Thursday, October 30, 2014

Anxious Birthday Lunch

Yesterday was rough here in the "Thomas household". We decided to have an early birthday dinner together as a family since my sister is here. Thomas didn't want to have it because he worked last night and his fear and anxiety told him that he wouldn't make it to work on time. We rescheduled the dinner from 3pm to 2pm and then finally to 1pm to accommodate his ...growing anxiety. Once the time was settled on, he was settled on it but came to me wide-eyed and over the top anxious anyway and I felt terrible for him. I'm not sure all of what was going on was just being late for dinner. He also started the new meds combination yesterday and I suppose my telling him to watch for any changes probably made him nervous too. He's so sensitive to everything and my insistence that he stay on top of his feelings and side effects might have caused him more anxiety than it should have. I felt bad but I wanted to be sure that if things got worse he would tell me without hesitation.

As we waited to leave for lunch his anxiety got worse and worse and he finally came to me and said he took a lorazepam. That is now 4 in 7 days. Not good. His everyday anti-anxiety buspar isn't even touching his anxiety anymore. I went in and sat on his bed and talked to him and he had THAT LOOK in his eyes where he appears that he isn't present in his body and he's not listening to me. I held his hand and talked to him about his anxiety and tried to calm him down by explaining that lunch would only take an hour and then he'd be back by two, leaving him 3 hours before work. It didn't work.

We left the house and went downtown and, of course, there was no parking anywhere near the restaurant. With each block we circled he became visibly more anxious, I'm sure, certain we were never going to find parking. When we were finally standing out in front of the restaurant he was dying to go inside and sit down but I wanted to wait for my mom and sister to find parking and meet us. Finally Thomas couldn't take the anxiety of waiting anymore and he headed into the restaurant alone. Dan and I immediately followed. We sat down and waited and looked at our menus. Thomas quickly settled on a bacon cheese burger and was anxious about my indecision and preoccupation with finding my mom and sister. I could tell he just wanted us to order and be done with it.

Finally my mom and sister arrived and sat down and we ordered. I watched Thomas's anxiety go down as we did and I was thankful for that. The food came and we all started eating and then Thomas verbalized to all of us that his fry sauce was good. This prompted my mom to keep reaching over and dipping her fries in his sauce. I watched him watch her doing that and I knew she was making him crazy. I know he has a "thing" about germs and I think he was worried my mom was ruining his fry sauce. Poor kid.

When the meal was over the waitress asked if we wanted dessert and my mom piped up rather loudly so that others in the restaurant could hear that it was Thomas's birthday and I looked straight at Thomas who now suddenly had to be afraid of being singled out and sung to by the staff of the restaurant. I reach across the table to hold his hands and wait for the onslaught.

It never came.

Thank God.

Instead a big slice of dark chocolate cake came out and was set in front of him and the waitress wished him a happy birthday.

As we walked from the restaurant I could see that Thomas's anxiety was lower and I knew it was because we were finally done eating and headed home. At home I asked him how he was feeling and he smiled and said he only had a little anxiety left. So we had succeeded in getting in a pre-birthday lunch.

Before work the anxiety returned but he didn't take another lorazepam hoping, instead, that what he had taken would be enough. It seemed to be and he got out of the car at work and went inside seemingly okay.

It was an extremely rocky day for Thomas and I felt horrible for him. I wish I could figure out the source of his newly worsening anxiety. He felt it long before we were going to tweak meds so it's something independent of that but for the life of me I just can't figure it out. Hopefully the change in his antidepressants will somehow help that.

We will see.

(Side note: Thomas's 20th birthday will be on Saturday so we will celebrate it here on the blog/page on that day. He's a bit in shock he'll be 20. It must be hard to turn 20 and know that you aren't in the place in your life that other 20 year olds are. I'm trying to play that down and just keep him happy about his upcoming birthday.)

Wednesday, October 29, 2014

I Wanted To Be Wrong

After writing the last couple of days about what Thomas's symptoms were, a part of me wanted to pretend that what he and I had talked about wasn't true. Perhaps I had misheard, perhaps I pushed him to say things that weren't true for him, perhaps he misunderstood my questions and perhaps, maybe, in the face of scrutiny by his doctor that he would deny that he was having any issues. Well, I was wrong. My magical thinking, which is very maladaptive, I know, didn't work and I got hit right between the eyes with the truth yesterday in Thomas's appointment with Dr. N.

I began our afternoon by giving Thomas my notes that I had written for Dr. N. detailing what Thomas had told me on Saturday. I wanted him to look them over and let me know if he took issue with anything I had written. He rode beside me in the car and read, out loud, everything I had written there. There was no denial from him about anything I had written and he handed it back to me. My only thought at that point was, "good, okay, so I'm not misrepresenting what he had told me." It was all fine and dandy with that little green paper with the notes, I wrote them and had them read back to me apparently still in denial and we drove the rest of the way up to Dr. N.'s.

When Dr. N. came out to grab Thomas for his appointment I asked him if I could come in at some point. He agreed and then he and Thomas disappeared. I sat there absentmindedly doing things on my phone while I waited to be called back. Within a half an hour I was invited back and I sat down and listened to Dr. N. talk about his plans. I did interrupt at one point and began asking Thomas if he had told his doctor, first, about the "energy" he had been feeling. He had said something and Dr. N.'s solution was to reduce the Latuda because it could have been the culprit. I get this thinking but I wasn't sure that the Latuda was really causing it since he had been on it a while and was only now having that issue. I shifted in my chair, looked at my list of psychosis symptoms and wanted to protest the reduction of that particular med. Instead I asked Thomas if he had told Dr. N. about the auditory hallucinations.

He had.

The conversation shifted to his anti-depressant, Cymbalta, and Dr. N. said Thomas expressed that his depression was back and wanted to increase the Cymbalta. THAT I was on board with. Still, though, I wanted to know if Thomas had told Dr. N. everything. I brought up the body "possession" (again, my word not his) thing and Dr. N. seemed to finally be registering that Thomas was doing worse than he thought. He asked me then how I felt about decreasing the Latuda. Finally I could say what I wanted to say:

"With Thomas experiencing the symptoms he's having it seems to me it would be foolish to DECREASE the ANTIPSYCHOTIC since he was slipping into psychosis."

Helloooooo Dr. N., wouldn't you agree?

He heard me, thank God, and decided instead to take away the Wellbutrin since that has been known to cause paranoia in people living with schizophrenia. That's all fine and dandy but again, Thomas has been on that for years and been through several psychotic cycles and no one even touched that med. But okay, let's take that out and give it a try. Still not my personal choice but I agreed with the plan. Dr. N. had a little bit of a point because supposedly the Cymbalta would pick up where the Wellbutrin leaves off.

In theory.

You see, there hasn't been one single antidepressant that I, personally, have been pulled off of cold turkey that I didn't have some kind of withdrawal symptoms. Some were even nasty and made me actually worse for a while as I scratched and clawed my way off the drug. Cymbalta and Wellbutrin are completely different compounds so I don't think removing the Wellbutrin will be without it's own consequences. Dr. N. insisted there would be no problems whatsoever and I just shook my head having heard that from several psychiatrists myself that was true when in fact it wasn't. I figured, though, that I would just prepare myself to clean up that mess.

Then I asked Thomas if he had told Dr. N. about the auditory hallucinations. He had but Dr. N. decided to investigate that further. He asked Thomas if HE thought they were just ambient noises and he asked if Thomas had investigated them. Thomas, at the time since he was at work, had not been able to. So Dr. N. asked him,

"If you had to guess, what do you think the sounds were?"

This is where the knot in my stomach tightened as Thomas said,

"I would say they were hallucinations."

There it was. Right out there in the middle of the room for me to really, truly, finally process it. No more denial for me, no more hoping I had heard him wrong on Saturday, no more magical thinking, he was directly stating, in his own words, that they were in fact hallucinations.

I felt sick.

So, there it all was, out there for everyone to take in, Thomas is, in fact, becoming (or is?) psychotic. I wanted so desperately to be wrong. I wanted to rewind the whole session, rewind everything back to last Friday and just forget it all.

That was not to be.

So here is where we stand. Thomas will stop the Wellbutrin today, he will double the Cymbalta and he will remain on both the Latuda at it's original dose and the clozaril. At least we're keeping the antipsychotics. We also have an appointment in less than 2 weeks with Dr. N. to reassess. At least we won't have too wait long.

All in all, the appointment went well, at least as well as it could given I'm not the doctor here and Dr. N. had a plan so we'll go with it and I'll just pray that the cold turkey removal of the Wellbutrin won't have any effect on Thomas. As we drove away from the hospital, I told Thomas to be sure to tell me anything he feels that is out of the ordinary. He promised he would.

Thomas works tonight. We'll see how the day and the night go with this new plan in effect. His working will definitely put it to the test. Let's hope my experiences with antidepressants were an anomaly of mine alone and that Thomas will handle it like a pro.

Tuesday, October 28, 2014

Leaving It In Dr. N.'s Capable Hands

I find myself teary-eyed today and unsure of why. The thing is, yesterday, Thomas was on a major high, all smiles and positive energy and excited about his new plan to save for a gaming laptop. He was my "Seattle guy" again and it was wonderful. Contrasting that, though, is this appointment today with Dr. N. Today means that I tell him about the things that I found out about Thomas on Saturday--thank you all for your encouragement to do so--and I'm

not.....

thrilled....

I say that only because, and I have written about this before, I feel like, in a weird way, I am selling Thomas out. I know this is skewed thinking considering the illness he has and how important it is to report symptoms so that they can be caught early and treated but it's the "treated" part of it that gets to me. I hate that treatment means an increase in meds and following that an increase in side effects. It's those side effects that take both Thomas and I down. He's miserable and I am miserable for him...and for myself...only because I HATE seeing him passed out on the couch or bleary-eyed at 7pm and telling me he's going to bed, 3 hours earlier than normal and then not waking up till after noon. I feel solely responsible for those results of my telling the doctor about the things that I learn about what's going on inside Thomas. It's a huge weight to carry especially for a mom whose sole goal for her baby boy years and years ago was to make sure he would always be happy all of his life. A medicated Thomas is not a happy Thomas.

Coupled with what I told you yesterday about what symptoms have emerged, there is also a new one. All of his delusions about the government had gone away (at least that is what he says) and I always wondered what would take it's place, because surely schizophrenia is cooking up something new to take the place of the eradicated delusions. As it turns out what's taken it's place is a mysterious (to us) phenomenon of body possession. It began with me asking Thomas if he ever felt that someone had taken over MY body, like I LOOKED like me but he believed someone else is occupying my body. He was amused by this question, thank God, and told me that had never happened. Then I thought about his past delusion of believing he is reincarnated as a long dead revolutionary, that had disappeared according to him, and I asked him, then, if he felt HE had been taken over by something or someone. He confirmed that had indeed happened a couple of times and I reluctantly, afraid of the answer, asked him if it had ever scared him.

Yes it did.

He couldn't say who or what had taken him over but whoever or whatever it was, it scared him and that is what is important here. I don't want him feeling "possessed" (my word, not his) and even more so I don't want him scared. He doesn't need that. Of course this is a huge red flag and it worries me so I will report it today.

The other thing he's now dealing with again is auditory hallucinations. These are of the more "innocent" type, thank God, but I know the track these take. They start out innocent and turn annoying or nasty and then full-blown psychosis is in place. He says when he was at work a few times and he was "hearing things". What those things are he said he "couldn't describe" and in my efforts to help him I asked them if they were ambient noises like clocks ticking or cars driving by and he said, "kind of", but did not accept that as a description. They were just impossible to describe.

Great.

So we all know what that means.

The monsters are coming.

So you see, I have to report this stuff but you also know what follows these sorts of revelations. Bumps up in meds and an increase in side effects. What is the alternative though? The "possession" turns out to be a monster, the sounds turn into scary, nasty voices and sounds, and the fears about me being kidnapped soar to insurmountable proportions where I can't leave him alone at all.

Today we see Dr. N. and today Thomas's life changes yet again. I wish I felt better about this. I wish I could hold on to the thought that I am HELPING him not HURTING him but discerning what is the lesser of the two evils, especially since the symptoms right now are low level (?), is the trick. And so I will leave it all in the capable hands of Dr. N. and await his plan for Thomas.

Monday, October 27, 2014

The Leaves Are Falling, The Season's Here

I took a long walk with Thomas on Saturday. Because I didn't go on the trip to Spokane, which now I'm glad I didn't, I got a chance to spend some quality time with Thomas and to give him a day of calm where I was around him all day. I took the walk as an opportunity to talk to him about what he's been dealing with lately with me being gone most of the day for a few days. The saying, "still waters run deep" was never more true than that day as I began to learn more about what's going on inside Thomas's mind lately.

First we talked about how he'd been feeling about me being gone so much. I asked him if it caused him anxiety and he said, "maybe". Then I asked him what he goes through while I'm gone and he says that he has a lot of energy and he "has to get out of the house", hence the needing to go with me to the places I was going with my sister. This energy thing is so familiar and it has gone by other names in the past, one mainly being that he feels like a caged animal and has to pace. Oh how I remember those times well and here they are again. Except now they're called energy. After talking with him a bit I realized that his "energy" sounds a lot like anxiety and I told him that I felt that was the case. He seemed to accept that. Then we delved further into the why's of him having energy and it turns out that he's afraid something is going to happen to me while I'm out. I asked him to explain it to me a little more and he said that he felt like I might get hurt or I might not come home. Both of these themes were, again, familiar as they had been a feature of his paranoia this time last year. It turns out that he thinks I am going to be kidnapped and that I won't come home to him. Kidnapped...so from energy to kidnapped I felt like we'd crossed from anxiety territory into a bit of paranoia territory.

Terrific.

It's back.

So I asked him about his old familiar "friends", the ones that watch and follow him and he said that he was feeling that way again.

Again.

I asked him then, had those feelings ever gone away and he said that they did for a while. Now, however, they are a 2 out of 10 which is not to bad but it's not a zero out of 10 which is what it was just weeks ago.

I'm not thrilled about this and I'm torn. Do I bring these things up to Dr. N. or Dr. K. (or both)? I'm not even taking his meds but I am just not ready for him to increase his meds. He hates being sedated and I hate him being sedated. On the flip side though, if something isn't tweaked then this stuff is going to get worse. Already at a 2 we are headed up the scale to the danger zone and I just don't want him to suffer in that way.

At any rate there was much more to this walk and our talk that I will share tomorrow but you can see that things are changing for him. In just the past 7 days he has taken his lorazepam three times before work which is a HUGE spike for him. All of these signs that have showed up in front of me lately mean that we are right on schedule for a breakdown. I said Fall/Winter was his time to fall apart and I'm looking outside right now, the leaves are yellow, orange and red and many are on the ground which means Fall is here. I'm bracing myself--yet again--and all I can do is pray that this year things will be better than in years past.

One can hope, right?

Saturday, October 25, 2014

Held Hostage??

Something has happened in the last few days that I don't know quite what to think about it. I'm not sure exactly what to pin it on so it's mysterious to me and difficult to solve. Let me start with this.

My sister arrived on Wednesday. I am very happy about that. Even happier about it is Thomas. He LOVES his aunt more than anything and he has her on the tallest of pedestals. My sister is one of those big personalities that people are drawn to. She's talkative, compassionate, she dresses beautifully every day and she carries herself as if she is royalty. She is truly beautiful both inside and out and her light shines on us all, especially Thomas.

Prior to her visit Thomas was kind of starting to struggle a little bit. Anxieties were cropping up again and I was worried about where this was leading. Then my sister arrived and I suddenly wasn't around the house with Thomas for 3 days during the day. On Wednesday he had to work and even though I got home in enough time to get him dinner, sit and watch a show with him and get him to work on time, he was riddled with a level 5 anxiety. I had asked him if he felt his anxiety was because I wasn't home and he had said, "maybe". I tied it all to the fact that he had to work that night so I let it go.

Then on Thursday I was once again gone from the house for the better part of the afternoon. I checked in with him by text but I could tell something was wrong. Finally he responded that he was "full of energy" and "needed to get out of the house" and since I was involved in "girl talk" with my sister and my mom, I told him that I wouldn't be home for a couple more hours but I tried to help him troubleshoot things to do to alleviate his energy. Nothing worked and I ended up coming home early.

Then yesterday came along and I was home with him to make him his favorite smoothie and give him a hug (the previous mornings I hadn't been there when he woke up) so I think that helped him a little bit. But then, again, I disappeared over to my mom's house to hang out with my sister. Not long after, I got a text from Thomas and he was asking me if we could go somewhere. I told him that my sister and I were going to look at cosmetics and that I didn't think he'd have any fun with a couple of girls fawning over make up. He reluctantly agreed but I promised him I would take him Halloween candy shopping later. He absolutely BROKE MY HEART because I could tell he was lonely.

The thing is, I have a sneaking suspicion that he wants to be with me because I am with his Aunt who he loves. I think he wants to be a part of everything but the problem is, we are just no fun, not for Thomas anyway.

Now, today, I was invited to go up to Spokane to see my aunt who I haven't seen in years and to do some shopping in the city. It's going to be a wonderful time. Well, it would be, if Thomas didn't work tonight and I didn't need to drive him. I know I could ask Dan to drive him to work but that would entail Thomas waiting in uncertainty for Dan to show up and since he's at work, there would be no guarantee that he would get home at a time that is comfortable enough for Thomas. Leaving Thomas alone all day to worry about getting to work on time and will Dan show up on time or won't he, would be too much for Thomas and I just don't have to heart to put him through that because of the last couple days.

So here I sit, exchanging texts with my mom about what fun they are going to have in Spokane. Without me. I have heard a couple of times in the last few days and I have heard it a lot since Thomas got sick that he holds me hostage. His anxieties and fears make it so that I just don't have the heart to leave him alone. A part of me does feel held hostage to some degree because Thomas's anxiety causes me pain because I want to fix him and so I miss out on doing things in order to be home with him. But am I truly being held hostage? I know Thomas needs to learn to be on his own but every time I try, his world comes to an end and my heart ends up broken.

I guess I am writing this because I want to know what you all think. You have loved ones with schizophrenia and we caregivers are a special population left to alter our lives in some way to accommodate our loved ones. So, the question is, do you think I am being held hostage by Thomas and his anxieties and illness?

Friday, October 24, 2014

Who Would You Choose?

I had forgotten this story until yesterday when I was sharing it with my mom and sister. It happened in therapy last week, fresh off of the Seattle trip.

We were talking about all of the good things that happened in Seattle and it was so much fun to see Thomas light up about all of the things he had done. Then the whole thing took a dark turn. At least in my opinion.

Dr. K. asked Thomas,

"What was the worst/scariest part of the trip?"

I was a bit surprised by the question myself because I thought everything had gone so well and Thomas had seemed so good. But Thomas had an answer,

"I was afraid I was going to be pick pocketed."

I was again surprised but then started thinking back on the trip. Had there been any time where I felt Thomas had anxiety while we were out on the street? Yeah, I suppose so but even I was anxious about being out on the street around all of those strangers. Then the whole conversation took a dark turn as Dr. K. went on to explain something to Thomas. He asked,

"Do you wear a watch?"

"No."

"Do you have any jewelry on at all?"

"No."

"Okay now I want you to look at your mom right now. She is dressed very nicely, looks very well put together. She appears to have a very expensive purse and she looks like she could be carrying quite a bit of money. Thomas, who do you think the pick pocket criminal is going to choose to attack? The kid in regular clothes with no watch or the lady with the nice clothes and purse looking like she's carrying a lot of cash?"

Thomas got kind of quiet and said,

"They'd pick my mom."

"Yes, so you see? You're not in any danger of that happening to you."

So maybe you see no problem in this exchange but let me tell you what happened next.

Apparently, the entire time we were ever out on the street or in crowds, Thomas said he felt he needed to protect me from being pick pocketed. He said he had walked with me the entire time to protect me.

I know.

Beautiful.

I love that young man.

Then it dawned on me something about all of the times we had been out. Thomas had always walked just one step behind me on the side that I carried my purse. He was always behind me and each time I would try to get him to catch up he would always end up back behind me. As a mom with a kid in a strange city, I wanted him with me so I was only focused on keeping my eye on him and instead, he was being a protective son watching out for me.

Then Dr. K. hammered it home about how I would have been the victim of the attack. After hearing how anxious Thomas had been about an attack, after hearing how scared he was for me and how he felt he needed to protect me, it was evident he loves me very much and feels responsible for me. So I had to wonder...

and here is what made me mad....

Why on earth would you tell a seriously anxious kid who loves his mom that she would be the victim?!?!? What purpose did it serve to single me out in such a way when before him sat a scared kid who loves his mom? I was mad, to say the least. I mean, seriously, I already try to protect Thomas from things involving me that he doesn't need planted in that brain of his to make things worse. Now I think,

"How will he ever again feel like I am safe if we are out on the street and I am dressed nicely and carrying a nice purse? Why did Dr. K. use me as an example? Why couldn't he have singled out a stranger on the street, another woman dressed nicely carrying a nice purse? Why did he have to frighten Thomas even more than he was already frightened?"

Needless to say, now whenever we are out, I am going to have to clean up the mess Dr. K. created. Thomas's anxieties run rampant and I know that his fears surrounding my well-being are very entrenched--he used to think the government was going to kidnap me because of his political beliefs. He was always scared when we were out in public that I was going to be pulled off the street into a van and taken from him. Imagine what he felt...the guilt...that his political beliefs threatened MY life. Imagine how scared he was that he could lose his mom forever. So now we make it all worse by making me a victim of a crime on the streets of a city.

So, obviously, I was not happy about that part of the session. I guess it's time for another talk with Dr. K. about how he handles Thomas with certain things. Most importantly, he must never again make me the focus of anything involving a crime or something worse equally scary. Thomas just doesn't need that. Not now. Not ever.

Thursday, October 23, 2014

Why God, Why?

What I am going to write about today isn't something drastic that is happening, it's the same old stuff that I have written about in the past but coming off of that amazing trip to Seattle and seeing Thomas so happy, yesterday just kind of tossed that in the outside trash.

If you go back through my postings over the last year or so you will read the same story. It goes like this: Thomas is really really sick. He gets better. He gets REALLY better. Everyone is happy. Then...then it all falls apart while the good stuff is still fresh in my memory. Well, we're at that place now. Things are falling apart again.

Yesterday was a different day than usual for Thomas and I. For days now I have been here when he wakes up and I have made him a fruit smoothie and then at 12 we have gone for a 2 mile walk. Well, yesterday my sister came to town. Her flight landed at 11:35 which meant I wouldn't be home to make Thomas a smoothie or go for a walk with him. I did set everything up for him, cut him an apple for his breakfast fruit and I left him a note about where I was and that I loved him and that I'd be home in time to take him to work. During the afternoon I texted him and asked him how he was and he said he was okay and we exchanged I love you's. I went about my visit with my sister and then came home at 3:10. What I found when I got home broke my heart.

Out of his room came Thomas with THIS LOOK of fear(?) stress(?) I don't know exactly. He needed a hug really badly and I held him tightly for a long time. I asked him if he was okay and he said,

"No I'm pretty anxious."

I asked him why and he couldn't verbalize why, he just felt it. Then it hit me. I had been gone all afternoon, I had missed our ritual breakfast and walk, I hadn't been in much contact with him. Perhaps that is what affected him? I asked him if his anxiety might be related to that and he said,

"I don't know, it might."

So I left him alone knowing that he had a lot of anxiety and probably didn't need the 3rd degree from me. We went to Dairy Queen and got him his usual meal and as I sat at the window getting ready to pay I pulled out two $5 bills to pay for a $6.36 meal. Not wanting to be given back a bunch of ones I set down one of the fives, put away the other and began digging through my change. You should have seen Thomas squirm and stress as I did this. I picked up on it right away because his "aura" was that of a kid who was FREAKING OUT. So using the 5, 4 quarters and change I sat there with it in my hand waiting to pay. I asked him,

"Are you stressing about the money and how I am choosing to pay for it?"

"Yes," came his reply

"Do you need to see how I'm doing it?"

"Yes I do, please."

So I showed him the 5, the 4 quarters and the change and he was visibly relieved. I asked him if he was still worried and he said,

"I thought you were going to try to pay with just the $5."

Somehow in his mind he believed that I was going to try to get away with paying for only $5 of his meal. I don't even know why he would come to that conclusion but he was obviously very concerned. The window opened, I paid for the meal and we drove out of the lot.

The whole way home he was in his "zone" that he goes to when he's stressed. He stiffens up, stares straight ahead, unmoving and he's hard to engage. I tried joking with him as I pulled in front of oncoming traffic to make the light (in no way putting us in danger) but I lightheartedly said to him,

"I have to get my boy home." And I laughed.

I just wanted him to lighten up a little.

As we got home and then work neared he was stressed to the max. I asked him what his number was and he said he was a 5 out of 10. That's high for Thomas especially lately. I suggested that he take a lorazepam and he jumped right up and got one. It didn't help right away obviously and it was time to go to work.

On the way to work I asked him if it was work that was stressing him out and he said,

"Maybe a little."

I tried to talk him through it as we neared his work but nothing helped. He was gone, lost in a sea of anxiety. He got our of the car for work and as I drove home I asked the above question,

"Why God, why?"

Because in that moment my heart was broken for my boy that he was having to fight the demons of anxiety. I just wished that we were back in Seattle, all smiles, excited about the day, strong even in the face of doing scary things like riding buses or dealing with the homeless begging for money. Instead we are home now, where all of the demons lay in wait for our return.

Why God, why?

Wednesday, October 22, 2014

Once Upon A Time

Once upon a time there was a very sweet angel boy. When he was born his mother swore that she would do anything to ensure that he grew up happy. Whether he was a garbage man or the president, she wanted him happy. But babies grow into children with personalities and minds of their own and this mother watched as her sweet angel boy began to change in front of her.

By 7 he was a frightened child, only his mother really couldn't put her finger on what it was. He couldn't sleep without a nightlight and he began wetting the bed again. This mother loved her angel boy but she was also frustrated, certain that there was something wrong with her angel boy's character that he couldn't just get up and use the bathroom at night. She became certain that other kids his age were advancing much faster developmentally and in her ignorance she measured her boy against what she thought was true of other children. Somehow, over time, the bedwetting stopped and the mother of this sweet angel boy thought she had been successful in her reprimands and she thought she had put a stop to it.

By 10 the sweet angel boy was well into school and he struggled with school work. As hard as she tried, she couldn't get him to learn his math or complete projects. In her frustration, she helped her angel boy complete his projects but was not kind about it, reminding him that he needed to get his act together, or else. Even then this mother measured her son against other children and felt sure that her angel boy lagged behind his peers.

This went on this way well into his teenage years and the mother of this angel boy fought with him tooth and nail to get him to do the things she felt he should be doing. She loved her angel boy more than life itself but she wanted him to be successful, wishing he was more like the neighbor boy who excelled in everything school related. Always she measured her angel boy against other kids and always she felt he was never going to get his act together and she hated herself for having to be so harsh but the power of imagined peer pressure for her was somehow stronger.

Then one day something happened. Her angel boy received a letter with no return address and when he went to read it he first put on a respirator mask, believing the letter had anthrax in it and he was being put under a terrorist attack. In disbelief the mother and father watched this transpire and in frustration told the angel boy to take off his mask and stop being ridiculous and just open the letter. Reluctantly he did but the mother, again, couldn't shake that there was something wrong, that her angel boy somehow had something inherently wrong with him. She spent much of his teenage years frustrated with him because of incidents like that and because, even still, he couldn't complete homework or even remember to make it home on time.

As his forgetfulness added up, so did her frustration and she felt like if she could just say the right thing to him to make him do the things she felt he should do then he would be okay.
He was never okay.

No matter how much she fought him.

So many more defining moments like these passed by this angel boy and his mother and still the mother felt like her authoritarian tactics would someday take hold and her angel boy would change. She loved him so much, oh how she loved him, but her frustration always seemed to win out in the end.

Then he became sick. REALLY sick. He had schizophrenia. At first this mother of this now sick angel boy didn't know what to do to help her son but she began to change her tactics as she began to understand the illness and its effects on the mind of a teenager and even a child. Piece by piece fell into place, all of those years of frustration that had added up seemed to fall away as the mother learned that most of what her angel boy struggled with had to do with this illness, schizophrenia.
Her tears came fast and uncontrolled as she came to understand better the mistakes she had made with her authoritarian parenting all of the years of her angel boy's life. All of the ultimatums she had laid down in an effort to get him to change, all of the frustration, all of the heated arguments, all of the moments where her angel boy and herself retreated to opposite corners to nurse painful wounds, all of it had come and gone and none of it could be taken back.

None of it.

Forever changed, this mother of this angel boy vowed with her entire being that there would be no more authoritarian rules. As she worked with this illness now ravaging her son even bigger and more cruelly, she softened her approach, made understanding this illness and her angel boy her priority, and in time, a new, more compassionate mother grew into maturity herself and as such she became not only a better mother but a caregiver, a student and a friend. Each day with her angel boy taught her about this illness, taught her about her boy and most importantly taught her about herself.
It is a new day, a new chapter in the story that predicts what the future may hold. After learning the MOST VALUABLE LESSONS from this angel boy who had, for years, had broken wings, this mother now makes it her life's work, with refreshed, enlightened vision, to never ever again let herself repeat the past.

Her angel boy is her life now, more than he ever ever was before and though she can't right the wrongs of the past, she now knows there is always today and many more tomorrows to love and protect her angel boy and most importantly to handle his delicate, broken wings with all of the love she has in her entire being.

The End.

Tuesday, October 21, 2014

It Starts With A Headache

For me there is a huge difference among the symptoms of schizophrenia and when the time arrives that something starts to show up I think to myself,

"Well this one is better than the alternative."

That "this one" is delusions. Delusions for Thomas have always been, on the whole, uplifting for him in some way. They give him a sense of personal power and boost his self-esteem. Sometimes though they have been a bit worrisome as they grow from an idea of his to a full-blown psychotic break. I wonder now, after last night, what he is cooking up in that mind of his and where will it lead?

After dinner he asked if he could have dessert. His choice? Popcorn and soda. MICROWAVE popcorn and soda. For years this has been his favorite and still remains so and he manages making it himself. I don't think anything of it and just let him be. Then last night happened.

While the microwave was running he came into the living room hesitantly and said,

"I think the microwave is getting old. Every time I make popcorn I get a headache if I'm anywhere near the microwave."

My mind slammed to a halt as I thought about what a strange comment that was. Our microwave is not old by any means and I'm fairly certain they have safeguards that keep the waves from coming out and getting you. When I was little my family got one of the very first microwaves ever made and that thing was cancer waiting to happen as we turn it on and we all left the room. Nowadays it's different though and right now, with our microwave, there are no dangers that I can think of. So when he said it was giving him headaches I told him about those safeguards and that he would be okay.

He was unconvinced.

Buying into his worries, I asked him if this had been happening every time he used the microwave and he couldn't say if it had but I could see his mind working furiously to make it so. I thought to myself,

"Here we go. We're setting up a new delusion and I'd better nip this one in the bud before it goes too far."

The question is, how to you get to work on a delusion, dismantling it, if the offending thing doesn't happen that often? It's not like he uses the microwave every day and when I do, it isn't smart for me to call him in and ask him if it's causing him headaches now since that would then be buying into his thought processes. So I have to wait until another popcorn and soda night comes around.

I know I said at the outset that delusions are better than the alternative but that doesn't mean they aren't a pain to deal with. They are set up in such a way that it takes a certain skill to wind your way around them and try to fix them before they become something bigger and unmanageable. I find myself stuck between a rock and a hard place. Do I ask him if his headache is there the next time he's around a running microwave or do I leave it alone? And if I leave it alone and he is believing inside his head that the microwave is causing him headaches and this belief begins to cement itself unchecked, then aren't I leaving him in "the bad place" where uncertainty becomes stony reality, packed in his mind tightly with brick and mortar surrounding it?

It's definitely a quandary as I sit here now certain I am watching Thomas try to make sense of his world by creating a delusional reality. As with all things delusion-related, I just have to watch and wait and pray that I can catch the next offhand comments about a headache and the microwave and put a stop to this belief before it gets out of hand whether that means, in the least having to buy a new microwave to accommodate his fears or at the worst it becomes the beginning of a domino effect that sucks him back down the dark hole of schizophrenia.

Monday, October 20, 2014

The Opposite Of A Psychotic Break: A "Healing Break"

You couldn't have seen a more happy, satisfied therapist than I did last Thursday. Thomas had his therapy and showed up fresh off of his Seattle trip with clear eyes, a smile, palpable excitement and happiness and a memory for the things that happened on his trip.

So I have to wonder, is there such a thing as a "healing break"?

While I am tempted to use the word "cure" to describe the new and improved Thomas because I would like that to be true more than anything, what I will use is a "break" in the flatness, the lack of motivation, the depression, the isolation and so many other things that are the hallmark of the negative symptoms of schizophrenia.

I was about to not be invited into therapy last Thursday but I insisted with the express purpose of helping Thomas remember all that he had experienced on his trip. With his memory being what it was prior to the trip, I thought he might need some help. As it was, he did a little bit and I got the ball rolling. Experience (and excitement) rolled out of him, one story after another, as I sat there in awe of this young man that just a week before had been struggling. I was rendered almost mute as he took over telling how he had passed one of his "homework" tests with flying colors, among other things. The homework that had been assigned to Thomas was designed to help him get past his social anxiety and in grand fashion, in Seattle, he succeeded at doing it.

As it goes, the plan was to get Thomas to ask someone for directions in a store or to ask someone for the time. With little opportunity to do that at home in the recent past because he didn't want to be out and about, Seattle gave him an opportunity to exercise his social skills. Then we found ourselves in an Old Navy at ground zero. I was dragging him through my power shopping trip before we left Seattle and he found himself needing the restroom. He found it, no problem, but it was locked. Now what? What was he left to do? He had to find the courage to ask an employee for the key.

I saw him standing in line, his gaze darting repeatedly to me almost as if he was hoping I'd rescue him. I was so tempted because the fear in his eyes just screamed for a rescue but instead I flipped through a rack of sweaters and watched him carefully, intent on letting him ride this out. He got to the front of the line and stepped up and asked an employee for the key to the restroom. Bless her heart, the employee was so nice and even a bit talkative forcing Thomas to interact with her. It couldn't have gone better. Thomas came out of the restroom and straight to me and I told him how proud I was of him for going through what he did. In a way he was my hero that day because he faced a fear and triumphed.

So, back in therapy, Thomas showed his "improved affect" as Dr. K. put it, and he told this story to him. Another test passed, another step towards healing.

Since the trip, with the exception of a few hiccups which I'll talk about another time, Thomas has been engaged in the world, renewed in a sense, and I can finally stop holding my breath for a while waiting for the other shoe to drop. I'm going to hang on to these moments, this trip, the shiny new young man I got out of it and I am going to not take a second for granted.

Thursday, October 16, 2014

Back To Life, Back To Reality

Here I am back sitting at my computer in my home instead of sitting in a chair next to floor to ceiling windows looking out over the city using my phone to type my blog posts. It's crazy how in the matter of a few hours drive, everything changes and sadly everything goes back to normal.

Our last hours in the city were spent allowing me to buy some clothes. I live in a small town so I wanted to find some things that no one else in town will be wearing. Unfortunately for Thomas this was the LAST place he wanted to be is caught in the middle of a 5 story department store. I watched his mood from the previous days nosedive and I hated it. By 2 we were in the car and headed home.
As we drove I'd turn around and peek at Thomas. He sat there staring out the window and watching the scenery go by. I imagine that he was probably feeling like he was watching all of his fun disappear. In the past his therapist and I have worked with him on holding on to good memories. We discovered that when Thomas has rough times, he doesn't draw on good memories to kind of pump himself up. He just wallows in misery. So, my plan is, to remind him as much as I can about the fun we had and the places and things we saw and did.

Still, as we got home and got settled, Thomas plunked down on the couch and didn't move. By 9 he was sitting there banging his head backwards against the couch. I watched him for a little bit then asked him if he was okay. He said he was and he stopped banging his head but within minutes he was right back to doing it. I have no idea what was going on with him.

I already miss the young man I spent 3 days with in a city far from home, doing things that we never get to do, and enjoying practically every minute. I expect a drop in mood over the next few days and I am sad about that. It did just now occur to me that he has therapy today so maybe I can go in with him and bring up the idea of the two of them working on Thomas holding on to the good times when things get difficult.

I just want him happy. I want to hold on to that "boy in the city" forever and ever and never let him go. We'll see what reality brings him today.

Wednesday, October 15, 2014

Up, Up, and Away!!!




It was hard to choose a picture to showcase for today but I chose this one because of where we were and what it says about Thomas.

For years I have tried to get him to ride rides at the fair but yesterday, with bravery, he insisted we ride the Big Seattle Ferris Wheel. This thing was several stories high and he got into it with excitement and a grin on his face. There were no white knuckles for him as we went up and over, sometimes dangling above the Puget Sound. He thoroughly enjoyed himself and I was very proud of him.

This trip has been a very healing journey for Thomas and included endless smiles and endless walking miles (which he did without complaint). We took a harbor cruise where Thomas stood at the front of the boat, wind in his hair, taking in the sights surrounding him. There was the Space Needle with its glass door elevator that he rode up without fear (I was the one with the white knuckles that time) and he wandered around the outside observation deck taking in the beautiful sights below us which included a beautiful rainbow.

There's no other way to put it as his mom but my boy was absolutely BEAUTIFUL this trip.

Then, last night, as we walked through the dark streets of the city to dinner, we came upon a man, raggedly dressed and talking to himself about God and how death is not the end and then some other random philosophical ramblings. I held my breath and quietly said, "there for the grace of God go I." And I linked arms with Thomas and I said to him, "that goes for you too kiddo" and I laid my head on his shoulder, hugged him close to my side and made him promise to always take his meds. I told him I never want to find him wandering the streets like that. He held me tight in return and promised me that he would.

All around, in every way possible, this trip changed our life. I learned that Thomas is far more resilient than me (I spent a lot of time on edge, anxious and frustrated courtesy of my low threshold for any kind of stress) and he was a champion of the most amazing kind and I will be forever changed by my amazing, brave, bright, thoughtful, strong, young man.

Tuesday, October 14, 2014

Hangin' With The Birds

 
 
Yesterday turned out better than I could have ever expected. The zoo was so much fun and Thomas brought it to my attention that he'd never been to a zoo that he can remember. I took him once when he was about 2 but who remembers what they did when they were 2?

Right inside the gate was the penguin tank with virtually no one around it and Thomas was able to walk right up to the glass. When he got there, out of the water, right in front of him popped up a penguin. It made him smile. He had bought a new camera for the trip so I stood by as he was intent on taking tons of pictures.

We wandered many zones but the highlight became the many bird aviaries throughout the zoo. You would have thought we entered Wonderland each time we walked through the double doors of the aviaries. Once inside it was truly a magical sight as the birds seemed to take to Thomas without hesitation. Pictured here, Thomas bought some bird food, squatted down and these 2 birds came out of the water and walked right up to him and started gobbling food from the palm of his hand. He was in HEAVEN. The truth of the matter, so was I, seeing my boy's face so serene and happy.

This trip has been truly amazing and seemingly almost healing for Thomas and for the family too. Everything I have wanted for Thomas's happiness has come true on this trip. We still have today and tomorrow to fill with fun and today's plan is to go to the aquarium and take a harbor cruise. I expect more wonderment from my boy (my young man) today. I'll be taking pictures and will post a highlight one tomorrow morning.

We're off to start our day now!

Monday, October 13, 2014

Were Here!



We made it to Seattle, WA! Thomas is still sleeping off his meds which makes me sad that he's missing a beautiful city morning but he had fun yesterday. This picture is of him and I on the Monorail. Doesn't he look... happy?

Previous to coming here Dan scouted out donut shops in the city online and this early morning he and I went for a walk and found one of them and bought Thomas his favorite--a maple bar and hot chocolate. When he wakes up he'll be so happy. He was really looking forward to a fresh donut in the city.

It is a gorgeous day here so we're headed for the Woodland Park Zoo. My sole reason for going is for Thomas who is dying to see the penguins. He also loves birds so I'm hoping there'll be a big aviary for him to enjoy them. When he was hospitalized last time he was incredibly miserable and I thought of buying him a bird for his homecoming but decided it might be too much for him as he tried to adjust to new meds and a new life. He has such a special connection with birds so I hope today at the zoo will solidify that.

I'm going to go enjoy my iced mocha and the incredible city view from my hotel room. I'll share more stories tomorrow.

Thomas is happy.

Sunday, October 12, 2014

Melanie Jimenez and Thomas: Our Story



As promised, I wanted to introduce myself and Thomas to you in formal fashion since I have so many new followers.

Thomas is 19 and is diagnosed with paranoid schizophrenia. Signs of his illness showed up very early in his life but I didn't know that what I was seeing was prodromal schizophrenia. By the time he was 16 the signs were hard to ignore but even then somehow I didn't see the illness, I just saw a quirky kid.

It all fell to pieces in April of 2012 when he had a major psychotic break that just couldn't be ignored. By October he was suicidal and was hospitalized for the first time. During that hospitalization they missed the signs of his burgeoning illness and released him unmedicated and getting sicker.

Within days of his release his therapist and I discovered the labrynth that was his mind which included paranoia, serious delusions and some auditory hallucinations. Two days after he revealed these things to us he was hospitalized once again. Within days of being admitted to a youth acute psychiatric facility he turned 18 and believing there was absolutely nothing wrong with him, he signed himself out barely medicated. After that we began the roller coaster ride that is schizophrenia which included yet another hospitalization and endless trials of medications.

After his diagnosis I knew what we faced in the future and what made me the most angry was the inevitable stigma we would run into. So on New Years Day 2013 I made a resolution to find a way to change that stigma.

During Mental Health Week at the beginning of May 2013 I began writing this blog. My main goal was to educate people on schizophrenia and with time I began telling my story as Thomas's caregiver and began to tell Thomas's story through my eyes.

Since then my blog has grown to over 4500 people filled with other caregivers for someone with schizophrenia and people living with schizophrenia. Also joining my blog were healthcare workers, psychologists, psychiatrists, journalists and many more.

I have since received many opportunities to write for web sites like Healthy Place, PsychCentral, N.A.M.I. and many more. Recently an article was written about Thomas and I by Dr. Sanjay Gupta outlining what it is like to be a caregiver for someone with schizophrenia.
My life is Thomas and my passion is this blog. I write almost every day sharing my story with you and very often releasing information about schizophrenia, mental health artwork, relaxation reminders, current research and information on schizophrenia and when given permission I share others stories too.

I want to extend a warm welcome to all of my new followers and a heartfelt thank you to all who have made this possible by contributing to my blog and for offering support and encouragement to Thomas and I.

My wish is that you all will find this blog useful for discovering information about schizophrenia and find comfort in mine and Thomas's story all with the goal of coming to understand that you are not alone.

I invite you to contribute whenever the mood strikes you but be mindful of the fact that this is a public space where anyone can read your comments.

I am thrilled you are here.

Welcome.

Saturday, October 11, 2014

What Tomorrow Brings

 
Sadly Thomas's work anxiety is back. We were free of this for a few weeks and last night it began again. For starters, I don't like this. Any march towards something that might indicate a relapse is not a good thing. Sure, it's just anxiety but with other things that have been going on, this is one more thing to add to the list. I'm a little bit nervous about this trip to Seattle tomorrow because it will be breaking Thomas and the rest of the family out of a pretty entrenched routine so it may not be all good. He is very excited about the trip because we are going to visit a lot of places he wants to see like the Space Needle and the zoo (weather permitting) and the aquarium and the science center. I let him pick our destinations for the trip where he, of course, also included dinner out at The Cheesecake Factory. On our walk yesterday I tried to entice him with all of the flavors of cheesecake they have and he really wants a piece of plain old New York cheesecake. For some reason I've always thought that was a little odd only because they have a cookies and cream one (my fav) that is a flavor he likes in his ice cream yet he still settles on plain cheesecake. I am happy though that he's excited and I'd get him anything he wants.

Yesterday we went for our walk again. I added another couple of blocks making our walks now two miles long. I am so happy about it because it will get him some decent exercise. Our conversation was nearly non-existent except for him to lament having to walk the dog because the dog doesn't follow his "rules". To ease his frustration, I offered to take over walking the dog and was promptly, and with an edge to his voice, told me he didn't want me to do it because I don't keep proper control over the dog. I had to laugh inside about that because the difference between the two of us is that he's like a drill instructor with the dog, holding court over exactly where she can go to the bathroom and what side of the sidewalk she can walk on. I, on the other hand, give her free reign over the sidewalk and whenever and wherever she needs to go to the bathroom, I let her. Essentially, I let her be a dog. So I left Thomas to walk her and had to remind him several times that she's just a dog and she doesn't understand his unreasonable rules for her behavior. I can actually see her look at him with, "What do you mean I can't walk over there?" sad eyes. I think we need to work on that, especially with Thomas's growing frustration.

Well, today will be spend packing for the trip and trying to get everything ready. We take off at 7 a.m. and the drive is 6 1/2 hours for us to Seattle. I grew up in that area so it'll be good to be "home" again for a few days. I wish we had more time but I think 3 days will be enough. I don't want to overload Thomas.

Thursday, October 09, 2014

Empathy

Last night after dinner my husband and I decided to go for a walk. For a month now I have been trying to lose weight (10lbs gone so far!!!) and I have become addicted to walking and getting in at least 10,000 steps a day. That is why I have Thomas walking now. It started out partially for selfish reasons, getting him out walking with me so that I could reach my 10,000+ steps, but also because I wanted him out in the fresh air, but now it's turned into quality time with him that I cherish. Anyway, I announced that Dan and I were going on a walk and Thomas popped into the room and asked,

"Are you guys going for a walk? Where are you going?"

I tried to decide if he was asking because he was nervous to be being left since it was getting dark out or even more heartbreaking, was he asking because he wanted to go too? I didn't jump on inviting him because I knew we were going to go for a long, fast walk and I knew he wouldn't be able to keep up. Still, there was something about the way he was asking that tugged at my heartstrings. Then he asked,

"Are you going around the cemetery and college?" (our usual walk, he and I)

and I told him we'd at least be doing that. The truth is as much as this whole exchange was breaking my heart, I knew that my husband also needs some time just with me to decompress and to just be together as husband and wife. Bless Thomas's heart though, he was really curious, a bit wide-eyed in the way that one gets when they are happily excited about something, and he was just standing there expectantly. I told him though that we were leaving and asked him if he would be okay while we were gone to which he said he would.

So, we left but in spirit I brought Thomas with me and wondered if all of his questioning was because he was hoping to be invited. When we got home, he was waiting for us. I sat down in the living room to take off my shoes and he asked me,

"How was your walk? Was it nice?"

This to me showed empathy. Perhaps because he had seemed so excited about the walk in the first place, I saw something that maybe isn't really there but in asking how our walk was and being genuinely interested in the answer, I felt this showed a great amount of empathy. He was outside of himself, his love of video games and YouTube and he was present in our living room enthusiastically asking about our walk and wanting an answer. It was a beautiful moment for me with him. It showed me so much about what a sweet spirit he has. In fact, I can't remember the last time he showed so much interest and caring though he is not without those qualities most of the time.

I was touched by his interest and I vowed to myself that today I am going to walk with him come hell or high water. We have missed a couple walks because there are these clouds of gnats I call blueflies (because they are a light, sky blue) and they are impossible to walk in because they get in your hair, your eyes and they try very hard to get in your mouth too. They're gross and more so, annoying. But it is shaping up to be a beautiful day today as I look outside now and see the sun rising and the clear blue skies. I will be spending some time with Thomas today on a nice walk out in the sunshine.

Wednesday, October 08, 2014

#WMIAD14 and An Update on Thomas

Today is World Mental Illness Awareness Day. This is the day that the entire world pushes for awareness, and lucky for us, the focus of this day is on schizophrenia! We are so lucky! While I am doing my part with my page, there are counterparts of mine out on the web, like on Twitter, that are making a concerted effort to make the world aware about our illness too. This is an exciting day in the world of schizophrenia. Chances are, we will help many more people understand the facts, and as far as I am concerned, the TRUTH about schizophrenia and I have faith that many minds will be changed as a result. This is the kind of thing that fuels all of my work here--I WANT CHANGE, I WANT AWARENSS, I WANT UNDERSTANDING, I WANT A STOP TO THE STIGMA AROUND THIS ILLNESS. Hopefully between what the world is doing today and what I am doing today and this week with your help, is making a difference.

Now, as for Thomas, over all I will say he is doing good. I think we are having a good week which includes yet another shower yesterday. He has also gotten in the habit of walking with me every day and looks forward to it. I didn't think that would ever happen. Taking him away from his computer is a carnal sin (LOL) so getting him out for a half hour a day for a walk is a pretty big accomplishment in my book. I have really enjoyed these walks with him where we either talk the entire time or spend the whole walk in silence. He and I have a comfortable silence that I would never have thought possible. I think I feel like I am pressured to keep conversation going and he is fine with saying nothing. He is a man of few words after all.

Coming up in a few days we will be going on vacation to Seattle, Washington. We wanted a family vacation and I wanted to put it all in Thomas's hands and what he definitely didn't want to do is go back to the ocean. He wanted to go somewhere new. While we have been to Seattle before, it has been a long time and I knew it would be the change of pace that Thomas needs. There's nothing like the bright lights and hustling and bustling of a city to wake a person up and shake them out of their routine. I know that I preach routine for Thomas but to help him with all of that I have promised him I will take him to all of the places we went to last time and we will stay in the same hotel. He feels confident that he will love every minute of it. Of course only time will tell. We all need to get away so this will be good.

So, that's an update on life here in our house. I am keeping my eye on Thomas but right now have relaxed a little based on what I am seeing. Perhaps he just had a few rough days for whatever reason and perhaps this upswing is only temporary but I'll take any goodness I can get for him.

Monday, October 06, 2014

That "Disturbance In The Force"

Why is it that I can't shake that there is something going on somewhere inside that brain of Thomas's? This is one of the most annoying parts of this illness for me with Thomas. This feeling something, but not being able to give it a label, is frustrating. Granted, for the most part, Thomas SEEMS okay. He's showering again, which is good, and he's engaged in family dinners among other things but then there's things like last night.

Usually in the evenings he's in his room happily watching YouTube or playing games but then last night at about 8:15, for no discernable reason, he came out of his room and sat in the living room with us and half watched TV while also looking distractedly around the room in front of him. I watched him sitting there hunched and silent and wondering why he came out of his room. We weren't even watching a show he likes. Then it came time for my husband and I to go to bed and he just got up and started to leave the room. I asked him if he wanted us to leave the TV on for him and he said no and that he'd just go back to his room.

Once there I went in and sat on his bed. Something was obviously wrong. I asked him if something like Slender Man was back would he tell me? He said Slender Man wasn't back which I didn't think it was but I was trying to get out of him if he would tell me if something LIKE that came back. He insisted he was fine but he just remained sitting there on his bed with no tablet, no computer, no drawing, no writing to keep him company. He just sat there. Something is obviously off but I guess I'll have to wait and see what happens next.

The thing is, I am always able to read him long before he realizes he's feeling something. He'll be angry and I'll ask him about it and he'll say he's not angry but then tell me later that something was bothering him but he didn't label it as anger even though it was something that would make anybody angry. Everything about him, though, said that he was angry. It's instances like that that happen all the time that make me know for sure that something is going on even if he can't label it right then. Last night was no different. It wasn't anger though, it was a disturbance in the force, those unnamed impressions I get from him for which there is no immediate explanation. Just a FEELING.

So, I made him promise that if something like Slender Man was back that he would tell me. He assured me he would. Unfortunately from this point forward I am relegated to the background to watch in silence as things possibly (but hopefully not) fall apart.

Sunday, October 05, 2014

Seeing The Light

Thomas has "seen the light" and is now showering every other day per our past agreement. He's doing it without complaining and without being asked to so that has lowered tensions between him and his dad and it has made me beyond happy.

He worked last night but I fell asleep before he came home so my husband, Dan, went and picked him up from work. Dan says that Thomas came away from work seemingly in a good mood so that makes me happy. I do wonder how his mood might have been if I had picked him up. I know when I pick him up he's usually more sullen and truthful about his night. Dan gets the perkier version of Thomas because Thomas knows that his dad is less interested in his struggles during work. That is okay though. I think, in a way, it's good practice for Thomas to try to embrace the good parts of his job.

When I got him to work last night they had set up all of the big inflatable Christmas characters and it is starting to look festive there. I pointed them out to Thomas and he seemed excited about it. It's really hard to know for sure how this holiday season will go after having had such a rough one last year. Honestly I am a bit scared that it's all going to go south since that seems to be the trend in the fall and winter since Thomas got sick but then again, he was never as well treated medically as he is right now and he does say his delusions are gone so we may be ahead of the curve this year.

I also often wonder what will take the place of his past delusions and paranoias. Without the government watching and tracking him (in his mind) then will there be something else that will get him? I hope that's not the case but I am getting prepared for what could transpire.

Friday, October 03, 2014

Creating A Monster

Yesterday was Thomas's therapy and what I took away most was that Thomas has no sense of purpose. I can't shake that he feels that way because I know what it's like to live a life without purpose. Especially for him, I worry because he has such a nasty illness with an unknown future and meds that take away any desire to do anything. So, I have been mulling things over in my mind about how I can help him to find purpose. It's hard because he doesn't seem to have many interests right now.

Yesterday he stated that all traces of his past delusions are gone. One of these delusions included believing that he was going to become a powerful world leader and exact great change in the world. I suppose that's fine, in theory, but it's his political views and how he wants to go about making those changes that is concerning. But he said he doesn't have those delusions and Dr. K. and I discovered that without them his self esteem is low.

After therapy we had to run some errands so I thought I'd take some time to help him try to sort out how he could have purpose in his life. I brought up his artwork and he immediately stated,

"I'm out of ideas. The last ideas I had were when I was in school."

This said with a tinge of anger.

Then I suggested that he write something, maybe start a blog. He kind of mulled this idea over and then told me that he'd rather write his science fiction stories only,

"I'm out of ideas. The last ideas I had were when I was in school."

This time said with definite anger and frustration. What was he NOT saying in that? My mind immediately thought that the two things that were happening when he was in school was that his illness was running unabated and he was not medicated. Of course he had good ideas then! In a way I felt bad for him. I don't want him off meds and I don't want him sick like that again but if those two things are what make it so that he has a life he enjoys, then what?

Then I brought up his political beliefs. This is where I stepped in quicksand. I told him that if he wants to have purpose and that politics is his "thing" then maybe he ought to do some serious studying on all kinds of politics and see if there is something he is missing and might learn from other ideologies.

I know.

Dangerous ground.

He remembered he had a book I had bought him that was about every form of politics that has ever existed in history and he said that he might read that. I had bought him that book for this very purpose. I wanted him to give his own single-minded beliefs a makeover. He didn't touch the book as far as I knew but perhaps he will now.

Then...then I said the next thing. Bear in mind, it's a tough place to be caught between schizophrenia and a young man being in the prime of his life and needing purpose. I suggested to him that he start writing a blog. I told him that he's always been an amazing writer and that he should dip back into that. I told him that if he studied politics and came up with a more educated perception of it that he should write about it. No sooner was it out of my mouth and I suddenly had visions flash through my head of what that might look like:

Let's say he studies politics. Let's say he broadens his horizons. Let's say that he created a hodge podge of ideologies that are more controversial then what he already thinks. Let's say he DOES start blogging. Then what? Have I just created a monster? What if he fires up a blog, becomes extremist and ultimately ends up sick again or God forbid something worse that I can't name right now but can feel its fingers touching the edges of my consciousness and giving me goosebumps.

What have I done? Now, the chances of him doing this are probably small, the starting the blog thing anyway, but what if he does decide to go ahead and start being more vocal about his beliefs?

I don't know.....

All I know is that I am broken hearted about Thomas feeling like he doesn't have purpose. I hate that what remains entrenched is his (to quote him from yesterday) "strong political beliefs that people don't agree with". How do I give him ideas for cultivating purpose without fueling potential delusions?

I just want him to have purpose so badly. I just want him to feel like he has a place in this world. I just want him to have a reason to exist on this planet.

I don't know. All I know is that I probably stepped on dangerous ground yesterday but in trying to work with what he still finds interesting, I was trying to help jumpstart his life. What do I do? Do I give him kindling to start a fire or breath to blow into an already smoldering one or do I just leave him alone in a world without purpose?

Thursday, October 02, 2014

What Waits For Us On The Horizon

I stopped into my support groups today and read about how my friends are doing with their loved ones with schizophrenia. Simply put, many of them are STRUGGLING. Between non-med-compliant loved ones and others who are so lost in their delusions and paranoia, the toll that is being taken on each one of my friends is palpable and my heart breaks for everyone.

It made me stop and think about my own life and that of Thomas's right now. Compared to what many of you live with right now, my life is a walk in the park. That fact is not lost on me. I sit here and write about how I can't get Thomas to shower while other people's lives are crashing in around them. I do try to remember some advice a therapist once gave me, though, when I stated that my problems were nothing compared to what so many people go through. His response to that was to say that my pain is just as real because it is my pain and to compare it to that of others isn't an accurate way to live your life. I get what he's saying and God knows last week looking at my filthy, flat son, I was hurting terribly but if that's the worst of it, then I need to re-examine my life and find my capacity to be grateful for what I have.

Don't we all struggle though? Don't we all sit somewhere dissolved in tears and wondering what will happen next? Don't we all find triumphs, big or small, wherever we can? When it comes to this illness aren't those universal feelings, whatever your circumstances?

After reading what I did this morning, I see that they are. There are mom's welcoming their young adult children home from the hospital, excited to see them and give both of their lives, themselves and their loved ones, a second (or third or 20th) chance. They are enjoying a bit of a triumph in that but find that feeling of living like it could all blow up in their faces is there too. Don't we all feel like that no matter what our lives lay out before us? I know I am living that right now. My personal triumph is that Thomas showered yesterday but I also feel like, based on recent events, that any minute now, it could all disappear. At any minute the delusions could rebuild themselves and the paranoia could catch fire and I could find myself standing outside the 5th floor psych ward as it closes in my face after visitation hours where Thomas was angry and sedated and hating me and his life.

It is all tentative ground we stand on with a thin veil separating us from here where it's good and there on the other side where...well...it's not good. Not at all.

To my friends (and to ALL of you our there) whose lives are in turmoil right now, who are at their wits end, who feel like giving up, I want you to know that you are not alone right now no matter how much it may feel like you are. We can't be there by your side to hold your hand and hug away the grief but we are here to listen and to offer advice based on our own experiences. We are here to say "me too" in the hopes that you'll find comfort in that in among the hell you live in right now. I know it's small comfort when your lives are so big and complicated but it's, at the least, a thread of light and at it's best it's a place of respite.

I guess the takeaway for today for all of us is this: This illness, this rabid schizophrenia biting at all of our heels, is our common thread. We wouldn't have found each other without it. We are in this together. We all struggle in waves where some of us are ankle deep in the ebb and flow of the water at the edge of the beach and some of us are tumbling around in the 8 foot waves further out from shore just trying to catch our breath before we go under again. What we must remember though is that we are all on the same beach peering at a horizon that promises both a crippling fear of what might come over it or it promises a moment of peace and hope after seeing the sun lazily sink into its edges leaving behind a brilliant colorful sky.

Wednesday, October 01, 2014

Ahhhhhhhh!!!!!!!! C'mon Dr. N., I need you on my side!!

...I say that with humor and a little frustration because you know when I got my chance yesterday I brought up the fact that Thomas will only shower every 4 days. Well...Dr. N. asked a few questions mostly about WHY Thomas doesn't shower but unlike Dr. K., he passed no judgment whatsoever leaving me hanging. At least Dr. K. made some offhand comment about it not being good that he doesn't shower very often which in the end didn't help but I figured if we could rack up a few respected people's opinions on the matter that it would help Thomas change his mind. Alas, no, nothing was said apart from trying to discover the why's of it all.

I have never been in on a full session with Dr. N. so I was surprised at how many questions he fired at Thomas. It sounded like a test to discover if someone has schizophrenia or not. A lot of the most basic questions that we all don't ask anymore because we know the answers well. But Dr. N. asked them all and it was interesting to sit in on it. The takeaway from all of that is that Thomas has zero delusions, no paranoia and no hallucinations. Go figure. I guess that is within the realm of possibility but after the last couple of weeks I don't know if I believe that or not. Certainly we're looking at a serious case of negative symptoms and drug side effects but at least for that session, Thomas is doing well in the positive symptoms department.

Then it happened. For the love of God I never understand the reasoning behind this but Dr. N. brought up reducing Thomas's meds. When he asked Thomas how he felt about doing that Thomas didn't miss a beat and looked straight at me. I'm not sure how I became "the decider" but it's a role I went ahead and took on because I have definite feelings on the matter. With the holidays coming and because for the last few years he has gotten worse in the fall and winter, I think it would be foolish to reduce meds now just as we are entering "the season". Dr. N. hasn't been in Thomas's life a full year yet so he's missed all of the "fun" of a full cycle of seasons. Needless to say, he won't be reducing meds and after I talked to him he understood why I feel like I do.

Then the akathesia came up. He backed up what the pharmacist told me and said that Cymbalta doesn't have akathesia as a side effect and that instead he felt it was the Latuda. This makes sense to me because my own med Risperdal will sometimes cause an evening here or there of intense akathesia. I think the antipsychotics are definitely known for this. The problem was, his solution to it is to reduce it. Back to that. So what do we do? Dr. N. decided that since the akathesia didn't stick around that we would wait it out a while longer. I hate the position these meds put our loved ones with schizophrenia in as well as ourselves as caregivers. There comes a point when you have to decide between the lesser to two evils. Not a fun place to be. Thomas seemed okay with waiting it out though so we kept everything the way it is.

All in all the session went well though not much was really accomplished. I had gone in there hoping he'd help me out with the showering thing but that is not to be. Now it'll be back in Dr. K.'s hands on Thursday. Let him have another go at it. For myself, I am out of ideas short of throwing down ultimatums which have never worked in all of Thomas's history. Here's hoping that it resolves itself soon.

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