Friday, May 31, 2013

Dream State

I sent my son off this morning to his final graduation practice and went for a walk. When I got home all I wanted to do is go back to bed, I couldn't fight off the overwhelming tiredness and sadness that had taken me over during my walk. While I slept, messages and a call came in and while I was caught in a dream state, I was conscious enough to register what each alert tone meant because I've assigned every person and event their own tone.

It's always funny to me how being awake enough in a dream state makes everything feel like waking life except it's a little off kilter in some form or another. While caught in Never Never Land, my own Peter Pan (my son) texted me from the graduation venue and said he was going to a friend's house for lunch. I texted back "ok" and drifted back to sleep.

It has to be said that that feeling of being caught in the two worlds of dreams and wakefulness must be what it's like to have schizophrenia, at least that's how I imagine a part of it must be. It's almost like drowning in a skewed version of reality and fighting like hell to regain a foothold in real life.

So, in my dream, I was at my front door with my son and he was leaving somewhere and I was worrying about him and his medications and how he might be feeling later in the day. He got a bit mad at me and said to me,


"Mom, it's not like I have cancer. Stop worrying so much about me, it's annoying."

And out the door he went. In my dream I cried quiet tears while hunched over my desk holding my head in my hands. All I could think as I cried was,

"Doesn't he see that he may as well have cancer?
Can't he see that if he's in his friend's house late at night and he sinks into psychosis that I won't be there to help him?
Can't he see how alone he is in this world when it comes down to it, when this illness decides to grab hold and change his current path?"

So many dream questions with no answers. My boy had run out the door to live his life and I was left worrying about the fact that while he wants to live like his friends, he won't always be able to and there is no one on this earth that will know how to help him in the critical moments at 2 a.m. when the hallucinations fill the darkness of the room and threaten to engulf him.

That dream was a nightmare and really, when I woke and as I process it here as I write this, I am now painfully aware that that nightmare is my real life. I have so many questions about the future, so much knowledge about how hard it is to be an adult (and not even an adult WITH SCHIZOPHRENIA), I know what it takes to survive (and have almost not survived many times in my own life) and I'm terrified for my son. All he wants is to go out with his buddies and have lunch at McDonald's and play video games and stay up till 2 a.m. All he wants is the red-blooded American young man's life but he will have to do all of that with schizophrenia and a pill case full of anti-psychotics in tow.

So, I wake from a nightmare to find that in some ways my nightmare is real, only there's no chance to fight my way out, to get a foothold in reality, to right the injustices that have overtaken my son's life and brain because my dream state is my reality.

Tuesday, May 28, 2013

Ice Cream Parlor

I wanted to share a little bit about a unique symptom of my son's schizophrenia.

There are so many facets to this illness and one of them is hallucinations. The most common ones are auditory and visual with auditory being the most common. But my son has one of the lesser known (to the general public) hallucinations and I think it's worth sharing with you because it illustrates the varied nature of the illness.

Like a lot of things with my son's illness, I did a lot of brushing off of things I saw happening in him for the last few years. It wasn't like they were dramatic things that demanded my attention, it was more that I would see something or hear him say something and then think to myself that I probably wasn't seeing or hearing that right or that maybe I was worrying too much.

Then last Fall, I had to take him to the E.R. one afternoon because he was suicidal and I sat with him in a dim, tucked in back of the E.R., very plain room. While I looked things up on my phone and texted family, my son piped up and he said:

"It smells like an ice cream parlor in here."

As usual, I stopped for a minute to process what he was saying and then I sniffed the air. It smelled like a hospital room to me, kind of damp, kind of like chemicals but it definitely didn't smell like an ice cream parlor. I told him I couldn't smell anything but musty hospital room and he said:

"I can smell the waffle cones and vanilla ice cream."

Once I realized what was happening I couldn't help but find some love for this moment. How nice it must have been for him to be smelling an ice cream parlor complete with waffle cones and vanilla all in the midst of his crisis and that wretched hospital room.

You see, what he was experiencing is what is called an olfactory hallucination. He was smelling things that weren't there. I've heard stories of people smelling things rotting and other unpleasant odors but my son smelled waffle cones and over the next few weeks, things like pine trees in our house (even though there are no pine trees around us and I don't use pine cleaner or room spray) among other things.

There is so much that is just so awful about this illness. So much that is unfair and amidst all of that, I can't help but be thankful that if my son is going to have this illness then thank God he smells waffle cones and pine trees sometimes.

Monday, May 27, 2013

Breaking A Fever

I have to admit that after my son's good day yesterday, I was worried that he was going to have a bad night last night. After all, the last time I saw him bright eyed and happy was the day before his hospitalization. So, I woke today to find him still in bed which makes me happy. He'll need his rest because this week is his last week of high school ever and he graduates on Saturday. That is stressful stuff (with finals and projects due) and I need to keep his stress level low to protect him from worsening symptoms.

But I got to thinking yesterday of an analogy and I wanted to share it with you. When the dust settled the day after he was hospitalized and I had a second to think, I wondered if somehow his really good (smiling with his eyes) day was kind of a precursor to the psychotic break. I wondered if somehow it happened because he had let his guard down that day and allowed himself to be happy, to feel joy, to just FEEL. He always seems so lost inside himself and has often voiced: "I am not in touch with my emotions". So, I wondered...had his freedom precipitated his prison of psychosis?

As the days of his hospitalization wore on and I watched his behavior morph from one thing to the next I couldn't help but feel I was watching some sort of transformation; I just didn't know who he was transforming into. Slowly, though, over the last few days, I have seen a healing in him. Every concerned look I have shot his way, every tentative step into a room he occupied, every question about his well being that I have (probably annoyingly to him) asked him has been met with a smile and a:


"Yep, I'm doing good mom!"

So then yesterday I thought of what this whole thing reminded me of. How many fevers had I been through with my boy? How many nights had I sat up with him when he was sick? How many mornings had I been met with a pink-cheeked, bright-eyed, bounding boy who was now up and at 'em and ready to climb the tree in the front yard or run his Tonka's around in the dirt?

Has a fever broken here? Had that stay in the hospital and the accompanying fight for sanity been a sort of "breaking of sanity". I don't mean the psychotic break which is what happened to him at 2am that terrified him. What I mean is did his mind just fill up so full of psychosis that it had to fire up and then reset?

I'll never know because I've never read it put this way but I have my observations, my vigilance, my moments of breath held waiting to see what he would do and to me, it seems as if a fever has broken and he is getting a second chance.

Sunday, May 26, 2013

Average Everyday

My son just bounded (yes, bounded) up the stairs, announced he was going out to film a video with a huge group of friends, disappeared into his room and changed into clean clothes, grabbed some props, sat here with me clear-eyed and animated and talked to me while he waited for his friend to pick him up all while munching on a couple pepperoni sticks (one in each hand LOL), and he just went out the door and got in the car and drove off with a smile on his face.

I needed to see him happy, he needed to see his friends.

I love average everyday events that we often take for granted.

Around The Campfire



When I was little my family and I would go camping and each night we'd gather together around the warmth of the fire and we'd tell stories and make s'mores. We'd stare across the flames and rising embers into the darkness and talk about life.

Now, here I am, gathered around the proverbial campfire with all of you and all of my new friends with family members with schizophren
ia that I've made since my son got sick and I started talking openly about it. Here we all are, each of us with our stories to tell, staring across the open flames that warm us and gather us close to each other and we stare into the darkness of this illness and the unknowns that are our future.

That you are all here with me, that we can sit together in our circle, that each of our stories are so different yet so very much the same, makes me feel like I'm not alone in the darkness. Every day, even in daylight, it surrounds us all but just knowing you're out there, just seeing your names on my friends list, just reading about your days and the ordinariness of them, just seeing that life goes on even while this illness wraps it's tendrils around and throughout our loved ones minds and our hearts, makes me feel like I'm not alone.

Often there is silence as the fire crackles and turns to glowing coals and it is in that silence that we speak our loudest words. The silence of a shared knowledge, a shared camaraderie, and a shared despair. We make eye contact across the fire and nod slightly and say a thousand things while tears well in our eyes.

I am not alone. WE ARE NOT ALONE. We have this fire, its warmth, and we have each other. Our sons, our daughters, our husbands, our wives, our loved ones with schizophrenia are not alone because we are all here together with one goal and that is to better understand, to find love in the unfairness of our fate, to learn and most importantly to sometimes find laughter in between.

What brought us together in the first place is this illness but what keeps us together is that in the end we found friends we can depend on, even if all we do is sit in silence together around the campfire.

Saturday, May 25, 2013

Sundown

As the day comes to a close after a beautiful sunny day sitting in the same room with my son while we each worked at our computers, I find myself a little uneasy about the night ahead. I see worrisome signs in his behavior and I can't help but cast a skeptical eye on every movement of his and every word from his mouth. I know that this feeling will subside eventually and I just have to let things settle down, both inside of me and outside, in the rooms he and I share. The static electricity of my worry raises the hair on my scalp and arms as I listen for his footsteps on the stairs or see the hunched over, secretive posture he holds as he walks by the living room that indicates something isn't right.

Will I ever not be on alert? How many nights will we have to live through without incident before I can stop worrying? These are questions whose answers lie within time passing, I know, but time

s-l-o-w-l-y goes by. One moment, one breath held, one jump at an out of the ordinary sound all mark time until everything's ok again.

For tonight though, I drift off in my chair in front of the TV into a fitful sleep and wrap myself up in a blanket and pretend, like I did when I was young, that the blanket is my armor that nothing and no one can penetrate.

Good night all and may you have a peaceful evening and a good night's sleep.


Dusting Off

I thought for weeks that if my son could just go to the hospital and get situated that things would be ok. I was so wrong. Admittedly I live in a lot of denial and a lot less acceptance of what this illness means for my son and for my family. Tonight I feel like I've been dragged behind a horse along a dusty, rocky, rutted dirt road and I'm dusting off now and feel dizzy and bewildered and scared and completely lost. I just want my son better. That's all and apparently the best I can hope for are the good days scattered among the ruins of this illness.

Tonight I feel hopeless.

Tomorrow is a new day though, right?

A New Day

I woke this morning at 8:30 to discover I had slept through the night. I hadn't slept since my son went into the hospital so it felt good to have him home safe with me. I opened the door to my room and instantly saw that his room was empty and suddenly I was filled with panic because I couldn't figure out where he was. For one thing, he rarely wakes up before me, even if I sleep late.

It's amazing the speed at which your brain gets to work in a scary, unfamiliar, completely ambiguous situation. I don't know about you but in the space of maybe 5 seconds I've thought enough thoughts to put myself in a state of ready alert. I immediately investigated the house and found him down in the basement happily playing a video game and slightly annoyed that I was fawning all over him and asking for a hug RIGHT NOW.

My 5 second flood of worst case scenario thoughts evaporated instantly in the arms of my smiling son. He had made it through the night, he had made it up to his darkened room, alone in the middle of the night, from the scary dark basement and had slept through the night. Life is good.

It's a new day.

Friday, May 24, 2013

Free at last...................

I will say this and then I'm going to let it settle in myself for a few hours. My son was just released from the hospital.

NO MEDS CHANGES...


NO MEETING WITH A DOCTOR OR SOCIAL WORKER

NO MEDS FOLLOW UP WITH REGULAR PROVIDER TILL THE 7TH OF JUNE

NO FOLLOW UP WITH REGULAR THERAPIST FOR 1 WEEK

And a fine fine speech from the discharge nurse about the great changes the hospital has made recently and how the quality of care has gotten so much better.

Wow, if this is a "better quality of care" I'd hate to see what it was when it wasn't "better".

I have no words.

Don't get me wrong. I'm THRILLED to have my son home but the chances that he'll go back are pretty high.

I have to let this sink in now. I just wanted to let you all know that he's home now.

180 Degrees

It's funny because visiting hours are 12-1 and 6-8 and somehow the time in between is filled with so much of nothing except it's everything. Mostly crying.

Yesterday I showed up at lunch visiting hours and found my son in a 180 degree state from the day before. This means mostly that he was awake. Very awake. He was also very agitated and angry (and taking it out on me for no reason) and full of ideas for why things were the way they were.

He explained to me that the reason he was no longer sedated was because the milk in the hospital was different than the milk I use at home and therefore I needed to change the kind of milk I use at home so that he wouldn't be sedated anymore. I use 2%...just like the hospital. My parents and I tried to get down to the bottom of his reasoning and were unsuccessful only to finally narrow it down to the 2% thing but my son was unconvinced. For those of you unfamiliar with the illness, this is a delusion in the making. A delusion is a fixed false belief that cannot be changed even when the person with schizophrenia is presented with evidence to the contrary.

He also requested his writing book (he has several) and when I tried to clarify which one he was talking about, I was met with a verbal assault which ended in him demanding that I go buy him a new one "with lines". This is being written where you cannot catch the inference in the conversation. The whole thing dripped with disgust and agitation and annoyance (on his part) at me and me feeling like "what the heck is happening right now??"

The whole visit went this way with the ending being that he was going to go sign himself out right now. I told him he is 18 and can do what he want. He didn't sign himself out.

I waited all day for the call to come pick him up and it never came. I went at the 6pm visiting hours with my mom and I was braced for a repeat of the noon visit and instead found a pretty well sedated but still angry and moody young man. The visit lasted about 15 minutes and he wanted us to leave because "he was bored".

I don't have room here to describe my day's experience completely but what you should know is that this kid I met with yesterday is not my kid. Not even a little bit. He is the sweetest, kindest young man (as you've seen written in earlier posts of mine) but this young man is a stranger to me and I came home with the most unsettled feeling. It's funny, with this illness I am left unsettled most times because I'm dealing with someone who's not functioning in reality. What I was left with last night was a feeling of a prickly ball of little spikes bouncing around inside my head and my heart. I was hurt because he was so rude and angry towards me and I was angry at the illness for doing this to my kid and of course my old familiar friend, grief, was painting it's wide swaths of darkness and sadness throughout my being.

My son is not my son right now. I know his anger is not really at me and I know that right now I have little if any control over how he feels or the choices he makes. It's hard to walk away after visiting hours from someone so troubled. Especially my struggling, sad, angry, hallucinating, delusional young man whom I love with all of my heart and soul.

I will see what today brings.

Thursday, May 23, 2013

Fighting The World

Forgive me if my writing isn't the greatest right now, my creativity has kind of gone on hiatus for a little while. I wanted to check in though and let you know what's going on.

I spent my entire day yesterday fighting the world, the insurance company (3 separate representatives), the hospital where my son is now and the hospital where I wanted him to go. I will share with you all at a later date the fight that I went through but I have no fight left in me to try to articulate the hell that was on me yesterday.

My hell, though, is nothing compared to my son's. I will say he got to see an actual, real, live psychiatrist and my son likes him so I like that. I haven't met him yet but the hospital is cooperating in getting me a family meeting with him and a social worker (who I know well and like) and then the treatment team. I feel good about that. My son's nurse overnight is an amazing guy...very patient with my "worried momness" and explained in a kind, respectful, intelligent, educated way what is going on with my son. I couldn't ask for a better guy to be with my son in the nights where he's struggling his most.

As for my son, I am told that his delusions and hallucinations are "pretty fixed" which means very tough to treat and get through to him about what's real and what's not. I spoke with my son's regular therapist yesterday and he told me that my son will be in a pretty bad place...maybe forever. His original tactic was to confront his delusions but he's not so sure that's the best idea anymore because of the nature of his delusions and how fixed they are. He seems to feel that teaching him to "live with the delusions" will be a better plan and that more aggressive medication will water down the severity of his hallucinations and delusions. That's best case scenario. I am also left very much with the impression that my son's prognosis is pretty bleak which was terrible news to hear (which I heard that last week with the whole "Brace yourself" conversation and now have heard from more professionals the same thing) and I'm still crying. I pretty much haven't stopped for 12 hours with the exception of while I attempted to sleep.

My son is quite drugged, totally terrified of his hallucinations that seem to be getting worse, and he's like a little child lost in a big bad world. Because of the altercation on the floor with another patient and her visitor, he is now afraid to go into the cafeteria but he has to be in there to eat his meals so my family have agreed we are going to be there at every mealtime that we're allowed and we're going to protect him while he eats so he at least gets some nutrition in him and feels safe while doing so.

I've gotta run now and shower and get ready for the day because the promise of this meeting with the doctor and the treatment team looms and I want to be ready the moment they call me and request my presence. Luckily I live just five minutes from the hospital so I can be there at a moment's notice.

I'll write more when I can. I want (and honestly, I need) you guys with me on this journey. It feels better not to do this alone plus I feel like I must share this with you all in the interest of keeping up the idea of this blog in the first place and that is to help people understand the experience of schizophrenia from a somewhat 360 degree view.

Wednesday, May 22, 2013

Thank you

To everyone who responded to me yesterday about my son, thank you so very much. It meant the world to me. As it stands right now he is hospitalized in our local hospital and won't even see a doctor for 2 days.

Don't get me started on that....


I went and visited him last night and he was like a terrified little boy between his hallucinations and an altercation that happened between a patient, her visitor and the staff, and then the fact that he hadn't been medicated at all yet...

Don't get me started on that.

...the end result was my son having to be sedated to calm him down. That has never happened to him before.

So he's in a pretty serious state of mind right now and needs a great deal of help that this hospital is FAR from equipped to provide so this mama bear is fighting like hell right now to get him moved to a facility with a higher level of care.

I can't say much more right now because I need to continue making calls this morning to line up everything but I'll keep you up to date. Thank you again to everyone that left me a message or commented here, it means more than you know.

You're on this journey with me now and I'll let you know what happens as the days go on.

Tuesday, May 21, 2013

My son had a major psychotic break very early this morning and had to be hospitalized. I can't say any more right now. My heart is broken.

Monday, May 20, 2013

"Oh, so he has the "flu"

I am amazed and disappointed when I tell some people my son has schizophrenia and their response is very casual and/or is followed by them saying something like:

"Oh, well, I hope he feels better soon."


I'm trying to figure out what that is a product of. Of course it's first a lack of education but what if they have some idea about the illness or worse yet, I've explained it and they STILL think he can just "get over it"? What exactly is happening there?

Nothing frustrates me more than hearing someone tell me:

A. "Tell him to quit screwing around and grow up."
B. "He's just being a typical teenager."
C. "Can't you just tell him to stop it?"
D. "Can't he see that what he thinks is wrong?"
E. "If what he's seeing isn't real then how come you can't just explain that to him and those things will stop happening?"

and my most favorite of all:

F. "Well, he LOOKS FINE and/or he's SO EASYGOING AND ALWAYS HAS A SMILE ON HIS FACE"

and then they write him off. If they stick around long enough to listen to me explain his life and his thinking a little better, they nod, some squirm, and most people's expressions just glaze over. I've even stood by and watched and listened in horror as someone LAUGHED at my son and his delusions!!!! Needless to say, they lost all of my respect but since I have to interact with them I don't ever stop explaining to them a little more about the illness. To be fair, I seem to be getting through a little bit now, but still......he laughed.

Let it be known though that this is the reason I am here. This is the reason I am speaking out. This is the reason I'll never stop talking about it. I have made a difference. There have been many people that have learned from me and from knowing my son and they stand by us and offer support in the ways that they know how. Advocating for schizophrenia awareness is not a lost cause and as long as I'm moving forward I will keep talking and writing and educating. If somehow I get stopped in my tracks, I am a patient woman, I'll wait.

Giving up or giving in is not an option.

Sunday, May 19, 2013

Shhhhhh...

It's quiet here now. The music is playing softly, the windows are open and a breeze is blowing in and my son is on the computer killing tanks and even told me he loved me just a few minutes ago. It's good right now. He's happy, I'm happy, there are no "monsters" in the room with us right now. It can be good. I just want you to know that.

The Closed Window

I woke this morning to find the bathroom window closed. I know I left it open because I was the last one to shower last night and the nights have been cool so I thought it would be nice to keep it open all night to let some of that cool air in to freshen up the room.

I'd left it open but now it's closed.


My son goes to bed well after we do on Saturday nights so I know that it is him that closed it. I know this sounds like no big deal, I know no one really cares about whether a bathroom window is opened or closed. But to me, it's a sign. It's a sign that what's been after my son lately is still after him. What's been after him is still looking in the windows and he needs to close the windows (or curtains) to keep it from looking in. All of those "robust" (the word the doctor used) dosages of medications aren't doing anything but knocking my son out. The other day I took him to his weekly therapy and he sat there and slept through most of it as his therapist and I talked. What was so striking about that session was the short conversation that ensued:

Therapist: "I have a question for you. I know the answer to it because you probably don't even care anymore, you're too tired to worry about this, but do you still feel like you're being followed and watched?"

My son (not lifting his head or opening his eyes): "Yes"

Let me just say this. If I was as sedated as he was, I would not give a crap less about anything...not my household responsibilities, not whether or not my husband had a good day, not whether or not my son was getting a well-rounded meal, none of it. I FLAT OUT WOULD NOT CARE.

So it showed me, that in amongst the world of hard core sedating medications, what lies in the very center of his being (the fact that he feels he's being followed, for one) is still there chipping away at who he is.

It's been a week since he started this medication, they say it works immediately most times but can take up to a week or more. I've been aiming for the medication to work sooner than later and my aim is off...

The bathroom window is still closed.

Saturday, May 18, 2013

Saturday Afternoon

I have finally made it out of my jammies (at 4:15pm) after being buried for hours in college prep stuff (financial aid, registration, various forms to fill out) for my son. There is no way on the earth he could have done this stuff by himself.

That is one thing that I have had to come to terms with concerning this illness and that is that my son won't be able to do the same t
hings people his same age can do when he's wrapped in psychosis and heavy duty meds.

I imagine that for a while I will orchestrate much of his adult life goals.

I have to ponder as I sit here buried in college paperwork, will he make it to college in the fall? I worry now whether he'll make it to graduation from high school or not. I'm fairly certain he'll get his diploma but I wonder if he'll walk in the graduation ceremony. That still remains to be seen.

It's funny how life narrowed down to planning how to get through a day and everything beyond the dawning of the next day is on a wing and a prayer.

One day at a time. Right?

The One With Zero Expectations

I ran into something yesterday that kind of intrigued me. I was explaining this blog to someone and she thought it sounded neat. She asked if people were feeling helped by it and I said that I felt they were. I told her I had gotten a lot of private messages from people who felt they could only share their experiences that way because they felt they couldn't attach themselves to the "dreaded", "dirty" word, schizophrenia (read sarcasm here). She gave me a funny look. At first I thought it was because she was coming from an educated (on schizophrenia) point of view and didn't know why people wouldn't want to be associated with it but as I talked with her a little further what I discovered is that she knew nothing whatsoever about the illness and therefore didn't know why people wouldn't want to be associated with it.

I liked this. How often do you run into somebody who has no education on the illness and therefore no preconceived notions, prejudices, stereotypes or opinions? She obviously hadn't attached an opinion to the word in spite of our lovely media doing its level best to scare the crap out of the public about the dangers that someone who is schizophrenia poses. She was a blank slate!

I couldn't have been happier to take time to fill her in on the illness and its multifaceted quality. She was interested and asked questions and when the conversation was over I felt I had brought the world one person closer to a better understanding (of) schizophrenia.

Friday, May 17, 2013

Gratitude

If there is one thing I've learned in the last year, that is to never take anything for granted.

Not one moment--either good or bad 

Not one person--no matter how small a part they play in your life

Not one experience--whether it lifts you or drowns you
Not one gift--and they aren't always wrapped in pretty paper, some come disguised as pain.

Because what I have discovered, even in the center of a dark moment, there is light. Sometimes you just have to turn around or open your eyes or simply look up.

There is always something to be grateful for.

504 Update (My son's amazing school counseling staff)

I just got back from a meeting at my son's school. I had dropped my son at school after he slept all morning and I made an impromptu stop at the counseling office. I arrived unannounced and within a few minutes a small meeting was assembled with myself, the school counselor and the district 504 coordinator. In the 20 or so minutes I was there we got an email out to the teachers about my son's situation, a tentative plan for his school work for the remainder of the year and both the counselor and the coordinator agreed they would personally touch base with a lot of the teachers to follow up on the plans. I feel such gratitude towards these two people who dropped everything (just sitting there in the waiting area I got a sense of the chaos of their jobs) to spent 20+ minutes out of their day with me for my son. Graduation day is on the horizon and I couldn't be getting my son there without the help of these two people.

(Thank you to Neil and Leslie. You two are amazing)

Thursday, May 16, 2013

"Brace yourself Melanie"

Let me just start by saying that I have heard those 3 words come out of more doctors mouths in the last year than I ever thought I'd ever hear.

Ever.

Yesterday, though, I heard it again and it was attached to my son's illness for the 3rd time.

My son struggles from a pretty heavy case of paranoia. I try to keep the details of the content of it off the blog out of respect for him but it's there and rampant. We saw the doctor on Tuesday and spoke with him about the meds for my son and how they're not working and he changed them yet again. I know this is par for the course and to be expected. After explaining the content of my son's latest delusion, the doctor looked at my son and I'll never forget the look on his face. I have been in a lot of therapy over the course of my life so I speak from experience, I have never seen such concern on the face of a psych doctor in my life. He looked at my son and he asked him:


"This is real for you isn't it?"

and my son answered an unequivocal "yes" with a straight face and flat affect. The questions that followed further solidified the extent of my son's reality and his doctor and I were left speechless.

So my son got a new medication and we walked out the door. Then yesterday my son was struggling pretty bad and agreed to go into the hospital. All of that I explained in yesterday's post. What I didn't say was what the doctor told me when he called me back about the hospitalization. I explained further to the doctor my son's fears and gave names and folklore and other pertinent information so that his doctor could research it himself and then it came:

"Melanie......................(long silence) you need to brace yourself. You need to know this. It is possible, worst case scenario, that we may not be able to pull your son out of this. This may be how he will have to live the rest of his life."

Suddenly I couldn't breathe anymore. No mom, no loved one, n-o-b-o-d-y wants to hear that come out of a doctor's mouth when it's attached to this illness. Make no mistake, I know that this illness doesn't always have the best prognosis but there is always hope, right? RIGHT? It is all I've had to cling to since my son was officially diagnosed but nobody's had the courage to put my WORST FEARS right smack in the center of a brightly burning spotlight like this. It kind of sucks the air from the room (or my car in this case).

You know, I am not stupid, I know the realities of this illness but hearing this put so bluntly, when all I'm clinging to lately is a thin thread, was difficult to hear. After the conversation (which contained all sorts of not-so-good news) I got out of my car and went inside and gave my son a hug holding back tears of grief, fear, anger (at schizophrenia) and willed to my son a pure white light of love for him who suffers from this nasty illness.

This is schizophrenia. This is the life of someone loving someone living with schizophrenia. It's not pretty, it's not easy to hear about (or live with), but it's reality and sharing it with you all gives me hope that more people will become better educated and want to help someone they love or know who has the illness.

Wednesday, May 15, 2013

Wait. What?

My son was given a new medication yesterday and put on a pretty high dose and he went to school but came home early because he was falling asleep in class. He slept here for an hour or so and then woke up and went back to school. He graduates this year and is terrified he won't graduate if he misses school because of sleeping. Thankfully the school is working with me but convincing my son that he'll graduate even if he sleeps off his medication for a day here and there, is a real trick. So I returned him to school looking and acting like a walking zombie.

The high point and low point of my day happened in the space of about 2 hours. Let me explain.

My son told me, as I was taking him back to school today after his nap, that he felt he needed to go into the hospital. As a worried mom who's seeing a lot of concerning things, I couldn't have heard better news come from my son. I dropped him at school, left a message for the counselor to call me and sat in the (yet another) parking lot and made calls to all of the professionals in my son's life that are able to orchestrate his hospitalization. I left messages with everyone (does nobody answer a call anymore besides me?!?!?) and waited.

While I waited at home, my son came home from school and we sat and talked about how he's been feeling and I asked him how he felt about going into the hospital. This was received with a big "HUH?" from him. It was as if the conversation earlier had never happened. I reminded him that he had said earlier (not 2 hours before) that he wanted to go in the hospital and he had zero recollection of having said that. I'll blame the brand new, heavily sedating medication. We talked some more about everything and he said he wanted to go into the hospital but he wasn't going to go because he didn't want to be "cut off from the outside world" a.k.a. his social life.

Wait. What?!?!?

So...let me get this straight. He really feels he needs to go into the hospital but he's not going to go because he'd miss his friends. Ok, fair enough, he is 18 after all and 2 weeks from graduation but I've now made emergency calls to the "powers that be" about hospitalization. Now what?

No sooner did I finish that conversation with my son than the calls came rolling in from the doctors. Let's just say I did a lot of talking, a lot of apologizing, a lot of explaining and a lot of saying goodbye to doctors with trepidation. He is 18. Unless he's a harm to himself or others, he is free to stay out of the hospital and I have to honor that.

So, tonight I'm back waiting, and watching him continue to sink ever-so-slowly into psychosis, and protecting him when I can, and ultimately hoping and praying that what has been already spiraling downwards for weeks now will slow its descent and that the (yet another) new medication will work this time.

Tuesday, May 14, 2013

The parking lot

..and sometimes we sit in the pharmacy parking lot having just picked up yet another prescription after having just come from the doctor's office where the horrors of this illness were cast out into the light where all we can do is stare it boldly in the eyes...

...sometimes we sit here in the pharmacy parking lot and watch, lonely and alone, as the world passes happily by our car...

...sometimes we sit here in this pharmacy parking lot and we cry quiet tears of despair for our loved one waiting at home who's suffers so terribly much more than we can even comprehend.

Now what do I do?

I ran into an interesting problem yesterday. It should have been something I was prepared for but it had never crossed my mind. I went to the pharmacy to pick up my sons medications and as they huddled behind the counter and had a discussion, I couldn't help but wonder what was going on.

When the technician came out, she announced to me that they had switched manufacturers of t
his medication and that I should know that the pill might look different. Normally for myself when this happens I don't think anything of it because I know that happens from time to time but this time I was stopped in my tracks. The reason being, that my son already isn't a fan of taking medications, he suffers from paranoia and those two things coupled with the nosebleed debacle lately were not going to lend support to having a pill change it's shape or color.

The thing is? This is really nothing to me, if it's about me, but since it was about him there were suddenly a hundred thoughts swirling in my head not the least of which were:


"Now what?
What if he doesn't want to take it?
What if he fights me?
What if he absolutely refuses to take it?
What if this unleashes a new tornado of delusions?"

These were all fair questions to ask myself and prepare myself for the answers, whatever they ended up being. I explained to the technician that my son has schizophrenia and that the change in meds might not be received well and I asked her if I could see the pill. What I was going to do with that information eluded me since really, it was out of my control either way, but I was relieved to see that the new pill was still white, still round and only a tiny bit larger than is predecessor.

So, yet again, another crisis averted.

I write this entry though because I want to illustrate how a seemingly normal, everyday occurrence is fraught with questions and worries and the dreaded explanation to a generally uninformed person about what the ramifications are for a seemingly simple change. Sometimes a day will be filled with these uncertainties. Some days when you just want a "normal" day, the schizophrenia sneaks up in some form and reminds you that things are not as they seem and most certainly will never be the same again.

Sunday, May 12, 2013

My Mother's Day

What a day it's been! In the interest of keeping it real for you all, I thought I'd let you know that my son announced to me (rather angrily I might add) that he's going off all of his medications. He's had nosebleeds every morning for a few days and this morning he began blaming them on his meds.

Luckily when I was going through his medications and reading about side effects and just generally freaking out, I remembered that I had started giving him an extra strength omega-3 softgel every day for a week now. The reason remembering this was important is because he's always had nosebleeds on and off his whole life...in fact I've never known another person in my life that has them like he does. I remembered what I had been told by my own doctor and that is that omega-3's have a blood thinning quality to them and since he's prone to nosebleeds then they will make them even more likely to happen.

So, crisis averted. When I told him what I had learned about the omega-3's and that I was going to take him off of them, he was fine again.

I think.

I am fully aware of the tenuous nature of this illness. I know I'll have conversations with him like I did the other night (and subsequently posted for you guys) where he'll want to take his medications and then not even a day later (or even an hour later) that will change. All I can do is have hope and say prayers that he'll agree to do whatever it is that we decide is best for his health but if he changes his mind, then so be it.

We cross each bridge as we come to them. Either way...whether he's walking beside me or in front or behind, we're on the bridge together.

Saturday, May 11, 2013

A Conversation With My Son

Last night, after thinking about everything, I decided to take a moment to give my son a voice in case I had let my own emotions take over things. His medication appointment is coming up in a couple of days and I was curious where he stood on the whole issue. The following is the conversation we had:

Me: "Do you feel like you need your meds?"


 Him: "Yes."

 Me: "Do you want to keep taking them?"

 Him: "Yes, I need them."

 Me: "Do you feel like they're helping you?"

 Him: "No, I don't feel like anything is changing."

 Me: "Well, we'll talk to ____ (meds mgr.) on Tuesday and see what he can come up with."

 Him: "O.K."

 Me: "How would you feel if he added more meds?"

 Him: "I would be ok with that because what I'm on right now isn't working."

I can see with the recent turn in his schizophrenia in the last few days that even he wants to not feel scared and terrorized anymore. It wasn't too long ago that he was telling me he didn't want to change anything about his thinking and now after a talk about everything last night (beyond the meds conversation) it is evident that he's ready for change. This is such a good thing for him because deciding he doesn't want to live like this anymore is a step towards better mental health for him.



Friday, May 10, 2013

The great debate

As in all things having to do with schizophrenia, people are going to have their opinions. I am expressing mine here today and I will not be swayed from my thinking. Here's why:

In the mental health community and amongst people suffering from schizophrenia there is a feeling that medications are not the best option for treating schizophrenia. I do not currently agree with this way of thinking. Let m
e explain.

Right now, right this very moment, my son is fighting his way through psychosis. He's struggling, he's fighting, and he's failing miserably. His valiant efforts are both admirable but more so, heartbreaking. He has put in his time in therapy and together with his therapist and with mine and his pdoc's (the doctor--or in this case, psychiatric nurse practitioner) input we have tried to alleviate the symptoms (fears, delusions, hallucinations, depression). I have spent time with him trying to reason through what haunts him but when delusions take over he sees only what he sees, believes only what he believes and my words fall on deaf ears. I can make changes in his surrounding environment here at home to try to help but those changes are a drop in the big empty bottomless bucket that is schizophrenia.

He's on very little medication--compared to what is generally used to treat schizophrenia--and what he is on is definitely not working. And so one might ask me:


"Would you consider more medication or can he just learn to have a "relationship with the illness" or can it be treated more naturally?"

Right now, today, I would say...no, I would shout from the rooftops a resounding hell yes, I'll consider more medication. The time for talking, for building relationships with the illness, for trying to track down the (in my opinion) controversial "natural remedies", is long gone.

Think of where things are at with him as a kayak headed down a rocky river towards a waterfall. For weeks now he has sped down the river bumping against boulders, capsizing at times and righting himself but still continuing down the river. But ahead there is a big cloud of mist billowing high into the air, coming from the bottom of a gigantic waterfall. There are no more shallows in which to exit the kayak and stand on the shore and there are no more overhanging branches to grab hold of for a rest. The waterfall is ahead and he's about to go over the edge.

So yes, I choose medication at this point. Nothing is helping, it hasn't for weeks and I have nowhere left to turn. My son is getting tired of paddling for his life, I have little to offer him outside of my love and hugs and words of support, when they can get past the armor of delusions. I see the mist, I hear the roar of the thousands of gallons of water hitting the rocks below and I choose medication. For him...to save his psyche and preserve his very existence on this earth.

Thursday, May 09, 2013

"Did I really want to know that?!?!?"

I signed releases a few weeks ago so that my son's doctors and I could talk. It's crucial to have those releases and despite what I'm about to say, I think it needs to be done. But what do you do with the information once you have it?

I learned today that there is a place my son is in now inside his mind that I didn't know was there. I learned about it and h
ave since done what I could to remedy the situation though what I'm doing is merely putting my finger where the leak is in the dam. While I'm frantically holding back the inevitable onslaught of psychosis, I am now privy to some disturbing information about my son's thoughts and fears for his own life and the lives of his family and friends that I now cannot unhear and I am almost completely powerless to change.

So, a tiny part of me asks: "did I really want to know that?" Having knowledge of a piece of the labyrinth is enlightening (to say the least) but it's also frightening. If I can't go in there and lead him back to the top, then what?

In the end though, yes, I do want to know. I do. I'm scared of what I've learned so far but he's TERRIFIED because he LIVES it every day. He and I are in this together. I'm not going to leave him in there alone, I'll be waiting here when he comes out.

When I see you smile

Yesterday when my son came crashing in the front door, said a bright, cheery hello, grabbed a sugar cookie and his laptop and went downstairs, I couldn't have been happier in that moment. When he came upstairs later and asked me for a hug and told me how much he loved me, I thought I had died and gone to heaven.

You see, for weeks he has avoided the basement after school (
I have pondered what was down there--in his head--that was scaring him) and instead he has chosen to sit upstairs in the same room as me. I couldn't have paid him to go downstairs. For most of the last weeks, and was at it's worst in the last couple weeks, he's been in a depressed, sullen, angry mood. As he sank further into the abyss, I found myself joining him.

Make no mistake though, I haven't showed him that because I feel like one of us has to hold the light in the darkness that is enveloping us. Then yesterday afternoon he came home with a light of his own--a beaming smile--and all was right with the world.

As the song says:


"When I see you smile, I can face the world."

I can now face my day today. I am recharged and charging forward yet again. His smile is gone this morning for reasons I may never get to know, but because of that "crashing in the door, smiling, sugar cookie eating, disappearing into the basement" kid, I have a brightened lantern with which to light the way into this day for the both of us.

Wednesday, May 08, 2013

Haunted

As I have driven around my town today I have seen a couple different young men on the streets who were in varying states of uncleanliness and engagement with the world (one was talking to himself and one looked lost in his own world) and I think to myself:
"will this be my son in 5 years?"

These young men haunt me and in doing so remind me that what's ahead isn't always going to be easy for my son or for myself. My hope is that the course of schizophrenia in my son won't be so cruel but the reality is, it already has been.

And so I am forever haunted.

Denial

I have to admit that a portion of my time since my son has been diagnosed has been spent in denial. Really, even before he was diagnosed and I was seeing clues, I would go there. There is something ethereal about being faced with someone who isn't existing in reality. I can't tell you how many times I have shaken my head and asked myself:

"Did I just see/hear him do/say that?"

Sometimes what you see or hear is so subtle that it's easy to write off because it's something just left of center. Schizophrenia and psychosis can be a sneaky illness shaking the observer awake out of a slumber of denial only to be lulled back to sleep by the moments in between. But it slowly devours the sufferer. My experience has been that when I find myself jolted into reality from "denial land", then the psychosis has taken over my son and he's in a place where he needs help quickly.

It does not serve me well to deny this anymore and I have acknowledged the diagnosis but there is so much to the process of going from life before schizophrenia to life after the diagnosis. Acceptance and grieving are a process and recognizing the signs much earlier are imperative. These things will take time and sadly since this is a lifelong illness, both myself and my son have a long time to settle in.

Tuesday, May 07, 2013

Questioning my son

Stress is a trigger for schizophrenic symptoms.

I thought back to yesterday about how he woke from his 15 hour slumber and began enthusiastically setting up his account for all things college and in his inbox he found several emails about every facet of college life from registration to financial aid to tax forms to...well, you name it. He was instantly frozen in place. I asked him to click on one concerning financial aid and it was like talking to a wall. He didn't move a muscle. It was then that I was reminded of one of the critical facets of schizophrenia and that is to limit all "incoming info" (like questions, instructions, emails, input in any form).

So, as a part of the ever changing settling into and accepting of the limitations of the illness, I had to take over managing his college alerts. This is not to say that he is unable to do the things that we all can do, it just means that tackling the stack of emails and sorting out what's important and what isn't should be done really, probably one piece, one day, or one week at a time. I'll get him set up with what he needs to be a thriving college student and absorb the extras to limit his stress levels.

Success in life as someone with schizophrenia is hard fought and is a family/team effort but together and with patience, it can be accomplished.

Sedated

My son woke today and while he was still pretty sedated, he wanted to make an attempt at school. His tenacity is admirable, in my opinion, because it's what keeps him getting up and moving forward in the face of things that might take the rest of us down. When I discovered last Fall how far into the fabric of my son's being that his illness reached, I couldn't help but be in awe of the strength it must have taken him to get through his life for the years before we discovered the illness's reach.

As for myself and my feelings this morning, I am happy to see him up and starting his day. Yesterday was pretty tough to take and was an indication of what it means to have the illness. The reality is, sometimes the meds are going to knock him out cold and I'll sit here in my quiet house waiting for him to wake so I can see what has changed in him....if anything.


That's the thing...I'll forever wait for a change, I'll probably never stop expecting it but my understanding of this illness is that the change may not always be for the better. And so I pray and I hope and I hold my breath.

Monday, May 06, 2013

504 Update

I spoke with the school counselor just now and he told me that the school will wait with me and see how the next couple days go for my son. He said they will gather homework and work with us. I told him I had received a letter from the principal after my son had missed several days last year because of his illness and hospitalizations and that the letter said he wouldn't graduate if he missed any more days and the counselor assured me they are "well aware of the situation with my son" and I am to ignore those letters.

In addition (and the most beautiful part of my day today), one of his teachers, upon receipt of the email explaining my son's absence from school today, came straight to the counselor to express concern for my son. She is to be commended as are other teachers that have stepped up in the past for my son.

This is the
504 in action  and I wouldn't trade it for the world.

Sunday, May 05, 2013

Support System

There is much to be said about a good support system when you have schizophrenia. My son is 18 and still in high school and if we were to operate on what we see on TV, then the youth of today quite possibly could be unkind to a someone with such a difficult to manage illness. In my son's case though, he has the most beautiful, caring, patient core group of 3-4 friends that love him and are willing to help him reality test by answering his questions (did you hear that voice? Or see that thing?). They do it with patience and caring and have never made fun of him--even coming to his rescue when someone was being a jerk to him and they made that person cease and desist for good. These core, solid friends have stuck with him even with his diagnosis of paranoid schizophrenia and together they can laugh and joke sometimes about the crazy things that happen.

My son has a tendency to isolate which is a feature of the illness but I believe what keeps him conquering the real world every day and going to school is knowing that his friends will be there waiting for him, an hour before school starts, to play Magic the card game.



(My Facebook Page On Schizophrenia)

Friday, May 03, 2013

From My Point Of View

I want to say something about delusions from my point of view, from the outside looking in and based on my experience.

So far what I have seen is that they are rooted in anxiety. The last 2 or 3 that I have run up against very clearly were solidly planted in the middle of anxious thoughts and experience. As a p
arent trying to help her young adult son, it's not easy to catch the moments of anxiety in order to slow or even stop the delusion creation but when I do it is a triumph because I know he'll be saved from a lifetime of paranoia and worry and isolation.

Last night as I worked with Thomas and his delusion, I wasn't as successful as I would like to be but what I didn't say and want to emphasize now is that I caught one a couple weeks ago that had been well-entrenched for months and was able to stop that one.

-----------------------------------

NOTE: THIS IS NOT A HOPELESS ILLNESS. AS IN ALL THINGS, THERE ARE GOOD TIMES AND BAD TIMES AND YES IT WON'T ALWAYS BE EASY BUT IF YOU LOVE OR CARE ABOUT YOUR PERSON FIGHTING SCHIZOPHRENIA AND AS SUCH YOU REMAIN IN THE FIGHT WITH THEM AND LOVE THEM DURING AND THROUGH THEIR ROUGH PATCHES IT IS REWARDING BEYOND MEASURE.


Thursday, May 02, 2013

I Am Not An Expert

I am not an expert, I am a mom with a son with paranoid schizophrenia. I am here sharing my life with you all in the hopes that you won't feel so alone in your circumstances. My reason to write tonight is to say that I have watched the creation of a delusion today and have tried to help my son see things a little differently so that things won't be so hard for him in the place he is now building for himself. This isn't easy...not for me and most certainly and as far as I'm concerned most importantly, for him. From inside his world the view is so limited, my wish is that he could see all of the possibilities that lie before him.

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