Monday, March 31, 2014

Seeing The Light

As it stands right now things are looking pretty good for Thomas. I've been wanting to write about this for a couple weeks but have held off because I wanted to be sure about what I was seeing. Besides the police car incident, he is doing better. I have to be honest about this too, I am relieved and I am thankful to God. A part of me has wondered if because my daddy passed if I was given this gift of Thomas' better health because I couldn't have handled them both together if Thomas were sicker. To me, right now, it is a gift and one I am not going to squander.

Last night, however, he was supposed to work. Thomas came to me about 2 and said he was nauseated. I kind of let it go. By 3 he was back in front of me complaining of nausea again and asked if he should call in sick to work for the night. I took his temperature and asked him what he was feeling and he didn't seem very sick to me. I didn't know what the nausea was from. Then I thought it might be anxiety so I asked him where his level was. It was a 3. Well, a 3 has become the new normal for him, at least that's how I've come to see it so I didn't think too much of that either. We talked about what it meant to call in sick and I told him he would be better to face things and work anyway. I told him it was up to him what he should do but I felt that if he chose to call in sick that he should do it sooner than later so they could find someone to fill his shift in time. I also thought that if the stomach upset was nerves then by work time he'd be feeling pretty rotten because when he's anxious he's sick. We talked about it all and then I told him it was up to him. I started to leave his room and he said to me, "I'm going to go ahead and call in sick." It was his choice to make and he made it so I just said, "OK" and let it go.

By dinner time he emerged from his room perfectly fine and ate dinner with us and had dessert. So much for the nausea. It makes me wonder now if the nausea really was anxiety related. In the spirit of not giving him the 3rd degree though, I will never know.

The night before last he had also not slept. He had tossed and turned until 2am. I don't know what that's about but I left that alone too. You know? This not acting like a worried mom thing is very hard. So many times I want to ask questions but I don't and I won't. He is still decreasing the clozaril with the goal being to be off of it completely. That seems to be going very well but then physically I would imagine that it would. We're getting it out of his system so any physical benefits would be good. I can't help but keep an eye on things though because the clozaril was originally put in place for a reason. I don't know, I guess we'll see.

All in all though things are moving forward slowly but surely. I like to think we're headed into a good period where he will be ok for a while. I don't have a lot of faith that it'll stick because no med has worked for very long but I am going to take any time free from symptoms that I can get. Hopefully I'll have some sense to make the best of this so that I'm better prepared for when things go south again.

Sunday, March 30, 2014

Giving Him Wings

I felt like this morning I should clear something up. I know nobody said anything like this but I wonder if you might think this. I had a talk with my mom yesterday about yesterday's blog post and I further expanded on it with her. What she jumped on was that I need to let Thomas go. She felt that I wasn't giving him enough room to become independent and I became frustrated with her because that is not what's going on at all. I explained this to her and thought I'd share it here with you.

There is nothing I want more than for Thomas to become independent someday. When he was younger his dreams were to join the Navy. I pretty much planned on that being his life until the Navy told us they wouldn't take him with the type of illness he has. Up until then, though, I prepared myself all the time for the eventuality of Thomas leaving me to go and see the world. I was excited for him, excited that boot camp might set him straight and get him on the right path. You see, because I didn't know he was sick I thought some of his behaviors were those of a teenager being difficult and not applying himself and I thought a good 2 or 3 month boot camp might set him on a good course for his adult life. As much as I didn't want him to go, as much as I lived in horror that he could end up in some sort of battle somewhere, I never once stepped on his dream. I took him to tour a submarine and a few Navy ships that showed up in places that we vacationed to. He often watched military shows about the Navy and about prepping for boot camp. He was setting his course and yet every part of my emotional mom side cried out wanting him to stay right here in town with me. But I never ever stepped on his dreams for my own selfish reasons.

Fast forward to lately and his burgeoning independence. Let me clarify a few things. First, I write here my feelings about losing him, my feelings about his illness about...everything. These are my feelings and do not in any way define my actions towards Thomas. I have become a bit of a split personality in that what I feel and what I do are two completely different things. Just the other day, against his anxieties about it, I pushed him to apply for a secured credit card. He was scared to death but I explained to him how this would be important for establishing credit for his future so that he could rent apartments and maybe buy a car someday. At another point he came to me and asked me to make an appointment for him to get his hair cut. Up until then I have done that and paid for it. Instead what I did was give him the phone number for the barber and told him to make his own appointment. He was scared to death but I told him that this was all part of becoming independent. Furthermore I informed him that he would also have to pay for the cut because I felt it was time he should start paying for his personal upkeep at the very least. He agreed to do this. So you see, my actions were that of a person who is letting her son go, who is actually pushing him to fly free. However, my feelings were two fold. I thought to myself, if I get him going on this stuff it is one more step to me losing him. I hated that. It made me very sad and very scared. On top of that he was so scared to make his own appointment for his hair cut and normally I would have stepped in and done it because I felt horrible for him and his anxiety. I didn't do it though.

So you see? I am not standing in Thomas' way to become independent. My actions will always be, for the most part, to allow him to fly free but I can guarantee you that yesterday's post will not be the last one about my feelings and fears for what's to become of him. When he suffers in some way, truly suffers I will, of course, step in to protect him because in those times he will need that.

For now though, as he improves, I will give him the chance to try those wings of his that I gave him at birth. I would love to see him soar, to look down on a world that he so desperately wants to leave behind, the world of being tied down to an illness that cripples him at times. I want it all for him but I will never stop wanting him safely by my side where I can protect him. I am a mom, that is ingrained in me but I am also smart enough to know when it's time to let go in spite of how I feel.


Saturday, March 29, 2014

Doubt

I don't know about the rest of you but I have these moments of doubt about Thomas being sick at all.

I was sitting outside this morning thinking about life and about Thomas and how he's been doing lately. Over all, apart from the whole policeman incident he has been doing better than he has in a long time. There are moments, yes, where I'm certain that he has schizophrenia but then days like yesterday happen and mornings like this one happen and somehow I start to question everything.

Let's take the police incident for an example. Seeing the car outside his work caused him to get anxious and apparently the anxiety led to his paranoia. Or was it the other way around? I don't know really and because of that I wonder if instead Thomas suffers from an anxiety disorder and not schizophrenia. I will share a moment of self disclosure here and say that for myself, when I'm driving, if a police car starts to follow me I begin to wonder if he's following me in particular. I check my speed, I wonder if all of my lights are working, I pay attention to my following distance and if a light turns yellow, even if it means I throw my passenger through the front window, I will brake quickly to make sure I don't get caught going through a red light. Granted, I don't become terribly anxious about it but I do feel like he's after me for some infraction. So I wonder, how am I any different than Thomas? My psychiatrist has assured me in the past that I don't have schizophrenia but then I wonder, does Thomas?

Lately he has been doing more and more for himself too. I feel it like I feel when he's suffering, what I call a "disturbance in the force". He's irritated at me when I try to help him with things that I used to help him with, when I'm not around he does things like close the curtains in the house when it's getting dark and twice now I have come home from somewhere to find a freshly showered kid, no reminders from me. Is he getting better or was it that he was never sick in the first place? I know, we could list all of the "what about when he ____" things that are a part of a not too distant past but somehow I'm losing my grip on those things and beginning to have doubts. I don't know what that is that clicks in me that seems to wipe out all rationality about his having schizophrenia. Perhaps it's my old friend "denial" that's seeping back in. You know her, or someone like her. She's the one that showed up and stuck around when your loved one first started getting sick. She grasped at any straw that indicated that the doctors might be wrong after all. She didn't read the books or the studies or the articles. She found every reason on earth not to believe that what was happening was happening. Well, it is her that is with me now, today.

I have to wonder too, as I watch Thomas become more independent, is it his time to leave the nest and make a life for himself without me by his side most the time? If that is the case, then what am I looking at here? Well, to be truthful, years ago, before Thomas got sick, I was in therapy and spent a couple of sessions on my grief about Thomas growing up and leaving home. I was beside myself because I just couldn't imagine my life without him. Could that line of thinking be my "disturbance in the force" now? Could the disturbance be coming from within me? Could I be feeling that the time is coming for Thomas to move out on his own and try his wings and that scares me? Perhaps. It wouldn't surprise me since I just lost my daddy and now I'm watching Thomas do things like shower and take his own meds without my eagle eye on him and get a snack without asking and.......the list goes on and on.

I don't know. That's just what I feel today. Doubt. That and probably that fear that he will actually leave home and make a life for himself in some little apartment with a friend or two and I'll be relegated to the mom who stops in and brings a casserole or does a load of laundry.

Perhaps it's all too soon to tell. I don't always know what's going on in his head. I don't know what level his delusions are at. I don't know for sure that he's less paranoid on average, I don't know....

So, I sit here today writing about what I don't know, what I fear, what I do and don't want and about what seems to be reality. I want him better, I want him to have a life, I want him happy, I want the monsters to truly go away but is he? Will he? Can he be? Will they?

Friday, March 28, 2014

Diagnosis? Fine.

In a way I was glad that I wasn't pulled into Thomas' therapy yesterday because I felt he needed time for himself. I have to say I felt a bit rejected though (LOL) because I've been in on every session for a long time. I didn't feel I had much to offer though and only reminded Thomas to talk about his paranoia about the police officer outside his work. They disappeared into the room so I decided to go run errands. It was kind of freeing in a way.

I came back early and sat in the waiting room and played slot machines on my phone. They have become a release of sorts for me and I just thank God that I don't have a real addiction to slots where I spend a great deal of money and my time going out to the real casino just outside of town. To be fair, the casino is very tight with their giving of winnings so I really hate them and don't want them to have a cent of my money because every time I lose $20 to them. They've got enough of me and so I play virtual slots in the comfort of my home, or waiting rooms as the case may be.

Anyway, I waited for Thomas and at the end they both emerged. Doctor and patient came out exuding enthusiasm and smiles. I thought to myself,

"okayyyyyyyyy what's up?"

The two cats that ate the canary approached me and his therapist spoke first. It seems the two of them came up with the brilliant plan (read sarcasm here) of Thomas moving to his grandma's house. Wow. Really? This was news to me. His therapist went on as if this was gospel and the perfect plan for God knows what (Thomas' future) and when he was done talking he dumped it all in my lap. I was like,

"WHAT?"

Where did this come from and who said Thomas could move to grandma's never mind that my mom nor myself had weighed in on this grand plan and here I was being forced, in front of Thomas, to agree that this was a great plan that I should embrace and that I should encourage my "lonely mom" to do. That was what his therapist said,

"Since grandma is very lonely these days it might be nice to have some company with her and Thomas can do work around the house like mow the lawn or trim bushes for rent."

Wait. What?

You see, all of this was being thrust upon me like the two of them had dreamed up this wild plan and it was now set in stone and somehow they were attempting to curry my favor and allow this.

I stammered and tried to gauge what I was supposed to say here. For one, this was entirely my mom's decision and I already knew her answer to that pretty much since we had talked about that maybe happening somewhere in the future, way down the line and only if Thomas got sicker and needed a change of scenery. The final verdict of my conversation with my mom had been that she would like to have him with her for a night or two but that was it. Moving in altogether though? Yeah, not going to happen.

So I tried to not hurt Thomas' feelings because he was so lit up about this great plan but I told the two of them that grandma said she'd like him to stay a night or two. Thomas' therapist backpeddled a bit on his enthusiasm and Thomas seemed to resign himself to a lesser plan. Why does his therapist do this to me? This isn't the first time that this has happened. I have been pounced on several times before with similar revelations that apparently I was supposed to jump on board with and not only jump on board but light up bright like them. Mostly it just makes me mad at his therapist and makes me feel bad for Thomas as I am forced to shoot down the plan because nobody thought to ask me why these things can't happen like the plan.

At any rate, as per usual, I shot down the plan, said Grandma would have him for a day or two and gave his therapist a look to make him shut up about it. Then the next announcement came. "Thomas' paranoia is at an all time low."

Wait. What?

What about the police car out in front of work? How did that figure in to this new diagnosis? Thomas looked so proud and I let that one be but when we got in the car I checked with him.

"So you're feeling better about your paranoia huh? What is your number (rated from 1-10 1 being low, 10 being high) and he proudly stated he was a 1. Well, alrighty then. He's fine.

No, he's fine and he's moving out.

What the heck happened in that room without me there? Oh well, I guess my help wasn't needed yesterday except that the reasons I have been in there in the past was to tell the story of Thomas for Thomas since he can't remember what happened even 3 hours ago.

Well, ok then, I'm letting them both have their good day and their grand plans. It's good that Thomas feels better yesterday but I am unconvinced that we're looking at a complete about-face in his illness.

Thursday, March 27, 2014

Back To Square One

You see? The minute I make the decision to give Thomas space it all backfires on me. Why does this happen?

About a week ago Thomas seemed to start improving and I made the decision to back off of him and just let him live his life without me always in his face. I made a slight mistake the other day by checking in with him a little bit because I had come home at 3pm and every curtain in the house was closed. It was strange. It was still light out and wouldn't be dark for hours. It concerned me so I went in to see Thomas in his room and mention the curtains. He said that he had done it "to be courteous" but I hesitated and began to say that it worried me. Well, I got as far as saying,

"It's not dark out and won't be dark for hours so it worr.........."

And he snapped at me saying he was fine and that this was not his schizophrenia. I backed down immediately and apologized but he was unmoved. I, then, went back later and after rehearsing it, said another apology about how I shouldn't have assumed anything and I thanked him again for being courteous and taking care of the house for me. He said thank you and turned back to his computer. I felt awful because I had gone back on my word that I had promised myself and I had said something. I had good reason to ask him what the deal was with the curtains because of his history but I had broken my promise to myself to back off of him.

Then last night it all came crashing down for him. He went to work and I made sure not to quiz him about his anxiety and I barely said anything to him the whole ride there. He did say he was doing ok so I left it at that. I came home from dropping him off and began my usual evening of TV watching and snacking and walking the dog. I was going to leave the house without my phone to walk the dog but something told me to grab it anyway. The walk was uneventful but no sooner did I get back and get settled in, my phone rang. It was Thomas. He told me that he had an upset stomach and was dizzy and could I come get him. I told him I'd be right there and I drove over to his work.

As I pulled up out front he was standing, stressed out, by the big front window waiting for me and I watched as he punched the clock and left work. I told myself to be sure to stay off his back about what he might be feeling but when he got in the car he was shaking and obviously struggling. I had to ask him if he was ok and he repeated his physical symptoms. Though it was killing me, I pretty much kept my mouth shut and then he started talking.

It turns out that a police car had been parked outside the store for an extended period of time and there was an officer sitting in it. According to Thomas is was there a long time. I guess I didn't get what was going on right away because he's never had a problem with the local police before that I knew of. This time, however, I was wrong. Apparently the fact that the police car sat outside his work for so long piqued his paranoia and anxiety to a pretty high level. I asked Thomas why he thought he might be out there and he said he didn't know. I asked him if he thought there was something he could have done to cause the officer to be outside and he said he didn't think so. Then I completely threw my commitment to not bother him anymore out the window and asked him what his level of anxiety was and a few more questions. I then asked him if he had used the tools his therapist had given him to deal with these sorts of things and he said he had tried. I looked at him and he was terrified. I felt horrible for him.

As we drove the rest of the way home I'd take little peeks at him from the corner of my eye and he was struggling a great deal. I reached over and squeezed his leg and told him that I was sorry that he had had a rough night. He didn't reach for my hand at all. I asked him as we drove into the driveway if he wanted one of his lorazepam's and he said he did so I told him where they were and left him alone.

The thing that plagues me as his mom is that as usual when I make the decision to leave him alone, something comes up where he needs me in some way or something goes completely haywire. I do this dance inside my head all the time. Do I ask? Do I leave him alone? What is the right thing to do? In this case, in my mind, I left him alone and in the absence of my concern, he fell apart.

So, now I'm back to square one. The truth is, he has been decreasing his clozaril slowly and last week was a decrease point and now today will be yet another. So I wonder, was last night's fear of the policeman the beginnings of his illness taking a turn for the worse because he is not properly medicated? I don't know. What I do know though is that I'm back, in my mind, to wanting to check in with him every now and then.

It never ends, right?

Wednesday, March 26, 2014

A Team Effort

A kind of evolution is happening in Thomas' therapy lately. I've sat there kind of dumbfounded as one of my wishes for Thomas' treatment has come to pass. After writing those couple of emails to his therapist and one time asking him, or rather insisting, that we make Thomas' treatment a team effort, at the time I was requesting it I really felt in a way that the therapist's ego was much too fragile to make allowances for such a suggestion. Slowly, though, he's been coming around making comments here and there about how I have had something to offer the session and I've relished each time he's done that but I still felt I was out there on my own trying to do my own brand of therapy to help Thomas in between sessions. Last Thursday changed all of that and now I feel like we are on the right track.

What happened was that I was called into yet another session. I've really had mixed feelings about the fact that I'm in on practically every one because I don't want to ruin Thomas' place to talk about the things that he wants to talk about without me there. At the same time though I have had valuable things to share with his therapist and with Thomas' memory getting worse, I have now become his voice in a way to help him express the things that he's been through the week before. That's one thing I have been very worried about lately with Thomas and both of his doctors and Thomas share the same concern and that is his memory loss. It's been a slowly creeping symptom of something (is it meds side effects? Is it the schizophrenia?) that no one can seem to put their finger on. At any rate, as I said, I have sat in on sessions to help Thomas remember his previous week.

Thomas and I and his therapist worked together on Thursday to help Thomas restructure his view on his anxiety. It does seem to be lessening for him and I think we have the new high dose of Latuda to thank for that. However when it does get bad, it gets really bad so it seems we've traded an almost chronic mid grade anxiety in for calmer times that are punctuated with some pretty rough moments. In a way I see this as a better choice, if we were actually allowed to choose, because I see such improvement over all that it seems almost worth it to have moments of serious anxiety but with a more normal life in between.

Then it happened in session, the thing that I have waited weeks and maybe even months or years to happen. Thomas' therapist leaned forward in his chair and looked Thomas in the eyes and spoke. He said:

"Tom, the reason I have mom come in there all the time is because I think of her as my right arm in therapy. I only get the luxury of seeing you once a week but your mom is with you all the time and sees things that I would never get a chance to hear about if it weren't for her. Tom, if it's ok with you and mom, I am going to ask her to do something for me. I need help. I want to do everything for you I can but I just don't see you often enough. I think mom could play therapist and be my helper when I'm not there. My thoughts are that it would be nice for her to be there when you're dealing with your anxiety and she can give you pointers on how to deal with it or if it's after the fact, she can help you see how you might have handled it differently."

I could hardly believe what I was hearing. Was he recruiting me to be his partner once and for all? Had he finally seen my value as his "right arm" and decided that he'd involve me in helping Thomas? All signs pointed to yes and I sat up and listened and began, finally, to take myself seriously in terms of my value to him.

So, we formulated a few plans and now I am a valuable piece of Thomas' treatment team according to his therapist. All that I'd been hoping for in the last few months had come to pass and here we were, finally a team he and I, and Thomas would now have both of us working together to help him. I consider myself a very lucky person. The truth of the matter is, my angry, demanding emails could have taken the caregiver/therapist relationship so far south that treatment might have suffered but in the end, thanks to Thomas' great therapist being thoughtful about what I was saying and seriously taking it into consideration, Thomas is now the fortunate recipient of some loving, compassionate, educated teamwork on the part of myself and his therapist.

Tuesday, March 25, 2014

Who Is He, Really?

With the loss of my daddy I have been giving some thought to what would happen if I lost someone else in my life? What would I miss? What would I have wished I had said before they left? What would I want to have known about them? It's funny because you really do take someone's life for granted, their actual living. Unless they're dying of something like cancer and you know the end is near, you actually don't give much thought to the fact that you might lose them someday. All of these questions got me to thinking about Thomas and how much I know him. He's such a quiet, stoic soul and when I thought about all of my questions the other day I realized that if I were to have to write a eulogy or something for him, I don't know what I would say. I wouldn't want the sum of his existence to be that he fought a valiant fight against schizophrenia. This illness is not what defines him even though it seems to be dominating his life and my thoughts since he got sick. I do wonder though, who is this kid who sits in his room all day and plays World Of Tanks and Minecraft and gets lost in YouTube videos? Who is he really?

On our way up to see Dr. N. on Thursday the sadness of those questions overwhelmed me and I thought that I ought to start getting to know my son. The thing about Thomas though is that he's very short spoken (if that's a thing). You ask him how he is and you get,

"Fine."

You ask him how his day went and you get,

"I don't remember."

You ask him what he thinks of something and you get,

"I don't know."

He's actually very hard to talk to but I thought I'd start with the big questions and see if I could open a dialogue about the bigger things in life. I asked him what his dreams were for himself and he said he wanted to go to college. I asked him what he wanted to study (which I knew this but thought I'd ask anyway hoping it would open the dialogue more) and he told me he wanted to study political science. Whenever he tells me his area of study I recoil in a way because I know why he wants to study that. I know the reasons behind that degree and I know it's fueled by his illness. I hate that because I would like for him to dream somewhere beyond his paranoia and delusion-filled mind but even that day, when I wanted answers about his dreams for the future, I had my answer already and I was so disappointed. I guess what I wanted to hear was something more in line with wanting a family or having a job that made a difference in the world. I know, who am I to say that his schizophrenia filled thoughts won't somehow make a difference but I wanted to hear something healthier come from that mind of his.

I then asked him how he saw himself in the future, like where he would be in 20 years, and I was met with a long silence and then,

"I don't know."

Were my questions too big for him? I don't know but I felt a desperation to hear something more from him. So, we rode along in silence listening to his music that he had chosen for the ride and as I listened I realized the songs were telling me a story about his state of mind. A lot of them were about feeling frustrated with the world and with himself. Some talked about how tired he was of life and how scared he was. Some were throwbacks to a time he sees was a good time in his life (the 90's) and some were just downright funny songs. I realized in his music, in the conversation-less ride, he was telling me exactly who he is and what he feels. I had a window on his world and yet it gave me no solace because there seemed to be so much turmoil in those songs and consequently, in his mind.

I came away from that drive knowing little more than I already did about him. Short of asking him his favorite color or his favorite food, I really had nothing more than I already knew and what I know breaks my heart. Perhaps what I mourn about him having this illness is that there used to be so much light behind those brown eyes of his, so much promise. He was going to join the Navy and work in submarines. He was going to marry and have kids and he already had their names picked out. He was going to be so many things and yet this illness took those things from him.

So, honestly, I don't really know what I would write about him if he were to leave this life. I don't want his life to be a reflection of this nasty, unfair illness and yet, true to form, it has it's grip on my boy's mind and it's tenacious and apparently determined to be the one that decides who my boy will be and what he wants in life. I know one thing for sure though, what it doesn't have is love. Like fairy tales say, good always wins over evil and love will light any darkness. If I were to lose him there will be one thing I will have that nobody and nothing can take away from me. I will have his love, his heart, his rare but beautiful smile and I will have the hugs he asks for constantly. Love lights our darkness and if schizophrenia is the evil in this scenario, I know that I will never stop fighting it with and for my Thomas.

Saturday, March 22, 2014

Rate The Therapist

I thought I would jump in here and write today because yesterday was a very rough day and somehow I managed to keep going through it all and I thought this morning that if I can get through that, forcing myself to make the right decisions for myself and my family, then I can be here writing for you guys. I'm hoping that jumping back in to writing will get me back on track somehow. As I said yesterday, I miss you guys and I know some of you want me to continue to tell Thomas' story and mine so here we go. What I want to share with you today is something funny that happened before Thomas' therapy on Thursday. Even through my sadness about my dad I am still laughing about this.

Here is what happened.

As many of you know, Thomas' therapist and I have had some rough times lately with him seemingly overstepping certain boundaries with his newfound beliefs or by passing along information that I personally don't think is appropriate. I have written a few rather angry emails to him and stood my ground both for Thomas and for my own beliefs about how I think Thomas' treatment should go. I took the risk of alienating the therapist with my strong views but me being me, I just couldn't let it go and so I didn't which made for a few tension filled therapy sessions.

Well, on Thursday as Thomas and I sat in the waiting room, the therapist's secretary walked by us with a paper in hand. She took it into the therapist's office and this is what I heard,

Secretary: "Should I pass this along?"

Therapist: "Yes, go ahead."

Secretary: says something I can't hear.

Therapist: "Well it is on the honor system but I say yes, pass it on."

Now, I generally listen to the exchanges in the office and they're mostly general business stuff so I didn't think much of this exchange either. Then the secretary came out of his office and walked up to me and thrust a piece of paper at me.

"Melanie, will you do this for us please?"

I took the paper and looked at it. I barely had time to look at it before she handed me a fast food gift card. I said "thank you" and handed it to Thomas along with the paper. He looked it over and handed it back. Then I started reading.

What it was is a request for me to go on to various web sites like Yelp and Health Grades and rate Thomas' therapist. The deal with the gift card was that they were compensating me for my time that it takes me to do all of that. I didn't feel right about the compensation because this is something I would happily do on my own.

Oh my gosh though I just sat there laughing so hard inside myself. Could it be? Could Thomas' therapist, who I had many times butted heads with, be giving me carte blanche to say my peace publicly about who he is and his skills as a therapist? Could he really be trusting me with this? The truth of the matter is though that I do like the guy, he has stuck by Thomas through everything and despite he and I having some run-ins, I think he's a good therapist that always has his heart in the right place for him, it's just that I don't agree with him all the time. So, here I was presented with the opportunity to say my peace and it is my plan today to do that.

I took the paper with me into his office when he called both Thomas and I in there. I wasn't going to miss an opportunity to lighten the mood about all of the tension from our emails and sessions. So, I waved the paper at him and I said--with a twinkle in my eye,

"I think this was awfully brave of you to give me, of all people, an opportunity to rate you publicly. After everything we've been through I would have thought you would want to shut me up."

He smiled at me and thanked me for agreeing to do it and I knew that he trusted me to put my opinion out there and not tear him to shreds.

Since I received that paper with all of those websites on which to rate his skills, I have actually felt a bit honored that I was asked to do it. When I think about it, we have a history, a long one, 6 years to be exact, and when it really mattered, and even when it didn't very much, he was and is a good man with nothing but the best of intentions towards Thomas and I.

So, I will be honored to write my reviews. I will say good things about the man who has gotten my son and even myself through some pretty terrible times and I will do it with grace and honesty because that's what he deserves.

Wednesday, March 19, 2014

The Processing Begins Now

I am sitting here this morning like I have done every morning since I started this blog and I want so desperately to write but I can't seem to be able to. The fact of the matter is, I am now so overcome with grief about the loss of my daddy and I can't see my way past it. I think I was somewhat in denial about losing my daddy because it's only been in the last couple of days that my life has come to a halt and I stand in the middle of rooms unable to get myself to do anything but hold my head in my hands and cry.

The day he passed I got "the call" at 3:51pm and it came from an unknown number and I almost didn't answer it. When I did someone said my name and then paused. That pause seemed like it lasted forever. Then I said, "What?" and the woman finally spoke and identified herself and told me how sorry she was but that my daddy had passed away. I felt my heart and mind crash to the ground slamming into something solid that I don't know what that was. I know now that is was my world coming to an end. The next thing out of her mouth was, "are you with your mom?" and I knew then that I had to suck up every ounce of everything I had, my strength, my rationality, my ability to move and I needed to get to my mom immediately. I told Thomas that "something was wrong with Grandpa and I needed to go get grandma" and out the door I went. I drove over to her house and found her crumpled on the floor screaming, "NO NO NO!". There was no time to think or to feel what ever I might be feeling and I got her in the car and drove up to my daddy's. Once there I went with her into the care home and we met the coroner and the police officer on the scene. I was outside of myself watching as I politely introduced myself to the coroner and the police officer. I was calm and in control and then went to my daddy's bed and sat with him. He was gone. I could see it. There was no life, no color, no nothing but his shell and I knew he was gone for real. Then I knew that I had to call my sister so I calmly got up and went outside to make the most horrible call you ever have to make to someone and that is to tell them that their loved one is dead. I'll never forget telling her and I'll never forget the sound in her voice as a quiet, almost like a little girl voice, responded to my news with a, "what?" Just like that I stopped her world just as mine had been stopped minutes before. Then the coroner came up to me and started talking to me. I must have looked like the only one in control of the whole thing because he started to talk about the business of moving my daddy to the funeral home and what would happen. I didn't hear a word he said though I sounded like I had everything under control. Then I went in to find my mom and she was surrounded by people so I began to make calls to all sorts of people. With a calmness I don't know how I mustered, I called so many people and delivered the most awful news that can be delivered. Over and over their shock assaulted me and I felt at a complete loss, unable to console them. I stood in the middle of the lobby of the care home and a worker there came up to me and rested his head on my shoulder, overcome with grief. I reached up and touched his face and rested my head on his and I comforted him.

I didn't shed a tear.

Not a single one.

I was in business mode and it was my responsibility to get things done, to console those who needed it and I needed to get back to my mom's side. I never once got even one moment to process what truly was happening. My daddy was dead, my mom was brokenhearted and so many many people were in shock and needed my advice and my answers about what to do next.

The afternoon turned into night and I found myself at my mom's trying desperately to calm her and failing miserably at it and I lay beside her holding her and praying to God that he help me through this, that I was only one person and that I didn't think I could do this alone.

I tell you all of this because I want you to understand what happened to me. From the very moment I got the call that my daddy had passed I didn't even have one second to process my own grief. I tell you this because I believe all of that day and the days following where I seemed to be handling things fine has now caught up to me and I am tired and crying and my mind has abandoned me except to function in the most minimal of capacity. I sit here this morning wanting to write about Thomas, wanting to write about schizophrenia like I always do but this morning I have nothing left to give. I am able to write now because I am telling you what happened that awful awful day but I write it merely to illustrate to you my point that in those terrible moments after my daddy's passing I was unable to process it and now, now I am processing it and I am quickly running out of fuel to help me do anything in my life.

I am writing this morning to let you know that I'm going to take a break from writing for a while. I am afraid though that I will lose all of you since I won't be writing about Thomas and our journey for a while. I don't want to lose a single one of you because you have been amazing and I know you care about Thomas and how he's doing. I really hope you'll stick around and give me some time to grieve. What I will do for you though is post articles and videos that I find because I find things almost daily that would be of interest to you. My presence here will not disappear completely but our personal story will for a while until I find my creativity again and have my heart back here with you and not so wrapped around my daddy that I can't think of much else.

Please forgive me and please give me time and most importantly, please don't give up on me or this blog. I'll be back, I know I will but for now, I need time to process what just happened.

Tuesday, March 18, 2014

Everything's The Same

While I've been away wrapped in my own grief (which hit me hard a couple days ago and hasn't dissipated), I haven't been close to Thomas. It isn't like I haven't seen him but I haven't been tuned into him because I've been trying to get through a day without crying and without the last images of my daddy that I have replaying in my mind over and over. I have taken a somewhat "dangerous" point of view concerning Thomas because really, I haven't kept an eye on him.

On Sunday he worked the first of 4 shifts this week and I was over at my mom's going through my daddy's things so Thomas was left to deal with his "time anxiety" alone. My husband was around but he's not helpful with these sorts of things with Thomas so Thomas was really captaining his own ship. While at my mom's I got a text from him telling me he had his "time anxiety". I coached him to take a lorazepam if he needed it but left him to make that final decision. Then next came from him that he didn't know what to have for dinner. Once again I coached him through finding something but he was left to prepare it himself. The reasons for not being there for him during this time were twofold. One, I didn't want to leave my mom alone to deal with what she was dealing with and two, Thomas talks so much about moving out, I thought it was a good idea for him to try to do something that he would have to do if he were independent from me. As it turns out, he was able to get himself together and I came home in time to drive him to work.

Last night was night number two of work. He worked these last two nights in a row which last week, backfired. I was home this time so I helped him put together a meal. What is so difficult for me is that his "time anxiety" is so bad that there is no reasoning with him. He ended up eating at 3:30, a good 2 1/2 hours before his shift. I didn't have the energy to push him past that early dinner to a later time so that he could live through eating later and see that he had enough time. I know that without me challenging him a little he will never learn the successes he so desperately needs to learn. I promised him that he would be on time to work but he remained stone-faced and so I asked him,

"Do you trust me when I tell you that you have enough time and that it's going to be ok?"

He said he did but again remained stone-faced which indicated that even though he trusts me that he still feels anxious. I am at a loss. Between his therapist and I we have not been able to break through this way of thinking of his so in a way we are all slaves to this bully named "anxiety" and we're all left throwing our hands in the air and walking away so-to-speak.

Then on his way to work I ran through the questions that I do sometimes about his symptoms. As usual, of course, his anxiety was high, his voice was still talking and his paranoia at work was still the same. A defeat, especially since we had doubled his dose of Latuda. I asked him if he felt his medication is working and he said,

"Everything's the same."

Oh.

Great.

So here we are in the same place we've been for weeks now. No rest for the weary. It's crazy to me. Everything's the same and yet it's so different too. I had been on overtime trying to manage my ailing daddy and trying to keep Thomas on his feet just weeks ago and now my daddy is gone and still Thomas is the same. I guess that saying "the more things change, the more they stay the same" is very appropriate for this new phase in life. My daddy is gone but Thomas is still sick, still anxious, still hearing voices, and still paranoid.

Saturday, March 15, 2014

My Angel In Heaven

After two weeks of scaring myself to death with worst case scenarios (thanks to Google LOL) I am happy to say that what is wrong with me isn't the worst case scenario after all. It turns out that what was causing me pain in my pelvic region was a cyst on my ovary. For educational purposes, the ovary is the size of an almond and in my case the one situated on the left side of the body is surrounded by the lower region of the bowels. When an ovary has an abnormality like a swollen cyst it will push on the surrounding organs (including the bladder) and cause a great deal of pain. Since there is no room for anything other than what's already there, when a cyst forms the body protests it by feeling pain. So, all of my pain was brought on by a cyst that formed on my left ovary which was found in my ultrasound. These sorts of things happen from time to time and the body just reabsorbs them but sometimes they're tenacious and the body has to work harder to rid itself of it. Such was my case however I am happy to report that my symptoms subsided and the clearing up of the cyst was reflected in my CT scan. Apparently this is a common thing for the body to do (form cysts) but sometimes they go awry. I am told that this could happen again and if it does, I will have to have my left ovary removed but luckily the surgery for that is laparoscopic and would be easy to handle. So, there you have it, I live to fight another day or in my case many days, weeks, months, and years into the future. I am back on my mission of getting the word out there about schizophrenia. :)

I titled this post "My Angel In Heaven" because since my dad has passed he has made his spirit known to me by sending little signals to me that he's around. Three times in the last few days a bird has come to me when I was sitting outside in the very early morning and sat on a branch in front of me and just stared at me. I choose to believe that was my daddy coming to tell me that he was watching over me during this scary time. I have seen many more signs of him but won't write about them here but ultimately I feel like he was watching over me and letting me know he is here even though he passed. I posted to my regular Facebook (quote) "My daddy's spirit is more alive now than it ever was in the last months of his life" and that pretty much says it all. I will love him for eternity and I am grateful that I have an angel by my side.

As for Thomas, he seems to be doing really well. He is on that pretty high dose of Latuda and it really seems to be doing the trick. I can hardly believe it since I had lost faith in medication since we started the clozaril. What I am seeing in Thomas is an improvement in his negative symptoms and he reported to my husband the other night, "I feel more alive than I have in a long time." That's saying a lot about how well the Latuda is working. I am cautiously optimistic though because with each increase in it he enjoyed a few really good days and then he would go back down hill again. I'm hoping this high of dose will stick with him for more than a few day or weeks. I'd like to see a year of remission but time will tell what we will be given as far as that goes.

Yesterday he went to pick up his schedule for work and got in the car and announced that he works 4 days next week. My mom was in the car with me and she and I both grew silent. 4 days. What happened to the conversation I had with Richard? Weren't we shooting for just 2 days and asking not to have 2 days in a row? As it stands, Thomas works Sunday and Monday and then Wednesday and Saturday. He is reluctant to go speak with Richard about cutting back his hours so I told him to go ahead and see if he can work the hours as they are. He is so anxious about dealing with these sorts of things, like talking to his manager, so since I won't make another visit there myself, it is on Thomas to speak up for himself. If he wants all of those days then so be it but if he needs to cut them back then I will encourage him to have them cut back. I will watch him closely but I am not happy about the hours. I hope that all goes well for him and that his improved symptoms from the Latuda will help him get through such a busy work week.

Wow! What a week this has been! I am calling it "good" and moving on. Life is still moving forward and there is much to look forward to and conquer. Fortunately I have my own good health with which to do that with. So, onward and upward!!!

Thursday, March 13, 2014

A Little Bit Of Everything

Thank you all for your best wishes and prayers yesterday on my post about my lesion. They all mean so much to me. The funny thing about all of this is that I am quite zen--well, except about the barium, that stuff is nasty to drink and caused all of my anxiety yesterday because I was dreading it. Other than that, whatever this lesion is, I feel like it's going to be ok. It may be something serious but I feel like I'm going to handle it all ok and come out the other side with yet more strength and faith. There must be a reason for all of this because otherwise I can't understand why God would just keep throwing things at myself and my family.

As for Thomas, two things, I haven't told him about the lesion yet. I really don't see any point in causing him stress and I know he'd probably go to the bad place with it and think the worst possible thoughts. I don't want him to feel for a second that he might lose me. If this is something serious, I want to be sure he finds out about it in the right way and right now isn't the right time.

Second, he is now on a pretty high dose of the Latuda. He appears to be tolerating it well except for the expected heavy sedation after taking it at night. I was a bit nervous to jump it from 60mg to 80mg and then to 120mg in less than two weeks but Dr. N. and Thomas and I discussed it and we decided to go "all in" and give it a try. With everything going on though I haven't had time to spend with him to see how he feels about it and how he's doing. I'll be home with him today so I'm going to check in with him about his voice and his mood. I think I can count on the Latuda to lift his mood some more but I don't know about all of the positive symptoms and whether or not they'll change. He works tonight so it will be a real test for him. Not only does he work but I have my CT right at the time I'm supposed to take him to work so obviously I won't be able to which means Thomas will have to count on his dad being able to get away from work in time to get him there. Any waiting that he will have to do not knowing if he has a ride will increase his anxiety. I hope that all goes as planned.

Well, today is a big day. My sister leaves today so I need to get ready and go see her off then at 2pm I have to drink another lovely bottle of barium (they're HUGE!!) and then my CT is at 4:30pm. I also have to get an IV contrast done and I've been told some nightmare stories about the stuff so I'm praying it doesn't affect me in those same ways. Either way, with all of this stuff I'm drinking and getting pumped into my circulatory system, I ought to be lighting up that CT computer screen like Christmas lights LOL.

Have a good day everyone and please know that I see all of your responses to all of my posts and I am listening to everything you say and taking it all into consideration. I appreciate your input into mine and Thomas' life and you have helped me countless times to reframe my thinking.

♥ Thank you ♥

Wednesday, March 12, 2014

Never A Dull Moment

Today my post is going to be about my own health because I wanted to share this with you because you have been on this long journey with Thomas and I for so long and I know that some of you care about all aspects of my life.

I don't know if you remember but I told you (I think) 2 weeks ago that I had very bad pelvic pain. Well, I went and had a full pelvic ultrasound done. While I was in the little, low lit room with just one technician, she was busy typing things once she got to my left side. Within minutes another tech showed up and the two of them did things and spoke in quiet whispers while they worked. I tried to rationalize the second tech being there by saying to myself that she just happened to show up at a random moment or that maybe the machine was malfunctioning and she was there to help fix it. I didn't want to go to the bad place with her arrival.

Afterwards the original tech walked me out of the room and she said to me in a seemingly weird/sad way,

"Do you have someone here with you?"

I felt a foreboding because I had just been through what I went through with the two techs and then let myself think for just a second that something might not be right. I told her I had my mom and sister with me and she walked me all the way to their side. That didn't help my now growing anxiety about the second tech being in the room.

I was supposed to wait until this Thursday for the results but then yesterday I got a call. It was from a doctor in my GP's office. I normally see a nurse practicioner and speak with her so when the doctor called I was a bit uneasy. She matter of factly informed me that they found a lesion during my ultrasound but because of the way my organs lay in my body that they can't be sure whether the lesion is on my ovary or my bowel. Consequently they wanted me to go in right away for a full contrast (oral and IV contrast) pelvic CT scan so that they can be sure which organ the lesion is on. I set up all of my appointments with her and hung up the phone. I was sitting there with my mom and sister when the doctor called and based on my half of the conversation, my mom had broken down in tears. This kind of thing is not what she needed having just lost her husband.

You know what keeps running around in my head? The call wasn't to say that I was fine rather it was to say that there is definitely a lesion but they just don't know where it is. Either way, either organ, that's not the best news to receive. Either way, either organ, a lesion now exists. What it is I don't know but I am not happy it's there.

So, I go in tomorrow for my Pelvic CT complete with having to gag down the lovely chalky barium (I'm dreading that more than anything LOL) and I will get my results on Friday. It's probably nothing serious but the word "lesion" and "full contrast pelvic CT" are not words a person really wants to hear especially since I just lost my daddy and Thomas is not stable. One thing's for sure, in my life, there is never a dull moment. No sooner do we start to find a little joy in the day without my daddy and no sooner do I get Thomas to a therapeutic dose of his Latuda than this whole "lesion" thing pops up.

I can't help but think, if there is something wrong, I have my very own angel (my daddy) watching over me through it all. ♥

Tuesday, March 11, 2014

Friendships And ‪Schizophrenia‬

Yesterday I talked to Thomas about whether or not he had been in contact with his best friend. His answer?

"I'm waiting for him to contact me."

 We had a discussion about how in order to have a friendship, he needs to do the contacting himself sometimes. We kind of argued over this and of course it was left just as it had started. He was going to wait to hear from his friend. I don't know what to do with that. I got to thinking, how does he get a proper social life if he hides from the normalcy of one?

The thing is, without his best friend, he has no social contact at all with a living, breathing person outside of family and work. He doesn't have friends at work and he barely works anyway so essentially he is very closed off. He has a "girlfriend" too but they met over the internet, have not exchanged pictures even and they don't know where each other lives. She is not on Facebook so I can't get to know her myself and I know that their relationship is largely based on role playing characters from a game, I think.

I got to thinking, how will he become a well-rounded human being if he doesn't have a social life? What will happen to his future if his life consists of his bedroom and his computer? I thought to myself as I hugged my husband yesterday and told him I loved him, that Thomas doesn't even have that with his girlfriend and I can't see how he ever will if his entire life is lived in a virtual world.

So, what do I do? Is there anything I can do? I had already crossed a line, of sorts, by going in to his work and talking with Richard and so am I expected to call his friends for him and set up a playdate? I am being sarcastic of course but seriously, what do I do? Thomas has so much life ahead of him and if his illness keeps him isolated, I don't know what to do for him to help him live in the "real" world. He talks about moving out but I don't ever see that happening unless he gets moving on cultivating friendships. I have seen a trend recently in his thinking about moving out where he says that he would live by himself. That can't be a good idea, at least I don't think it is. A solitary life with my almost complete absence will be a disaster waiting to happen.

I don't know...I'm truly at a loss here. I want so much for his future though my dreams for him have been tempered by his illness but I wonder as we cruise along with an ever-increasing isolation for him, what's to become of him? I have watched his social life disappear after graduation and his isolation continues forward and faster, a pinprick dot on the horizon and I stand by now, longing for more for him but watching yet another piece of my son disappear.

Monday, March 10, 2014

Facing The Boss

Well, I did it. Well, more like we did it, Thomas and I.

Yesterday was the meeting with Thomas' boss. I have to say that I was very nervous about the whole thing because I wanted to be well-spoken and informative all while being respectful of what Thomas wanted to accomplish with the meeting. He and I had gone over what I was going to say so basically I had the ability to lay it all on the table what Thomas deals with.

We found the manager (Richard) in the store and he led us to a back office. My mouth was dry and I was shaking but I reached across the desk and shook his hand and introduced myself. He looked like he didn't know what to expect so I tried to put him at ease because I knew this was a highly unusual situation for him having a parent show up to speak with him about one of his employees. This is something that I had, several times, wondered if I was doing the right thing but honestly, I am tired of hiding behind the stigma. I write so openly here and I had to reach the point that honesty in that office was a good decision.

I began by saying that it was my understanding that he knew that Thomas had schizophrenia. I told him that I was under the impression that he had been told this by the job rehab specialist. I was surprised when he told me that it had been another manager that had been told first and that they had come to him and told him. As it now stood, all of the managers at Thomas' work know that Thomas has schizophrenia. I wasn't sure how I felt about that given that I had understood that Richard was the only one. I moved forward with that knowledge and that understanding that he was going to pass on some or all of what I was about to tell him.

Since Thomas had left early last Wednesday because his symptoms had reached a crisis point, I began with that, launching into telling him that Thomas had paranoia about crowds in the store and that the security cameras caused him a great deal of anxiety. He nodded his head, seemingly unmoved by what I was saying. I didn't quite know what to make of his silence and decided afterwards that the things I was telling him were probably a lot to process. You can never talk about schizophrenia and its symptoms without people who aren't "in the know" needing time to process what they are hearing. There sat Thomas, freshly shaved and showered and mute and appearing pretty normal and I think that Richard couldn't believe that the kid he had in front of him dealt with what he does.

Then I told him about Thomas' voice and what it says. I saw his eyes widen when I mentioned the voice so I quickly let him know that it didn't command Thomas to do anything and that it wasn't critical. I told him that it was essentially a voice that does running commentary on what he's doing and I broke it down for him by taking advantage of what he was doing himself in that moment and I said "It's like this,"

"You are sitting at a desk."
"You are listening to someone explain something to you."
"You are wearing a name tag."

And so on and so forth. He looked at Thomas and looked back at me and I wondered if I had done the right thing even mentioning the voice. I had gotten Thomas' blessing to tell Richard about it but I was rethinking it. I think that is one of the hardest things for an "outsider" to process because it is so foreign to them. It's hard for ME to process in a lot of ways so I know it must have been hard for Richard too. I also explained to him that when Thomas is in a conversation, the voice gets louder making it difficult for him to follow what is being said. I said,

"If you are talking to Thomas for more than about a 3 minute stretch you will see him drift away and appear like he's not listening. It is important you understand that this is not a willful act on his part and that he wants to be able to focus on what you are saying but it's nearly impossible."

He nodded.

I have to say that it is very hard to have such a serious conversation with someone and have them be essentially speechless. You don't know if you are getting through or if they are busy judging you or they are thinking furiously about how sensationalistic this is and they can't wait to tell others about it. All of these thoughts ran through my head but I pushed on.

Next I explained the medications Thomas is on and how they affect him and the side effects that he deals with. I told him about clozaril and proudly threw out the word "agranulocytosis" for effect and explained what that does to Thomas potentially. I explained that it was considered the "big guns" of schizophrenia meds and that it wasn't working for Thomas. I told him that Thomas was currently in a trial of different meds and that it was going to take some time before he was stabilized. He nodded again.

I ended the conversation by telling Richard that stress will make all of this worse. I told him that with the passing of Thomas' grandpa and the fact that the meds aren't working well and that on Wednesday there were crowds and cameras that he was under an immense amount of stress and couldn't work anymore that night. Richard was ok with that and finally began to speak.

He asked if Thomas would prefer different hours (at a different time of day) and Thomas said he liked the hours he worked. He told us that the store is only employed with part time employees who work 25 hours or less so that was why Thomas didn't have the amount of hours that he normally did. He was flexible about Thomas needing Tuesday's and Thursday's off for therapy and he agreed to schedule Thomas just two days a week probably on Wednesday's and Saturday's. I couldn't have asked for better shifts for Thomas.

In the end, Richard admitted that he was surprised by what I told him. He said he had no experience with mental illness like this and that he had learned a lot. Then a smile washed across his face. Thank God! I apologized about having dumped so much on him but that I felt he needed to know and he said he was glad he did now and that he felt he could now better understand what Thomas is dealing with when he's there. I felt better about the whole thing and we all said goodbye and Thomas and I walked out into the parking lot.

Do you know what the best part of all of this is? As we were walking into the parking lot, I turned and looked at Thomas and he was smiling from ear to ear. I asked him if I had done right by him and said everything right, representing him well. He said he was really happy with how that went and I was so relieved.

Ultimately this is Thomas' life, his job, his illness but I think sometimes he needs me to help him get through it all and I felt like, because of that glorious smile, that I had done the right thing.

Saturday, March 08, 2014

Finding Strength To Move Forward

First of all, I talked to Thomas at length a few different times yesterday about his grandpa's ashes and about his illness. It was a very productive day but very draining. I want a day off but in another way I welcome the onslaught of responsibilities that keep being thrown my direction because it keeps my mind off of the loss of my daddy. Let me first tell you about Thomas and his grandpa's ashes.

During his appointment with Dr. N. Thomas expressed excitement about receiving something of his grandpa's. He clearly needs something to help him cope with his loss and to find some peace. I thought about my post about his grandpa's ashes yesterday and I thought to myself that I had made a mistake not inviting Thomas along to go pick up his ashes from the funeral home. I began a conversation with Thomas apologizing for not inviting him to go along. Surprisingly he wished he had been able to go. I then told him about how grandpa's ashes are at grandma's house now and asked if he wanted to go see them. He does. So I promised him that today we would go over there and see them. I described to him the urn and what it looks like and what its artwork symbolized. He thought that was pretty cool. I told him about how I didn't want to see the actual ashes but that when I finally did, I felt less freaked out. I told him that he could view them if he wanted but if he just wanted to see the urn for himself then he could. So, we will go to his grandma's today and see them. With that visit will come a gifting by my mom of one of his grandpa's favorite items that has a lot of history. For years my daddy worked outdoors in the cold and he wore a hat, the kind that has flaps that fold down over the ears. Thomas owns a cheap version of one of these and loves it so I think having grandpa's will be an amazing gift. I already have items of my daddy's and it helps me to know that I have them so I have high hopes that Thomas having this hat will be good for him too.

Next, and this is where I write at length, I talked to Thomas about his crisis that he had at work on Wednesday. Before doing so I had emailed his therapist about it and he had a bunch of questions so I thought I would sit with Thomas and gently ask him these questions. What transpired from the conversation was very interesting but very heartbreaking. I delved into the voice he hears and discovered that it is with him all the time. He says it had been getting worse but even worse still since his grandpa passed. He described to me that his voice becomes "gibberish" (his word) when he is in a conversation with someone in the real world and it becomes very loud making it nearly impossible to follow a conversation because he is trying inside to make sense of the voice and to carry on an outside conversation at the same time. I could actually see him disconnect from me at different parts of our conversation and I knew he was trying to field the inside and the outside. It tore at my heart to watch him disappear time and again. I also learned that it is much worse at work making it hard to talk to customers and to his boss or managers or co-workers. Not only that but it makes it hard just to do his job and keep focused on organizing product on the shelves. Honestly I feel like I am losing him to this voice and I am extremely worried. He had reported a better mood since the Latuda was added but beyond that the positive symptoms all have gotten worse. What's to become of my boy? After our conversation yesterday with him I think he is dangerously close to a hospitalization so finding a bed at a good place will be something I will look into pretty soon. He doesn't need to be warehoused in our local hospital, he needs a proper place where he can get therapy and coaching for how to manage his voice and to be around other's with schizophrenia so he doesn't feel so alone. I know the chances of finding such a place are slim to none but if ever I need my angel daddy to step in, it would be this time.

As for today, Thomas and I are going to meet with his manager. I have Thomas' blessing to use words like "anxiety" and "paranoid" and I have his blessing to talk about his voice and how it affects him. Thomas is desperate to have his boss know what he's dealing with and with his blessing, I plan on filling his manager in on the full picture. With Thomas calling in sick once and twice not being able to complete a shift in the last 2 weeks, I think his manager needs to understand what is going on with Thomas. Thomas trusts this man and so I will too. We did get Thomas' schedule yesterday and he works only one day next week so I am thrilled about that. I had talked to Thomas yesterday about cutting back his hours and very exhausted from what he's dealing with now, he agreed to do that. Thank God.

Thomas' voice is not critical, he only has one voice but that one voice is driving him insane. Honestly, apparently I've been in denial because I had hoped it wouldn't come to this point.

What happened?

I guess if I take stock of the last weeks and months, what happened is that he got sick, his meds aren't working, Thomas lost his grandpa and now everything is getting worse. There's every reason in the world for Thomas to decompensate but I guess that now clearly maladaptive side of me who likes to lounge in denial, can no longer do that. It's time for me to jump out of it and better face what is really going on with my son.

I am sad. Sad at the loss of my daddy and sad that my son is getting sicker. On top of that I have my own health issues rearing their ugly head so I am definitely being called upon to step up and take action. I'm tired though. Exhausted really but I march forward yet again with the saying in my head:

"You never know how strong you are until being strong is the only choice you have."

God, give me strength.

Friday, March 07, 2014

Yesterday's News

To those of you that mentioned that Thomas' symptoms might be worse because of the decrease in meds and/or the increase in stress, you are all right. We saw Dr. N. yesterday (love that guy) and he sat and talked with Thomas for a long time. I was very proud of Thomas for admitting that his voices and paranoia are worse. I never know when he's going to choose to keep those things a secret so the fact that he trusted Dr. N. enough to tell the truth says a lot about his trust of Dr. N. and Thomas' own character. The general consensus is that the decrease in the clozaril (he is now down to 100mg in the morning and 150mg at night--not a therapeutic dose) is one of the biggest culprits in his symptoms getting worse. That coupled with the loss of his grandpa and the stress related to that are also the culprit. Of course they would be but somehow I didn't make the connection totally. I don't know why. Thomas told Dr. N. that the night he came home from work early was bar none the WORST night of symptoms he has had in a long time. Bless his heart, it was much worse than he let on to me but at least he admitted it to someone. The plan now is to increase the Latuda (he went up to 80mg last night) as quickly as possible with the goal being 120mg at night. Dr. N. is being cautious with the titration because he's trying to avoid any dizziness that Thomas might experience since that seems to be the most disturbing symptom that Thomas complains about. Dr. N. also wants to leave the clozaril right where it is because Thomas is not stable (I'm hating hearing that all the time) so the end goal is the (total) 250mg of clozaril and 120mg of Latuda. I figure it'll be two weeks before we see a change and I am going to do my best to keep calm and wait out those two weeks.

As for things with my daddy's passing, yesterday we brought his ashes home to my mom's. I felt such peace having him there. My mom told me that I could have some of his ashes so the funeral home divided them a little bit so my sister and I could have some. Yesterday, though, I saw inside the urn and saw all of the ashes together and my heart tells me to keep them all together. My sister wants hers to take home with her but I think, for me, that my part belongs at home with my mom. The day after he passed I cried and cried and told my mom repeatedly that "I just want daddy home with you" and I think that is what I want to do. I have his robe he wore the last months of his life and it smells like him and I am happy with that as my memento so keeping him home with my mom seems like the right thing to do.

In bringing the ashes home, I didn't include Thomas in that mostly because I thought he might find it weird. I'm having second thoughts though and am wondering if I should bring Thomas over to my mom's to see my dad's ashes in the urn. Do you guys have any thoughts on this?

As for me and my physical health, I'm not sure if you remember that I mentioned last week that I am having pretty serious pelvic pain. Well, I had an exam yesterday and the doctor isolated the pain to my left ovary so today I go in for an ultrasound to see how things look. I'm a bit scared because the pain is so bad but I'm trying not to let my mind go to the worst case scenario with this. I won't have the results until next Thursday so it'll be a long week of waiting.

So, yesterday was a busy day between my exam, bringing my daddy's ashes home and Thomas' meeting with Dr. N.. I do hope that things slow down soon. On second thought, I kind of hope they don't because I think staying busy has been my saving grace with all that has happened lately.

Thursday, March 06, 2014

Crisis Intervention

For myself, yesterday was hell from the beginning to about 5:30pm. The day included visiting my mom's lawyer to handle my daddy's affairs, a long drive to get to her office and by evening's end I couldn't even breathe anymore, let alone move, so I had to stop everything I was doing and go lay down. I had been going along fine for a day and then my daddy's death caught up to me. This is so hard. It's just so hard...

Consequently because I was out of commission, my husband took Thomas to work. Thomas had had a decent day and seemed pretty upbeat about going to work so when it was time to take him to work I let my husband go ahead and do it since I was down for the count. When I did get up around 6:30pm I asked my husband how Thomas had faired going to work and he said that Thomas had seemed really good. I settled into my evening in front of the T.V. and then the call came in.

I answered the phone and it was Thomas. He was in a panic and told me that he was slurring his words and felt dizzy and nauseated. He had taken his meds all together which hadn't concerned me much when he did it because he had done that a couple times before so I thought he would be ok. He wasn't. I raced to the car pulling on comfortable clothes because I figured we would be spending the night in the E.R..

I got to Thomas' work and pulled up to the front door and watched him as he walked out to the car. He was a little unsteady on his feet and the panic grew even larger inside of me. When he got in the car I questioned him about his symptoms and while I could hear a little slurring of words and he was reporting some concerning physical symptoms, my worry dissipated a little bit and I continued to ask him questions about what had transpired at work. As it turned out, the larger problem wasn't the (yet another) scary medication interaction but instead, he had an episode, or rather a huge spike in paranoia and anxiety.

When I got him home I monitored his blood pressure which dropped quite a bit over an hour's time but then recovered. I went into his room later and talked to him about what had happened. As it turns out there had been too many people in the store and he had become quite paranoid about their (to him) dangerous presence. He had also become fixated on the security cameras and both of those things swirling together caused what I considered a crisis episode for him. I sat and talked to him about that and about his medications and I watched his eyes shift away from me a couple of times and he disappeared from our conversation. I finally asked him,

"Are you hearing voices right now while we're talking?"

He looked at me, kind of embarrassed, and admitted that yes, they were taking his attention away from me and the conversation. He had never done that before, never admitted that to me and I knew that because he was admitting to them that they must have been bad. There he sat in front of me boiling with level 6 paranoia and voices consuming him. I couldn't believe this was happening. Had all of the last few days since my daddy's passing caught up to him?

We talked a while and I told him that working 3 days a week just didn't seem to be right for him and he agreed but he wanted to be able to make some money to be able to go over to the little convenience store by our house and get snacks. He also wanted the ability to pay for a model that he wants to build. We also talked about him moving out and he seemed to come around to my way of thinking that he is not yet ready for that. I told him,

"What happened tonight was a crisis situation Thomas. That said, had you been in an apartment alone or with a friend, what would you have done?"

He didn't know.

I told him to put moving out out of his mind and he agreed that was probably a good idea. The night's paranoia and voices had scared him (and me too) and we agreed he was not yet stable enough for anything other than just trying to get through a day. I asked him if he felt the medications were working and he said that he felt they were because his mood was better. I asked him, though, how did he feel the medications were doing with helping his paranoia and voices. Obviously he felt, especially because of the spike in paranoia, that they weren't working for him and then he said,

"Mom, the voices are getting worse."

My heart sank. With all that was going on with my daddy I had, yet again, taken my focus off of Thomas and in doing so had missed the signs of him getting sicker. This is how it always happens and now, here I am again. What happened here? What happened to everything. Last week at this time my daddy was alive. Last week at this time Thomas had come out of therapy and it had seemed to me that he was doing ok. Now here I am, my daddy is dead and my son just had a schizophrenic crisis and on top of that is reporting that his voices are worse. What happened?!?!?

So, today we see Dr. N., thank God, and we will let him know what happened last night and about the voices. Honestly, I am so tired. I am just so tired. I imagine we're looking at yet another medication adjustment and coupled with that I will continue to find a way of living without my daddy. Life is really testing me right now, testing Thomas, and I pray at some point we're going to pass and be able to get on with it.

Wednesday, March 05, 2014

How It Is In The End

Thomas' therapy was yesterday and I ended up invited in yet again. I was apprehensive about going in because I felt that it was Thomas' time to talk about his grief about his grandpa's death. His therapist ran through a litany of questions and even, though he's not my therapist, he asked how I was doing and made me rate my grief on his famous 1-10 scale. At the time I was quite numb about the loss of my daddy so I rated myself a 2, on the low end of feeling the sadness of his loss. Before that though, he asked Thomas to rate his own sadness and Thomas said he was a 2. Huh. That surprised me. A 2. A lot of things ran through my head about that number, most of them centering around wondering how much denial he was in. Then the surprise came to light. Who my boy grieves for is his grandma. I don't know why I didn't see that as his sole source of grief but it began to make sense as we talked.

Thomas' therapist is often worried about the lack of decent fatherly influence in his life. He asked Thomas if his grandpa had taken him fishing or skydiving or did fun things with him. Thomas shook his head "no" to every question. Then he said it,

"I just wasn't very close to my grandpa."

It's funny because all of these years I thought, I guess, that because I saw my daddy as my sun and moon, I somehow believed that Thomas saw him the same way. After Thomas talked a little I began to better understand his grief. Of course he hadn't been close to my daddy. They had never gone to a car show, my daddy had never offered up much grandfatherly advice and most recently he had been too sick to even attend Thomas' graduation. While the graduation thing was understandable it was evident that the key to Thomas now lack of grief was that in reality what he was saying was true. His grandpa just hadn't been there for him. This had always been a source of distress for myself and my mostly my mom because she and I both wanted so desperately for Thomas to have a steady, consistent male influence but the truth of the matter is, and this is no disrespect to my daddy after his passing, that he just hadn't been there for Thomas. That is ok. That is the way he was and that is ok. Between Thomas being abandoned by his biological dad and his step dad not stepping up in a big way, my mom and I always wished my daddy would step up in their places but sadly he didn't. For Thomas though, he had known only his grandma and I as his main source of emotional support and he had grown up knowing a great love for him from his grandma and I. He's been missing something very important in that the male influence was lacking, but what he did have was a much more complete and tender love from his grandma and I.

At the end of my daddy's life, Thomas and I went over to his grandma's and we all sat together and cried. I had never seen so much emotion flow from my boy and at the time I thought it was because he was missing his grandpa so much. His emotion that night though came for his beloved grandma who was grieving a terrible loss to her and Thomas' concern, Thomas' care, Thomas' tears were for the grandma he loved so much and his heart was broken for her.

I came home yesterday after a very difficult day and Thomas came to me for a hug and his one and only question for me was:

"How is grandma?"

Above all else, even above my own feelings about my loss of my daddy, Thomas cared most about my mom's well-being and found solace in my answer for him:

"Grandma is having a very hard time. She lost her husband of 45 years and it will take time for her to deal with that. But kiddo? She's having good times too. She is strong, she smiles and sometimes she even laughs. She will be ok and she loves you so very very much."

So how it is in the end for Thomas is that he will grieve for his grandma who he loves with all of his heart, who bakes him lemon sugar cookies, who stops by the house at random times just for a hug, who takes him out for burgers and shakes, who had showed up at every visitation time when he was in the hospital, who listens to Thomas even though at times he is delusional and listens to those delusions and with a gentleness that even I can't seem to muster, she works through his thought processes and while not always successfully, she does it with a grandma's pure love for her grandson and it is all of that that Thomas appreciates and loves and it is her broken heart that he grieves for.

Tuesday, March 04, 2014

No Title

I don't want to leave you guys hanging so I thought I would write a little something today.

It has been very hard without my daddy in my life. My sister arrived late last night and it made his death even more real because now there's another of us that is grieving. I sat by as she cried broken hearted tears and I felt terrible for her. She's been clear across the country since my daddy died and I know it was so hard for her not to be here. She left here just recently, in fact, the day before he died so she had had some final moments with him but then got home and had to turn around and get right back on a plane back to us under the most terrible of circumstances. It has been a long journey for her.

Today my mom, my sister and I go to the funeral home and pick up the things my daddy was wearing when he died. This is going to be so hard to do. Without his jewelry and clothes he will just be a man in a cold room, the shell of the man I love with my whole heart. That thought is a terrible one because all I want for him is to be back in his room in his fuzzy pants and cozy warm and asking me about my day. All of the things we need to do to say goodbye are so painful.

Mornings are hard for me.......

As for Thomas, he has therapy today. Last week before my daddy died we had moved his appointment up never knowing that the reason he might need it was to work through his grief. I am thankful he can go today and I pray that his therapist can offer him something to help him grieve.

He has done ok in the last couple of days and even went to work last night. He had to take his maximum dose of anti-anxiety meds but he bravely went to work. He is a strong young man and I am proud of him. My mom has been searching for an idea of something to give him of his grandpa's and finally settled on something amazing yesterday. All my life my dad wore this gold and black onyx ring with the family crest from his side of the family on it. He had worn it so that the gold was worn thin and now needs reinforcement. My mom will get it reinforced and will give it to Thomas as a gift. The reason that it is such a great gift is because it was something my daddy loved a great deal plus Thomas loves family history and to be able to wear the family crest on his finger will be something he will be able to cherish the rest of his life. I look forward to the day that my mom presents that to him. ♥

That's about all for me for now. I am tired and I have so many important things ahead of me today so I need to get myself out of this chair and go on with my day. I'll check back in again as soon as I can. Thank you all for bearing with me during this very sad time in mine and Thomas' life.

Saturday, March 01, 2014

Thank you

Thank you all for your kind words of support. They mean so much to me. I wanted to let you know how Thomas is doing. Breaking the news to him was so hard because we had had a talk a while back about how he felt he had missed saying goodbye to his great grandfather. They weren't really close but it was his first loss. He cried such sad tears of regret during that talk. I knew after that that ...he would feel even greater regret not having spent more time with my dad but it was so hard for him to see him declining. I wish he had the strength and life experience to know that that is OK, that it is hard for a young man to watch someone slowly decline. He is so sweet and sensitive so it was very hard for him. When I told him last night about his grandpa he was stunned. I watched as he quickly disappeared into his mind. I needed to go back to my mom's to be with her and he wanted to go with me even though I warned him it would be painful to see his grandma mourning but he bravely went anyway. We sat in my mom's living room and all of us cried, including Thomas. As heartbreaking as it was, it also gave me some peace to see him expressing emotion. I didn't want for him to hold it all inside and try to be strong.

Today he is a little better but was scheduled to work. He had a brave face on earlier and told me that he wanted to work so I let him be with that. He just came to me though and said that he didn't think he could work tonight. Thank God because I didn't want him there tonight fighting what must be insurmountable anxiety and grief so he just called his manager and he was excused from work for tonight. I am so grateful for his employer's flexibility and understanding with Thomas.

As for me, I am at a loss. My dad died instantly of a heart attack and it was a shock. He had been so loving and responsive to my affections towards him in the last few weeks and I see now that was a gift he gave me because when I would think of him dying I was afraid he would go not knowing how much I loved him or that I would lose him feeling like he didn't love me. I have peace knowing that he left this life with the love in his heart we all wished for him.

I am stunned right now and in a daze but I consider you all family and as such wanted to let you know how things were going right now. I'll be here and there over the next week or so but I will keep you up to date as much as possible with how Thomas is doing.

Thank you all again. I don't know what I would do without you.

Much love,
Melanie

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