Friday, August 30, 2013

Where We Find Ourselves Today

On this, the last day of Thomas' vocational rehab program, I find myself anxious about what the future holds for him.

He went from the stress of high school and the hospitalization at the end and then to graduation and then fought to get to feeling better and finally he got this job through vocational rehab. He's struggled and still does with his schizophrenia but
he's stayed working and it has been that job that has given him purpose and direction.

Now, today, with a heavy heart he is going to his last day. He's expressed sadness, which is huge for him to acknowledge his emotions and label them correctly, and he feels lost because he doesn't know what he's going to do with his days. He's been scrambling for days to figure out ways to stay a part of the program and for all intents and purposes they are booting him from the nest today and are sending him into his future, their work with him done.

In over a year and really, in the last few months there have been losses both to his psychological health and to his life as he has always known it being a student (wake up, eat breakfast, go to school, go to friend's houses, come home and eat dinner, do homework, watch TV, shower, go to bed), and this day will prove to be a pretty significant loss too.

I was brought into his therapy again yesterday and I could see that his therapist was shoring up the production, giving Thomas coping skills, and giving me, well, coping skills too a little bit. He asked questions of Thomas about how his illness manifests for him, like when something happens does he jump to scary conclusions like:

Mom is late getting home. I think she has been kidnapped by aliens.

as opposed to

Mom is late getting home. I think she got tied up in traffic.

We all came to realize that when he is in the throws of his illness that the conclusions he comes to tend to land on the more scary or sensationalistic side.

We set up a knowledge base of things like I mentioned just above, among other things, of what to expect in the coming months and I believe that even the good doctor, who is Thomas' greatest champion and most positive, can see that we are all preparing for the worst in the next few months. We figure if we can know Thomas' base behaviors, that whatever gets thrown our direction from him we will be able to help him cope.

It is the dawning of a new day, a new era for Thomas. I've often thought about how this is the time in a young man's (or young woman's) life where if they're going to develop schizophrenia then this is the time. It seems cruel that for the average person this time of change into adult hood is exciting and the future looks so shiny bright but for our loved ones just now developing the illness or who have fought it since they were young, this is a time of trepidation for what is to come.

That is precisely where Thomas and I find ourselves today.

Thursday, August 29, 2013

Battle Of Wills

The other night Thomas and I locked horns. Things started out as an average show of anxiety and quickly escalated into a battle of wills during which I backed down after realizing that there was more to the exchange than I originally thought.

It began innocently enough. My husband was making pork chops with some fragrant spices on them. The house was filled with the wonderful smell of them sizzling in the pan. About that same time I was finishing up making some green apple jello and as I poured it into dishes the smell mixed in with the pork chop smell and that's when all hell broke loose.

Thomas came into the kitchen, a pacing, anxious lion and asked what the smell was. Both my husband and I thought little of it and told him it was the chops and the jello. He demanded to know the exact smell he was smelling and when I told him it was green apple he begged me to let him spray room spray in his bedroom. I told him he could but he was frozen in place. I reminded him he could spray something and he asked if he could get the vanilla spray from downstairs. IT HAD TO BE VANILLA.

He came upstairs and filled his room with a cloud of vanilla Febreeze and then went and sat on the couch. I came around the corner and he was sitting on the edge of the couch obviously upset and he looked me straight in the eyes and said,

"I have to shower right now. It's time."

I told him dinner was less than 10 minutes away and he got more agitated and demanded that he get to shower RIGHT NOW. He told me that this is the time he always showers, that he has a routine and it had to be done now. I was watching him melt down in front of me. I kneeled down beside him and took his hand and I said in a gentle voice,

"Thomas? Can you see that you're freaking out right now over a shower that can wait till after dinner?"

He repeated in a quieter tone that he had to shower right now, that it was time, that 7 o' clock was his time. I made one last attempt to get him to have dinner with us and in that moment I watched all the doors of his mind slam shut, his face became angry stone and he averted his eyes and said nothing else.

I knew then that I'd lost him to the other side and I told him I'd leave his dinner for him for when he got out of the shower.

Do you know what gets me about this illness? It's the triggers. They're like hidden bear traps in the underbrush and you just don't know where they are until you're painfully trapped in one trying to fight your way out. That's how I imagine it must be for Thomas because how it feels to me is that I am dealing with an angry, hurting animal looking for any way out of the predicament he's in. 

In this case the culprit seems to have been the green jello/pork chops combo and what started as innocent dinner prep turned into a battle of wills which I now wish I had been thoughtful enough to back down from sooner. I have no idea what was in his mind, what swirling, anxious thoughts threatened him but I know the battle was not worth winning in the end if the price was Thomas' sanity.

Tuesday, August 27, 2013

Tall Enough To Ride This Ride

I remember as a kid how much fun it was to go to the amusement park. I’d stand outside the fence looking at all the rides and was always drawn to the big wooden rollercoaster. For years I would run to the entrance to the ride to measure myself against the height requirements and time and time again I would find that I wasn’t big enough. When I was finally tall enough to ride that big wooden rollercoaster I got on it and found myself terrified as it rounded bends and dipped down hills throwing me off of my seat and into the bar across my lap.

Years down the road I found myself with my little 4-year-old Thomas. There we were at Disneyland and standing in front of Big Thunder Mountain Railroad—a rollercoaster with the theme of an old train barreling through mountainous terrain and deep into mines. Thomas was a HUGE fan of trains and wanted to ride it so badly. He hit the height requirement right on and we boarded the ride.

There my boy sat beside me, excited for the ride to start. We rolled out of the station and began the climb up the hill. What ensued would be a metaphor for what he and I face now.

Into the dark we went and he grabbed me and huddled close. He took my hand and covered his eyes with it as we passed by menacing looking miners and other characters. As the ride careened around and through the mountains I felt him slide away from me to the other side of the car and I grabbed him and tried to hold onto him with each curve that tried to rip him from my grasp. His terror was palpable and my desperation to keep a hold of him and keep him safe next to me grew exponentially as each moment passed. We rolled into the station gripping each other, tears rolling from his eyes and we couldn’t get off that ride fast enough.

There we stood on the exit ramp weakened mentally and physically from a wild ride. I held his hand as we left the ride area, never to return.

So here we are now. He is 18, I am 41. He is still my boy and I am his mom. Our “Big Thunder Mountain Railroad” is schizophrenia and it threatens often to rip him from my grasp and now, no matter how much I cover his eyes, I can’t protect him from the things he sees and that haunt him. We are both tall enough to ride this ride and I think both of us would give just about anything to walk up to the proverbial sign and find ourselves refused a ride on this ride because we’re too big, too old, too ANYTHING to move up the ramp to the train. But we’re here now, both of us unsure of what lies before us but one thing I know for certain.

I am getting on this ride with him and it will be him and I till the ride stops.

Monday, August 26, 2013

A Fork In The Road

One of the things that came out of last Thursday's therapy appointment was an agreement that what we are seeing in Thomas could be a manifestation of depression. Before the diagnosis of schizophrenia, Thomas was treated for depression and a serious case of anxiety. He took antidepressants and I thought that would be Thomas' fate, a life of depression and anxiety, sad but manageable since I had suffered from that myself. Little did I know that deciding that Thomas has depression now would result in a diagnosis that now I consider the worst of all mental health diagnoses.

Schizoaffective disorder.

For those of you that don't know, Schizoaffective disorder is not only schizophrenia but it's schizophrenia with an added diagnosis of some form of mood disorder be it depression or bipolar disorder. It's not enough to suffer from, in my opinion, the world's worst mental illness but we get to throw in a chronic and debilitating thing like depression on top of it. This is what we're looking at now for Thomas.

This diagnosis has been on the table from the beginning but doctors were trying to avoid the diagnosis of schizophrenia to begin with so throwing this one in the ring instead seemed to them like a cruel thing to put on a young man. It's been almost a year now and we can't deny the original diagnosis of adolescent depression and we certainly can't deny the schizophrenia so what we're left with is, yet again, a sobering reality.

On Thursday we finally faced that the eventuality of the diagnosis of schizoaffective disorder is upon us. What does this mean for Thomas now? Well, it means a lifetime of the weight of depression along with schizophrenia from time to time and it means another round of medication roulette. It is my understanding that treating the depression is far easier and more successful than the treatment for schizophrenia though that has not been my personal experience.

So the fork in the road is in front of us now. Do we keep the diagnosis of straight schizophrenia or do we change it to schizoaffective disorder instead? We're making a collective decision as to what to do next and now I find myself preparing for another wave of trials for Thomas. He's young and my hope is that we're catching all of this early enough and will have a high success rate. The reality though is that with this illness we have only just begun and the picture is one of complications, heartbreak and difficulty with an occasional sprinkling of successes in between.

Schizoaffective disorder. Could it get any worse?

Don't answer that.

Saturday, August 24, 2013

Another Saturday Away

Well guys another Saturday is here and I regretfully will not be able to do be here much. This is the second Saturday that this has happened and I am very unhappy about it. There are two things going on here that are stopping me.

First, my caregiving duties at my parents house for my dad are still one of the things front and center in my life. My mom and I are lost as to what to do to make life better for my dad and there isn't a soul on earth that seems to want to tell us what we can do--at least not in my town. We have called doctors and they have directed us to home health care but that isn't quite what we need. We even ran into one of my dad's doctors when we were out yesterday and that guy took one look at us and you could see he wanted to run away as fast as he could and basically he did. We were left shaking our heads, granted we were in public and maybe he didn't want to get wrapped up in doctor stuff but still. Weird.

Where my dad is concerned my mom and I are trying to figure out what to do. He is now dead weight when getting in and out of chairs and my tiny mom is no longer able to lift him out of chairs and bed and she has hurt her knees ,her hip, and her back. So now it will take two of us to do all of that. Because of my dad's dementia he doesn't fully understand the gravity of the situation and forgets and sits in a regular chair as opposed to his electronic lift chair before we can stop him and then we're left trying to get him out.

The other thing is my Thomas. I have written about how well sessions went this week and they did but I alluded to some other things that were going on but that I wasn't ready to write about them because I am still processing them.

For the time being I am afraid to leave him alone because he doesn't want to be left alone and because I don't feel like he's safe so if I go anywhere, he wants to go with me. He has elements of a ticking time bomb (not that that's new, it's just morphed yet again) and I'm the one holding the bomb very carefully while someone cuts the wires to deactivate it, except my wire cutters are doctors that we see once a week. So, in the mean time I'm on my own with this one. I will tell you guys about what's going on in the next couple days because what's happening is something I want you guys to know about because perhaps you have been there or might be there someday and I want to be of some help to you.

I have a lot going on and I am tired. My sister with 8 kids showed up yesterday (just her alone--not with the 8 kids thank God) and she told me she doesn't know how I do what I do. What a sobering thought coming from my sister who has raised 8 kids and been through a hell of her own in the last few years with a severely bipolar daughter. On top of that, Thomas was witness to what it takes to care for my dad yesterday and with eyes welled with tears he grabbed me and hugged me and said that the situation is so sad and that he didn't want me to get old. Bless his heart he sees how hard it is to take care of my parents but doesn't realize that making sure he's safe and sound is something to be scared about too.

I'll check in from time to time over the weekend but I'm going to take the weekend off, I think, and try to regroup. I hope you all have a good weekend. I'll be thinking of you all and to those of you that have sent me private messages needing support and advice, I will work on getting back to you this weekend so hang in there ok? And everyone? Remember, you are not alone.

Friday, August 23, 2013

What's Best For Thomas

Yesterday was Thomas' regular therapy appointment. His therapist always asks me what was talked about in the medication appointment so I wrote everything down that was said. Here I was getting ready to go into another appointment with yet another doctor with a list of things I had observed.

It was rather cute because as Thomas and I sat in the waiting room, he saw me rifle through my purse and pull out the bright yellow scrap of paper that I had written notes on. He gave me a wry smile and asked,

"Is that about me?"

I had to laugh. He knows me so well. I told him that I had written down what we had talked about in the medication appointment and I handed the paper to him. He held his hand up refusing it and went back to texting.

His therapist came out and asked, as he always does,

"Mom? Any updates I need to be made aware of?"

I waved the paper at him and told him that I thought we all should talk. Into his office we went and I took my seat in that maddeningly low, squishy chair that I always feel like I'll never be able to get back out of. Here I was again, nervous, because I was going to tell him all of the things I had witnessed. We got down to business and I began at the top of the list and went down. It all went really well and Thomas was very forthcoming and backed up what I was telling the therapist. We worked together on the things I brought up and several times when I thought the therapist was pushing Thomas to give information in front of me that I thought he might not want me to know, I squirmed in my seat because I consider his therapy time, for the most part, his private time free from my prying eyes and questions.

At one point in the session Thomas' therapist made direct eye contact with me and asked,

"Melanie, I sense some self-consciousness when you're in here. Would I be interpreting that correctly?"

Yes he would and I told him he was right. I said,

"The thing is, I feel like this is Thomas' time and that there are things that he might want to keep private from me so when I sense we're getting close to one of those things I want to be sure he feels free to kick me out of the room so he can speak freely."

His therapist turned to Thomas and asked him if he wanted me out of the room and Thomas said no. Between the two of them they assured me that if Thomas wanted me out of there then I would be made immediately aware and I'd be out of there. That wasn't the case today.

I also told him that I just wanted to be sure that I wasn't overstepping and not giving Thomas a voice. To that he said,

"Melanie. I think Thomas and I would agree that having you here is helpful. Right Thomas?"

He nodded and said yes.

"And what we want here is what's best for Thomas and I think that it takes all of us to be sure that he is getting the best."

I don't think a mom could hear anything better than that come out of the mouth of the therapist treating her schizophrenic son. It got better though. He told me that if he ever made me feel like I shouldn't tell him all that I was seeing then he apologized for making me feel that way. It really was a liberating moment after the visit on Tuesday with the meds doc not to mention all of my concerns about the emails I send to Thomas' therapist letting him know the things that I see happening.

So, yesterday was productive in a hundred ways which included making sure that I, too, had a voice. Thomas and I learned a lot in the appointment apart from the exchange I'm writing about here and we're looking down some new roads in treatments and yet again Thomas' therapist and I were made more aware of Thomas' inner workings.

This is a crazy journey. The craziest. But when Thomas and I got in the car and he turned to me and smiled and said he loved me I knew then and there that yes, we are all doing what's best for Thomas.

Thursday, August 22, 2013

"Stage Mom"

I had to laugh the other day when I was in Thomas' meds appointment with him. Let me first say that often the reason I go in there is because Thomas asks me to or when I ask him if I can come in he agrees. He always tells me that he forgets things and he's glad that I'm there to help him remember. We've never had a problem with me going in unless the meds doc himself kicks me out, which HAS happened a few times.

The other day though we were talking about all of Thomas' symptoms trying to sort things out between the dehydration episode and the increasing/morphing delusions. We had a real round table discussion going and I felt like I was being heard and Thomas was getting a voice.

Then it happened. While in there, I was reminded that one of the reasons that we had been given a 3 week appointment as opposed to a 6 week one was because we were watching not only his delusions but also what seemed to be a creeping depression. Towards the end of the appointment I spoke up and I said,

"I forgot. I just wanted to let you know that he seems to be doing better depression-wise. He seems happier and I haven't seen some of the low moods and agitation that we've been seeing previous."

His meds doc didn't miss a beat, seemed to almost wave me off and he turned to Thomas and said,

"Is that how YOU feel Thomas? How are YOU feeling? I know what mom SEES but what do YOU feel?"

I wanted to sink through my chair and disappear. I realized that I had somewhat overstepped and instead of asking Thomas if his depression was better I was so busy talking about what I had seen. There are limits to the usefulness of my opinion and I think I reached it in that moment. Thomas, of course, said he felt much better but I was left wondering if I had gone one step too far. I'm kind of guilty of that in other areas of my life. Sometimes my motto seems to be:

"If a little is good then a lot is better."

Well, not in this case and I found myself relegated to the proverbial corner and a scarlet "O" slapped on my forehead for "overprotective", "overinvolved", "over the top". Effectively I had become a stage mom, so busy running the show that I hadn't stopped to consider Thomas' thoughts in this instance.

Really though, I have a sense of humor about it. My heart is in the right place. Thomas has never hissed at me to shut up and the meds doc still returns my frantic phone calls in between appointments so all is well. I'm still new to the game and while I've been working for my degree in psychology, somehow that knowledge escapes me when it comes to wording questions correctly and letting Thomas, or others, speak for themselves in these sorts of situations.

Here I'll stay now through the next couple of appointments, hunched in my chair, communicating the necessary information but not being a "stage mom" orchestrating the show is going to be my "homework" for the time being.

Wish me luck. It's not in me to keep my mouth shut. It hasn't been since he got sick and until I feel like everyone is being heard, it will probably remain in me.

Wednesday, August 21, 2013

What's Supposed To Happen, Happens

The meds appointment went well yesterday and Thomas and I came away from it, our relationship unscathed. I did what I didn't want to do but will always do and that is to tell his meds doc about the delusions that Thomas has been dealing with lately. I stressed all morning until the appointment about how I was going to slip it into the conversation and I debated if it was even worth mentioning. I also considered doing what I usually do and that is to discuss the topic with Thomas before the appointment. In the end, I did what I have always done since Thomas became sick and that is to trust my gut, so I waited.

I told his meds doc about the weird episode Thomas had with his physical health on Saturday and we began piecing together what might have caused that. In amongst all of the possibilities it came up that it might have been severe anxiety and when that possibility arose, I realized my door to talking about the delusions was miraculously opened right before me. We talked about how Thomas had been at the same house a week before and there had been a big fight between his friend and his friend's father and how that had caused Thomas some distress and then we thought perhaps the physical symptoms we were guessing about were from anxiety about being in that same situation.

Then since we were busy pinning all of this on anxiety I took the opportunity to tell the meds doc about the discussion Thomas and I had on our way up to his friend's house which brought worsening delusions to my attention. I asked Thomas if I could speak freely with his doc and I told him that he could tell me if I was off base with my thoughts and he gave me permission. Bless his heart, he always gives me permission. Not only that, he is always honest about what I say and admits freely to anything I say that is in line with HIS truth.

I sat there with a racing heart and I told his meds doc about what Thomas and I had talked about and I hypothesized out loud that perhaps the panic symptoms might have been exacerbated by our heated conversation on the way to his friend's. Thomas admitted that the conversation had upset him but he didn't think that it was related to his strange physical symptoms.

There it was, laid bare for all to hear, everything I had been worried about saying. Here we all were and the truth was out there and the doc now knew that Thomas was still struggling with delusions and I could rest because I had done what needed to be done and that was to make the doc aware of what Thomas had been struggling with. At that point I shut my mouth and let the two of them hash things out and it turns out that things had been worse than I had thought. So, thank God I had spoken up.

In the end, without my input, Thomas and his doc agreed that he should increase his meds a little bit. I am happy with the decision because the increase isn't drastic so there shouldn't be too many new side effects to deal with and hopefully those nasty delusions will be slowed down some. As for the strange physical symptoms that Thomas had on Saturday, we all came to the conclusion that it had been dehydration so Thomas is going to try and start drinking even more water now.

Since Thomas has gotten sick and the whole march through the psych/medical system has commenced, what's supposed to happen has happened just as it should and yesterday's appointment is proof of that. Between Thomas, myself and his meds doc we have made quite a good team working towards better mental health for Thomas.

As for yesterday? Whew!!! That's all I've got to say to that.

Tuesday, August 20, 2013

The Wave Of Panic

Oh my gosh, just oh my gosh!!!!!! I just about died of a heart attack just now.

I was sitting here at my desk working on this page and Thomas' cat wandered meowing into Thomas' room. Moments later I heard this weird sniffing sound. I ignored it for a fraction of a second and then turned around to see the cat running from Thomas' room. The sniffing sound got louder and everything in me told me to get into Thomas RIGHT NOW. We live in a small house. The walk from my desk to his room is short.

The panicked run is even shorter.

It's funny how in a scary situation time slows down. In the second that it took me to get to Thomas' room I had decided that he was having a seizure because I could see movement in his room and that sniffing sound had a sort of rhythm to it. With the diagnosis made, I then prepared myself for the horror of coming around the corner to find my boy in the middle of a seizure. I can't tell you, unless you've been there yourself, how in a moment's time, in a crisis situation, you make all of these decisions, envision the absolute worst and then prepare yourself for it. I've been in these sorts of situations enough in the last year that I've become quite adept at operating in crisis mode.

Now that I've effectively scared all of you too, what I found was Thomas hunched over his trash can mopping up a serious bloody nose and the sniffing sound I heard was him trying to stop it. I stood there trying to sort out in my mind why he was just sitting there and not writhing on his bed and he looked up at me. I must have had panic written all over my face because he looked at me and he said,

"Mom, it's just a bloody nose."

Then the wave of panic that had chased me down the hallway to his room washed over me and I had to sit down on the edge of his bed. All I can say is, even though there was a lot of blood, we are used to bloody noses. He gets them all the time, especially now that he works in the dusty environment of the woodshop at work.

I'm back at my desk now, my boy is safe and sound and now I can work towards regaining a normal heart rate. Oh my gosh. Seriously. Ugh. Thank God he's ok.

It's Not My Choice

Today is Thomas' meds appointment. It's been 3 weeks since symptoms reared their ugly head again and the medicine seems to be working some. There have been some delusions that have been concerning but I have heard them before, just not in the ferocity as I did the other day. I don't know if I should bring them up because I feel like all I do in doing that is knock Thomas back. I feel like a tattletail. However, let's get two things straight here.

First, I am well aware that the doctors need to know about these things. I am also aware that when I speak about what I see, both the doctors and Thomas are listening and taking these things into consideration. I am not pushed aside in any way, shape or form. I am also aware that these delusions are symptoms of his schizophrenia and without some sort of intervention, they will remain and probably get worse. There is a part of me though that really hates to tell doctors about them because in an odd way I feel like I am trying to bring down the very essence of Thomas, even if his essence includes extreme, out of the ordinary views of his world. I get that the hallucinations are a problem and they scare him and they need help but the delusions are just his feelings about the world and really, aren't we all entitled to our opinion??

This is what I go through on medication appointment days. All of my raging self doubt about whether or not I'm doing the right thing for him comes pouring out of my gut and I feel sick.

Then, there is the other side of the coin. Thomas is 18 now. THIS IS HIS LIFE. I can tell doctors about all kinds of things that are going on but ultimately it is Thomas' choice if he wants to increase or change his medication. Now, I'm going to say this and I'll probably regret making it public but so help me God, it's the truth.

There is a part of me that is thankful that he is 18 and can ultimately decide for himself. In the end, it's his body and his life and no amount of my telling the doctors what I see will necessarily change Thomas' mind about meds. If in the end he does decide to change or increase meds or if he decides to do nothing at all or worse, go off of them altogether, it is his decision. I can be there for him to help him through the side effects and ensure that he is feeling the best he can under the circumstances but when he walks out of the doctor's office and tells me that he and the doc decided to do something with meds and because when he turned 18 the decision was no longer mine, I now don't have the blood on my hands about the decision. I know I sound awful but I hate when it is me that is responsible for imprisoning him inside of a heavily sedated, heavily medicated mind where his life becomes about dragging himself from the bed to the couch and back again.

There is NOTHING ON EARTH I WANT MORE than to have Thomas healthy and in the end I'll speak up about the symptoms I see but in the end he gets to decide about what happens to his body and mind. It's not my choice anymore.

Monday, August 19, 2013

Up and Running. Sort of.

With all of the changes in my family lately my entire life has shifted yet again. I will now be taking over some of my dad's caregiving so that my mom can have a break every day for a few hours so my favorite time to write (7am) will be shifted to about 10am now so a lot of you won't see my postings till you get home later in the day. I'm really going to miss my morning writing time because that's when my mind is the clearest but family comes above all else. Hopefully my future posts will still reach you all even though some of you morning readers will miss them in the morning. It is my hope you'll pick them up in the afternoon or evening.

Now, frankly I'm so sick of apologizing and making excuses for my not being around. This is solely my issue and one I'll work on. I know I don't need to say I'm sorry etc. but I think it's in my DNA to do that. I'm also sick of talking about things that are off the subject of this page's original intent. Many of you have come here to better understand schizophrenia from my point of view and somehow it's become about not only understanding schizophrenia but also understanding the changing roles of an adult who has a young man with schizophrenia to care for and parents to take care of now. No doubt that subject matter will leak in because that is now my life but I'll try to stay on track as much as possible.

As for my darling Thomas who unfortunately is, because of his age now and because he can generally take care of himself, being neglected a little. He is still moving along ok though I can't help but question the new changes in him as of late. That whole episode on Saturday seems to have set him back physically. I'm still puzzled as to what exactly happened. He told me yesterday he thinks that it might have been that he got overheated, which is bad to do when taking these medications, but when I asked him when I picked him up on Saturday if that was a possibility, he said he hadn't been doing anything to get overheated. You know, one of the things I hate the most about the manifestation of schizophrenia in him is his memory loss and also the way his life seems to get twisted up as the day goes on. I think without my questions he goes through a day reasonably fine but when I start asking questions about something in his day, it's like I've tossed a bunch of puzzle pieces down in front of him and he's frozen and incapable of putting it together to form a clear picture of his day.

So, was he over heated? Or was it, God forbid, and yes it crossed my mind, that he took too many meds or didn't take them at all that day since I wasn't standing there watching. I also thought it might have been a blood sugar issue since these anti-psychotics go hand in hand with those sorts of things. However, I tried to remedy his symptoms with the usual quick fixes for low blood sugar and it didn't touch him, in fact he still got worse until after a nap and 2 or 3 hours of time passed. I have exhausted my very limited medical knowledge now and said a few prayers and now he will see his meds doc tomorrow.

I still am of the mind that I'm being told by the powers that be that I need to keep an eye on him. Mood-wise he's pretty happy, I see a lot of smiles lately, but delusions are running rampant and expanding and I feel a bit like someone with their arms full of little boxes and they're tumbling off the pile onto the floor, each box representing a delusion that's creeping in or being made apparent to me.

So, I'm up and running again, here on the page and as a mom to Thomas. I feel a bit suffocated by all of the changes in my life in the last week, heck let's get crazy here and say in the last year and half. I've come to realize that the drama that was my life before all of this began was child's play and mere prep for what has come to pass lately. One thing is for certain, there isn't one thing yet that has knocked me down and kept me down. I'm a fighter and I'm not out of the ring just yet.

Saturday, August 17, 2013

Warning Shot

This is what I'm talking about:

My Dad's mom died today, my parents are struggling and I've been with them most of the day. Thomas was doing great and then a bit ago I get a text from him asking me to come get him from a friend's house. He gets in the car, white as a sheet, clammy cold, and super dizzy. By the time I get him home he's very dizzy so I take his blood pressure. It'
s 99/54 but he has no fever. He ate some protein and carbs and he still feels dizzy, clammy, and very tired.

He's in bed now sleeping. But do you see what I'm saying now? My focus was taken off of him to help my parents and then he ends up sick and needing me. I can't help but think that the powers that be are warning me to keep an eye on him.

I can't do it all.

Friday, August 16, 2013

The See Saw

I know that some of you are in similar situations to mine and some of you aren't at all so today I am going to write about something you might not all be able to relate to. I'm not going to say a whole lot because I'm really struggling right now but I wanted to say something so that those of you like me out there won't feel so alone.

I titled this posting "The See Saw" because that
is how my life is right now. I will first say this. Thomas is doing pretty good, at least as far as I can see from my perspective. Admittedly my perspective might be a bit clouded because of what else is going on.

At the other end of the see saw though is my dad who has dementia. He is not doing well at all. He fell down an entire flight of stairs a couple weeks ago. Then he went out on a walk a few days later and something clicked in him and ever since then he hasn't been the same. We have watched him rapidly decline in the last few days and it's been very scary. On top of that his 96 year old mother, my Nana, who my dad hasn't been able to see since he had his stroke a year ago, took a series of falls and as a result has several brain bleeds. She was in a coma for a few days and my dad was seriously mourning that all while struggling with his dementia and then just this morning we received news that she's not going to make it through the day. My dad will not be able to be at her side. As you can probably imagine, between his dementia and the typical things one goes through when losing a parent he is struggling like crazy. As a result since my mom is his main caregiver she is struggling also trying to help my dad and so now I am called upon to help the two of them.

The situation here is very dark.

What scares me is that I am so wrapped up in the stuff with my parents that I'm afraid I'm missing stuff with Thomas. This is how he ended up hospitalized last year, because I was so wrapped up in helping my parents, I missed the signs in Thomas. Needless to say I am not a circus clown with a talent for juggling. Instead I am a flawed human being with many lit torches flying haphazardly around me and I'm trying my best not to grab the wrong end and get burnt.

So, if I'm not around for a day or so here and there it is because I have this very serious situation going on with my parents and in between that I'm going to try to keep an eye on Thomas. As a result of all of this, my creativity and my love of writing have escaped me and I am left in survival mode where only the most important things are alive and kicking inside of me.

I'll be back checking in all the time but I may not be posting much. I hope you all will understand.

Thursday, August 15, 2013

The Kleenex

When Thomas was very small, I went through a time where I was fighting off a very nasty depression. I would cry all of the time. Most times I would keep my tears hidden but there was one time that stood out in my mind when I was unable to hide my tears. I'll never forget sitting on the edge of the couch, tears rolling down my face, and looking up and seeing Thomas' adorable little face and big brown eyes looking at me.

"Mommy? Are you ok?" he oh-so-sweetly asked.
"I'll be ok honey, mommy's just a little sad right now." I said.
He ran off and came back with a box of Kleenex and with his little hand he pulled one from the box and handed it to me.
"This will make you better mommy." he said to me with such sweet, wonderful, concern in his eyes.
I told him that he was right and that fixed it and that I felt so much better and he went off to play.

Fast forward to the last year since he's been diagnosed with schizophrenia.

It never ever ever fails. When I am reacting in some emotional way around him, it is like I am spreading a virus to him. He picks up on the most subtle cues and reacts very strongly to them. I've gotten adept at either hiding them or, when I can't hide them, I reassure him that my more negative moods are not his fault, that I have a lot going on in my life outside of him. I always hug him and tell him I'll be ok but he looks at me, concerned, as he walks from the room.

He is tied to me emotionally as if we share the same heart and head. My predominant moods lately have been on the more energetic side and what I've noticed is how when I'm talking to him his eyes get very wide, like a deer in headlights, and he seems to get scared and it's then that I realize my energy is filling him with fear and agitation because his mind can't process my words and emanating energy. When I see that look, I immediately leave the room, dial my emotions down to a low hum and come back to him and continue the conversation.

This is schizophrenia. He has so much going on inside, so much to manage, that he can't manage what's going on outside of him very well-- like my leaking emotions. Some of the best advice I ever got from another person with schizophrenia is that people with schizophrenia are very in tune with emotions and the best thing I could do for Thomas is to dampen mine down to help him better cope with life in our home--most especially with me.

So, more often than not, when I'm dealing with something emotional and he's to be included, I have learned to get control of my emotions. He doesn't need to bring me Kleenex's anymore because it's not about me anymore, it's about him and restoring some semblance of good mental health, even if it only lasts a day.

Wednesday, August 14, 2013

Lullaby of Broadway

A strange change has taken place in the car on the ride to and from work with Thomas. Bear in mind I can see that he's doing reasonably decent right now but there are always clues, clues to what I like to call a "disturbance in the force."

For years the XM Radio has been turned by him to either "Trance" (kind of club/dance music) or worse yet, music that isn't music but inst
ead sounds like the devil himself is screaming back at me inside the safety of my car. THAT music is like nails on a chalkboard for me because I wonder what Thomas hears in it or why he even likes it. I can't see where the message from that music is anything but negative. I could be wrong but still. I don't like it and would prefer anything else to be played.

To my surprise one day recently he got in the car, set the station on 8 (the 80's on and slowly dialed it down to 4. Suddenly the car was filled with music that sounded like it was coming out of a Victrola, somewhere strange and distant and the lyrics were hop, skip, jumpy, and innocent. No devil's verbal assaults, no pounding club music with remixed 90's songs thrown into the mix. Where we had ended up was "the 40's on 4". Somehow we were transported back in time by the 18 year old hand of my son with schizophrenia in to the 1940's.

I sat there as a song or two sang through and I held back giggles but shot some glances at Thomas to see if he was serious about his music choice.

He was. Dead serious.

So, what do I make of this exactly? Anything, any "disturbance in the force," makes the hair on my arms stand on end and often I'm left spinning in my head asking "Why?!?"

I'm not complaining (though I hate the music personally) and I won't change it since he gets so few moments in the car and I like to gauge his state of mind by the music he chooses but why this choice? He says it's from a car commercial but somehow this has turned into him filling his Mp3 player with the stuff and every time he gets in the car it's dialed from the 80's to the 40's in a quick flick of my son's hand.

Perhaps one might think that everyone's music tastes change from time to time. Heck, I go from current music to country to contemporary Christian, to the 80's, to the 90's and sometimes if I'm desperate I'll go to the 70's but the 40's?

He's 18. And a boy. And they sing about "The Lullaby of Broadway" and other beautifully innocent subject matter. And sitting in the car with him, with dusty, paint-covered, work-worn clothes and his tousled hair and his beautiful innocent face, it is like sitting in the car listening to a foreign language being spoken. It's very odd, to say the least.

I know, there are worst things that could be happening but this coupled with other symptoms makes me wonder where he is in his mind. I am thankful the devil is no longer spewing anger at me when I'm driving Thomas to work but why now are we residing in the 40's tapping our foot to the innocence of the past?

Friday, August 09, 2013

Just For Tonight

Just for tonight Thomas doesn't have schizophrenia, the last year of my life didn't happen and this pain I feel at my core isn't here.

Just for tonight I can pretend life is what I dreamed it would be, not the nightmare that it has become.

Just for tonight the losses aren't lessons being taught in an effort to make me stronger, they are fragments of a nightmare I will wake from in the morning....

Just for tonight all that is, isn't anymore.

Just for tonight I hide from truth, curl up in impossibility and reach for what I used to hold to be true for myself and make it my reality.

Just for tonight I disappear into a mist swirling around a sunset soaked forest and find solace in its peace.


Falling In Holes

I spent a little time with a doctor yesterday that is a good friend of my mom's and has done some surgery on me. He is the world's funniest guy. We spent a larger portion of the conversation talking about my dad and his dementia because he has a father with dementia. When it came my time for me to be in the hot seat my mom made a comment to him about how I've been under a lot of pressure lately. He said to me, "I thought you managed to eliminate your stress." To which my mom piped up, "well, she's got a very sick son. He has schizophrenia."

Dead silence

And then what followed can only be described as a snicker. Even that isn't a fair depiction. It isn't like he was laughing at me and Thomas, it was more like either he didn't know what to say or maybe he had a family member that has it and he didn't want to discuss it. I don't know and my mom and I have gone over what his reaction meant and have come up with nothing. It was just plain


I have my whole speech ready to go where I explain a little of what's going on with Thomas and then I attempt to help them better understand schizophrenia but when I opened my mouth to speak this time I felt completely shut down by him. What's weirder is that he was so shut down, as if the lights were turned off when I mentioned the word schizophrenia. I know this because after the silences and strange snickers he fired right up and started talking about the stuff with my dad again literally as if the whole schizophrenia thing had never happened.

So, since I left his office I have been pondering that whole experience. Not once was he rude to me, in fact he joked with me a lot about other things and treated me so kindly but there were these holes in the visit where the word schizophrenia dropped into them never to be found again.

I haven't yet had an experience like this. I have been lucky to be able to talk to people and they have been curious enough to ask questions. I have had only one person tell me that Thomas should not be on meds but as far a opposition goes, that was the worst of it. So yesterday's exchange was a real intriguing experience.

It's interesting to me that when I come up against something I don't understand I will at least listen to what the person has to say and perhaps ask questions. Maybe I'm unique. Or maybe I'm not but perhaps schizophrenia is so scary and foreign to some people that the mere mention of the word causes them to run for the hills. I'm not naïve here, I know how life works but these sorts of things never cease amaze me.

All the more reason to keep up to good fight of trying to help people better understand schizophrenia. That is if people will listen.

Thursday, August 08, 2013

The Truth of My Life

I love that some of you stepped up yesterday and offered advice for me and helped me come up with ideas for making it easier to go away for a small trip with my husband. I agree with you all wholeheartedly that we need to get away but there are other factors that I slipped in, that I played down, that are factors much bigger that would make a weekend away difficult right now....

I have a father who had a major stroke a year ago. Caring for him is a full time job. My mom does that pretty much on her own but the situation is so volatile in that my father falls easily and is easily disoriented among other things and my mom isn't strong enough physically to lift him and the changes in her relationship with my dad, because of his stroke, make it hard on her and she needs me for support a lot of times. She would also need me in a split second if he were to fall and hurt himself or have another stroke. I can't leave her either. I also have a mother in law that is aging and suffering pretty badly right now and will need our help very very soon. Leaving Thomas is only part of the equation because there are extended family members that need us too. We are almost anchored here in a sea of illness and old age and work and life.

That was partly the point of my posting yesterday and why I was going to write more in the coming weeks. The collateral damage from family members who are struggling mentally and physically as well, take a toll on a marriage. I wasn't in any way trying to be an expert but I wanted to write about my experiences because I know that I am not the only one out there in this situation. Having Thomas with schizophrenia only worsens the fear of leaving just because of the nature of his illness.

I will keep writing and your suggestions are amazing and helpful and mean so much to me but if in the coming weeks I'm not taking a vacation it is because of factors not only related to Thomas but to extended family as well. My page is about schizophrenia and it's toll on a family so writing about my father's stroke or my mother in law's diabetes wasn't the focus, my point was to write about my number one reason for staying home, and that is Thomas, but keep in mind there are many more reasons to be here rather than anywhere else.

Thank you guys for your love.

Wednesday, August 07, 2013

Collateral Damage

My husband came to me the other day and said something that broke my heart and I hadn't given it much thought before that moment. He said,

"I am realizing that we are never going to be able to go away on a trip, just us, ever again."

This statement came after almost a year of marital discord surrounding Thomas' diagnosis and the fact that my dad needs constant care and we don't want to leave my mom alone to deal with it all. But more than anything what he was speaking about was our personal relationship in relation to the way our lives have become as a married couple raising a schizophrenic (now) young man.

I put some thought to this statement and agreed that, especially for the time being, I certainly wasn't going anywhere, anytime soon. Really, how can I as Thomas' mom, leave him alone in his world right now? As I sit here now and write I think about how just this morning Thomas woke up tired and depressed and in the course of about 3 minutes time asked for 2 hugs that were needed in an effort to lessen the depression. How can I not be here to make sure that there is someone for him to hug in the early morning hours before the work day when the night's memory still envelops him and he's fighting to the surface for light?

I will not leave him alone. I won't.

So what, then, does this mean for my marriage? Well, I assured my husband that using the word "never" is an awfully large statement and that we would be able to get away together but honestly? I don't see that happening anytime soon.

He knows this. That's why he said what he said. I know this too but in an effort to keep my marriage afloat I'm going to tell him that "never" isn't forever and that the time will come for us to get away.

So, I'm going to write about this part of my life too. My marriage and the rest of my relationships, the collateral damage that comes when a major often debilitating diagnosis comes down from on high and threatens to wipe everyone off the emotional map scattering us all apart to either find our way back to each other or to find our way on our own.

I know there are others of you out there that are seeing their marriage tested by their child's diagnosis, by a loved one's diagnosis or by their own diagnosis. Some of you are looking at imminent losses and some of you are like me, fighting to put bandaids on the cracks in the marriage. I am no expert on relationships and will never claim to be, but living my marriage and working on it for the 12 years that I have, has taught me a great deal about love and love's limits.

As life goes forward with Thomas' relatively new diagnosis I am warned that there are many trials ahead. I am not alone in this, Thomas is not alone in this, my husband is not alone in this. It's going to take all of us realizing that and then remembering in the hard times that what will keep us together is a love for each other, a compassion for each other as we face the trials in our lives in the only way we each know how to, the understanding that we each have secret desires for our lives inside with our hearts, and that we all had dreams for the future that now must be put on hold, or adjusted for what lies ahead.

Monday, August 05, 2013

The Cost of Psychiatric Hospitalization

Here's the breakdown of the costs associated with Thomas' E.R. visit and 72 hour hospitalization in May 2013:

-Private mental health $6930...

-Self administered drugs (no clue how they're "self-administered" since I caught THEM screwing up administering them to him themselves...but whatever) $273.49
-Lab $1251
-E.R. $362
-EKG $258
-Professional Fees $756
-Pro fees-E.R. $116

GRAND TOTAL: $9946.49

Saturday, August 03, 2013

To The Outsider

In order to understand schizophrenia, you have to not only learn about the illness itself but you need to learn about the experiences of people who have it or who love someone with it. I chose the theme of today to be about delusions. The reason being is because they have been front and center in Thomas' and my life in the last week. What I hope to illustrate now is how BEARING WITNESS TO these affects me and in all likelihood those of you with loved ones with schizophrenia.

I went into Thomas' session last week to fill his therapist in on what has transpired during Thomas' medication appointment. I had only been in on part of that meds meeting because his doc wanted to speak with Thomas without me. I walked out of the meds appointment with a note given to me by Thomas that his meds doc had written that said,

"Talk to therapist about thoughts and fears."

HA! That couldn't have been more cryptic and I came to discover in the therapy appointment that it was unhelpful to Thomas too because c'mon, where do you start with that when you have schizophrenia?!?

We sat down, all of us, and I handed the note to Thomas and he looked at it and handed it back to me and asked me if I could remember what he had said. I had some clue and shared that and then it began.

Thomas' therapist started asking Thomas about these things and began to be able to break them down into smaller bites and the more information he and I got from Thomas, the quieter the room got. Now, in the last year or so I have become quite adept at slowing my breathing and heart rate and monitoring my behaviors by looking at myself from the outside all in an effort to leave the room wide open but safe for Thomas to express himself. The experience is one of really just being out of your body. You know you have to sit in non-judgment and be unreactive because just like a bird sitting on a branch just in your reach, you have to let that bird just be a bird for a little while.

Now imagine a story being told that is far beyond comprehension. The themes are familiar but somehow you just can't quite get it to fit into your world view. Then mix in that the storyteller is your loved one and they are sitting there talking with complete and utter conviction. It is, at least in my experience, the MOST SURREAL and HEARTBREAKING moment. For me, I actually feel like Thomas is swirling around in a big whirlpool and our fingertips are touching and the only way to get him out is to jump into the water with him and all of this while wanting to launch into a full-on panic attack complete with passing out cold but not being able to because I know I need to keep it together for him.

As I write this I am holding my breath. It's that ethereal. I feel it all around me and laced through my being even as I sit here now. It's scary and it's sad and it's everything you don't want for your loved one but it's EVERYTHING to them. It's real and it's unshakable.

So, from my eyes, from my body, from my soul, that is my "outsider's view" of what it's like to love someone with schizophrenia.

Friday, August 02, 2013

Me Too

My mom had a neighbor with a son with schizophrenia and we used to hear her having huge arguments with her son. I remember thinking how hard it must be on her and thanking God I wasn't in her situation.

Now here I am.

She moved out of my mom's neighborhood and moved one block from me recently. I drive by her house, a duplex that half is hers and half is her son's, and I see her often. I've always wanted to stop and say "me too" but this woman is a formidable woman and frankly, I'm a bit scared of her.

My mom caught up with her today and told her my story and in turn she told hers. Her son is 60 now and living a frightened, difficult life. She has been through 5 husbands. Her son was diagnosed in his late 20's and she was battle scarred and defeated. Her words for me were that I have a long road ahead of me and she was horrified that Thomas was diagnosed so young.

At first I was struck with a wave of nausea. Here is a woman who has seen it all and SHE was worried for ME?!? What is it in mine and Thomas' future that she sees through the lens of her history? I've got to say it scares me a little bit.

OK...a lot.

You know what else strikes me though? She offered no support, no resources, no....nothing. I was saddened because I've driven by her a thousand times since Thomas was diagnosed and I have yearned to stop and ask her questions. After my mom's encounter with her today I can see I'll never get that chance.

I don't want to be that mom. I don't want to be so beaten down that a mother new to this diagnosis for her child can't stop me on the street and say "me too" and get a hug from me and some comforting words. So I make a quiet promise to myself today. I promise to give support and understanding to anyone in my situation that feels alone and scared and lost. I promise to take my life experiences with Thomas and offer them up as a light in the darkness of this illness because even when it gets bad, and it will, there is still something I have to offer someone in my same situation.

Even if it's only a "me too."

"I Don't Know"

All of his life, often when questions were asked of Thomas ,his response was, "I don't know." I used to think he was basically being a brat and avoiding answering my questions. Then his schizophrenia roared to life and I started paying more attention to his "I don't knows". What I quickly came to notice is that he wasn't always just saying "I don't know" when I asked him about school related stuff or other critical information. What I noticed is that when I would ask him what he watched on TV last night he "didn't know." Or I would ask him if he had fun hanging out with friends and I would hear, "I don't know." As he fell further and further into depression and psychosis and all things schizophrenia his "I don't knows" became more frequent. One day I was asking him how he was feeling (because he was acting very agitated and angry) and he blew up at me and told me he "didn't know" and then he calmed down and said to me,

"Mom, I'm just not in touch with my emotions. I have never been."

Right then and there all of the years of "I don't knows" came flooding back to me and I realized, HE REALLY DOESN'T KNOW! It broke my heart and I wondered what it must be like for him to live in such uncertainty, or worse, that he couldn't label and FEEL his emotions accurately. Which brings me to this morning.

He came dragging out of his room this morning and came straight to me and asked for a hug. I asked him all the usual questions,
"How was your night?"
"Did you sleep ok?"
and the report came in good. Then he let me go and took his pills and then took his cup out to recycling and came back in and he looked so sad, heartbreakingly so. He stepped toward me and said,
"Mom? Can I have another hug?"
I reached out for him and he held me so tightly and wouldn't let go.
I asked him if he was ok,
"I don't know."
I asked him how he was feeling.
"I don't know"
Then it hit me and I thought I would try and label it for him and I asked him,
"Do you feel depressed?"
and of course I got back,
"I don't know."
The energy around him screamed "depressed" but without knowing what he doesn't know, I don't know how to help!
Then I asked him,
"Do the hugs help?"
He said that they did so I did the only thing I could and I told him,

"I have an unlimited supply of hugs so if you need more, come to me ok?"

Depression, or what looks like depression, frightens me because I know the very bad place that depression can go and I don't want to find Thomas there. He's been there before and I don't ever want him to be back there.

I know hyper-vigilance isn't healthy for me but can you blame me right now? With an overabundance of "I don't knows" and a pretty heavy feeling, low looking, depressed sounding, actively psychotic young man, I can't help but have an eagle eye on him.

Thursday, August 01, 2013


There is nothing on this earth worse than listening to your child talk about what's in their head and feeling completely and utterly POWERLESS to help or to change things.

We spent some time with his therapist this afternoon and I learned more than I ever wanted to know. I am making it MY LIFE'S WORK to help this young man carry the burdens that he does.

And how unfair and lonely it must feel to him to have people tell him they believe that what he believes to be true, isn't true. His world is so frightening and uncertain and full of enemies of all forms and I wish, at least I, could be in there with him wielding a sword or holding his hand or something.

This is a cruel, heartless illness.

Getting Up, Lacing Up

Thomas woke this morning but I didn't hear much out of him like I normally do. I was really wondering how his night had gone with the new higher dose of Geodon and how he was feeling this morning. I continued to make his breakfast and then wandered into his room to look for him.

As I walked down the hall I saw work boots with feet in them and Thomas hunched over lacing the
m up. When I came into his room he was heavily and methodically tying the laces on his boots. I asked him how he was feeling and he mumbled in a very sleepy, sedated voice that he was tired. What struck me most was that in spite of feeling like that he was out of bed and in his work clothes and putting on work boots and willingly facing his day!

I told him how proud I was of him that he was moving forward into his day in spite of feeling so tired and I said that if he could just show his face at work that would be good and respectful and then if the sedation became worse (he had to take another pill this morning so it'll sneak up on him pretty soon) then he could let his boss know that he needed to go home.

This is what I love about where he works now. They know what he struggles with and will make allowances for it without batting an eyelash and he will be able to readjust to his life without feeling like he's got SO MUCH responsibility that he might lose his job because he's too sedated.

So, he got up today and he laced up those work boots, he ate breakfast, took his meds, is cheerful and is kicked back on the couch a tired, sedated young man but he's heading in to work.

I'm very proud of him.

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