Monday, June 30, 2014

The Hard Questions (My thoughts on the father of Elliot Rogers--the Santa Barbara shooter--being interviewed on TV)

On Friday night, 20/20 with Barbara Walters had Peter Rogers, the father of Elliot Rogers, the kid who went on a shooting rampage in Isla Vista/Santa Barbara. I decided to watch the show because I was curious about whether or not Barbara Walters would put this father through the wringer. I wanted to watch it too, as a mother of a mentally ill young man, to see what it would feel like to be a parent of a child that committed a crime. I was curious if I could survive that same microscope. I wrote down some of the questions that Peter Rogers was asked:

What went through your mind when you saw the YouTube video?

What were your fears for him?

(When the news was reporting that a shooting was going on) Did you know that your son was the shooter?

How are you?

When you wake up in the morning, what do you think?

She asked a couple of other tough questions that I didn't get a chance to write down but this gives you an idea of what it would be like to be questioned as a parent of someone who committed such a terrible, heinous act.

In my opinion, Mr. Rogers was a brave father to go on this show and put himself out there for the world to either sympathize with or criticize. I'm not entirely sure I could have done that myself. Already he has faced so much criticism and I think it took real strength to do what he did.

The million dollar question, though, was, "Did you see this coming?"

Mr. Rogers gave a detailed account of Elliot's childhood and young adult life and apart from his child being an introvert and socially awkward, there wasn't much to indicate that there was anything wrong. To help his son combat the inability to find a place in the social world, he moved his son from school to school hoping to find him a place to fit in. Finally he did and not a whole lot changed. Elliot was bullied, he was an introvert and he became lost in World of Warcraft and other online activities. He didn't relate to kids his own age and became both obsessed with and repelled by girls and sex. This obsession/repulsion came to a head when at a party he tried to push some girls off of a balcony.

Elliot was a young man, in my opinion, hyper-focused on one thing (girls/sex) and it ran his life. Soon it became his reason to plan his "Day of Retribution" and carry it out eventually.

Now, I wrote about this today because I am a mother of a son with a mental illness, more specifically schizophrenia. I began watching the show to see if I could hold up under the questions. I walked away from the show, though, feeling fairly confident that this kid, Elliot, was not a kid with schizophrenia. Not even close. While I really hate armchair psychiatrists, I can't help but happily say that I am fairly confident that this kid was more sociopath than schizophrenic. Happily say....only because I didn't want yet another violent act pinned on schizophrenia. We have enough on our plates already without having to add yet another violent act to our growing negative stereotype.

I also can speak to what I think was wrong with Elliot based on everything his father said because I have known people like this kid and their ONLY sickness is that they are dangerous, obsessed, dark, sociopaths who have little to no regard for human life.

I will, however, leave room for the fact that I may be completely wrong and we will never really know since he died in the end, taking his darkest self with him. Obsession though is a strong trait. It feeds on itself, strengthening if it's unchecked and ultimately ends in something bad, maybe not murder, but something bad.

So, for me, after watching the interview, after placing myself in Mr. Rogers position as a parent, I think I would have taken the route that Elliot's mother took and that is to release a statement that in part said something about her staying out of the spotlight because she felt the bigger story was all of the innocent people who lost their lives.

God forbid this ever happens to my family and God forbid it ever happens to any of yours, but I am curious, would you go on TV and do an interview like Peter Rogers did?

Friday, June 27, 2014

The Tides Have Turned


Yesterday was Thomas' therapy session. This one was a good one, at least the part I was in. His therapist went through the usual 1-10 scales and Thomas scored a 1 on everything including his delusions. I was happy about that. We did kind of solidify that his delusional thinking goes up when he's influenced by TV shows or reading about the subject matter that encourages those delusions. Thomas and I had watched one of those shows a couple of days before and he had come through it fine so perhaps that couple of weeks where the delusions spiked were just a fluke. His therapist keeps saying that anxiety/depression/ certain symptoms of schizophrenia are much like the weather, they can change day to day, hour to hour. I know he's said that probably 50 times by now but I can never seem to grasp that fully. When Thomas goes to the bad place I tend to think he is headed into another extended period of time of being sick. Hopefully soon I'll get on board with that way of thinking but I still fall back on the fact that schizophrenia is chronic which means it's, at some point, going to stop being like the weather and more like months of Thomas being locked in prison.

What I wanted to point out most in today post is that his therapist, once again, brought up Thomas' meds. He was asking Thomas about his side effects and I felt sure we were headed back down the road to bad-mouthing meds. Then he asked the question that had potential to make me very mad.

"Tom, have you thought about stopping your meds?"

I sat for a second and tried to process just exactly where we were going with this. When Thomas said, "no", his therapist then asked him if he realized that his meds were what were making him better.

Well, alright then!! Thank you!!

Thomas said he did which made me happy and made me like his therapist for recognizing that himself. He said to Thomas,

"You are very lucky Tom because not everyone has such great success with medications."

Yes. Thank you.

Finally we were on the same page again.

Then the two of them talked a bit about Thomas' social anxiety and I was wanting to get out of there because I felt like my "services" were no longer needed. I was dismissed soon after that and I went to run errands.

When Thomas came out of therapy and got in the car, I had a new kid with me. My previously mute kid was talking to me again!! Not only that, he was smiling and animated! Thank God! I had been missing him for days so having him back talking to me felt so good.

So, therapy was a great success and the tides had finally turned concerning his therapist's thoughts on meds. I'm hoping this is going to stay this way for a while but like the weather and the tides (come to think of it they're similar in that they are constantly changing) things will probably change. In the mean time I hope my happy, animated kid sticks around a while. I like him a whole lot more than that other kid I have had for days.

Thursday, June 26, 2014

The Silence Is Deafening

Thomas had another "good" night at work last night despite a rough beginning. His depression about working has come back in full force which really puzzles me. I wish he'd talk to me about why that's happening. I know that he's known to be a kid who doesn't talk much but this depression plagues me. It occurred to me the other day that what it feels like to me is junior high. I always knew something was going on at school but he would insist everything was fine except that his mood was depressed or just off, his grades were pretty bad and he seemed to me to be a bit of a loner. It was only last year that I found out that all that time that he was struggling in junior high was because he was being bullied and because his schizophrenia symptoms were getting worse. So I think to myself now, what's the real deal behind his depression about work?

The other thing that's troubling is that he's pretty much stopped talking to me. I'm painfully aware of how much we don't talk anymore. It's not that I don't try because it hurts my heart to spend hours around him or car rides places and nothing is said unless I initiate the conversation and even then he's very short with me answering with one word answers most times. I finally said to him last night, "I miss you, you don't talk to me much anymore." to which he answered, "I don't have anything to say."

Oh.

(broken heart)

I'm trying to decide if I should just leave him alone completely for a few days and see what happens or if I should keep trying even though it's like trying to get blood from a stone. Besides not speaking to me anymore, he has also changed a few habits during his day. He spends a great deal less time in his room and he has gotten attached to the World Cup games. This kid hasn't watched TV in ages (except at dinner) and he's definitely never been interested in sports. I sit down with him from time to time and ask him about the game and what I get in return is, "I'm not a sports person, I don't know."

Okay...

But (I think to myself) you've watched 4 or 5 of these games now and you know nothing at all?? So I leave him to watch his games and I find something else to do. I don't know. I'm mystified. I feel a "disturbance in the force" as I like to call it but I don't know what it is. It's so hard not to take personally because it's not like he isn't showing emotion across the board. He cheers for his favorite team in the World Cup and I catch him laughing at shows we watch but when it comes to talking to me I get nothing.

He does have therapy today so I'm kind of perplexed what I should say to his therapist when it comes my time to "give an update on Thomas." So...what? Say something about how he's not talking to me anymore? What would that indicate exactly? And if I say anything to his therapist I can bet good money that he's going to say to him what he said to me last night and that is that he has nothing to say.

So, again I find myself sitting here writing the words "I don't know..." because yet again I find myself in perplexing territory with Thomas. I guess what I'm going to do today in session is wing it and see what happens. All I know is that with what is going on between Thomas and I, the silence is deafening and I miss my boy.

Tuesday, June 24, 2014

A Crack In The Foundation (Part V in a series on mental illness in the family)

It's been a while since I have written about this subject. Mainly it's because I forgot I had started a series on this (I'll post archives later so you can catch up) but I think it is something that definitely needs to be discussed and put under a spotlight because it's hard enough to have schizophrenia and it's hard enough to be a compassionate caregiver trying to do right by your loved one with a mental illness without also having to deal with bad attitudes from the outside.

As you will see from my archives I post later, it seems that I pick on my husband a lot. The thing about that is, it's not so much that I pick on him, it's more that he brings to light with his comments a pervasive attitude in society concerning mental illness. My husband doesn't speak from a place of education by a long shot and forms opinions based on what he thinks he sees happening around him mainly with myself, Thomas and another family member of mine. What you will need to keep in mind is that very thing because I think that is a lot of reason why a large part of society has the way of thinking that they do about mental illness.

Now, this is not the first time I have heard this come out of his mouth but today on our walk, it came up in conjunction with myself and (more importantly to me) about Thomas. Just one example from recent history was something I told him about Thomas. I try very hard to educate my husband on schizophrenia and try to help him understand Thomas' (and mine too) experiences so I share examples of things that happen so that he can have a real life experience to add to the standard, clinical information I also share. What I had told him a couple of weeks ago was that I had asked Thomas if he misses his voices (I did this based on hearing that other people with schizophrenia sometimes miss their voices when they're gone) and he said that he did. There was nothing much to the conversation other than that but it must have stuck in my husband's brain to be brought out on days like today when he's mad for some reason that he has a family full of mental illness.

His attitude and his words come down to this:

"Mentally ill people, when they start to get better, seem to find reasons to become sick again because they just can't seem to enjoy their happiness and better mental health."

So, I interpret that to mean that we somehow decide that because we are feeling better, we drum up some reason to make ourselves sick again because we'd rather be sick than well.

Um yeah...

No.

His argument for this was that Thomas missing his voices means he can't be happy with being well so he finds reasons to be sick again. What he seems to miss is the crux of schizophrenia (in my opinion). Voices are a fixture of schizophrenia. Left untreated (and even sometimes treated) they run along in your brain all the time. Often they are cruel and abusive but sometimes, like Thomas' they are neutral and even amicable. Essentially a kind of skewed perception of this is that they "keep him company." So, if they are gone, his "friends" are gone. At least that's how I see it. He wouldn't miss them if they were cruel and abusive. So, I ask you, how is that a bad thing? How is that "wanting to be mentally ill"? Thomas is not looking to find his voices in any way, he was just answering a question I had asked him. He is not CHOOSING this at all.

At any rate, he went on to tell me that in the past, I have started to get better and when I did "my brain couldn't handle the quiet so it had to create reasons to be sick again." Again, so I CHOSE to "make myself sick" because I MISS being mentally ill?

Uh yeah...

No.

The conversation went on and on like this with me arguing the absurdity of his line of thinking mostly just to defend Thomas and in the end he backed down mostly because he's not a fighter nor is he as quick on his feet as I am. I have years of academic education behind me not to mention years of personal experience so if you're going to get in the ring with me with your misinformed, uneducated way of thinking, I am lacing up my gloves, putting in my mouth guard and I'm going to come out swinging.

The problem here in my little family with my husband's way of thinking is that I think that this story is just one of millions out there like it. What gets me, and I pretty much believe this, isn't it also a form of "insanity" in and of itself to think like he does? I don't know. Perhaps my mother bear is out right now and I'm still smoldering about our earlier conversation.

In the end though, it's attitudes like this, spoken words like this, arguments like we had this morning that mirror what's happening in society as a whole. If my "average, ordinary, Joe" husband thinks like this and he LIVES with us, in my opinion it stands to reason that there are many more out there like him. Needless to say, in this family it upsets the balance. The understanding that both Thomas and I so desperately need is absent from our family and we find ourselves, in our own little microcosm, fighting a battle that so many people fight around the world in an attempt to help others understand the experience of mental illness. Undoubtedly I love my husband. We have been together 14 years but it's his attitude about mental illness that causes problems for us. In my home, in a place where Thomas and I should feel safe, we live with what society as a whole lives with and it makes for some unrest every now and then. I'll keep up my education process with him but changing such a pervasive attitude won't be easy.

Monday, June 23, 2014

I Don't Know...



I picked Thomas up from work last night and asked him how his night went at work. I expected a very Eeyore response (kinda depressed and mopey) and instead I got an "it was good!" I hesitated for a moment trying to process that he'd actually just said he had a good night at work. I asked him if he'd actually had a "good" night and he again confirmed it. Well, okay then! YAY! Somehow we have come through his depression/anger era about work and have emerged on the other side with him actually starting to have good nights.

Ever the optimist (?) or mom in sporadic denial, I asked him if he felt there was anything left of his illness inside of him, in his opinion. For me I have written off delusions now to something equivalent to having a scar on your body. It'll always be there and it's something you just have to accept. So, to me, in my denial, I write them off and deem him "cured" and onward we go. His response however brought me back down to earth. To my question he hesitated a bit and responded, "I don't know." Uh oh...the dreaded "I don't know" that means something even though he doesn't know.

I thought to myself that maybe I could word it better and I asked him if he had any symptoms left of his schizophrenia and he stuttered a little bit, reached for the radio to turn it down, hesitated a little bit and tried to form a sentence that I couldn't decipher. Then, frustrated, he again said, "I don't know." I rifled through my mind trying to figure out what he was trying to say but because I started this whole thing in denial, I couldn't really see past that to clearly think about the truth of what's going on with him.

Then, to let him off the hook a little bit, I said to him, "Is it that you feel like SOMETHING is wrong but you don't quite know what it is?" To this he answered, "yes". I had heard this before come from others living with schizophrenia, usually in conjunction with the time before full-blown symptoms hit them for the very first time. It was something, that, had Thomas had the words back then, he would probably have told me too. So I said to him, "You know, I have heard from a lot of people that they feel like something's just not right inside but they can't explain what it is." Thomas was silent. Then I said to him, "I think, kiddo, that you will always have something like this going on. After all this is a chronic illness and while you may get better in a lot of ways, I think there will always be some residual left to deal with." He just said, "yeah." and we pulled into the driveway and got out of the car.

Once inside, he couldn't wait for his nightly hug and I went straight to him and hugged him so tightly and told him how much I love him. It's just so unfair. He's just a kid who is kind and sweet and suffers from a bit of a low self-esteem and he doesn't hurt a fly and somehow in the poker game of life he got dealt a crappy hand of cards named schizophrenia. Sometimes life is just downright cruel.
Then this morning on my walk I got to thinking, was I kind of a jerk pointing out that he'll always be sick? Would that have been better left unsaid? In the light of the morning sun I felt like pointing out the obvious, or maybe the not-so-obvious to him, truth was mean. I don't know. Maybe not but it does seem like I'm handing down a death-sentence by saying something like that to him.

At any rate, the truth of the matter is that he WILL always have this illness. Whether we talk about the truth or not, won't change the facts. For last night though, the biggest take-away was that he actually had a "good night" at work. I am grateful for that and hopeful that we are on an upward trend where that is concerned. I want him to enjoy his work, relax and just think about the money he's making to buy things he wants. The rest of what I learned last night is just another step to climb and accept. We'll do it and hopefully my "denial virus" will spontaneously cure itself and I will accept reality.

Saturday, June 21, 2014

We Are All About To Trade Places

I have made the decision this morning to choose to believe Thomas is stable again. I'm doing this because of what I wrote yesterday and because I have been going back over my past blog postings and I can now see how very very sick Thomas has been in the past. Last year he was classic schizophrenia, refusing meds, refusing he was sick, insisting that he liked his delusions and hallucinations and full of other quirks that he doesn't have now. That place that he was in and that I was in also, was hell and I had forgotten just how much it was.


I look at today and over the past couple of weeks and I see a healthier child. Granted he has those pesky delusions but they're kind of starting to blend in to the landscape of schizophrenia. I am left with all of the "why's" of this illness and will probably always hang on to those. I'm not sure any of us will ever let that go. When you see your loved one suffering it seems to me to be natural to ask "why".


When my dad has his stroke almost 3 years ago my family's life shifted. We coined it "the new normal" and tried to go on. Then Thomas got sick and that became "the new normal" and then my dad got worse and had to have a serious brain surgery and adjusting our lives to the aftermath of that became "the new normal". It's always going to be about adjusting to the "new normal" and frankly, after the last couple of years I'm not really sure anymore what "normal" is. Maybe it's ALL normal and I am the ABnormal one thinking it should be any different than just what it is in the moment.
As one of my ways of coping through the pain of the last couple of years, I have always tried to look to other's lives (on the news for example) who were suffering in some Godforsaken way. It made me reassess my life and my pain and often I came away with something to the effect of, "My stuff is NOTHING compared to theirs so I really oughta just suck it up and stop complaining." Speaking to that though, I had a therapist once who told me I was minimizing the horror of my life (this was long before Thomas got sick and involved my childhood and teen years) and he said that my pain was just as valid as the pain of others because it was happening to me. It may be different circumstances but how it affected me was just as genuine and painful to me as their situations were to them. I never let go of his words and have since told others the same thing when they minimized their pain. We are ALL hurting and struggling and FIGHTING our way back from something. Just because I have a leg and you don't or just because I don't have an arm and you do doesn't make what we have to deal with emotionally too much different.


I guess my point in all of what I am saying here is that this is life. We are all here to live it, to love and support each other through it, to be there for each other when times get rough, to celebrate with each other when things are good and to appreciate each other's journey's as unique and as personal tests of resolve for each and every one of us. My sister and I have a joke. Between us we share 3 seriously mentally ill children and it always seems that when one kid is sick the others are ok and so on and so forth. I will text her and tell her that Thomas is struggling and she will text back that it was my turn because her kids are okay right now. My sister and I are the example for the entire world as far as I am concerned. Yin and yang right?


I know this has been a post of fragments in some ways but these are the things I was thinking and feeling today in the face of my decision to believe Thomas is stable again. He and I are okay today. You may not be, but if life has taught me anything, we are all about to trade places. Let's just be there for each other when that shift occurs.

Friday, June 20, 2014

Entering From Stage Left, May I Introduce...

Through out Thomas' teen years he managed to "collect" an eclectic group of friends. They range from his very best friend Patrick who is an all-around good kid and cares a great deal about Thomas and is respectful and kind about Thomas' illness and accompanying quirks. Then there are Zac and T-Mac who come from good Christian homes who are smart kids with bright futures and there is Jon...Hmmm...what can I say about him. He's a good friend to Thomas but he's very immature so when Thomas is around him his maturity age drops from 19 to about 12. And then there is Cole. Today I want to introduce you to Cole. First, though, let me give you a history.

Cole is a sullen kid with long blonde hair who walks around with his head down. He's over weight and kind of a loner. To his credit he has always been polite and respectful to me and my house and he's always willing to have a conversation with me. Plus, my dog likes him which, to me, is a good measure of whether or not someone has a good spirit. I know, that sounds crazy but I have always trusted my animals to tell me if someone is a bad person. What my dog doesn't pick up on is the darkness that I know about Cole and the places he and Thomas go together in their minds and in their "goals" for the future.

Cole comes from a broken family that is in chaos and Cole's dad seems to be a real jerk to his son and to everyone who gets in his way. Cole's dad also collects guns. Lots of them and he leaves them in the home, out in the open, unlocked, with bullets laying on the floor. Supposedly he sells the guns at gun shows but his arsenal (and it is an arsenal) are readily accessible to Cole and by extension Thomas when he is at Cole's house. This fact has always scared me to death. I have had many talks with Thomas about not touching those guns and asking him to please stay away from the house. I have since found out that not only has Thomas been at that house but he has held and played with a gun or two. Kids will be kids right? I mean, you can't control everything about them without turning into a nutcase yourself.

Now, when it became obvious to me that Thomas might be beginning to show signs of schizophrenia I began to keep a closer eye on the two boys. At times Cole would show up at our house in full camouflage regalia complete with patches that I didn't understand what they symbolized. I looked them up and found their meaning, I stalked his Facebook and learned about what he was involved in and ultimately I called the school because I didn't like what this kid was involved in and what those patches on his camouflage meant and I thought the administration should know about him. You see, Thomas had told me in his senior year of high school that Cole was extremely angry with the school administrators for various and mostly unfounded reasons. Notifying the school seemed like my duty. What the school told me is that they already had their eye on Cole for a while and they were very cryptic but ominous about why that might be.

By Thomas' senior year Thomas was quite sick now. He'd been hospitalized twice, was stressed to the max about school work and was becoming increasingly angry at the administration and one teacher in particular. Like a train barreling down the tracks towards me and me unable to step from the tracks, I began to put two and two together and I began to worry that together, Cole and Thomas, with their growing anger and that arsenal of guns available to them, could be planning the unthinkable. I knew my boy was a good kid but with Cole he had become someone different altogether and had (I found out later) mixed his existing delusions into Cole's plans for the world. You see, Cole was a Nazi sympathizer with mixed up government and cultural ideologies contained in an unguided, unchecked brain. He was poison of the worst kind and Thomas called this kid "friend".

As a parent I did what I could to help Thomas, to talk to the school, to inform Thomas' doctors and then was left to stand back and wait for God knows what. Then Thomas got very sick and ended up in his third hospitalization and graduated high school shortly after that and for reasons I don't know, he and Cole parted ways. That was just over a year ago. Until the day before yesterday.

Needless to say, Cole is back in Thomas' life now. I allowed the kids to stay here at my house yesterday because sending Thomas to the "gun house" was a thought I would not entertain. Everything went well and by 3 Thomas and I were sitting in his therapy and his therapist was commenting on how "animated" Thomas was. It was true. The kid sitting there beside me was a young man seemingly reborn from a deep, dark sleep. He was alert, observant and talkative. He was not my Thomas and I couldn't help but draw a dark, looming conclusion as to why he was like that. My guess? It's because his good friend Cole is back in his life. Dark, seemingly dangerous, sullen, withdrawn Cole is back and my greatest fear is what he brings with him to fill Thomas' already delusional mind with.

So, entering from stage left, after over a year, may I introduce you to Cole. To me, by far, the most dangerous and toxic kid I have ever known in all of Thomas' years of "collected" friends. I am scared to death but don't know what to do. My best solution is to allow the kids to be here in my house, away from the guns and in rooms that I can peek in on at any given time. I can't forbid Thomas from seeing him because they'll connect elsewhere. At least here I have some control over possible outcomes.

However, I am a very worried mom right now.

Thursday, June 19, 2014

Oh Nice, Add More Meds

 

I was struck last week by yet another baffling response to Thomas about medication by his therapist. I'm trying very hard to understand the motives behind these not-so-veiled comments about medication and Thomas. I really thought we had cleared this all up between his therapist and I but apparently not.

Last Tuesday we saw Dr. N. and as I told you, Thomas chose to increase his buspar hoping that it would help his depression. This was a decision he came to all on his own and it made me happy because I had no say in it at all. I am trying--though it's a process and not an event--to let Thomas do more speaking for himself. Since his mind is clearing in some ways, I feel like he is capable of communicating his thoughts and feelings without me. Granted I nudge him here and there but I put it all on his plate to deal with once we are inside any doctor's office.

I had asked him before his therapy appointment last week if he felt he should tell his therapist about his delusions and I told him that I stood by my promise to him not to say anything myself and he said he wanted to tell him. This laid the groundwork for what happened once we got in the therapist's office.

The usual questioning began about all of his levels ("how is your paranoia, how is your anxiety, how much to you believe any delusions right now?" etc.) and then his therapist turned to me and asked me what I had to report. In turn I looked at Thomas and I tried to prompt him to speak up for himself. My only report was about his increased delusions and the increase in meds but I felt Thomas could speak for himself.

He admitted to his delusional thinking which rates as high as a 7 out of 10 sometimes to which his therapist said he "wasn't worried about that right now". This surprised me. Huh. So we're not worried about a level 7 delusion?
 
Okay.......
 
Huh. I guess so.
 
So then I prompted Thomas to explain about his meds. I started by telling his therapist that he had increased his buspar but then looked at Thomas and said, "you need to tell him about this" to which Thomas explained what he chose to do with his meds. Then came the aggravating, baffling part of the whole exchange. His therapist responded to Thomas with something like,

"Oh that's good, throw more medication at it."

This said in a disapproving way and was directed at Thomas. I furrowed my brow and bit my tongue and watched to see how Thomas received that back-handed comment. Luckily it appeared to go right by him. I'm not sure if Thomas necessarily picks up on sarcasm anywhere in his life so he may have missed that comment's intention. At any rate, this did not endear me to his therapist very much. What is with all of this negativity about medication anyway? I know he watched some videos and read a few things about some people in the U.K. who are opting out of medication but c'mon that's fine and dandy for them but clearly meds are working for Thomas now. He works 5 days a week with no anxiety or paranoia and right now HIS worst complaint is the depression (mine's the delusions). It seems to me that the meds are doing their job and frankly, doing it very well, thank you very much.

The thing is, I am not sure I am going to put up with too much more of this before I say something. In fact, it's a miracle I haven't said anything about it in a long time. That's just not like me. I will say this, though, the next time anything like that comes out of his therapist's mouth about meds, you can bank on me challenging that. Thomas wants to take his meds right now and if there ever comes a time that he doesn't want to anymore, I need his therapist on my side trying to encourage Thomas to take them, not working against me to reinforce Thomas' decision to try to cope with overwhelming symptoms on his own.

Wednesday, June 18, 2014

Latuda--The Double Standard

 
I went the other day to see my psychiatrist while Thomas was with Dr. N.. The two doctors share an office so the thinking is, my psychiatrist will be more of a counselor to me than anything while Thomas gets his meds adjusted. Things began to change for my sessions as my mood began to shift into darker waters. My psychiatrist began to think about some sort of antidepressant for me that is more on the hard core side. Her statement to me, in fact, was "it will take an atom bomb to get you out of the place you are in now." Not really encouraging words when you want to get out of where you are, and fast. She went back through my 5 inch thick records and assessed all the meds she and I have tried for my summer depression. The truth of the matter is, nothing has ever really helped, we have more just limped me through the summer on whatever cocktail we could dream up. This time though, with the whole "atom bomb" prospect, I wanted to find something, anything to help this. You see, what worries me about my depression is how it affects Thomas. I could almost bear the weight of it for myself if it weren't for my boy and his uncanny ability to pick up on every mood of mine and make it his. As a caregiver of someone with schizophrenia, you really must take care of yourself too because there are layers of things that can go wrong if you don't also care for yourself. Much easier said than done as you have seen by my posts lately--taking care of myself that is.

After talking a while, she mentioned Latuda as an option for me. She told me that she had already had a huge success rate with it in others with bipolar depression. She had one patient who had bought a gun and was planning on killing himself soon and she had asked him to wait and give Latuda a try and it had worked. Here's the thing though. Like all antipsychotics, one of the biggest side effects is weight gain. I already weigh a lot. I'm 50 pounds over my ideal weight and I hate myself every time I look in the mirror. So adding Latuda and 30 pounds just doesn't sound like an attractive option. Then again, it has been successful for so many others.

The biggest success I have witnessed with my own eyes has been Thomas. While Latuda has been added to his repertoire to help symptoms of schizophrenia, it has still been a successful trial. Even knowing that, I'm not keen on taking it myself.

So what's with the double standard here? As someone who has a say in Thomas' meds, I was easily willing to have Thomas try it. I was desperate to get him out of the paranoid/delusional/anxiety hole he was in and I encouraged him to take it but why am I citing weight gain as enough of a reason for me to NOT take it when I find myself in a comparable hole edging toward suicide? It's a bit aggravating to be so shallow about myself that I'd risk my own life (if this depression goes on too much longer) to not take a medication that has great promise. Would I play this same roulette with my flesh and blood, my boy?? As you well know, there's not a chance that I would. He is my life and I would do anything to make him happy. So why, then, do I not see that I deserve the same respect and (self) love that he does?

I don't know. I don't know but I better know something here pretty soon because I find myself in increasingly dark places in my head as the days and weeks wear on. So, we shall see what I ultimately decide for myself. I see my psychiatrist on the 24th and I could agree to the Latuda then. Truthfully, in a small way, I am like Thomas in that I have reached a point where I'm not thinking totally rationally and the decisions I am making for myself aren't the smartest ones available.

I am curious though. Will Latuda be the great success for me that it has been for Thomas? I have always stated how great Risperdal is for me, that it's my miracle drug, but Thomas couldn't even take a half of a milligram without becoming violently ill so who's to say I'll enjoy the same success on the Latuda that he does?

I have a lot to consider and I had better make a decision soon. I am no good to Thomas if I am not a fully functioning caregiver.

Tuesday, June 17, 2014

A Medication Increase With Little Change As A Result.

If you missed my post yesterday it's because I didn't write one. I told you months ago that I live with bipolar disorder and at the time let you guys know that as a result of that you might see some manic behavior out of me which would have translated to my writing. Well now, true to the form of my version of this illness, I am clinically depressed now. I do this in summer which is a real bummer since this is the season to want to be out and about enjoying the great weather. I, on the other hand, end up sitting here in front of my blog just staring at it unable to get my brain to form any coherent thoughts so instead I find myself sitting in my chair streaming Netflix and not moving. Unfortunately for all of you, my blog suffers as a result which I need to get a handle on ASAP.

What's most important here is Thomas and how he has been doing. I didn't mention last week but Dr. N. increased his buspar dose in an effort to help his depression and it did seem to work for a couple of days. I was surprised when Dr. N. said it had anti-depressant qualities too it since I have only ever heard that it's for anxiety but Thomas chose to give it a try and so he did.

Yesterday, though, he woke up quite depressed. He said he had a rough night and couldn't sleep much. I felt so bad for him. Since I'm depressed I know exactly what he's feeling so I wished he didn't have to deal with it. His day did seem to pick up though and by work time he was ready to go. I was thankful for that because I didn't want his to be the stifling kind like mine that likes to stick around even in the face of pleasurable activities. I am curious to see how he wakes up today though. He's been in and out of depression for over a week so I'm watching it and hoping it's just kind of a funk that will lift soon.

As for his delusions, I can just tell with my mom radar that they are still around. I'm at a loss as to how to help them. They have been the most insidious facet of this illness for him and I'm starting to believe the doctors in Thomas' past who said they will never go away. I guess I'll just have to get used to them eventually and accept them as a permanent part of who Thomas is. I really hate bowing down to this illness but I'm afraid it may have won this round. Frankly, right now, I don't have the energy to fight it anyway. It's a miracle that I'm even showering right now which by the way, I now totally understand why Thomas doesn't shower. When it hurts to move, when your brain feels like it's filled with mud, when you would rather watch TV (Or be on the computer like he does), showering is just not at the top of the list of things to do. Really, it isn't on the list of things to do at all.

So, I'm here guys and I'm trying. One of the things I have hated the most about my writing on this blog is when I have to drag you through my flavor of mental illness that I suffer from. The fact that I am bipolar and currently depressed is not pertinent to Thomas' story and his schizophrenia so I really ought to try and keep it out of here. There are so many of you, though, that know me now, that have been through so much with me (like my dad's death for example) so I know you will make allowances for this kind of thing.

I am working to claw my way out of this pit so bear with me a little bit until I find sunlight. In the meantime, I will be here as often as possible keeping you up to date about Thomas.

Thank you everyone...for your compassion.

Sunday, June 15, 2014

Happy Father's Day

Today I celebrate my daddy and my husband both of whom have touched Thomas' life in ways I don't always have words for.


 My daddy not only loved me but he loved Thomas too. In the picture he is teaching Thomas how to fly a kite. When Thomas lost his biological dad in a nasty divorce it was my daddy who stepped up and became a father figure for my Thomas. I have so many pictures of the times the two of them spent together and it's so hard to choose just one. Having all of them, though, reminds me of how good my daddy was to my boy. In the last months of his life, when he was his sickest, he still asked about Thomas daily. He knew Thomas had schizophrenia and he tried so hard to understand the illness and never could but what he did do was love him no matter what. My daddy was a tough man of few words but when he'd ask about Thomas he'd get a faraway, worried look in his eyes and he'd mutter to himself that he hoped Thomas was doing ok. It is all he ever wanted for my boy. In his last months when I would tell him that Thomas' symptoms had gotten better or that he was doing good at his job he would say, "Good, good, I knew he would be ok." and I would see visible relief come over his face. My daddy loved my boy and for that--but not only that--I love my daddy. He was a good grandpa and a wonderful daddy. I love him and miss him so much.




 The other father I celebrate today is my husband Dan. In spite of the fact that he has struggled with things having to do with Thomas and most especially in the last few years when Thomas got sick, this man stuck around. He never once left us. Not for one single minute. He is not the most emotional man but how he measures himself is in how he is as a quintessential man. He provides for us, he keeps our cars running, he fills mine with gas every time I have to drive Thomas a long distance to Dr. N.'s. and so much more. He has also taught Thomas how to be a man by teaching him about cars, how to put stereo/TV/Electronic stuff together in the house and has taught him how to install Thomas' air conditioner in his room to name a few. Thomas considers him his dad even though Dan is not his biological dad and for me, that shows that we are a family even though we were cobbled together from many parts and places in time.

I also want to celebrate any of you dad's out there on my blog that I don't hear from (if you're out there). If you are here on my blog, it is because you care about your child with schizophrenia and you are trying to do your best for them. I celebrate you for that and wish you a special happy Father's Day.

This is a hard day for me because my daddy can't be with me today for our usual BBQ and (his favorite) angel food cake with cherry chocolate frosting but I am going to do what my friend Debbie here on my blog reminded me to do. I am celebrating my daddy's LIFE, what he gave to my sister and I as our daddy and what he gave to my boy as his grandpa.

I love both my men. My daddy Bryan and my husband Dan. They are good men.


Saturday, June 14, 2014

These Women Are My Heroes

I was blessed to get to spend a little time talking with a couple of my page members yesterday. Both of them mom's of sons with schizophrenia and both fighting from great distances to help their sons. I felt these mother's grief as they made frantic phone calls to people who might be able to help their sons.

One mom fights for guardianship over her son who doesn't speak to her because she has somehow been wrapped into his delusions and she can find no escape to be able to get through to him and help him. He is hospitalized hundreds of miles away from her refusing to sign release of information forms leaving her in the dark about what might be going on with the child she loves with her whole heart.

The other mom had received a personal message from her son living far from her telling her that he felt that dying was a better option than living through a new life, a new town, a new home, new doctors and changes beyond his control. She worried as she realized that all of the changes in her son's life lately had been the things that brought her son to the point he was at.

These mom's are separated from their boys and they are seemingly powerless to help them. They are afraid and feel alone in their fight to save their children. Unable to do for their son's what they really want to do, they stand alone in a room, cell phones in hand, trying to figure out what to do next.

It is these women, and others like them that are my heroes. Some of us are lucky enough to have our children with schizophrenia within reach where we can see for ourselves how they are doing but it is the women that I met yesterday who I feel are the real fighters on the front lines. Their courage and perseverance are qualities to be celebrated because they are the epitome of a proverbial mother bear giving everything they have to fight for their sons. Without a tangible piece of their sons to hold on to they somehow, still, feel their boys inside them and are trying to do the impossible as they fight for the lives of their sons.

There are so many of us out there in various situations, each of us alone in our fight because this illness manifests differently for everyone. My story, and the women I write about today and all of the rest of your stories are each unique, as it should be, since this illness picks and chooses it's destruction but just as I am celebrating the strength of the moms I met yesterday, we need to celebrate each and every one of us for what we do every day of our lives for our children with schizophrenia.

I write today, my brain scattered, because I cannot fathom the realities of all of our lives. I met two amazing women yesterday but there are so many more of us too living lives of uncertainty, fear, grief and defeat.

So today, I take a moment, to say a prayer, to send out healing energy, to light a candle, or to take a moment of silence for all of us moms who love our kids but somehow find ourselves unable to truly help our children living with this cruel illness.

Friday, June 13, 2014

Friday Wrap Up

I felt it was appropriate to spend this post wrapping up a busy and emotionally difficult week. A lot happened and I have a little bit to update you on and some words for those of you who stepped up for me and Thomas this week.

The week started with my sadness about how Thomas and I seemed to be missing each other. I've learned now that part of it has been that I have been gone, caught up in my own depression. I also know it's because he's been disappearing too back into a delusional world. It saddens me that he and I both are going down the roads that we are and in some ways are alone in our journey when what we need is each other. That's not to say that I haven't been here for him but I think there was more I could have done had I not been caught up in my own pain. My problems that I deal with are "adult" problems and do not belong cluttering up Thomas' mind but I found that sitting down with Thomas and giving him a birds eye view (information but not the details) of what was going on helped him. I struggled to find a place where both he and I could be happy and finally found it on Wednesday and solved a big problem leaving he and I both satisfied with the outcome. I will write more about that in another post.

Then on Tuesday I offered support to you guys in exchange for all of the kindness you extend to me on a daily basis. What came of that and made me happy is that I got 3 or 4 new people into my support groups which is good because now they have a safe place to speak their mind without judgment. I know I have been in them and have admitted to things and shared other aspects of my life and the people in there have been amazing to me. Beyond that, I have witnessed their kindness and understanding towards each other and that makes my heart happy. So thank you to those of you who reached out and asked for help. It was a courageous thing to do and my deepest hope is that you will find solace in the groups.

Wednesday I talked about whether or not something is delusion or reality based. You all offered up some great thoughts on this and gave me a lot to think about where Thomas and his renewed delusion are concerned. As an update to that I wanted to share what happened yesterday in therapy for Thomas. I had previously promised that I wouldn't tell his doctors what was happening but I went out on a limb on our drive to therapy and asked Thomas if he felt it was a good idea to tell his therapist about the growing delusions. Surprisingly he said he wanted to talk about it. I was thrilled! I got to keep my promise to him about not saying anything but I still managed to get him to end up talking to someone about them. What I learned yesterday was that they are much worse than I thought. I knew he had been holding back from me. When I had asked him to rate the believablity of his delusion he rated it a 20% (100% being he absolutely believed it). That all changed in therapy yesterday when he admitted is was now at 50% and had been as high at 70% in the last couple of days. I had been right, there was something more going on and I realize now, though it obviously took a knock upside my head to see it, that things are worse than I thought. So we talked about triggers and just as I had expected, the History Channel specials on the world wars and D-Day that we had been watching together were major triggers for him. We are currently deciding, he and I, if it's wise for him to finish the series up.

Also on Wednesday I asked for your input on my article I had submitted to a web site in an effort to be considered as a guest blogger. I felt the editor had been harsh on me so I wanted to run it by you guys to see what you thought. You gave me new perspectives and a lot to think about it and in the end I decided to completely change the subject of my story and try something new. I was mindful of making sure it had a real beginning, context and an ending with a lesson. I would post it here but the requirement for getting it submitted on this other website is that it can't be published anywhere else on the web. So it is my greatest hope that it will get approved at some point and I'll be able to give you an actual link to it for you to go and see it. I have dreamed since I was probably about 8 years old about becoming a writer and I now have it within reach and it's getting harder and harder for me to hold back from wanting to contribute to as many forums as I can.

Yesterday I talked about my struggles lately and the deep depression I have found myself in. I pondered what happens when the caregiver needs care. I feel like that post was an unfinished thought because in a way I feel like it needs to be explored further and with a wider net cast to include more of you in the consideration of what can be done. Hopefully down the road I'll cover that. What was the most touching to me was all of your offers of support and even better for me and for probably all of us was that so many of you shared similar feelings and experiences to mine. I was so grateful for that because it helped me but more exciting for me is that it made the post richer because you guys were able to read each other's stories and know that none of us are alone in our struggles. You made my blog an amazing place that day and I can't thank you enough.

As for today, I just want to write a little bit about what I'm now seeing in Thomas over the last couple of days. For reasons he's not revealing, he has abandoned his computer for his ancient handheld video games and spends a lot of time plugged into his mp3 player. I have also found him escaping the house to the front porch (never a good sign in the past) and he's also hanging around me more. For some reason last night as I was leaving on my evening dog walk I looked at him sitting on the couch and I just knew something was wrong with him. I asked him if he was okay and he said he was in a very unconvincing way. I stopped and put my hand on his head and then rubbed his back and I said, "Are you sure you're okay?" Again, he said he was so I left for my walk. My mom instincts are in overdrive now and I know something is wrong. Like in the past, I have picked up on his distress long before he's been able to put words to how he is feeling. With the delusions back, the heavy work load, and a change in behavior, I plan I keeping a close eye on him for the next few days. Something is not right and I want to catch it before we reach a point of no return.

In closing I want to wish you all a good weekend. Whatever you are dealing with I hope you find some peace in between it. I'm going to make an effort to do that myself. Thank you everyone. You are the best!!

Thursday, June 12, 2014

What Happens When The Caregiver Needs Care?


 

It appears that I have reached rock bottom. There are insurmountable issues in my family which are killing me right now and Thomas' delusions are back not to mention we have to go on a vacation soon with my whole extended family, few of which are getting along with each other, me included, and then the whole point of that vacation is to spread my dad's ashes which has become increasingly difficult for me to make peace with as the time to do it comes closer. I am in the worst place I have ever been in my life and I am scared about what's next for me. I actually feel like I could die from all of the pain--I don't mean kill myself, just die...of perhaps a broken heart? I don't know but I am in a terrible place. Last night my husband Dan suggested I go to a psychiatric facility "for a rest" and that was like a knife to my heart. Is that was all of this has come to? Do I belong somewhere locked away from the world? And for what exactly? I told my husband that I could go away but that it's all going to be here when I get back. I learned that from going to Vegas recently. I had so much fun but I got on the plane to come home and immediately burst into tears because I knew I was going back to the place where my dad is still dead and my son is still sick. The bright lights and big city did little, in the end, to change anything. So going away now seems completely pointless.

Here's the thing though and I asked the question above, what happens when the caregiver needs care? Poor Thomas, like my sweet boy has always done, is feeling every bit of my emotions and is suffering too. I have had two talks with him explaining a little about what's going on and trying to reassure him that none of it is his fault and that things will be okay in time but he seems unconvinced. I told him the other day that I missed him and I thought that was because he is always in his room on his computer but it hit me yesterday that I have been gone too. I haven't left my house on my own for a couple weeks or more. I sit and stream TV and movies and curl up in a ball in sweats. I barely speak to anyone including Thomas. It's me who's been gone, not him.

What makes me sad is that I am so mired down in my grief over the loss of my dad and my anger at one of my family members and depression because my life is missing whatever it is that usually keeps me going that I am missing the signs or not staying on my watch over Thomas and he is ever-so-slowly going back to the bad place and I haven't the energy to fix it mostly because I don't know how and because I don't know how, I feel depressed. I am Thomas' caregiver and I need to get my <bleep> together pretty soon or I am going to lose him again.

So, again, I am brought back to the question, what happens when the caregiver needs care? I have no idea. Maybe when I'm back on my feet I can figure this out so that I can share it all with you. My going away somewhere isn't the answer, I can tell you that. That would mean leaving Thomas alone again and that didn't go very well when I went to Vegas. I suppose I could get therapy but I kind of wonder "what would be the point?" Nobody can change my situation but me. I mean, I think that's true. The trick is finding the answers that are going to help me change. I have to say that right now, I have no clue whatsoever what those answers might be.

With all of that said, what do YOU do when you're in a dark place and feel like there's no way out?

Wednesday, June 11, 2014

When Does Reality Become A Delusion?

 

On our way up to Dr. N.'s yesterday I spent the entire drive talking to Thomas. I have been hating our lack of communication lately and I thought that since I had him captive in the car with me that I was going to do everything in my power to get him to talk to me. I jumped right in and started with the big stuff, his increasing delusions. I was scared that he was going to shut me down about that particular subject but I began with telling him that I just wanted him to help me understand him. It worked.

I asked him all about it and learned quite a bit about what he thinks. What it seems to come down to is that he has this strong belief that he will do and be something important. He rates the "believeability" of that at 20% (100% being that he completely believes it). Now, that's all well and good but I think, after talking to him, that the number is much higher. I will have to take him at his word though. One thing in everyone's favor is that he doesn't really have a plan yet, it's mostly that he just thinks this to be true. So that begs the question, is this a delusion or is this just a kid who has a plan for his life?

While he saw Dr. N. I talked to my own psychiatrist and asked her about that. I used the analogy that I believed that I was going to be an author of a book someday. Obviously my "believeability" about that is pretty high. So am I delusional? Her response went something like this:

"Believing that you will someday write a book is a goal. It is realistic and it is within the realm of possibility. Thomas' belief is of a different nature and one that isn't very realistic and is "out there" as far as the subject matter of his thoughts."

I told her that I wasn't going to tell his doctors about this change in him because as part of the bargain for getting him to tell me everything, I promised him I wouldn't say anything to them but that if it gets distressing to him or symptoms like paranoia and hallucinations show up that he then needs to talk to me and to his doctors. I asked her if I was doing the right thing by promising that. Her last words to me were ones of great caution,

"Just watch him."

She kind of put the fear in me a little bit about what I had promised Thomas and when I went in to meet with Dr. N. I almost said something but I looked over at Thomas and I just knew that I couldn't betray his trust in me. Not yet anyway.

Now, I have been here before and I'll probably be here a thousand more times in the years ahead but again, I have to ask, when is something a delusion and when is it just a lofty dream?

If you have any thoughts, please, write them in the comments section for me. Thank you.

Tuesday, June 10, 2014

To My Blog Followers--A Message of Support



All around my (Facebook) blog I have seen where a lot of you are struggling right now and it seems like you are in need of support of one kind or another. I would like to remind you that you can always message me privately here on the page by clicking the "message" button in the upper right corner and writing me. I am not an expert beyond my own circumstances and from learning from you all here on my blog but I may have something I can offer you even if it's just to let you know that you are not alone, that you don't have to do any of this (cope with caring for a loved one living with schizophrenia, cope with stigma, cope with symptoms, cope with feeling alone) alone.

I will say that this blog is not meant to be a support group necessarily but sometimes one member will help another if they see their comments in the comments section. We are all good people here that care about each other and are eager to help where we can so feel free to speak up.

I also offer a couple of "secret" support groups that are affiliated with this (Facebook) blog that have members who are beyond amazing and who offer support to each other in a way that makes me proud and happy to know them all. If you want to be in one of the groups, message me privately here on the (Facebook) page using the message button in the upper right corner and tell me a little bit of your story and I will find a group that will be a good fit for you and your circumstances. The support groups are 'secret' because they are set up so that no one on Facebook can see that you are a member of it and they can't see what you post however be aware that everyone's post from the group will show up in your timeline but that does not mean that your regular friends on Facebook can see them. I have sealed these groups in this manner because so many of you have expressed that you need a place to go to be honest about your feelings with others who can relate without family members and friends seeing. They are wonderful places so please, if you need support, contact me.

I always hate to remind people of this because then I end up losing the conversations on my blog which make the conversation richer but I have to be fair and informative about how the blog itself works. This is a PUBLIC page. Everyone, everywhere can see that you have 'liked' this page and if they're paying attention they will also see your comments here. If you need to keep your circumstances private then I urge you not to write anything here. However, if you don't mind sharing your stories and thoughts about what I write then please do so because it makes this place more diverse and educational, not to mention it shows others that they are not alone with what they deal with.

I may not always comment on what you comment about on my page but please know I am reading everything and paying attention. I appreciate everyone's contribution beyond comprehension and I am honored that you take the time to either 'like' what I write or comment on it. As a reminder, you can always 'like' a post of mine and even if it's not a happy, positive post, 'liking' it shows me that you see it and are reading it and that perhaps it touches you in some way. I do the same for you by coming through and 'liking' what you comment so that you can see that I read it and that I care.

In closing, I want you all to know how very much I appreciate you. I appreciate that you joined my blog, to begin with, and that you contribute. I appreciate each and every one of your circumstances and your kind, caring words to me mean everything to me. You all have touched my life in the biggest of ways and I COULDN'T DO ANY OF THIS WITHOUT YOU.

Thank you for being here and remember,

YOU ARE NOT ALONE IN THIS.

With love,
Melanie

Monday, June 09, 2014

I Miss You Too Mom

 
Along with the other changes that have been happening in Thomas lately one has been that he and I aren't talking anymore. Well, he's not talking. I'm doing everything in my power to come up with things to say and to ask him and most of them are met with one word answers or nothing at all. I don't know if this is a function of his new (old...usual...never really went away) delusions and depression and isolation but it is making me sad. I am watching, again, as he disappears from me and I wonder what is going on inside that head of his. I wonder, too, if watching those history shows somehow made things worse. Well, worse in my opinion.

You see, he has always said he finds comfort and an inflated sense of self esteem when his delusions have been around so I'm certain he would argue that they aren't getting worse. He would probably say he is glad they are back. I'll never really understand that. Not really. I mean, I guess if I had something I believed to be true about myself and someone was always telling me I was sick and needed medication then I would be mad, depressed, and not talking too. What do they know about me after all?? While I haven't said much to Thomas about his revived delusions, when I did ask him if they were back he was quick to downplay them to me and I just let it go.

The question is, and you probably think I'm crazy for still mulling this around in my head, but should I tell his therapist or Dr. N. about this? Something is stopping me and I think I can kind of put my finger on it.

I want him happy.

I hate when he's depressed and angry and I think if the delusions are making him happy, even a little bit, then I don't want to take them away from him. Am I crazy? I guess where the problem lies is when the delusions couple up with paranoia and hallucinations and it's a fine line between just being delusional and all hell breaking loose. I'm kind of taking a watch and wait approach (wait, have I been here before? This seems familiar) and I'll see how things go in the next week or so. Someone here on the blog mentioned to me that it could be stress from all of the work he is doing that is causing this and they may be right but if he is medicated more, he's going to be so sedated and flat. I don't want that for him and I am waiting for him to one day reach his threshold and tell me he's not taking the meds anymore because of the side effects.

At any rate, we aren't talking and I hate that. I feel like an incompetent mom because I can't find things to talk to my son about. To be fair, I ask him about what he watches on YouTube and if it's funny or interesting or I ask him about the games he plays and if he is winning or I ask him about work. It's not like I'm not trying here.

So, this is what it's come to. I know he's probably headed to the bad place, he's not talking, he's isolating and I miss him like crazy. I went to him last night at bedtime and I hugged him so tightly and I just simply said to him,

"I miss you kiddo."

What I got back?

"I miss you too mom."

We are two ships passing in the night and right now we can't seem to find each other.

Sunday, June 08, 2014

Here Come The Questions Again




Well...I did what I hate doing and what I don't really want to do. Last night after Thomas went to work I turned on his computer and looked around. I have to say, it wasn't as scary as in the past but there were a few things that concern me. I hated every moment of this violation of his privacy but I had to know things since he's changing again.

I wish, in a way, I could talk here about the details of what I found but for some reason, I don't feel right talking about the content of his delusions. They scare me and I can imagine that they might scare some of you. Either that or you will be able to identify completely with what Thomas deals with. I can say, though, that just like before the stability and just like most of his early teens and now right now, his delusions are government related. It makes me so sad to write that as I know what is behind the statement that they are government related.

Last night I sat slumped in the seat of the car as my husband and I went to buy dinner. I felt so defeated and so full of questions.

How did this happen to Thomas?

Why does he choose the particular subject that he does for his delusions?

Will the medications ever really touch what I consider to be his most serious symptom of schizophrenia?

Why can't he be more "normal"?

What can I do to help?

Is this how his life is going to be forever?

On top of the questions, I stated what I think to be true and that is that meds will always have a chance at taking away his paranoia and hallucinations and for just moments, his delusions. However, they will work longest on the hallucinations/paranoia but I think those damn delusions are so fixed (just like every doctor I've ever talked to said) and they will be dampened down for a while but somehow, for reasons I'll never understand, they will find their way around the chemical restraints and flourish again. Do you know how much I hate those delusions?

I think what it is and I explained this to my husband Dan last night, Thomas' delusions make him happy. They give him a euphoria of sorts. Their (sinister--to me) presence increases Thomas' self-esteem and have the potential to turn him into someone I don't even recognize. In essence he loves having them and doesn't want to get rid of them. I liken it to one of us without schizophrenia being told that we need to take away one of our favorite hobbies that keep us grounded or a personality trait that everyone loves about you. Only Thomas' "hobby" and personality trait are, in the end, maladaptive and threatening to his future and to his mental health. I sat there in that car feeling hopeless as I talked about all of this.

WHY THOMAS??? WHY HIM? HE DIDN'T ASK FOR THIS! WILL HE EVER BE "NORMAL"??

I already know the answer to that and I find myself, yet again, attempting to make peace with all of it. It's not easy, in fact it's nearly impossible, but I guess I'm never going to stop trying because what is in my son's brain, what is gnawing away at it and leaving holes, what is twisting otherwise normal thoughts, is a SERIOUS mental illness and it's chronic and apparently in Thomas case, never going to be totally stable, not for long anyway.

I was told once by my dad that life wasn't going to be easy for me. He said that my life was going to be harder than most. He didn't know why exactly but he just knew it to be true. At the time I was just a young woman and I had made a few mistakes, gone down paths I never should have and had been hurt too many times to count. Now, though, I see what he was saying. My baby, my heart and soul, is sick and will need my help forever and being there for him in the hard times will be the most difficult times of my life.

I love you Thomas. I will never stop fighting for you.

Saturday, June 07, 2014

The Langoliers


The story of the Langoliers is written by Stephen King. It is about these monsters that follow these people on a flight across the country eating up time. (From Wikipedia) "Upon arrival, the airport is abandoned with no signs of life. Everything seems gloomy; there are no odors, electricity, or echoes anywhere. The weather patterns are motionless, there are rapid shifts from day to night, food and drinks are tasteless, and matches simply sputter out. One by one, beginning with sharp-eared Dinah, they soon hear a "radio static" like sound in the distance. The sound appears to be threatening and dangerous and the group eventually reaches a consensus that they must leave before it arrives. Craig believes it to be "the Langoliers", monsters he was afraid of as a child, who go after those who are lazy and waste time."

Now, I take from this movie two things to illustrate my post today. First is the description of the airport and how quiet things are. This to me represents Thomas' stability. Then the passengers hear static, which in my memory from when I watched the movie sounded like a munching and crunching sound coming from behind them on their flight, illustrates my next point. It is a terrifying thought that something is after them and a terrifying depiction in the movie. For me when I watched it, the notion of something unknown thundering up behind me scared me to death. Indeed what was chasing them were the Langoliers and the unknown of them was scary.

The Langoliers in my story today are what's creeping up on Thomas' stability. I am hearing them in the distance coming for Thomas and for me as his mom and caregiver and I am scared to death. Here's why:

I sat and watched a history show with Thomas in the last couple of days. There has always been one time in history that Thomas identified with and leaders of that era that he identified with. When he recorded the shows I had mixed feelings about it because I knew his past and I thought the shows might be a trigger for him. I watched him watch the first hour or so and he seemed okay. Then, like I said yesterday, I discovered that these shows were my "back door" that I needed to get into his mind and learn what he's thinking. I laughed nervously inside myself as I brought up my first question to him about what he's thinking. I thought to myself--more like hoped-- that what I was suspecting really wasn't true. I thought to myself that he has been stable for a while, that his paranoia is gone but I have been worried about when he might become sick again. So I asked him about the show and the world leaders and I asked him about how he felt about all of it in relation to him. Then the munching and crunching of the Langoliers overtook us and suddenly I found us consumed in his delusional mind.

Oh God. Please. No!

There he sat before me talking about this and my heart was in my throat and I could barely swallow. I asked myself why I had let him watch these shows. I asked myself if he had ever really been "stable" and I came to the realization that we had gotten our few weeks but that was it and here we are again. I can barely type this because I am looking back over a year of my writing this blog and the rollercoaster we have been on for that year (and the ones before it) has not actually stopped after all, we have just rolled into the station to change passengers and now the lap bars are coming down and the clicking chain that pulls us up the hill is in motion.

These delusions, my illustrative Langoliers, are nasty beasts that merely lay dormant in my son's mind. Our otherwise quiet "airport" has become a frightening place as I have come to realize that the munching and crunching I hear are the sounds of the delusions coming to consume us and it's too late to run now.

Friday, June 06, 2014

The Kaleidoscope

 

Here I am, yet again, taking a deep breath before I write this. I had one of my "famous talks" with Thomas yesterday where I find a way in the back door to his mind and learn what is really going on inside his head. I kind of don't know what to do with this information but I suppose I will start with letting his therapist know.

Therapy yesterday was a bit frustrating for both myself and Thomas' therapist. Thomas is such an enigma and trying to figure out the "why's" of his behavior takes serious detective work that more often than not goes down in flames. I felt like I was the observer in a rather intense game of 20 questions--only it was more like 100 questions.

What we are trying to figure out is the source of Thomas' ever-changing emotions about work. For so long he was anxious. We all knew that was because of his paranoia and delusions. Then he became "stable" and he was pretty ok with work. That lasted probably a week. Then 2 weeks ago he began burning bright with anger about work. It came out of nowhere and was impossible to find tools to help him cope with it. Then came the crippling depression about work. Before and while at work he would maintain a level 5 out of 10 on the scale rating his depression's intensity and even went as high as a 7 at times. I used everything in my toolbox to try to help him and failed. That is where we are today. Puzzled about this ever-changing mood state of Thomas's, his therapist likened it to a kaleidoscope. He said,

"You know how you look into one and you see a design and then "click!!" you turn it and you get a different design and then "click!!" you turn it again and find still yet another design? That is how your fluctuating mood states feel to me, Thomas."

I thought that was a perfect analogy. I filed that away inside and sat there listening to the 100 question game going on and tried, on my own based on the path his therapist would go down, to figure out for myself what is going on with Thomas. It wasn't until we got in the car that some thoughts about this began to take shape in my mind.

I went back to a conversation that Thomas and I had had a year ago. He had told me that he "didn't want to get rid of the paranoia because he didn't know what he would put in its place." At the time I was frustrated because I figured if he wasn't going to let go of it then how was he going to get healthy? Then I went back even further to the conversation I had with Thomas' doctors when he was hospitalized and diagnosed with paranoid schizophrenia. They told me that Thomas' mind was like a huge sphere twisting and turning to accommodate incoming information about his experience in the world. This sphere was a mass of delusions and if I (for example) were to pull something out of it in an attempt to help him then he would "quickly work to fill it in with something new." They told me that he would never be well because he had been working on this sphere for years before we caught it and the chances of fixing it were slim.

I thought about what they said and what Thomas said and I realized something. Thomas is more stable now. He no longer has paranoia and his anxiety is just about gone so in effect that leaves holes in his mind that need to be filled. He told us yesterday that he is depressed before and for a while into work and then it dissipates because he has to focus on his work but then he comes to some sort of awareness and essentially reminds himself that he's depressed. I thought at first this was a fully cognizant choice on his part but after talking to him I realized this was an automatic function of his brain and that sphere. What I realized, is that in the absence of his constant hypervigilance about the preoccupation with paranoid thoughts he was filling the proverbial holes in his sphere with the only thing he has left. Feelings!! He has to do this! It's what his mind does. If it's like what the doctors told me, right now his sphere is twisting and turning and since we pulled paranoia out of it we have left open doors and gates to holes that need to be filled.

Eureka!!

So, I sat with Thomas and talked to him about all of what I have written above. He mulled over what I was saying and he agreed with my line of thinking. I couldn't believe it! We had our answer! This was a moment to celebrate a little bit.

Now, though, this morning I feel a sense of foreboding. The doctors were right two years ago. He's doing exactly what they said he would do and he is replacing one thing with another all in an attempt to right his inner world. Now what do I do? What do I do with this information? If this is an automatic function of Thomas' mind then how do I make it stop? Clearly this is something that is untouched by the meds and I'm not sure it can be touched. I can see that the meds' function is to eliminate paranoia, delusional thoughts, anxiety, classic depression etc. but what on earth is going to stop the sphere as a whole?

Thursday, June 05, 2014

OK, Sure, Let's Blame The Parents

Alright, I have had just about enough of this!!

I haven't watched a lot of news about these two 12-year-old girls who stabbed their friend because "Slender Man made them do it" but I did happen to catch a CNN show hosted by Dr. Drew Pinsky yesterday. He had his panel of "experts" on there and they argued about what caused these girls to do this, they argued about what their psychiatric diagnosis might be and they argued about the role these girls' parents played in this. This show was full of a bunch of garbage, in my opinion, because in the end there was no resolution to the why's etc. because--surprise, surprise--none of them are really experts on these girls.

I know I said a few things about the shootings and stabbings in Santa Barbara but this one hits even closer to home for me for three reasons. One being that the parents are being blamed, two being that there was an argument about whether one of the girls was delusional and hallucinating (a la schizophrenia--though they didn't use that word. They used every other word but that one.), and three being the subject matter, Slender Man himself.

For anyone who doesn't know, Slender Man is a creature with no face, he's wearing a suit, he has tentacles coming out of his back, very long arms and is 8 feet tall. Admittedly he is a bit creepy however his origin is from a big Photoshop contest held in 2009 whereby people were asked to create something scary and photo shop it into a picture. Since then, among the younger crowd mostly, he has become quite popular being written up on Creepypasta and made the subject of YouTube videos. There is a lot to his "legend" and apparently these girls who stabbed their friend don't even have the story right, twisting it to fit their need to justify this attempted murder. Dr. Drew argued that at least one of these girls has a "serious psychiatric condition" and cited the supposed "delusions and hallucinations" she had. He said that if she showed up in any emergency room saying these things, she would be put on a 72 hour hold for observation and further evaluation for a psychotic disorder.

The other thing about this whole story is that at least one of the set of parents of one of the girls is being blamed because of the "lifestyle" they led and the kinds of things they bought in to. The "experts" felt that this lifestyle led to this girl getting involved with the legend of Slender Man. On top of that, the "experts" went on to argue that all parents should be monitoring their kids' online access at all times in an attempt to head these sorts of problems off at the pass.

This is where it gets intensely personal for me.

For years I tried my level best to monitor what Thomas did online. The only computer he could use was right in the main living area. I would occasionally catch something I didn't particularly like and I would tell him to shut it down. Then as time went on and his social circle grew, he was always at friends' houses doing God knows what on computers and video games. I had zero control over it except to ground him from those friend's houses but even at that, there was coming a point where Thomas wasn't going to be able to have any friends because they were all involved in suspect things on the internet. So, the time came that I relaxed a bit, succumbing to the realities of parenting in the internet age.

Eventually I bought him a laptop but to some degree that went unmonitored too because I wasn't always home and I just wasn't going to spend my time combing through his computer looking for anything that might be bad. Time marched on and then last year Slender Man came into our lives.

He showed up here and there in Thomas' art work or in casual talks with me. Then, last May, all hell broke loose. In the middle of the night on an unassuming May day, I was woken up and told that Thomas was scared and was asking to go to the hospital. I went in to his room and found him terrified and he said that Slender Man was after him and he didn't feel safe at home and needed to go to the hospital. As the early morning wore on to the next day and then the days after that when Thomas was in the hospital, it became apparent that he had gotten wrapped up tightly in his belief that Slender Man existed and was hunting him. He had auditory hallucinations that accompanied the visual hallucinations and delusions and even requested, at the intake to his hospital stay, that he get a room that had a ceiling lower than 8 feet tall so that Slender Man couldn't get in to it and get him.

There he was, my psychotic child, already diagnosed with acute paranoid schizophrenia after unrelated (to Slender Man) delusions and hallucinations surfaced and landed him in his second hospitalization. There he was, my psychotic child, believing that this "legend" was actually after him.

So tell me something, all of you, WAS THAT MY FAULT? WAS I A LAZY PARENT WHO DIDN'T CARE ABOUT WHAT HE WAS DOING ON THE INTERNET? DID SOMETHING I DID OR DIDN'T DO OR SAY OR DIDN'T SAY CAUSE MY CHILD TO BECOME PSYCHOTIC AND END UP IN THE HOSPITAL?

The answer to all of that should be a resounding "NO!". My boy was already sick and I do not believe any parent can monitor their child 24/7 on the internet. I just don't. I tried. Believe me, I tried. All the way to the point of stopping friendships that even sort of might have influenced Thomas which in the end I feel like was a bit of a cruel action on my part because it just wasn't realistic and it was unfair to Thomas to lose good friends because of my fears.

So here's the thing. I know nothing about these girls who stabbed their friend while being motivated by Slender Man. I know nothing of what the parents did or didn't do and frankly, it really isn't my business. But here we are again hearing from the media that the parents are to blame etc. etc. etc. and parents like me who have done everything they can, and still their child slipped through the cracks, are left feeling like bad parents because our children found Slender Man or any number of other menacing stories to fill their heads with.

So, again, to those arm chair psychiatrists out there shoveling junk food into their traps while they watch the news and judge parents like me and to the media whose ONLY "expert" qualification is to make all of us parents feel horrible about what we did or didn't do, I want to "flip you the bird", roll my eyes, turn away in disgust, take Thomas by the hand and walk into the future knowing I'm doing everything I can for him and will never stop.

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