad. I'm not sure if Thomas picks up on them but I sure do. I fear his therapist will eventually wear Thomas down and he'll agree that meds aren't the right choice for him. I know how it works, how someone can plant little thoughts here and there between the usual stuff and eventually you come to what seems to be your own conclusion about the thing they want to change. I've studied psychology in college and I've had experience with some world class manipulators not to mention that I have been in therapy myself. I know how this works, how the "game" is played and in this instance, with the meds, I am not going to allow the therapist to win this round if I can help it. I'm terrified for Thomas what a life without any meds would mean for him.

So, needless to say, today I would like to reclaim my spot in that low-to-the-floor, extra cushy chair in his office that I hate so much. I want to hear what's being said. I'll keep my mouth shut, I think, (LOL) and I'll just pay attention to the subject matter being discussed. Something has to be done to help Thomas with his anxiety and I need to insure that the therapist's agenda about meds is stopped once and for all. We shall see. I will write about it tomorrow though.

My Most Popular Posts...

Follow my posts by Email:

Follow Me On Twitter