Tuesday, March 31, 2015

The Perfect Storm

Last night everything that makes a perfect storm happened. Last night I completely broke down and cried tears of grief, of anger, of resignation. Last night I saw my world and Thomas's world implode and I realized, once again, that schizophrenia is alive and well and is not going anywhere.

Ever.

Today I am too tired to write. Too tired to face again what I felt last night by writing it all down now.
I lost all hope last night.

I am adrift in a vast ocean, a piece of driftwood, unable to find land on which to rest. Our family's seasons have changed and we ALL face, yet again, the harsh realities of this illness.

I hate it. I hate this illness. I hate how unfair it is to Thomas and I hate how unfair it is to both myself and Dan.

Right now I don't know how much longer I can take this. I'll take it but I don't know how long it'll be that we'll all feel cracked and broken like we are right now.
If hope were a rope, a lifeline if you will, someone yanked it up out of the pit I am in leaving me in the blackness of a deep hole.

Schizophrenia is one of THE MOST unfair and cruel illnesses in existence.

Monday, March 30, 2015

White Flag

You all know what happened in Thomas's therapy a couple weeks ago. You all know the hurt and anger I felt. Well, I write this today to show you that a white flag can be raised and everyone can join together for the good of Thomas and his mental health.

Before therapy last Thursday I decided that I had to at least email Dr. K. and let him know what was going on with Thomas during the week prior to the session. I couldn't give up my role as a mom, caregiver, and partner in therapy. Within a couple of sentences I said that I didn't want to get in the way of Thomas's therapy and that I wouldn't be there that day so that he could have quality time with Thomas. I relinquished my previous role because I felt it was best for Thomas, for one, and secondly, I didn't want to be anywhere near Dr. K. and have to restrain myself from saying anything. I didn't want to cause Thomas any grief so my being absent from therapy and even not showing up in the waiting room seemed like the best idea. That is until I received an email back from him saying,

"I for one do not feel that you are in the way when you attend the sessions and I appreciate the continuity of care for your son."

There was much more to the email but what is written above was key for me. I know that Dr. K. is a part of my blog so I figured he would have read all of the things that I wrote and maybe even your comments. He took a hit, at least if it were me I'd be feeling like I took a hit, and I think he got how much I hurt and how angry I was. I very much appreciated your support but I had to have some sympathy for him after reading the comments. If the chances were that he had made a mistake, said things that weren't probably the nicest things to say, and didn't realize the effects that session had on me then reading my posts and your comments probably stung a little bit. A few of you even suggested I dump him as a therapist and find someone else. The truth is, barring this last issue and a couple before, he has been a wonderful therapist for Thomas and Thomas likes him. I didn't plan on dumping him and probably never will. People make mistakes and if they atone for them then they deserve forgiveness.

So I got that email (quoted above) and I decided that I would go ahead and go into the waiting room. I felt like I needed to look Dr. K. in the eye and gauge how things were between us now after everything. He came out of his office and smiled and said hi to both Thomas and I and lo and behold, HE INVITED ME INTO SESSION!! Thomas was halfway to the office before I got up and I followed him in. Once inside, before even sitting down, I stopped Thomas, made him look at me and I asked him,

"Are you sure you want me in here?"

He said yes and I started to sit down. Then I stopped. There was still the issue of his fear of me being mad at him so I asked him,

"Will you be worried that I'm going to be mad at you?"

Well, previously in the car, we had been talking about whether or not he should take the time off from work while I'm at the conference and I had told him I didn't think it was a good idea. While he had agreed with me at the time, in therapy now, he changed his mind and was hoping Dr. K. would support him in his decision to try to get the time off. He was worried I was going to get mad at him choosing to do that. I told him I wouldn't be mad (and ultimately I really didn't get mad) and so I sat down in my usual spot, a low chair that's really squishy and hard to get out of. There would be no escape for me.

Session went well though we never covered Thomas wanting to take the time off from work but we still got some business done. Peppered in amongst all of the conversation were comments from Dr. K. after asking my opinion on something like,

"You're the expert, I want to know what you think."

I heard that enough in session that I finally couldn't help but roll my eyes when he said it. I am NO EXPERT by a long shot. Even as a caregiver and mom, I am not an expert. I fly by the seat of my pants just as much as Dr. K. does only I'm privy to more information than he is. But EXPERT?

Uh......

No.

What matter most in all of that, though, was that he wanted my opinion. He wanted me to share my observations and thoughts and as such I didn't hesitate to do so. "Amazingly" my thoughts were useful and we learned a lot about Thomas and some things he's struggling with.

So there we were, a team again, and I left therapy with Thomas, both of us in a better place in our relationship because the session had been a joint session. Best of all, and most important of all, Dr. K. had raised the white flag and made it possible for me to be a part of Thomas's treatment team once again.

Saturday, March 28, 2015

The Boss With A Secret Of Her Own

Yesterday turned out to be the MOST UNEXPECTED day. I found my courage to go and talk to Tami and I found it because of Thomas. I asked him to place the call to Tami and request a meeting and he did so by telling her,

"My mom and I want to talk to you about my mental health."

I thought that was so brave of him to do and I thought that if he could place a phone call (something he's often scared to do) and then admit outright to his manager that it concerns his mental health, then I could get my act together and go through with this meeting.

Before going I did contemplate calling Opportunities Unlimited but I fought with the thought that it might come across as threatening to his manager. I felt this because it felt like bringing in the cavalry when perhaps all it would take is an informed discussion about Thomas and about schizophrenia. In the end I decided not to involve Opportunities Unlimited.

Before going I thought it would be wise to print up a fact sheet about schizophrenia and I put that in my purse to be presented to Tami when the time was right. I was incredibly nervous about having this talk and had no idea how it was going to be received. Since Tami had written Thomas up in the past for leaving work early I felt that she might be tough to get through too. I couldn't have been more wrong.

We got to the store, Thomas and I, and I met Tami out by the cash registers. I took one look at her and thought that there was no way that this woman was going to understand what I was about to tell her. We walked back to the office and when we got in there, there was one chair and Thomas plunked down in it leaving me standing there in my high heels teetering and trying to look confident. I think I need to teach Thomas that he should offer the woman the only chair in the room but I had to laugh when he took the seat himself.

I launched into explaining to her that Thomas had come to this job via Opportunities Unlimited. I was setting the stage to let her know that he has a "disability" and that technically they couldn't fire him because of that. I didn't say that directly but I wanted to get my point across. Then I revealed to her that Thomas's "disability" is that he has schizophrenia and I'm telling you, I couldn't have imagined what happened next.

She began by telling us that her sister has schizophrenia. Her sister! You've got to be kidding me. What are the chances of that? Then we talked about Thomas's challenges including that crowds cause him a great deal of paranoia and she told us that she deliberately doesn't schedule Thomas for big sale days because she knows it's hard for him. She said that her sister has some social anxiety also and that crowds do to her what they do to Thomas. Really? Seriously? Her sister is EXACTLY like Thomas? How could this be? She said that she had noticed that Thomas had struggled a couple weeks ago (when I was in Seattle) and because of that she had cut his hours back to give him a break. Since she mentioned that episode I thought I would bring up the fact that I was leaving again in April for the conference and that he'd probably struggle at work through that time. She completely agreed that he probably would so I tentatively asked her if it would be possible for Thomas to have that time off. I prefaced it with saying that we realized he was already pushing his luck because he was taking a vacation just a few days before that but she HAPPILY agreed to give him the time off saying that she felt it was a good idea too.

Really?

Seriously?

Then came the tough part of the conversation and that was the subject of Thomas being written up. She said she does that because she is "going to treat Thomas like everyone else there" and that his leaving "leaves them scrambling to fill his vacated space" and sometimes that causes a lot of problems. I wondered to myself,

"Can she seriously treat Thomas "just like everyone else there"? I mean, because he has a "disability", can she legally do that?"

I didn't know and that's something I'm going to have to look into but in the mean time Thomas is still in danger of being written up. That's not to say that I want Thomas treated like he's a pariah and get special treatment but I do think that his leaving early should be allowed because it's not like he's just walking off the job to be defiant. The takeaway, however, was that he will get written up sometimes but she said she will accommodate him as much as she can and she has since she last wrote him up. He will still be in danger of being fired (which I hate) but it seems like they'll do the best they can to keep that from happening. Really, I'm at a point that if they're seriously going to fire him because he's leaving early because of his illness then so be it. If his firing is somehow against the law then I'll cross that bridge when and if we get to it. I'd hate to raise hell in my small town by hiring a lawyer and pushing them to keep him there as an employee but I'm certainly not above doing that if I have to. I just really hope that I never have to take it that far. I think there are a lot of steps between being fired and then bringing out the big guns (lawyers) one of which might be Opportunities Unlimited or Thomas's advocate over at the State of Idaho's Department of Vocational Rehabilitation.

So, all in all the meeting was a HUGE relief. Both Thomas and I were visibly relieved and I thanked Tami for sharing her stories about her sister and for understanding. Underneath that thank you was a thank you to God for giving us this most unique situation where we met with a person that already knew the illness and not only knew it but had a close family member with it. All of my preparing for her to recoil at the sound of the word schizophrenia was for nothing and I was so thankful.

The moral of the story is this:

You have to take risks. You HAVE TO. You just never know what's going to come of it by doing so. It might not always turn out like you hoped but if you didn't take the risk in the first place you might never discover that instead of something being a debacle, the result is, in the end, the best possible outcome you could(n't) have imagined.

Friday, March 27, 2015

Friday's With Tom--My Airsoft War Adventure


Hello guys, Tom here and welcome to my blog.

On the 22nd of March I went to an airsoft war with 3 other friends and 4 guys from the Moscow, Idaho area. I had to get up early, about 5 am and have breakfast. I was excited to go because it was my first airsoft war with other people besides a small handful of my friends.

After I got picked up the rest of my friends stopped for breakfast at a McDonald's. One friend had two Egg McMuffins and two orange juices, one had hot cakes and milk and the last friend had a breakfast burrito. By this time it was about 7 am and we drove for what felt like 2 ½ hours to a remote trail just past Potlatch. We parked about maybe half a mile from the airsoft field and it was an uphill climb. It would have been easier to climb if we weren't carrying about 10-15 lbs. of airsoft gear and equipment.

Being the genius that I am, I was dressed in black (I'm trying to go for a British SAS style look) so the hike up the hill was exhausting. But thankfully my friend, Jon, was just as out of shape as I am so I had someone to talk to while we were climbing. Oh I forgot to mention that there were 8 of us, me and three of my friends and 4 guys who were about in their senior year of high school from the Moscow area.

By the time we got up to the hill and had 1 game of airsofting I had realized I had forgotten a loader for my bb magazine. I asked one of the guys who were more familiar with the terrain to help guide me back to the cars so I could get the loader and we had to hike back up the hill. Oddly enough, it was harder getting up the hill with only 5 lbs. of gear than it was with 10-15 lbs. of gear so I sat out of a game to catch my breath and drink some water.

When I was feeling better we had a couple of games. One game we had was an escort mission. 3 NATO troops were to guard the president after crashing Air Force 1 in the forest from terrorists whose goal was to either kill the guards or capture the president. Round one I was on the terrorist’s side (despite having British flag patches) and my team won the battle. The second round I was on NATO's side and we lost the battle but it was lengthened to about 10 minutes worth of game play (fun fact; the guy that volunteered to be the president sounded exactly like President Obama, so he would usually spout out things like, “My fellow Americans” and other things Obama has said during his presidency). Then we had a couple games of 2 vs.2 vs. 2 vs. 2 and my team came in second after I had ran out of ammo. How it worked was that if you got hit once you had to shout out “hit” and raise your hand and walk back to the non-playing area (which oddly was in the middle of the battlefield so we had to keep our eye protection on) so people had to be honest if they get hit.

When it came time for lunch the four guys from Moscow had brought their lunch up from the cars while two of my friends (T-Mac and Jace) went down to the car to get theirs. The funny thing was, they stayed at the car and ate but me and the others thought they were missing so one of the guys from Moscow started saying,

“Oh god it’s like in horror movies that take place in the woods. Two go missing and the guy that went to go searching for them disappears.”

Eventually they came back after what felt like an eternity. T-Mac had brought up half of a PB&J sandwich which my friend Jon and I split and ate. Later (during the break) one of the Moscow guys had brought a CO2 powered sound grenade (it is supposed to make a loud “boom” sound). It didn't work so for about 10 minutes we had been throwing a sound grenade trying to get it to work. We threw it as far away as we could, shot at it, one guy actually threw a 10 lbs. rock at it and it never went off. So we ditched it to let it slowly leak CO2 (which was why it never went off).

By this time it was around 3:15 pm so we collectively agreed that it was time to head home. We packed everything up and hiked back down the hill and back to the cars. For about 5 minutes after we arrived we had tried to fit everything in the trunk but we would forget something then have to pull everything out and reload it back into the trunk. Eventually we got everything packed and put into the car and headed back home. We made a quick stop to get gas and a soda (I had like half a Welch's grape juice bottle full of water) and we proceeded to head home.

We made it back at around 5:15 pm and I was dropped off. I was exhausted and my legs were killing me. But I would do it all again. It was a lot of fun. I highly recommend airsofting to anyone who wants to get a taste of what it’s like to be in the military and be in situations that are taxing on the body.

Well that's it for today's post, I hope you guys have a good day and as always, stay beautiful.

Probation and Being Fired

Once again I sit here finding it hard to write. I figure that the reason that I don't want to write what I'm going to is because in doing so it'll make it more real. That's one thing this blog provides for me is a place where once I share a story it forces me to face the realities of it and deal with it. I'm not always too terribly keen on facing reality though and that is where I am today.

First of all, Thomas had therapy yesterday and that went reasonably well. It's a topic for a different post, though, because it was what I discovered AFTER therapy that completely broke my heart.
For Thomas and I there is something about riding together in a car alone that makes it (perhaps) easier to talk about things having to do with his illness or his personal life. It could be that I'm distracted with driving just enough that my tone of voice is even and I'm maybe not putting pressure on Thomas that he otherwise might feel if we were sitting across from each other in the living room having a talk. Whatever it is, I am thankful for the car rides, especially when they reveal what I learned yesterday.

Thomas is completely dreading my leaving for the conference. He is (understandably) terrified that he's going to have another episode similar to the one he had while I was in Seattle and he doesn't want to go through that again. I don't blame him one bit. I don't want him to have to go through that again. We're still picking up the pieces from that one. What he's wanting to do to remedy the situation while I'm gone is to take the time I'm gone off from work. Herein lies the problem. Twice lately he has asked his manager Tami to switch shifts so that he can be available for Airsoft wars. His manager doesn't know why he's switched shifts but he's still done it nonetheless. Also, he requested time off for a lengthy family vacation coming up the second full week of April and that has been approved. We will come home on the 14th and then on the 16th I will leave for New Jersey for four days. He and I both feel like he's pushing his luck as far as trying to get even more time off because of all of the flexibility his job has afforded him lately. Going in and asking for another 4 days off doesn't seem like a good idea.

From that conversation came this:

Apparently back in November or December (Thomas doesn't remember exactly when) he left work early because of anxiety. His store manager, Tami, was the manager on duty that night and she told Thomas that because he did that that he was on probation and that the next time he left work early he would be fired.

Fired!

Since then, Thomas has lived under a blanket of fear about leaving work early because he doesn't want to lose his job. Who can blame him? It appears to me, though, that the managers on lower rungs of the ladder have kept Thomas's secret about leaving early other times since then because nothing more was said to Thomas about being fired. I am so thankful for those managers who understand Thomas and his needs but it's just a matter of time before Tami gets wind of what's going on and she fires Thomas.

My heart breaks for Thomas. This is just so unfair to him that his job security is threatened because he has schizophrenia and he suffers from episodes that make it impossible to stay at work. I am also angry because I want them to understand that he suffers a great deal and chances are someone there isn't going to put up with him leaving again sometime and they are going to fire him!

Thomas and I sat in the car on the street outside our house and talked about this some more. I asked him why he hadn't told me this at the time that it happened and he told me that he didn't want to stress me out. He's sweet for wanting that but it just can't be that way! He has to tell me EVERYTHING that he deals with so that I can help him get through them. I told him that and I also told him that this illness is a nasty one and that no one should have to cope with it alone. I told him that I was here to walk this world with him and that I was here to fight for him wherever and whenever need be. We talked about solutions to this problem of potentially being fired and we came up with the same one we had done before; we are going to go in and talk to Tami and reveal the extent of his illness and hopefully garner some understanding and flexibility from her.

Oh God, it's time for "the talk."

Thomas and I have done this together before back when he had a different manager. We called a meeting and sat down with him and told him everything and after that things changed for the better, for the most part, for Thomas at work. I can only hope that the same thing will happen this time.
The thing that gets me, though, is this:

Thomas came to his job through a program called Opportunities Unlimited which is a program connected with the state of Idaho where they help place people with disabilities in jobs in the community. He came to the job with the label of "disabled" attached to him and I assume the powers that be at his job understood that he would have special needs as a result. Up until Tami took the helm, things seemed to go along smoothly for Thomas. But here we are now, back at square one, and something needs to be done. That something is "the talk" with Tami and frankly I am scared to death to have that conversation. Let's face it, the general public hears the word "schizophrenia" and they are instantly scared and envisioning violent acts perpetrated by an unpredictable "insane" person. I have no idea how Tami is going to receive this news and because of that I am so nervous!

So, Thomas is going to make an appointment to sit down with Tami and he and I will go together and enlighten her and see if we can get some understanding and flexibility. I am also going to contact Opportunities Unlimited and see if they can help us because having them there will unequivocally show that Thomas lives with a disability that needs to be considered when he's on the job. I will let you all know how that goes for us. I expect that we'll have to have that meeting fairly soon since my trip to the conference is coming up fast.

Thursday, March 26, 2015

Tired

I don't know what it is lately but I have been so tired. On top of that I have felt this heavy, oppressive weight sitting on me that weighs me down as I try to get through my day. For some reason, caregiving, even the word "caregiving", has been bothering me lately and that is what I think is making me so tired. Perhaps, too, it's a bit of depression because it's been raining here a lot and every time I have to go out in the rain or I open my curtains in the morning and see it pouring down, I just want to scream. It's just rain but somehow it's a part of the weight that I feel.

The thing is, Thomas seems to be doing well. His dreams have stopped and he's very social. All of that, though, is marred with little things that happen that are adding up to big things where the title of caregiving is concerned. He came to me the other day after hanging out with a friend I'm not too terribly much a fan of and he told me,

"Jon asked to borrow $100 from me so he can buy his own Airsoft gun."

I wanted to scream! I told him that he didn't even have that kind of money even for himself and that he should be keeping what he does have for himself. I told him that lending money to friends is a slippery slope because after a while, when they're not paying you back, it drives a wedge in the friendship. Well, he must have heard me because he came to me the next time and said,

"Since I'm not going to loan him the money, WE AGREED THAT I WOULD BUY HIM A PATCH FOR HIS JACKET."

I put that in caps for emphasis. "We agreed that I would buy him a patch"??? We agreed? Like as if Thomas somehow owes him that patch since he's not going to lend him the money for the gun. This is what worries me about Thomas. He gets taken advantage of by friends who are devious and he's none the wiser for it. He always feels like it's his duty to take care of his friends financially.

Then the other day my mom took us out for lunch and somehow it came up that Thomas only has $3.00 in his wallet and next to nothing in his bank account. My mom got into her wallet and handed him $40.00 and told him to spend it on himself. I later told him to use some of the money to buy his own BB's since he'd been using some from a good friend of his. I told him to be sure to share his with his friend. This, he does owe his friend, since his friend has been driving him everywhere and providing Thomas with ammunition all without asking for anything in return. The problem was, though, that when he opened his wallet to pay for the BB's I saw that he had 1 full $20 bill and then very little left of the other $20 my mom gave him. I know he had just spent the day with Jon and I know that they go to the store together to get snacks but it was fairly obvious that Thomas has used his money to buy Jon's snacks too. You see, Jon has a job. He has a job and hence his own money. Why is he asking Thomas for money and to pay for his snacks? In my opinion he is clearly taking advantage of Thomas's good heart and is taking what he can get from Thomas.

Making matters worse, Thomas announced to me the other day that he and Jon want to move in together. Can you imagine?!?!? I envision Jon "borrowing" money from Thomas or sticking him with the full rent or not paying for groceries. Worse still is the fact that if Thomas is living independently, he will have his disability money and I can say with certainty that Jon is going to see that as "free money" and expect Thomas to pay for things. This whole living together thing for these two boys is not a good idea. It was Dan who pointed out the disability money thing and my mom who pointed out that Thomas would get stuck with the rent and neither of them, including me, think that it's a good idea for Thomas and Jon to live together.

This, then, brings me back to the "caregiving weight" I am carrying right now. I really want Thomas independent but I don't want it to be like this. I want to see him living with someone who will care about him and respect him. As such, right now, there are no prospects like that and I realized that because of that, Thomas won't be moving out any time soon. For some reason that thought weighs on me.

Then yesterday Thomas woke up and stood around in the living room for a bit and then went back to his room completely skipping breakfast and pills. I went in a little while later, after waiting to see if he was going to put a breakfast together, and I asked him if he was having breakfast. He said he didn't feel like it but when I asked him if it was because he didn't feel like making his smoothie he said that was part of it. I explained to him that he just needs, then, to make a breakfast that is equivalent to the nutrition found in a smoothie and I helped him brainstorm a comparable breakfast. He begrudgingly got up and came into the kitchen. Part of that breakfast was going to be an apple and I knew that he is afraid to cut an apple after cutting himself once (it wasn't a bad cut but it scared him). I knew what I needed to do and that weight appeared again. I asked him if he needed help and he asked me if I could cut his apple, which I did.

I know it's just cutting up an apple, I know that's nothing. I know it's just a matter of a friend taking advantage of him financially. I know that those things and all of the other things lately probably aren't that big of a deal but all of them point to the fact that Thomas is far from being independent and that thought weighs on me. What is our future to hold? Oh yeah, on top of that, I was vacuuming yesterday and decided I'd run the vacuum through his room and I looked around and his room was GROSS. I asked him to move his shoes that sit at the end of his bed and next to the mattress on the floor, jammed up along the edges, was MONTHS of hair, dust and skin flakes. How does he not see how gross that is? How can he live in a room with food and God knows what else all over it and not want to have it clean? Why does it have to be me that sees the disgustingness of all of this and be the one who finally runs a vacuum through the area?

Right now it's so many little "caregiving" things but they are adding up. I am tired. I'll admit that and I admit it because I know many of you out there have to deal with the same or similar things so you'll know what I'm talking about. I really just wish Thomas saw the world differently and knew better how to take care of himself. I'm teaching him things where I can but I feel like I've got a finger in a quickly cracking, about to burst, dam and I know I'm not going to be able to stop the tidal wave of water that comes crashing through eventually.

The realities of this illness are so glaring right now and honestly they weigh a ton on my shoulders and in my heart and mind.

I'm exhausted.

Wednesday, March 25, 2015

A Voice Of Reason

I went and saw my own psychiatrist yesterday for a general therapy visit and I talked to her about the last couple weeks with Thomas. I love her perspective because she's a very qualified psychiatrist and she has a good heart and she can always offer me points of view about Thomas that I really need. She comes to me with an understanding of schizophrenia from a treatment provider's perspective but because she is also my treatment provider she knows what I deal with as a caregiver and she's very sympathetic of my situation as a caregiver.

I told her about how Thomas fell apart when I was in Seattle and how the residual effects from it had affected him over the last couple of weeks. I told her about the joint session with Thomas and Dr. K. and I told her how very angry and hurt I had been. What prevails for me where that joint session is concerned is hurt more than anger. They always say that anger is really an outward expression of hurt and I suppose that's true for me after having processed everything that happened that fateful day.
I zeroed in on the whole thing about Thomas dreaming that Dan and I are mad at him and she had a perspective that I hadn't considered. I told her that I felt that the dreams were basically random dreams about fighting with Dan and I and that they had spilled over into his waking life altering his reality. I said that there had been no fights or even any tension in the house leading up to the dreams so I felt that the dreams and subsequent "reality breaks(?)" were part of Thomas's illness. She told me something that made me think:

For Thomas, with me being gone, it most likely felt like a form of abandonment to him. With me gone, his subconscious world felt that I might be gone forever and that he would be on his own. As a result, he was dreaming about something that could be considered abandonment, fights with his parents where he is left alone in the world as a result. In effect, because he lives his waking life lately with the reality that I might leave him (I went to Seattle and now I'll be going to my conference soon) his dreaming mind comes up with the only way to assimilate this belief, fights with me and then waking fears of me abandoning him since I'm gone a lot.

This made perfect sense to me. Of course he's having the dreams he is. This has been a very trying few weeks for him between that guy offering to give him a ride in the dark to the beginnings of paranoia forming again to me leaving for Seattle to his complete breakdown at work about government agents and finally to the reoccurring nightmares about fighting with Dan and I. Beyond that what looms on the horizon is me leaving again for 4 days and maybe perhaps our vacation to the ocean in 2 weeks might be causing him a little bit of stress just because we will be out of our routine. He's got a lot on his plate and frankly, when you think about it, with everything that's gone on, he's doing reasonably well. That's not to say he's sailing through his days because he has been asking for a lot of hugs lately and has these moments where he sighs a big sigh like he's tired but when I ask him if he's tired he says no and that it's something else. He doesn't elaborate but I think he doesn't because he's trying to protect me.

Ultimately, though, my own session yesterday was a HUGE help to me. My psychiatrist did for me what I guess I wished Dr. K. had done. She jumped in the dream analysis pool (which I already reside in because I believe most dreams mean something and are definitely reflections of waking life and of thoughts you have when you're awake) and she offered me exactly what I needed to hear. She was my voice of reason in an otherwise emotionally hurt life and she gave me something to hang on to. For the last couple of days, Thomas's dreams have stopped and I think it's because he's settled back into our normal everyday structured life where I am here all the time or if I'm gone it's just because I am across town. I need to shore him up for my eventual departure to my conference. I don't know what I'm going to do, I'll be gone longer there than I was to Seattle, but I'm working on some plans that'll hopefully help him out.

Monday, March 23, 2015

Residual Effects

I really have to wonder if Thursday's session somehow affected Thomas too. For the two days afterwards he was kind of distant from me and one of the things that went out the window was doing his Friday's With Tom post. I talked to him about it on Friday and Saturday and he said that he felt that he didn't want to disappoint me or you guys so he felt a sort of obligation to write. I thought that would be the end of it because I'm not about to push him into writing--I want it to be something he likes to do--so I kind of figured the days of Friday's With Tom were over.

Then yesterday he went to an Airsoft war that was quite a ways from here and took place in the mountains. He left at 6 a.m. and was gone until 3. Something about that trip seemed to refresh him in some way so I thought I would revisit the whole Friday's With Tom thing with him. I sat down and talked to him about it and told him how he makes such a difference in the world with his writing and I told him that this experience Airsofting in the next town in the mountains would make a great story to tell everyone.

He lit up!!

Because of that I told him that his blog is supposed to be fun for him. It's not supposed to be an obligation. I realized that writing about his Airsoft war was going to be fun for him so he was once again excited about writing. I also told him that he could write it any time he wanted and that I could set it to post on Friday's even if he got it done today. He liked that idea.

So, happily, I am announcing that Thomas will have a post for you all on Friday! He will be talking about his Airsoft war which sounded to me like a TON of fun. It was something that he had been looking forward to for a long time (this big war in a college town up in the mountains) and the last one had been rained out so finally we had a nice day and he was able to go. Apparently there is another one this Saturday and since he doesn't work, I imagine he'll be there too.

As for the residual effects from therapy and the distance between us, I was feeling pretty awful about that. I didn't like us walking around like two ships passing in the night. Hugs dropped off to next to none and even after saying there was no tension in the house before therapy, after therapy, there was. The night before his Airsoft war I was saying good night to him and I did the mother thing and began to issue instructions.

"Be sure you wear your seatbelt."

Which was met with,

"I know, I always do!!!!"

and I said "never mind" to him and I said "good night" and walked away. My heart was broken, I didn't want to leave the night behind with any conflict. I didn't have any plans of waking up early with him, instead thinking he needed to be independent from me and get through a morning alone where no one was up but him. I woke up, however, and came out to see him and give him a hug. That's when he asked me to make his breakfast smoothie and I happily did that, sneaking in extra flax (fiber) and protein powder. I wanted his day to get off to a good start. After making the smoothie he came into the kitchen and asked for a hug and all of the residual "ick" of the last couple days after therapy was gone and I held him so tightly.

So, last night was a beautiful night. We were "us" again. Oh how I had missed him! I'm not sure what I could have done to change the days after therapy but I am thankful for the fun of the Airsoft war and for waking up and making him a smoothie. They broke the ice and he and I are now good.

Thank God.

Saturday, March 21, 2015

I Just HAVE TO Say Something

I have to admit that I thought I would wake up this morning feeling better about this whole therapy thing on Thursday. It basically wrecked my day yesterday as I tried to sift through everything and decide what to take on and what to let go. All of your comments helped me so much, though, and I want to thank you for speaking up for me and for understanding. You are so right about this being NOT about me or about ANY of us. For me, Thomas is my life. I can't tell you how many times I have had to give up some piece of myself in an effort to help Thomas in some way. I have had to turn down plans to do something fun, I have had to change how I interact with him in order to protect his feelings and many things in my life have taken GREAT consideration before choosing to go ahead with them or abandon them altogether. It isn't that I resent having to do that rather it's just a fact of life for a caregiver and a mom. When Thomas got sick I made a decision to make his care my life and I have not looked back once.

All of this brings me to an aspect of Thomas's therapy that I have decided to discuss. Had it been only about Thomas and didn't involve me, I might have let it go. Brace yourself, though, because there are some harsh realities to what I am about to talk about.

I told you about how Thomas has been having reoccurring nightmares about fighting with Dan and I and that those dreams are spilling over into his waking life and he is altering his behavior as a result. You should have heard him the other day in an interaction with his dad where he tried to carry on a forced conversation with his dad. Dan was leaving for work and Thomas stood up and, like a small, frightened child, he engaged in a conversation about his dad going to work and that he hoped he would have a good day. I know that sounds like no big deal but if you live in this house, you would know that Thomas doesn't engage with his dad that much most times. What made this interaction sadder was how it appeared that Thomas was terrified to be having this conversation but it was obvious he felt he needed to push through it. All of this was a result of his dreams. There has been zero tension in the house for a while now so these kinds of conversations should have flowed naturally but because Thomas is dreaming these dreams about his dad and I fighting with him, he believes they are real and that he needs to be contrite and engaging in order to head off any conflicts he imagines will happen based on his dreams. To me, but apparently NOT to Dr. K, I see that there is a real problem here. When Thomas can't separate out that his dreams are just a dream and that real life is nothing like them and based on his dreams he is altering his behavior, that, to me, seems like someone who is not present in reality. That, to me, seems like a person dealing with some schizophrenia, most likely some kind of delusion. In session I mentioned this to Dr. K. and he brushed it off saying he's "not a dream therapist" and he said it was instead that Thomas in the day feels like there is tension and it's spilling over into his dreams. As I said, and I will reiterate, there is ZERO tension in this house so Thomas dreaming there is, is a dream that causes consequences for his waking life. Dr. K. has it backwards but because he sees it the way he does, he didn't seem open to hearing what I was saying. In this instance, to me, this was yet another case of "I live with the kid every day, every hour of his life and I see things happening and they are abnormal and they NEED HELP" and you, Dr. K. see him 1 hour once a week and unless you really listen to what I'm saying you are going to decide for yourself what you think is going on. However, I think he has it wrong in this case. Very wrong. So, my efforts to help him to understand this failed and we brushed past what I had said and moved on to other topics.

One such topic had probably some spill over from the whole dream thing. It isn't news to me that Thomas often feels with authority figures that he is unable to speak up for himself. It is understandable that he has come to this conclusion based on history and conflicts we have had in this home. However, since Thomas got sick, since I understood how this illness affects him, I have done a complete about-face in my parenting and I don't yell at Thomas anymore and I certainly don't have disagreements with him. Our relationship, where tension between us is concerned, has changed and for Thomas to be afraid anymore that he's going to anger me with what he wants to say or ask should not be a concern of his at all.

Then in therapy IT was said. The thing that hurt me but that I understood on some level. Let me explain. Dr. K. prefaced the whole thing with that he didn't want to upset me but then launched into telling a story about Thomas from one of his past sessions. It seems Thomas is afraid to talk in therapy with me there because he's "afraid of making me angry".

Huh?

Why would I get mad at anything he has to say. I can't imagine what he could say that would make me mad!

Then Dr. K. went on to tell me that "Tom is a much better patient when I'm not in the room."

Ouch.

But okay. I get it. I do. He needs a safe place to talk and he doesn't need his mommy around but if the whole premise of him being afraid to talk in therapy is because he's afraid he'll make me mad then that is flat out ridiculous. I really don't know where this comes from?!?!? Never, not even ONCE have I been angry at him in therapy. Granted I have gotten mad (like I am now and was at the time) with Dr. K. but even so, I have never shown my anger or hurt. I have...EVERY TIME...told Dr. K. that I am fine taking his insults and insensitivity and I said that with a smile and I did all of that to protect Thomas from ANY tension that might arise. I am not without compassion for my boy and his fragility where this is concerned and go so far as to sacrifice my own feelings in favor of keeping the peace in front of Thomas. I NEVER want to give him reason to be afraid.

But let's revisit this whole things about how he's a "better patient when I'm not in the room." Please...tell me then....WHY DO YOU INVITE ME INTO THERAPY??? Why, if I am somehow hampering Thomas's progress, do you invite me in and not only that you engage me in the process, all of us a team, in order to help Thomas cope with the things he is dealing with???

All of this, all of what was said, all of everything I now know about Thomas worrying I'll get angry about things he says in therapy, makes me never want to darken the doorstep of Dr. K.'s office ever again. I don't want to be a hindrance to Thomas's therapy and I was always left with the impression that I was HELPING. That is up until last Thursday.

The prevailing theme that came out of therapy was that Thomas is afraid of angering me. There is nothing I can do about that because that fear is not based in any reality over the last few years. All I can do is protect him from my own emotions so as not to upset him in some way.

Here comes the harsh reality I talked about.

To Dr. K.:

DO YOU REALIZE HOW MUCH I WALK ON EGGSHELLS AROUND THOMAS? Do you realize how much I alter my own emotional state, hide any negative feelings I might be having about ANYTHING in order to protect Thomas? Do you realize that even when I am overly excited or happy I have to hide THAT from Thomas because it causes him anxiety? Do you realize that I have bipolar and my moods fluctuate sometimes but because of that I have to rein in how I am feeling so as not to upset Thomas. Do you realize that I do this sometimes with the help of medications that I don't want to take because they sedate me but I make that sacrifice because I am protecting Thomas from ANY emotion I feel? Can you acknowledge the daily sacrifices I make in order to keep Thomas on an even keel, to keep anxiety at bay, to lessen the delusions and any number of other things I do that are now automatic because sadly they have now become a part of the fibers of my being?

So when you say Thomas is a better patient without me in the room. When you say that I am the cause of him being unable to talk. When you spend a session making me feel like the world's worst mother because of the choices I make in my life (like going to the conference or writing this blog), I must bring up the sacrifices that I make for my boy CONSTANTLY. I do not do anything lightly. Sure, I have decided to go to the conference, but do you realize the INTENSE level of anxiety I have gone through worrying about my absence affecting Thomas? Do you realize that even the choice to go grocery shopping with my mom on one of Thomas's bad days elicits a lot of serious consideration on my part whether or not to go and sometimes, in the end, I choose not to go so that I keep Thomas's emotions safe?

You know what? Yes, SOME of this is "about me". But why can't it be? Am I not allowed freedoms? Am I not allowed a break? Am I not allowed just one minute in a 24 hour period where I can actually do something for myself besides keep watch over Thomas?

I am angry. I am hurt. I am disgusted.

And I won't have my choices called into question in any manner than in a private way where there will be no chance of tension between us in front of Thomas. Yes, you are not my therapist. But I am Thomas's 24/7 caregiver and what I do, how I do it, and the consequences from that are mine and all of it is to be respected and dare I say, even revered to some degree?

So, okay, I finally said my peace. I am not going to sit on this any longer. There was so much more that happened but for today, this is what I will pick on. I do the best I can and I love Thomas with my whole heart. He is my life and I am happy to walk the world with him however I do not need someone criticizing what steps we take, how slow or fast we go or if we stop for a break or power through it.

Friday, March 20, 2015

Ouch!!

I am sitting here debating if I should write about what I want to write about today. I took a few hits in Thomas's therapy yesterday from Dr. K. and I am left angry and hurting and bewildered. I am also left questioning EVERYTHING I do as Thomas's mom and caregiver and am even questioning if I should have this blog.
.........................................

I was able to do some venting in a private support group and tell the whole story and the people that responded were very supportive of me and I think you all would be supportive of me too but I just don't know if I should talk about this publicly. This will be the first time, if I choose not to say anything, that I have NOT talked openly and honestly about every aspect of my life.
Let me think here a second.....

Okay, one of the things that was said to me was that I am very "frank" about expressing my feelings (read: I talk--or write--too much about my feelings). I was also told in the same breath that "it's not all about me."

Let me see how I should respond here.

EVERYWHERE in my and for my ENTIRE life I have talked about my feelings. I do that because I am incapable of keeping them to myself most times. In that respect I suppose I could be considered flawed because sometimes I ought to just keep my mouth shut. But that just wouldn't be me. My philosophy has always been that because I feel like I do and because it's so hard to deal with the things that I do, all I want is to let people know that what they are feeling isn't wrong and that they have a right to those feelings. I have made it a mission in my life to take care of others and help them through their tough emotional times.

Now...."it's not all about me"....REALLY? Do you think I actually think that it's all about me? I mean this whole thing in general. This blog, my life, my relationships, my caring for Thomas. Do you think that the ultimate belief in my life is that of a narcissist who thinks the world revolves around me and that I don't, for one second, consider other's feelings? Let me pick on my blog a little bit here, okay? Yes, I write about MY feelings, MY fears, MY joys but I also write about what Thomas deals with and I do so with love and compassion both for him and for my audience. I write because I want others to know they are not alone and I write because I want people to know that I support them in their struggles. The entire goal of my blog when I began was to paint a picture of schizophrenia from a caregiver's point of view. The only way I can do that without having some sort of classroom where dialogue can take place, is this often one-sided conversation with me writing but listening to you at the same time when you comment. The truth of the matter is, my writing is my conversation with the world. I have never said I am right about everything, in fact I have written many posts about how I got it wrong and I genuinely apologized for it and I will continue to do so for as long as I have this blog. I was in a relationship for years that centered on a constant conflict with someone who believed they were ALWAYS right and I worked constantly to show this person that there were other viewpoints to things. This person's toxic need to be right all the time was one of the things that destroyed the relationship and the beautiful thing that I took from that failed relationship was the knowledge that I am not always right either and that I need to always listen to other people and consider their points of view. Many a time I have learned valuable lessons from setting aside my own ego in favor of letting someone share their world with me. Life is not black and white, all or nothing. I am not right and neither are you. "Right" lies somewhere in the middle of everything and two people who are willing to set aside their egos will find that "right" together and be much better human beings for having done so. So, in my opinion, I don't see myself as someone who believes it's "all about me."

Correct me if I'm wrong here.

As for other things that happened in session, save for one other thing, most of it included Thomas and how he and I interact and because of the way the session went yesterday I am left feeling like I can no longer discuss what goes on in session where Thomas is involved. You must know that what I write about, Thomas knows that I write about it. He doesn't read my words but he is aware that I have shared things with all of you about things that went on in therapy but, and he understands this, I write about it because I think it is a great teaching tool for the world. Beyond that, even Thomas discusses his coping mechanisms borne from therapy sessions. We have made a commitment to open our world to all of you in order to help you through what you're going through. After yesterday's session, though, I feel like a few walls were built around me and what I do here and I feel a bit suffocated now by this walled in space I find myself in.

The truth of the matter is, though, that I will probably say more over the next few days. After all of the things that were said to me yesterday, some of which called my parenting and caregiving into question, I am, more than anything, left angry and hurt and it is not in my nature to not stand up for myself. I am still processing the hits I took yesterday and as I do so, I will probably open myself up again.

Ultimately, though, this needs to be said:

I love Thomas. I love him more than anything or anyone else in my life. I make sacrifices daily for his well-being and I do so out of love and without reservations. I have made mistakes in how I raised him, I wasn't always the best mom, but I have done nothing else but try to make that right over the past few years. I cannot repair the damage I have done but I can move forward into the future being a person that is supportive, loving, selfless, and humble. I have great respect for my son and what he deals with. I have respect for this illness and its toll on him and everyone else around him and since I have learned of his diagnosis I have made it my mission to be the kind of mom that educates herself about this illness and who adjusts her caregiving and parenting skills to accommodate what this illness has done to her son and taken from him. In the end, in the bitter bitter end, when everyone's judgment of me has come down from on high, I will defend myself with tenacity and I will walk into the sunset knowing that I did as much right as I could and that I did everything I did out of love and compassion for my beautiful boy.

Thursday, March 19, 2015

Dreams Vs. Reality

I read an article recently about the correlation between sleep issues and psychosis and it got me to thinking. For a few days after reading the article I would ask Thomas if he had a good night--like I always do--and he told me it was fine. Then it clicked and I thought to ask,

"How is your QUALITY of sleep?"

That's when I discovered his nights hadn't been fine at all.

It turns out he has been having what I would call nightmares lately. Bear in mind he rarely dreams, most likely because he's so sedated. In the last few nights, though, he has had reoccurring dreams that he's fighting with either me or Dan. I told him how I felt that must be awful for him but then yesterday dug in a little deeper. It seems that his dreams start out as all of us fighting kind of playfully about something and "then it gets personal".

Personal?

How?

I asked him if the fights turned into name calling and the like and he said that happened and other stuff too. He wouldn't elaborate. What could his mind be telling him in his dreams? I certainly don't like that he's dreaming that he's having conflicts with his dad and I because that isn't real life and I know his dreams can be real enough that he wakes up believing they have happened. I told him how sorry I was that he had these dreams and that he had to wake up feeling so awful. I understand that feeling because I, too, have trouble separating dreams from reality sometimes. There's nothing worse than--for example--dreaming that someone has been hurt or killed and you wake up crying and feeling the grief as if it's really happened. He heard me and said, "okay" but the dreams have continued.

It makes me wonder, though, what does all of this mean for his schizophrenia? If bad quality of sleep, or changes in sleeping patterns indicate that someone is dealing with psychosis then is this what is happening to Thomas right now? I guess with all of the paranoia about work and crowds and the government he's considered "psychotic" so it stands to reason that his sleep would be disrupted.
More than that, I have to wonder how the dreams are affecting his waking life. I always live in fear that the time will come someday when he will no longer trust me because a delusion has convinced him I am an enemy of some sort. It seems to me that reoccurring dreams about fighting with me where they get "personal" and nasty that wake him and cause him to be unable to separate dreams from reality might convince him in his delusional mind that even when he's awake that I am not to be trusted. I have some grasp on how his mind works by now and it's not that far of a stretch to see how he could reach a point where even when he's awake we are, somehow, at odds.

I guess only time will tell. I'm going to keep an eye on him and his sleep and make sure that things are okay. Beyond that I am going to make a concerted effort to keep any tension low so that he doesn't correlate dreams with reality. I can't have him thinking I am the enemy. I am his only lifeline, I am the most trusted person in his life and my role needs to be protected at all costs for as long as is possible.

Our Story Becomes Real

Months ago I submitted an article to be published by Treatment Before Tragedy and I have waited to get it finished up for publication. Yesterday I received my final draft to be looked over and tweaked and I reread the story, OUR story all over again. After yesterday's post about some of the memories I had when Thomas first got sick, this article brought back EVERYTHING from Thomas's birth to the present day.

It has been a long journey.

It's funny how time has a way of lessening the impact of certain events. Life goes on and the things you went through years ago fade into the past in favor of trying to survive the present. Thank God for that because sitting here reading about all of the trials Thomas and I went through is pretty heartbreaking.

We all, here, have our stories, our loved one's life story locked up inside of ourselves. Sometimes they're locked there because there is no room to hold them all in your heart and mind and sometimes they are locked up because it's just too much to bear. To remember the gravity of what REALLY happened takes a strength that sometimes I, personally, don't have because remembering means that all of it actually happened and it happened in such a sad, heartbreaking way.

I read over my article and remembered finding Thomas's beautiful, soft hair laying on the carpet of his bedroom after he had pulled it out in frustration. For years I saved that hair (I might even still have it) because in the way that a mom saves a lock from her baby's first haircut, I kept it because it marked a time in Thomas's life when the stressors of his life and his illness were too much for him to bear, where pulling out his hair in chunks became a stress reliever for him but left me horrified because I understood the pain he felt. There is no more helpless time than the times when you don't have an ounce of control over your loved one's illness. When you've tried everything and still they don't talk to you, still they hide in their rooms trying to escape the demons in their mind. I spent so much time paralyzed by helplessness and grief and after the last week, I realize I am far from escaping those feelings.

This illness is the worst kind of criminal. It's heartless, thoughtless, and a stalker of the scariest kind. One of its worst qualities is it's ability to lie in wait like a rattlesnake under a rock just waiting for prey to meander by. If it had life, had a personality, if it breathed, we would find ourselves fighting a man-beast who is dressed in tattered clothes and salivating with a wicked smile on its face. He would be the monster of our childhood nightmares only he'd exist in our adult minds and make us unable to escape it by hiding under our covers. If he were human we would have all fought, tooth and nail, by this time, to get him incarcerated and even sentenced to solitary and eventually death. At least I would. I'd fight the fight until I had nothing left in order to insure that Thomas never again fears crowds or believes that government agents stalk him threatening to imprison him for his political beliefs.

So, I'm doing the next best thing I can think of. I am writing. I am introducing this monster to the world in the hopes that someday, somehow, some way, it'll be eradicated and if not for our loved ones who are already riddled with its venom then for those who will come after us, fledgling fighters against this illness. Surely there will come a time when we won't have to plot our loved one's escape and we will see in their eyes that they are clear, coherent and free.

Tuesday, March 17, 2015

SSI Representative Payee

We have been plugging along at getting Thomas through all of the paperwork for Social Security in order to get his first check. He was determined "disabled" (I hate that word) at the beginning of December and we haven't seen a cent of the money he is owed. Apparently our local Social Security office is bogged down so things are going along at a

very.

slow.

pace.

Currently what we are waiting on is for Thomas's bank to release information about what is in Thomas's account (next to nothing) and then hopefully we'll be home free. One never knows though since I only just found out they needed a signature on a bank form to release that information. There could be more things I don't know about.

What did come yesterday was a letter addressed directly to Thomas (as opposed to me: Melanie Jimenez FOR Thomas Emery). It outlined what it meant to have a representative payee and it had a brochure in it explaining my specific tasks as his payee. I brought it to him and explained the letter a little bit and I pointed out to him that it was sent to him and that I am becoming his payee because he has been "considered to be unable to handle his own finances."

Honestly I wasn't sure how he was going to handle that particular wording since right now I would say he's totally okay with handling money. Well...not TOTALLY okay. If he were on his own, handling finances properly would be a challenge. With his tiny paychecks he gets he is very thoughtful about how he spends his money and I feel like he's doing pretty good with that. However, managing paying rent and budgeting for groceries and paying the phone bill are not something he does. It was the wording of the letter that got me, though, because it really made him sound like an idiot. I explained to him that I applied to be a payee because if he were to get sick and be hospitalized for a while, he would need someone to handle his money and pay his bills. I said that the whole thing rested solely on the thought that he could get sick and that he'd need my help. I told him that it's much easier to be designated the payee at the beginning of the SSI application process then to turn around after it's been established and try to get me on as payee. He seemed okay with it but it was interesting to me what he did next.

I handed him the brochure and letter and I asked him if he wanted it in his room or out on his table. Usually he can't be bothered with stuff from Social Security but this letter and brochure he took from me straight away and began to read it. I wondered what was at the source of that. I hear about how some of our loved ones with schizophrenia get an "independence streak" in them and they insist on handling everything themselves and I thought that might be what is happening with Thomas. Was he considering firing me as payee? He certainly seemed interested in the whole thing so it made me wonder.

He read it and came out of his room and handed it to me and said nothing.

Okay.

Good.

I guess.

I guess what I need to do is ask him how he feels about the whole thing. I know that he's feeling pretty healthy right now and wanting independence so he may see me being his payee as a roadblock to that independence. It makes me nervous, though, because sure, he's fine right now, or fine enough, I guess, but what if he gets really sick? If that happens and I'm the one who has to pick up the pieces of his financial life then how am I going to be able to do that with him locked behind a hospital door holding all of the responsibility for his money?

So, I suppose that's a conversation that I need to have with him today. He has a right to his opinion and I value it but at the same time he has to see the future and it's potential for pitfalls and he has to accept that things aren't always going to be like they are right now. Stability isn't promised, not by a long shot, and being the person I am that can see the entire picture which includes the reality of what can happen in the future, I really feel I need to keep ahold of this whole thing and from there teach Thomas about budgeting and managing money for living.

Monday, March 16, 2015

The Dust Has Settled

It has been a good couple of days in our household. Thomas seems back to his old self and now we power forward yet again. Thomas got lucky on Friday night when he worked because there were no crowds so he got a break from his paranoia. His schedule this week is down to working one shift (today) and barring any crowds, I think it will give him yet another chance to recover. I'm actually glad his schedule is back to one day a week because it keeps him out of a high stress environment.

One thing he has been struggling with, though, is his sleep. He has had to wake up earlier than usual for a couple of days prior to Sunday and one night had been an awful night for him where he couldn't sleep much. Then came yesterday when after not waking up at his usual 10:30-11:00 I began to worry. I'm not going to lie, I worry if he's okay when he sleeps in. I want so much to go in and shake him and make sure he is breathing but I try to calm my fears and just let him sleep. Yesterday Dan and I were around the house until noon and still no Thomas so we left to do our grocery shopping. I left a note for Thomas to text me when he got up and by 12:30 he was up.

Thank God.

These fears of mine about him not waking up began with the start up of his clozaril. He had so many cardiac issues with it and I was afraid he would have a heart attack in his sleep. I guess I never really got past that so, now, when he sleeps past his usual time, I worry. I remember the days in the beginning when they were pumping him full of meds and he slept forever. Those mornings and afternoons would be the loneliest times for me because I would sit here watching down the hall to his room for him to emerge from his room. Then when he came out of his room he looked so beaten down and would spend the day laying on the couch drifting in and out of sleep. As a mom that is one of the hardest things to watch as your kid is bound in a meds-induced semi-coma. Back when he was in high school and taking a ton of meds, he would get out of bed in the morning so very very tired and he'd barely get his breakfast down before he'd fall asleep again. I'd wake him up to get him off to school and I'd watch him walk until he turned the corner and he would just lumber along slowly to school. We were so new to schizophrenia at that point that I didn't know his lack of good sleep and the stress from school would make him worse. If I had it to do differently I would have kept him home and schooled him here for the remainder of his senior year. As it stood, the school was very understanding of his plight and they cut back his class work a great deal and he was, in the end, able to complete high school and graduate though not without a hospitalization in the middle of it all.
It's hard to look back on those times. My heart still breaks to this day when I remember those times because they were the beginnings of his treatment for schizophrenia and his symptoms were horrible. I'm thankful we've left those days in the past and even though he's been just as sick since, at least he hasn't had to go to school every day and try to get through it with all of his peers witness to him falling asleep in class and being heavily sedated when he was awake.

Here we are now, though, and he lives a relatively quiet life except for times when he works too much and/or the crowds are in the store. He spends his days, like he did yesterday, on YouTube or on his computer and he quietly gets through a day now feeling a little more stable. I'm not sure his life will ever be any different. After the years of struggle he went through, all I want for him is to live here at home, learn some independence around the house and be safe from the monsters that stalk him when he becomes too stressed out. What I wanted for his future has changed, he and I both have said goodbye to what we thought his life was going to be like but since he can't have that imagined life now, he and I, together, try to make it the best life we can.

So he sleeps till noon. Who cares? Except for my transient worries about him waking up, he is home safe, getting the rest and respite he needs and he is building on his stability little by little, day by day.

Saturday, March 14, 2015

When Plans Change, What Happens?

Yesterday was definitely touch and go for Thomas. With his plans to go to the Airsoft war being the thing that he believed would get him through his night at work, when it fell through things got a little rough.

After receiving the news that the Airsoft war had been cancelled due to bad weather, Thomas came to me shaking and pale. I took a deep breath and tried to figure out what to do for him. His plan to go had been his magical formula for getting through a potentially rough night at work and without it he was flying blind. After coming out and telling me that it had been cancelled and after retreating to his room to watch YouTube videos I sat down and felt horrible for him. Within less than an hour he was out of his room and standing beside me wide-eyed and telling me he was having anxiety and paranoia about work. I told him to take a lorazepam to head this thing off before it got too bad and he went into the kitchen and took one. He disappeared back into his room after that.

A little later on, I checked in with him and he said he was doing better. I was so thankful! Perhaps we had beat this thing! Then as the afternoon wore on, things went south a little bit.

At 2:30 he came to me and asked me to fix his dinner. Bear in mind that I usually start cooking at 3:30 so he was early in requesting dinner. I asked him if he was worried about being late to work, hence the early dinner, but it wasn't that. I told him to wait until a little later and then I would put something together for him.

After dinner and as he headed off to work, he told me that he was having some paranoia and I reminded him of what I had told him the day before:

"The beauty of America is that we are allowed to believe whatever we want to. Some people believe in God and some don't. Nobody has trouble with that. We are also allowed to have any political affiliation. There are Democrats and Republicans and sometimes on the voting ballots there are others like Communists and Socialists. We are allowed to vote for who we want and those people are allowed to run for office under any political affiliation that they are. If you are worried about being imprisoned for your political beliefs, you need to remember what I've said. Often the only reason you hear about people being imprisoned for their beliefs is because they are making a lot of noise like protesting. Unfortunately some protesters get arrested but they are never detained for long. It's the way you go about it that gets you in trouble. When protests become violent and people get hurt then the arrests start. Thomas, you are not making any noise. You have joined groups on Facebook that are in line with your political beliefs and you are quiet in them. You are a young man that works at a big box store and you are minding your own business. What you believe, the political affiliations that you have, are of no concern to the people around you nor are they a concern to the government. You're fine. Everything's going to be okay."

I gave him a shortened version of that speech again yesterday and he was unconvinced but I promised him that I was right about this. He headed off to work and I waited for the call.

It never came.

When I went to pick him up from work he told me that he had a good night and that there hadn't been any crowds in the store. Thank God. With the big Airsoft war being cancelled and all of the anxiety leading up to work, I wasn't sure he was going to make it through the night.

As it stands this morning, Thomas is up right now (hours before he's normally up) and he says all of his close friends have decided to have an Airsoft war here in town. It's not the big event that he had planned on but at least they're doing something. The weather isn't supposed to be great but hopefully they'll play through it and have fun. He's gathered all of his gear together and sits here in the living room eating breakfast and is excited for the day.

Friday, March 13, 2015

Friday's With Tom--How I Got Through A Night Of Paranoia At Work


Hey guys, Tom here and welcome to my blog.

So something happened Monday while my mom was out of town. It was a typical Monday morning, I had my breakfast and watched a little of “The Price is Right” while I ate. Then after breakfast I walked our dog and took in the fresh air and the beautiful weather we were having (its freaking 60 degrees here!). However after it hit around 2 in the afternoon I started to have some anxiety and paranoia about work, which I had in a few hours. My paranoia consisted mostly of that the government would be sending agents to keep watch over me because of my political beliefs.

I started texting my mom about my anxiety and paranoia and we talked, trying to lower it. During the conversation my mom suggested that I fill out a note card for my (“schizophrenic thought”) buckets and I had written, “I am having paranoia about government agents watching me while I work.” And for the challenge I had written, “They have better things to do than keep watch of a 20 year old who works at a discount store.”

It didn't help me at the time so my mother sent a video to me saying how I'm going to get through the paranoia and anxiety and that I am stronger than my paranoia and anxiety. My girlfriend (who I also told I was having some anxiety and paranoid thoughts) texted to me that I will be alright and to take deep breaths. I had done so and by this time I had to leave for work.

As I walked I kept taking breaths and telling myself that I will overcome my anxiety/paranoia. I arrived at work, still filled with anxiety and paranoia. I worked for about an hour and 30 minutes until I couldn't take the anxiety and paranoia any longer (I was still a 7 out of 10 with 10 being the most paranoid). I called my dad (who was off work for the day) and he came and picked me up. By this time my paranoia/anxiety had fallen to a 3 which is about where I normally stand when I'm at work or am going to work.

And that's where the story ends. I am currently slightly calmer now that my mom has come back from her trip. I attribute the anxiety/paranoia with my mom being out of town and that I worked two nights in a row. Usually I work one night, have the next day off and then have the day after that to work so I'm usually refreshed and less paranoid than I was the preceding day before it.
Today I hung out with friends and went to feed the ducks to help lower the anxiety and paranoia about having to go to work this afternoon.

Well that's it for today's post, I have to get going to work and get ready for an airsoft trip with friends. As always, stay beautiful.

There's Nothing Like The Truth

Yesterday's therapy session was one of the toughest I've been in on in a while. Leave it to the therapist, Dr. K., to get to the truth of the matter. In doing so I learned a great deal about how much Thomas struggled on Monday and how much he's still struggling. I know I told you yesterday that he says he's doing fine but when Dr. K. dug into everything we discovered that "fine" is not really what he is right now.

I picked Thomas up from a friend's to go to therapy yesterday and I handed him his "schizophrenic thought" card that he and I together had filled out on Monday. I talked to him about how I felt I had put words in his mouth about what his paranoia might have been about. I wanted him to find his own voice about it before he went into therapy so I gave him a pen and we talked a little more. It turns out that instead of feeling judged by people he actually felt that there were government agents in the store who were coming for him. That was more in line with what I know about Thomas and his paranoid thoughts. Judgment from people really isn't an issue of his and frankly it had been the words I used when we did the card. It's really a guessing game, though, when all I get from him is "I don't know" when he's asked how he's feeling or what he's thinking. Now knowing we were back to thinking government agents were around, it seemed to open a Pandora's box of issues.

Dr. K. asked Thomas to rate the believability that government agents were in the crowds at his work when he was working. 100 means he completely believed it and, of course, 0 meant he didn't believe it at all. Thomas came in at 85. This illness and it's manipulative quality is so frustrating. We can sit there in therapy and Dr. K. and I can say that it isn't the case that government agents are there and yet, still, Thomas holds onto his belief. I really wish I knew what goes on exactly when it comes to these thoughts. Why, when someone you trust, reassures you that you are safe do you still believe you aren't? I mean, I get it to some degree because I haven't felt safe in the past (for more rational reasons though) and it's been a feat to convince me otherwise. My feelings of vulnerability have been centered around things like a murder happening in my town on a trail I love to walk and afterwards I didn't feel safe to go walking at all and eventually just gave up on walking the trail alone altogether. I understand that the chances of a murder happening again are slim but no one can really convince me I'm safe. But a real life murder is rational reasoning for not feeling safe. Government agents in a crowd at a big box store are a whole other story. This illness never ceases to frustrate me and in a way, amaze me. How it twists our loved one's minds is just so unfair.

During therapy I could sense Thomas becoming more and more anxious. I felt horrible for him. Clearly talking about government agents, even now after days have passed, still upset him. When asked to rate the believability that they are out there at this point in time after he's gotten away from the store and had a few days, he came in at a 40. Still, the thoughts are there. Still, he's taken in by schizophrenia.

Then Dr. K. told Thomas he had some good new and some bad news and he asked Thomas what he wanted to hear first. Thomas chose the bad news (a brave move on his part) and Dr. K. proceeded to tell him that these thoughts will most likely be around for a while. The good news? They will eventually go away, we just need to get through this period of time until they do. Yes, they will go away but...but they are here now and they're not going anywhere anytime soon. This is what kills me about this illness. Thomas was fine and one day and night of intense stress and he's back in the thick of it, battling government agents all around him. Not even 24 hours of stress and we are back almost at square one.

We left therapy and stepped out into the sunshine and Thomas stopped in the middle of the parking lot and looked up. He said,

"It's such a beautiful day. We should go sit at the park."

That's a good idea, right? I mean, isn't that what people do on a nice day? For me, though, this was a warning bell. Time and again when Thomas has been stressed he has asked me to take him for a drive up into the hills around town or down the river to throw rocks from the banks. Getting away in some form or another, for him, is an escape from the stress he's feeling. One such trip culminated in a major psychotic break and a one week stay in the hospital. These trips scare me and put me on edge. Just exactly where are we headed here?

When we got in the car Thomas asked if we could stop by the house and get his paycheck and go to the bank before we went to the park so I took him home, all the while trying to figure out what we could do to calm him. As he got his check I was reminded about a time in the last few months that we had driven by the duck pond and he had wistfully said how much he missed going and feeding the ducks. So, as a surprise for him, I gathered up some bread from the house and told him we were going to go feed the ducks. He was so happy!

When we got to the pond we had to walk down a steep path to the pond and from there down a staircase made of big rocks to reach the water. I was wearing high heels so I was teetering my way down the path and Thomas lovingly stopped and offered me his hand to help me down the rocks. It couldn't have been a sweeter offer from my stressed out kid. As we stood there in the sun and threw crumbs of bread into the pond, we talked about the different ducks, marveled at the sounds of the birds all around us and laughed about the ducks that would harass each other for a crumb of bread. We spent a good half hour there in the middle of nature and our visit proved to be a calming influence on Thomas.

With the band aid on now, with the anticipation of his airsoft war on Saturday, he is leaning on some shaky ground in order to get him through work tonight. He believes that the imminent trip to the next town for Airsoft wars is going to be the thing that gets him through tonight's shift. I, on the other hand, am not so optimistic. It's Friday at his store, the sales are on and the crowds will most likely be there. If he's strong, he'll make it okay but if not, we will be looking at another shift cut short. I will happily go get him, though, and rescue him from the "government agents" because he's had enough for a while. We need more duck ponds and less big box stores for now.

(Friday's With Tom is today. I'll post it at 9 a.m.. Thomas very kindly has shared with all of you his personal story about Monday and how he coped. He has opened his mind, the schizophrenic thoughts, and opened his heart for all of you so that you can better understand the experience of schizophrenia from his point of view in the hopes that it will help you all with your loved ones. He offered me a hand at the duck pond and now, he is offering you the same.)

Thursday, March 12, 2015

About Face

After I wrote my post yesterday I decided to read it to Dan. I took a risk in doing so because I never know how he's going to react. Lately he has found articles online about schizophrenia and has read every one, including one time reading one TO me after he had sent it to me and I forgot about it. The fact that he is reading about schizophrenia warms my heart and he really seems to get it and feel sadness and even some respect for the illness, understanding that the things he read about are things that happen to Thomas or might someday. I took the risk to read my post to him based on those experiences lately and I prayed he wouldn't have anything disparaging to say about Thomas.

My fears of his "rejection" of the post were unfounded and we ended up sitting and talking about it for a little bit. He reminded me of something that apparently I just can't seem to get through my head.
Stress causes schizophrenia symptoms.

You'd think I'd get that by now. You'd think that after all this time I could take setbacks of Thomas's and accept them and move on. That is so hard to do, though, when you're in the thick of it all. Perhaps part of it, too, is my tendency to see the world in black and white or all or nothing. Either he's sick or he's not.

Then yesterday I watched "Perception" (a TV show about a college professor with schizophrenia) and afterwards I thought I'd take the opportunity to talk to Thomas about his experience the other night and how he's feeling about working on Friday. I asked him how he was feeling right now.

Fine.

I asked him if he was having paranoid thoughts.

No, not at all.

I asked him if he was ready to work on Friday.

Yes.

I asked him if he was worried about it as far as the symptoms coming back.

No.

Wait. What? What happened to the level 8 paranoia? What happened to not being able to stay at work that night? What is with this complete about face where work is concerned?

To his credit, he understood that the stress he was under from me being gone and the subsequent anxiety was the beast behind the downfall. So it left me wondering,

"How will he REALLY do on Friday?"

Early this morning I was talking to Dan again about what Thomas had said yesterday about being fine and he reminded me that Thomas is riding a high from the fact that on Saturday a HUGE group of his friends are going to another town to a big area-wide Airsoft BB gun war. He's been looking forward to doing this for a long time but none of his friends had been able to go. The plans are made, though, and they will leave at 6:15am Saturday morning to spend the day under the hail of BB gunfire.
Dan is right. Thomas has meaning in his life and that meaning is taking away from the nasty feelings of anxiety and paranoia. It makes Dan and I wonder, though,

Do we need to encourage him to get out more, perhaps find a class to take or something to keep his mind off of any transient symptoms that might crop up?

It seems like a terrific idea in theory but it wasn't too long ago that Thomas and I sat in therapy and Thomas voiced that taking a class scared him because he was afraid the stress from it would cause him problems. I have tried to come up with ideas of things for him to do but they all get shot down. Work doesn't fill his time, he's not the least bit interested in volunteering and his two loves are BB gun wars that don't happen that often and the newly acquired social interaction of the model train club that only meets once a month. He needs more meaning in his life. I just don't know how to help him find it.

So, I don't know. I don't know what to do to get his mind off of anxiety and stress. Tomorrow is Friday and another shift at work so that will be the litmus test for how he handles a day at work when I haven't been away. Perhaps he will sail through it like a champ and last Monday will become a distant memory. That is my hope anyway. With stability lately being the norm, hopefully this last little taste of what it's like to have full-blown schizophrenia in our lives again will be just a blip in the radar.

Wednesday, March 11, 2015

The Monday From Hell

I am back here now in front of my computer writing this and I am thankful for this in so many ways. I'll keep the list of why very short because what I am most thankful for about being here in this chair in front of this screen is that I am finally home with my boy.

I tried to write yesterday but lost the whole thing when the hotel WiFi went out and I didn't have the energy to write it all over again. Monday had been a rough day for Thomas and my heart was broken and trying to write all over again about it at the time was just too hard. But here I sit, now, and I can finally write.

I hoped that things would be different for Thomas on Monday after such a good Sunday but when Thomas woke up on Monday morning and texted me that he was anxious I knew we had a long day and night ahead of us. I initially tried to fix it by taking him virtual shopping with me so he and I together could find him some new shoes. He seemed to have fun with that but once he picked something out and an hour of silence between us passed I got more texts. He was anxious about work and once again it wasn't about being on time surprisingly. Again I found that his fears lay in actually being at work and the crowds that were there in the store were spiking his paranoia.

Oh God. No. Not the paranoia. Anxiety, yes, we can do that. A little lorazepam and some loving words and he could be on his way. That was not to be though. As I texted with him he told me his paranoia about the crowds was climbing higher and it was, at that point, a 5 out of 10. 5 sets off serious warning bells for me, 5 is not a safe number for him to be at. I sent him a video text as I hid out in a dressing room in Eddie Bauer and I encouraged him by telling him that he is strong and that he's beat this kind of thing before. What I got back from him was a "thanks" and a big smiley face and I thought I'd fixed it.

I was wrong.

By the time I got back to the hotel his anxiety and paranoia was a little higher and it dawned on me that this would be the perfect time to use his "schizophrenic thought blue buckets" that Dr. K. designed. I told Thomas I was going to call him and that we were going to work through this together and fill out a 3x5 card. When I called him he sounded so tired and his words were slurring. He had already eaten his dinner and taken his meds (it was only 3 p.m.) and together with the lorazepam I had instructed him to take a little earlier, he was pretty sedated. That was not a good way to start a night of work.

I explained to him that paranoid thoughts were schizophrenic thoughts and we had to find a challenge for them. He was unable to explain exactly what he was fearful of about the crowds and I finally asked him if he felt they were looking at him and thinking bad things about him or even saying bad things about him. He kind of took to that and while I didn't like putting words in his mouth or thoughts in his head that weren't his own, I wanted to find a way to get him through this. I relayed a story to him about my day with my mom and how we had become tired from wandering the city and we weren't in the best of moods. I told him that a couple of cashiers had apologized to us thinking they were the source of our irritation and attitude and I told him that instead we hadn't been thinking about them at all but were instead thinking about how tired we were and about getting back to our room and putting on yoga pants and having a drink. I told him that the people in the crowds at his work were probably the same way, that they were just looking for some shampoo or thinking about what to make for dinner or worrying about the fight that they had with their spouse that morning. I told him that in all likelihood their thoughts weren't about him at all and that they just didn't care about him being there in the aisle with him.

He wrote down that his schizophrenic thought was that people were thinking or saying bad things about him and then we got to work on the challenge. I reminded him again about the story I told him about my mom and I and we settled on that being the challenge. He wrote it down and put it in the bucket but it was of little comfort to him. There sat the 3x5 card in the bucket and now his paranoia was at a 6.

So much for the buckets.

It was time for him to leave for work and I told him that as he walked he needed to take long, deep, slow breaths and remember what the challenge card said. I told him to commit it to memory to help him get through the night. As he neared work his anxiety was sky high and I finally, in defeat, told him to try to make it to 6 (when Dan got off work) and if he couldn't go on any longer to go ahead and call his dad to come pick him up. I heard nothing more from him.

When Dan got home I told him that Thomas might be calling him but it was 6:15 and there was no call. I was so happy. I thought Thomas might just get through this night. Minutes passed and a text came to me from Dan saying,

"I going to get the boy."

Dang it.

No!

I texted Thomas and he told me that his paranoia had reached an 8 and I was knocked back a notch or two.

An 8????

I can't even remember the last time he said he was an 8 with anything.

An 8.

My poor kid.

Once he was home and away from work his paranoia began to subside. He was tired and I told him to just go to his room and rest and he did. By 9 he was tired and he texted me that he was going to bed. Finally, an end to this horrible day for him.

I couldn't help but feel completely defeated. We had implemented all kinds of tactics to fight the paranoia from pure love to videos to lorazepam to the schizophrenic buckets and finally to a last ditch effort as he walked to work to shore him up for the 5 hours he had ahead of him. My love and my efforts had failed him. My fairytale world where the love between two souls conquers the evil that threatens their life evaporated into the ether and the damage left in the wake of it all is irreparable. I don't see how he's going to be able to return to work again or he'll go but he won't be able to stay. Paranoia had won, had taken Thomas away, and every effort to conquer it was in vain.

He has therapy tomorrow and will work again on Friday so we begin again to try to repair the damage or find an answer for how to conquer this hateful monster.

Monday, March 09, 2015

Being Away From Thomas

I wanted to write today but there is very little to write about. Thomas did well yesterday because Dan was home. Through texts I understood that the two of them were a team yesterday which makes me happy. After a rocky couple of days before the trip where Dan and I fought about Thomas, I wasn't sure how things would go for their relationship. Dan had overheard me on the phone with my mom leading up to the trip and I was telling her about how I was anxious about leaving Thomas and how Thomas was really struggling with me being gone. Sometimes Dan gets mad at Thomas and voices that he thinks Thomas is "being a baby" (or that I "baby him too much") and that he should be able to take care of himself and his anxieties without me. We all know that's not possible.

At any rate he was mad at me for being anxious and mad at Thomas and because of that I was sure he'd have a few choice words for him when the two of them were alone. Thomas can't defend himself in those situations because either he's scared to stand up to Dan or he's crippled by anxiety for being called out in such a manner. Dan can be so good to Thomas and he does love him and considers him his son so when things are good they are really good. So, it appears things are good right now. Thank God.

As for me here in Seattle my mom and I are power shopping which means sore feet, numb toes, back aches and being dead tired at the end of the day. The good thing though is that I am finding some good tops to wear for my conference in April. I have lost 27 pounds and all I own are drapy, shapeless tops and I can finally now wear things that fit my figure. This is a huge accomplishment for me given that I got quite overweight over the last couple of years with both my dad being sick and dying and Thomas being sick. Keeping weight off wasn't my priority and under that amount of stress only eating brought me joy and comfort.

This trip will prove to be a test for both Thomas and I. I have finally relaxed enough to enjoy myself and not obsess over how Thomas is doing and he gets a chance to taste independence. Today he will be alone and will have to get dinner for himself and get himself to work. It'll be potentially tough for him but I'm hoping he'll stay brave. This is the last day he works until I get home so today's the day for him to shine if he can.

I haven't gotten a chance to shop for him yet so I hope to do a little of that today so I can bring him a present. I want him to have something special from this trip. That young man is my life. I just want him happy.

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