Friday, February 28, 2014

Help.....

Dear God how do I help my boy through the loss of his grandpa. He is grieving so heavily right now.......

My daddy died this afternoon..........................

An Odd Kind Of Justice

Yesterday was therapy day and I was once again called in to the session with Thomas. Honestly I don't know how I'm getting so fortunate to be able to go in but I'll take it while I can.

I had told Thomas' therapist through emails about Thomas tripling his hours at work and his reply had been to have Thomas cut them back; a suggestion that I knew would never fly with Thomas if I were to approach him with it. I had then asked his therapist to please help me with trying to get through to Thomas that it was a good idea to do so. I hadn't received a reply but when we sat down and he started talking, I knew he had heard me.

He began with talking with Thomas about his hours and the back and forth conversation went on for 10 or 15 minutes with Thomas, of course, refusing to cut back his hours. Thomas' attitude? Why work at all unless you have at least 3 days? He has a point. When he's healthy. He's not though so his insistence on keeping the hours made that very apparent to his therapist.

We then went on to talk about his "time anxiety" that accompanies working. I really wish I had a recording of the conversation because what came out of Thomas' mouth and the exchange that ensued was the kind of conversation Thomas and I have quite often. None of anything is logical and very little of it makes sense. He is so wrapped up in how he sees his anxiety and how it "works" for him that he is unable to see another person's point of view. I watched through the whole conversation as his therapist repeatedly shifted in his chair, leaning backwards, then forwards, then repositioning himself. All of that movement was accompanied by frustration on his part as he fell down the same rabbit hole that I go down pretty often with Thomas. Falling into this hole is like going to a nether world where up is down and left is right and the sky is green instead of blue. You know what the world is supposed to look like and where to go and while it looks vaguely familiar, you are unable to figure out what to do. Such was the world that his therapist found himself in and I was fortunate this time around to be sitting on the edge of the hole looking down and observing the whole exchange.

That poor man. I felt sorry for him as his voice began to raise and his temper would slip from his grasp every now and then and he'd say something like,

"Work with me here Thomas."

or

"I'm trying to help you here!"

Of course Thomas didn't budge and instead became more insistent on his point of view, effectively shutting out anyone's valiant attempts to get inside to help him better deal with his anxiety.

Then it happened. The medication discussion. Thomas' therapist brought up the anti-anxiety med but not before apologizing repeatedly for even stepping in to that territory. I knew he was trying to keep me from being mad and frankly I wasn't because he was attempting to use all of the tools in his tool box and since traditional therapy wasn't working, guess where we ended up? Yep, relying on meds to help Thomas cope. That discussion released another monster from Thomas' mind and his therapist jumped back in to help Thomas find his footing about when and how to use his anti-anxiety med to help his anxiety. That went fine in that Thomas doesn't have a problem taking it and in fact welcomes its calming effect but where the problem lay in this scenario is that Thomas feels "compelled" (Thomas' word) to ask me for it and/or tell me he took it. Bear in mind, a while back, I metered out 5 pills into a bottle labeled with his name and specific instructions on how to take it and told him he had complete control of it. It sits on a shelf in the kitchen for easy access. This sense of his, this feeling of being "compelled" to tell me he took it became the next rabbit hole the two of them fell down. Again I watched and having been through all of this a thousand times with Thomas I knew just exactly what his therapist was thinking and feeling. In a way, I felt sorry for him because obviously he had never truly jumped in the ring with Thomas and tried to unravel something so seemingly simple.

Needless to say, the session was completely ineffective, in fact, I would say is was a raging failure if not a complete step backwards altogether in the world of his therapy. Even though I had little hand in trying to help his therapist, I knew from experience that trying to unravel Thomas' delusional thinking about his "time anxiety" and his meds was virtually impossible and to me, not even worth the fight. Even though I had sat back and let the professional take the lead, I came away from that session uneasy and a little bit anxious myself. Thomas, too, came away battle scarred, angry and anxious. It was not a good session and from my view nothing got accomplished.

What I did walk away with was a certain feeling that an odd kind of justice had happened. After all of my emails, after all of my calls to his therapist where I was frustrated and angry and not liking Thomas very much, he now finally saw just exactly what I deal with on an almost day to day basis with Thomas. I couldn't help but say a silent "I told you so" to him inside myself because I think he finally understands the battlefield I step on to on a regular basis and the feelings it leaves me with as I walk away defeated yet again.

Thursday, February 27, 2014

The Magic Formula

As we head into yet another therapy day I am wondering what is ahead of us. Thomas' therapist had suggested that Thomas go back in to his boss and decrease his hours a little bit but I just can't imagine that he'll do that. I asked his therapist through email to help me speak to Thomas about this as I don't feel like he would listen to me at this point. In some ways I can't blame him for not wanting to go back in and ask for reduced hours after he had just been in there asking for more. I have to say, if I could do it for him, I would but I don't feel like it's my place to do that. I don't want to be his "mommy" running in there to fix things since he is 19 and is looked upon as an adult.

I was talking to my mom yesterday and explaining this to her along with some other things that I see going on in Thomas. Her suggestion was for me to stop worrying so much about him. My question for her was,

"How can I not worry? With him fluctuating like he is, I just don't know what's going on with him and with him like this, I know that something is going on and that worries me."

I have to wonder though, how is it possible not to worry? I currently am suffering from some pretty serious pelvic pain that is unlike anything I have ever felt before. The pain level reaches a 10 out of 10 a few times during the day and it scares me. I'm guessing that the pain is there because something is wrong and I'm willing to go out on a limb and say that it's something stress related. You see, my body has been slowly breaking down since all of this started a couple years ago. My comprehensive blood tests show a body under stress and I see my doctor every 3 months so she can watch it and make sure it's not leading to something really bad. I know that this is happening to me and yet I can't seem to let loose of all of the things that plague me about my life. Between my dad who has some pretty rough days pretty often that make me feel like my heart is being torn from my chest and then Thomas and his fluctuating and just generally deteriorating mental health, life isn't easy and stress is just a fixture in my life now. I was hoping that my body would just eventually get used to it and reset itself at this new level of stress and way of living and I would start to feel better. Obviously that isn't happening. I'm guessing my body is going to continue to push back at me until I find a way to decrease the stress in my life. How I'm going to do that is beyond me.

As for my source of stress where Thomas is concerned, it comes from (obviously) worrying about the new things that have cropped up. For example, the last two nights he has gone to bed when we do around 8:30 or 9 and that is a drastic change for him. He seems so flat and pretty beaten down by the day's end and I'm not sure what is causing that. I hate these changes that I term "disturbances in the force" and I think my worry comes from the fact that I have zero control over anything that is happening to my son. Coming from a person that likes to control as much as possible, this is a pretty rough way to live. Between my dad's decline and Thomas' illness I am certainly being taught some lesson about letting go of that inflexible part of my personality. After trying to change a lifetime of fighting for control of my own mental health and other aspects of my life that did see changes when I took initiative and fought for myself, it is hard to relinquish that control now. I have tried to hand it all over to God and I like to tell myself that I do but when Thomas shows signs of his illness I can't help but instead ask God just exactly what are His plans here? Assuming He had a hand in Thomas getting sick, I often wonder why He did this to my son and consequently to myself and my family. I know that there must be some greater plan that I am not privy to but waiting for that to come to fruition is nothing short of excruciating sometimes.

So, today, on day 4 of my newly acquired pelvic pain, on day (who knows anymore?) of Thomas' therapy, on day ~1,278 of Thomas' illness, I wander in to it assuming I will somehow, by sheer will, be able to change it all if I can just figure out what the magic formula is for change and some semblance of control.

Wednesday, February 26, 2014

Out Of Control

Ever since last week's therapy and the suggestion that Thomas set some goals for himself, he has hopped on the rails like a train barreling down a steep hill with a big curve at the bottom that is threatening to derail him.

I wrote about him wanting to move out of the house and that goal has been the catalyst for all that has followed since then. To his credit he faced his anxiety and went in and asked his manager for more hours. What he got was exactly what he asked for only they scheduled him to work on Sunday 5-10pm and then again on Monday 5-10pm. As you are well aware by now, he fights what he terms his "time anxiety" and with working two days in a row it became very hard for him to cope. I tried everything I could to calm him and keep his life stable for those two days he worked but by Monday night before his shift, I came in from outside to find him sitting in his uniform, on the couch, in utter silence and the low light of the living room with 45 minutes still to wait before his shift. He was stressed beyond anything I had seen from him in a while and I asked him what he needed from me to help. All he wanted was my presence beside him so we sat together and watched some TV. From my vantage point I watched as he melted down, checking the clock practically every minute and I wanted so badly for him to have some peace from his crippling anxiety. As I drove him to work he fought back a level 6 anxiety and as he got out of the car I told him how much I loved him and wished him a good night at work.

The thing is, he is now so bound and determined to leave home that he's willing to endure the anxiety he feels and when I asked him if he felt it was still a good idea that he work the extra hours he vehemently said "yes". He is unmoved from his plans to become more independent which is now adding to everything else that he's been dealing with prior to the ill-fated goal setting therapy session. I am watching an out of control, delusional young man sink yet again into his illness.

While in that session, the subject of his drivers license came up also. It was fleeting and I thought it had somewhat gone over his head. With his voice that comments constantly on what he's doing and with his meds that lessen his ability to focus on things, I just don't think him getting his drivers license right now is a good idea. Then last night when I came home from my dad's, Thomas came out of his room and excitedly announce that he is "back into cars again." I asked him what he meant by that and he said he was looking at car customizations. I asked him what he had in mind for a car and he said he was planning on customizing the car we promised to give him if he got his drivers license. My heart sank because I knew what this meant; he was adding getting his drivers license to the already overzealous plan to move out.

As I explained this new plan of Thomas's to my husband last night I had to wonder to myself, "am I looking at this wrong? Is this the efforts of a young man who is getting well?" I am torn because what my gut tells me is going on is that he has taken this plan of moving out, of increasing his work hours, of rebuilding the car and he is running far and fast while cloaked in a delusional belief that he can now, all of a sudden, do it all and he is now hell-bent on succeeding at that. The problem with all of this is that he hasn't truly thought through any of it. He stands firmly rooted in front of me and tells me he can do all of this and yet he can't even go to work without feeling immeasurable anxiety, he forgets his pills often and will take them only after I've reminded him, he only showers when I remind him and even then he often refuses and the list goes on and on. This young man is far from living life on his own and I am unable to stop him at this point.

I emailed his therapist and told him what is going on with Thomas and about the extra work hours and he came back with a suggestion that Thomas again cut his hours back and tell his manager to instead add just 2 hours a week and then add more as Thomas becomes more stabilized. There is was again. Stabilized. That is the word that comes from a doctor's mouth that indicates that your loved one is still sick, still struggling and far from realizing such ambitious dreams.

So, I don't know what I'm going to do now. I've tried having casual talks with Thomas about the truth of what he's trying to do with his goals and he's hearing none of it. Every time, and it's not been too often because of the resistance I meet, he stands his ground and refuses to listen to me. As I said above, he is a train on downhill tracks with a curve at the bottom. I'm standing by watching as he careens, out of control, down this hill and I am dreading what fate will bring him at the bottom as he nears the curve.

Monday, February 24, 2014

What Happens At The Bottom?

There is one thing about Thomas' illness that I continue to get hung up on. Those delusions of his plague me constantly as I am promised time and again that he will get better. I have watched some things improve but what has remained firmly implanted are the delusions and I don't see where they will go anywhere anytime soon. I have asked doctors over and over again lately about them, I guess waiting for someone to say something that will make me feel better about their existence and when I have explained how long he has held them (since 8th grade--5 years+) they do what everyone else has done and their expression changes to something that looks like sadness and they cease to reassure me like I would like to be reassured. You see, the longer-standing the delusion is, the less likely he is to recover from them, that is what I have been told in the past anyway. I repeatedly ask about them because there must still be a part of me that thinks either that Thomas will get well completely and this will all have been a nightmare or that he will never get well again. Inside both of those thoughts lie a person who is still in denial about Thomas' course of "recovery" but somehow just accepting what is, isn't an option for me right now.

So, I wrote Dr. N. an email and asked him about Thomas' delusions yet again. I've got to hand it to Dr. N., he is very patient and kind with me and all of my emails. I'm trying to keep them to a minimum but because he always answers them with professionalism and compassion, I find myself turning to him time and again for his thoughts on things. The following is the email exchange we just had:
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My question:

Thomas had therapy yesterday too and in that session we discussed his self-esteem and tried yet again to help him to give himself positive affirmations every day so that he can find some self worth. His therapist questioned him further and discovered yet again that Thomas' sole source of self esteem comes from his delusions. Upon even further questioning we discovered that this delusion is with Thomas (according to Thomas) every hour of the day and it gives him a great feeling of power. Yet again it is evident to me (and to his therapist) that his delusions are well-entrenched and are not budging, in fact seem to be continuing to grow and solidify. It is (and I think I've said this before) those delusions that concern me a GREAT deal. I have been told several times from several different doctors and nurses that because his delusions were around long before we discovered them (they started in 8th grade) that they will be virtually impossible to treat. Even his own therapist can see that his efforts to change them are failing. Can you tell me what YOU see for his future concerning these delusions? It is my greatest fear that they will continue to worsen and he will get sicker and sicker. I have little hope for a decent recovery/remission for him because of that.

Dr. N.'s reply:

As for delusions that are very longstanding, there is possibility that they will get better, or that they will remain, it's too early to tell. In people who experience that kind of delusion, a typical course, if the medications start to work, is the person feeling gradually less consumed or preoccupied with them, even if they still believe them 100%, then slowly starting to wonder if they are not true, until they might even no longer believe them. However, there are some people who might continue believing them despite medications, but might "get over" them with time. For example, I had a patient with delusions who was sure there were people monitoring her every move, who, after being on the medications for quite a while started saying those people left her alone, while still believing the events happened in the past. She got to a point where she was no longer watching over her shoulder all the time. But it's too early to know how this will play out for Thomas.
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While he tries to give me some modicum of hope, it is evident in his email that we have a long road ahead of us. It is that long road that trips me up all of the time. Where a Band-Aid and some Neosporin with a kiss and hug used to help a painful fall and a teary-eyed child, we are now at a point where there are no longer quick fixes for things. Schizophrenia, and more specifically delusions, are going to be a fixture in our lives that will heal slowly....if at all...............

So, as always lately, I find myself swirling in a whirlpool with the debris of this illness rotating around me and bouncing off of me as we make our way down to the dark depths of the unknowns of schizophrenia. I know there is a bottom somewhere down here but the question remains, will we land in an exhausted heap at the bottom or will we find our footing, stand up and push back to the surface.

Saturday, February 22, 2014

Setting Goals For Thomas

As I said yesterday, therapy went pretty decently mostly in the fact that I wasn't edged out of the process after my email exchange with Thomas' therapist. It actually was quite amazing because the opposite happened instead. I came in and his therapist laid out what he wanted to talk about for the session which has never happened before. I felt like this was his way of telling me he had heard me in my emails and that he now saw us as a team.

First we talked about how we needed Thomas to set some goals for his future. I loved this idea and we turned to Thomas to see what his goal might be. Right away he piped up with,

"I want to move out."

I stopped for a second, surprised. Moving out? I had far smaller goals in mind as did his therapist but we decided to talk to Thomas about this. It turns out that he's feeling pressure to leave home because he has friends that have left home for college. I feel bad for him being so focused on what amounts to a general feeling that people he knows have moved out however his closest friends and most importantly his best friend still live at home and his best friend doesn't even have his driver's license just like Thomas. The thing about Thomas is that he feels these pressures very deeply but then doesn't think through what it really means to leave home. What he does know is that he doesn't make enough money to be able to do that and he is frustrated about that.

I looked at his therapist and I said,

"I think the goals we (his therapist and I) had in mind were slightly smaller like being able to get some more hours at work, among others."

Thomas agreed that he needed to do that and decided that he was going to ask for more hours the next time he saw his manager. Now, I am not exactly thrilled about this given that he's still trying to get well but as I have in the past, I said nothing about it because I think he needs to try these sorts of small things for himself and either come to the realization himself that he's not quite ready or even better that he can be successful at it. There are some things that I just won't stand in his way about because I don't want to rob him of a chance at life.

Then his therapist suggested another small goal of perhaps just spending a night alone while my husband and I go away for a night for some alone time. Just like in the past, Thomas immediately showed anxiety about this. We dug a little deeper into this and learned that the reason (or rather one of the reasons) is that he doesn't feel like he can prepare a meal for himself. His therapist asked him if he could cook himself a TV dinner and he shook his head "no". Then his therapist asked if I put the exact directions on how to cook it taped to the front of the microwave, could he do it? Thomas again showed trepidation. We went on to question him about other meal ideas and finally he admitted that he was very anxious about doing it himself because he's never really done that.

For the record, I have tried several times over the years to teach him to make meals and he's stood by my side and cooked or watched me cook. He's been taught the skills, he just can't draw on them for himself when he is alone. What surprised me the most is that he rated his anxiety about preparing a meal a 6 out of 10. That's high for Thomas. "A 6?" I thought to myself. "How can this be so high?" His therapist pointed out that in order to move out on his own that he will need to be able to cook for himself and Thomas looked like that hadn't occurred to him. We all talked more about him moving out but then all of the anxiety about other things related to it prompted other questions.

Then, there we were, back at the recent million dollar question and that is about his delusions. His therapist went back over Thomas' inability to give himself positive affirmations like,

"Hey! I'm a pretty handsome guy!"

or

"I am really good at building computers."

and that led back to the fact that his sole source of affirmation is when he thinks about his delusions. Like a light bulb going off, I saw his therapist think to ask how often he thinks about this and gets "pumped up."

"Is it every day?" asked his therapist.

"Yes." Thomas admitted.

"Is it more than just every day?"

"Yes."

"OK, so let's explore this a little more. Is it every hour or all the time?"

Thomas thought for a minute and he said,

"It's every hour."

Wow. Just wow. Every hour? I had no idea. So his delusions consume him constantly and worse yet for those of us trying to help him, they are so entrenched and we realized even more so how serious they are. I was defeated as I am now realizing that the biggest facet of Thomas' schizophrenia are his delusions. It's not like I'm surprised necessarily, it's just that I can see now how much of his psyche they occupy and I feel like there is little hope of recovery for him from his delusions.

Therapy went on to discuss the possibility of Thomas going on disability which is a post for another day because it is a topic of importance that deserves its own post and consideration from you if you choose to contribute.

In the end, therapy taught us all that Thomas isn't yet ready to move out. We talked solely of getting a meal prepared but there is much more to consider, like him remembering to take his meds. I feel terrible for Thomas because he wants a life like his peers have but sadly it's obvious that he is far from that goal. This is what I hate about what schizophrenia has robbed from him. He's well enough to understand that his peers are moving on with a "normal" life and he is caught behind working one day a week for minimum wage and still living at home. I want more for him, he wants more for himself but there is a long road ahead yet to be traversed before he realizes this goal he has set for himself.

Friday, February 21, 2014

A Day Of Doctors

Yesterday turned out to be a very long day. We had to be up early in order to get Thomas and I to our appointments with our respective psychiatrists and then have lunch at Thomas' favorite restaurant and then make it home in time for Thomas' therapy. The roads were icy and slushy, there were huge gusts of wind and it was raining. A bad combination of weather to be driving a great distance in. In the end, though, it was worth it and we all came away with something to think about.

First of all, I saw my own psychiatrist. We have been on a hunt for a medication to help my bipolar and we settled on Seroquel. Having just woken up and feeling calmed, I would say we found something that works for me. Thank goodness as I needed something to calm my racing brain and help me sleep.

As for Thomas' visit with Dr. N., it was amazing. Once again Dr. N. took a full hour with Thomas and we went over everything and discussed the next step in his treatment. Upon reviewing 2 weeks worth of blood pressure/pulse rate readings, Dr. N. felt that decreasing the clozaril was still something that needed to continue. I'm getting pretty settled with that idea now but still feel desperate to find something to get Thomas back on his feet. Dr. N. is increasing the Latuda though and stands by that his ultimate plan is that the Latuda alone will eventually be enough to hold Thomas. He said that normally they can increase the Latuda very quickly but because Thomas has the clozaril in his system that he has taken a conservative approach to the titration so we'll have to wait a little longer for it to take full effect. Since that is the plan than that is what I have to prepare for. On top of that, poor Thomas is dealing with extreme and dramatic (to me) drooling at night. It is very striking to see his pillow and bed each morning and I do a lot of laundry to keep ahead of it. As per usual, Thomas seems to take it in stride so it is my heart that breaks for him. We were going to try to add a medication to stop that however what can be added understandably (because it dries up the salivary glands) also causes constipation which Thomas is already fighting from the clozaril. I've got to say, I might be more supportive of the clozaril if it had worked but instead, for Thomas, it has caused only heartache from all of its side effects. For once with these antipsychotics I would say, for Thomas, that it's just not worth it just because of the side effects alone. I am hanging onto my faith that we'll find something for him that works and maybe Latuda is it. We shall see.

Next came therapy. I can't tell you how stressed I was about having to face his therapist face to face after our whole email exchange this last week. I spent most of my day summoning courage to face him and finally decided that I was going to handle it like I do all other things in my life and that is to hold my head high, keep my confidence strong, and pray that things work out for the best. Needless to say, as I sat in my chair in the waiting room that is right in the therapist's line of sight as he comes out of his office, I prepared myself for just exactly how I was going to act. As he emerged he looked directly at me and smiled and said hello. I've got to say that a part of me was a little bit stunned at such a warm welcome but I was then ready for our meeting. Again surprising to me, I was called into join in the therapy. I felt certain that I was going to be edged out of therapy because of my "behavior" but instead he chose to continue to include me. So, it seems, all of my preparation and prayers worked and I joined them for a meeting that proved, yet again, to be a pivotal meeting in Thomas' treatment. There is so much to tell you about the meeting but I will save that for tomorrow's posting since this one has already gotten long enough.

All in all, the day went well. We made it back and forth from all of our appointments safely, we had fun with my sister, and I learned a lot more about Thomas' thinking and beliefs. Wow, I've got to say, learning about more facets of how this illness manifests in my son never ceases to knock me back a bit. I have to wonder if these sorts of revelations ever stop. Thomas lives with so much that is hidden from me so he's, for all intents and purposes, ok with it. I, on the other hand, am still in the process of learning and acceptance and grief.

Thursday, February 20, 2014

Honoring Family

Today we will drive up to see Dr. N. I am so looking forward to hearing what he has to say about things with Thomas. With the decrease in Clozaril, Thomas has been sliding backwards a little bit and I have to wonder what the plans are for what to do next with Thomas. Since we saw a change in Thomas with the Latuda, I think we'll probably be adding more in and seeing what happens.

What I want to write about today though is my sister. I am honoring her today because she is here visiting and she will ride up to Dr. N.'s with us today. I love her company but even better I love the effect she has on Thomas. Somehow she has a light in her that brightens Thomas and I really want him to bask in some of that light for a while, especially today, since his day will be filled with anxiety because we have appointments to get to all day all over our part of the country and then on top of that, he has to work tonight for the first time in a week and I know that's already getting to him.

The thing about my sister though is that she is also an amazing mom. She is raising 8 children and her oldest is now out of the house successfully going to college. What has tested her as a mom is her daughters that are around Thomas' age. One has seen great trauma in her life and as a result has developed severe alcoholism and struggles daily with sobriety. She is Thomas' age and in her young life she has seen more than most see in a lifetime. As a mom, my sister has fought for her to keep her safe and sober and spent nights in the E.R. holding her daughter together and fighting to hold herself together at the same time.

Even closer to my heart and closer to Thomas is her 3rd youngest daughter who developed severe childhood onset bipolar disorder. From a very young age, this young lady has fought the most severe form of this illness and again my sister has spent many a night in the E.R. and many more nights not sleeping as she kept vigil over her daughter trying to insure her safety from herself and her demons. My sister, practically alone, has forged the road ahead of me teaching me how to have strength in the worst possible of times. A couple of years ago her daughter made a serious suicide attempt and almost died as a result and it was my sister who sat at her side in the hospital day after day as her daughter fought to come back to her from the brink of death.

Not only that but things became so bad with her 3rd youngest that she had to say goodbye to her and leave her alone clear across the country in a psychiatric rehabilitation facility and was only able to fly down to see her once a month. Seeing her daughter sink to the darkest of depths and begin to fight for herself broke my sister's heart but somehow she found the strength I so admire and she was able to bring her daughter home to live with the family again.

Her road and her children's road has been one of the hardest that anyone has been on. My sister has seen things no mother should have to and amazingly she remains on her feet fighting the fight every day to help both her daughters hang on to their sanity. It is that special gift that she has that she brings to Thomas' life too. When Thomas was suicidal my sister happened to be here visiting and she came with us to the E.R. and lightened the mood by telling Thomas stories of the silly things all of her 8 kids do and when silence enveloped the room we were waiting in to see a psychiatrist, my sister blew up a rubber glove, whipped out a Sharpie marker and drew a face on it calling it her rubber chicken and consequently making Thomas and I both laugh in a very dark time in our lives.

The night Thomas was admitted to the psych hospital for suicidal ideation is was well into the early morning hours and we were all so tired but my sister came with Thomas and I up to the intake room and with a confidence and professionalism borne of her own fight for her daughters, she helped me put into words the things I couldn't in my grief over Thomas. As we left Thomas on the psych ward and got in the elevator she stood silently and strongly by me as I cried quiet tears about Thomas and without a touch or a word her presence brought me comfort and by the end of the seemingly long elevator ride to the lobby, somehow she gave me strength to dry my tears and walk out into the world with dignity.

Since that time, when she has come to visit she has brought all of her best self, her strength, her experience, her light, to both Thomas and I and it is those very things that I lean on today to bring Thomas some peace on an otherwise very stressful day.

I love you Angie, more than words can say. You're the best big sister and aunt a family could ask for and I thank God every day that you light my path ahead of me so that I can find strength to be the best mother to Thomas that I can be even in the darkest of hours. I don't know what I would do without you in my life.

Wednesday, February 19, 2014

Yes, I'm Pretty Sure I Love Dr. N.

After that appointment with Thomas' therapist last week and the whole debacle about meds, I came home and sent Dr. N. an email asking his opinion on the whole thing. I trust him to tell me the truth about what is right for Thomas with meds because he has attempted to be conservative so far. He seems to have hope for Thomas and right now I need that very badly so his opinion means the world to me. The following is his response to my email questioning him if Thomas needs meds and explaining what the therapist said:
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"Studies suggest that antipsychotics are protective to brain cells in schizophrenia, and that people who suffer from it tend to do best in the long run if they find a successful treatment and stay on it. That being said, I do think that just having to put up with side-effects is not ideal, and as frustrating as it can be to try different medications, I have hope we will find something that works well and is better tolerated. I think for a therapist, seeing a person suffer so much from side-effects can be difficult, and his comment might have been well-intentioned.

Please, let me know if this clarifies your question about the meds. We'll work hard to find a treatment that works for him."
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Do you see why I love him so much? :)

Not only does he have faith in finding something for Thomas but he also cares about Thomas and the side effects and he's diplomatic about Thomas' therapist which I surely was not at the time. I'm definitely going to keep this guy in our lives even if it means I have to sell a kidney to afford him.

As for Thomas' therapist, I wrote him another email explaining that I didn't feel he was practicing medicine but I passed along my blog post about that video he gave me to watch. I have heard nothing which doesn't surprise me but I would have liked to hear something. I guess I just want the waters to be calm when I walk in there on Thursday and I fear now that he'll stop including me in Thomas' sessions where it's needed. I feel justified in my anger and my response so I guess I will just have to bear the burden of his displeasure about the whole thing.

As a final note for today, I had a dream last night that I was in an interrogation room and someone was standing over me yelling,

"SAY IT! SAY THAT YOUR SON HAS SCHIZOPHRENIA!"

In my dream I just couldn't get the words out and finally felt so scared of the interrogator that I quietly and with defeat in my voice said,

"Yes, my boy has schizophrenia."

You see, my dreams are often hard to separate from reality so I woke up this morning feeling like I had actually been forced to admit that. Obviously my subconscious thinks that I haven't come to terms with the fact that he has schizophrenia and it was forcing me to face it. I guess now I can't hide from it in my dreams anymore either.

At any rate, 3 cheers for Dr. N.! He's on his game, he cares and he communicates with me. I could not ask for more.

Tuesday, February 18, 2014

Disability

It has been brought to my attention lately on more than one occasion that I should have Thomas put on disability. A while back I had looked into it by speaking with a disability advocate/lawyer and explained Thomas' situation and she had told me that because of his diagnosis and his track record so far that he would more than qualify. She said that the government views schizophrenia as a lifelong disability and would approve Thomas without any problems. She made it sound so easy and yet, why haven't I started him on it yet?

The easy answer would be that I don't want the hassle of doing it because it's a lot of work, a lot of waiting and from what I have heard there is often a denial or two. That's the easy answer, that I don't want to deal with all of it.

The larger more truthful answer is not so easy. When it is mentioned to me something in my stomach knots up. I think about what it would mean for Thomas, what it says about him. You see, I had dreams for him. There is a car commercial with 4 young college-age people in a car hanging out in the city and then going to the top of a mountain and getting out of the car and dancing around as the city lights twinkle below. It is the quintessential young adult life. Going out with friends, doing fun things, laughing together about life and the people around them, staying up late and if they're of age, going to a bar, having a drink and dancing or gorging themselves on chili cheese fries. This is the life I dream of for Thomas. I want him to go to college, I want him to have lots of friends and do wild things and I want him to be happy staying up late, driving up "The Grade" (The lookout point in out town) and screaming at the top of his lungs to the Blue Mountains in the distance.

As his young adult life passes him by, my dreams for him die a slow death as day after day, night after night, he remains in his room not being social, emotionally flat and on rare occasions going to hang out with only his best friend and play video games. He is 19, his social life, the life I dreamed for him didn't happen in high school with proms and rowdy football games and parties and since graduation it's been a struggle just to keep him on his feet and keep him employed. He now only works one day a week and that one day--the entire day--is filled with anxiety and his nights at work are filled with paranoia. That is no life and as his mom, as the woman who held a baby in her arms, watched him take his first steps and venture out into the world and then watched a young primary school child change into an often hurting, sometimes bullied, prodromal schizophrenic kid.

The truth of the matter is, my dreams for him died long ago as his personality and illness developed. This is not to say that I don't have hope but the wide, expansive, clear blue sky reaching to the horizon has storm clouds in it and the road he walks is a rocky, rut-filled back road. Then, disability is brought to my attention. To me, admitting that he is disabled, realizing that the federal government would consider him disabled for life is the nail in the coffin containing his future. It feels like giving up if I put him on it.

I know that disability can be a good thing too. I know it gets him benefits that he needs, I know it gives him money since he can't work a real job very often but doesn't it also, in a way, give him a reason to give up altogether? I am told that by a couple of people, that that is their fear for him and if I am being truthful here, I feel like that is true also and I'm just not ready to see him give up anymore than he already has.

And so I wait to get the process started. I wait and watch and hope that Thomas will become your "average young adult" and hop in a convertible with 3 friends, music blaring, the sun going down and drive off into a storm-cloud-free horizon and into happiness and health.

Monday, February 17, 2014

Medications. Yes or No?

Since many of you didn't see the video post with my commentary on "The Myth Of The Chemical Cure" yesterday, I thought I would repost just my comments on medication and why Thomas and I choose it. I am curious what your thoughts are on medications and whether or not you feel they are right for you or your loved one. The following is my commentary about the video. You do not need to see the video to appreciate (good or bad) my thoughts.
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For me, and this is purely my opinion and probably skewed by my already set in anger from the discussion in the therapist's office, Ms. Moncrieff (The author of the book and the speaker in the video) has an opinion that I don't agree with. It has been a day since I watched it so I don't remember everything but I will highlight what most stood out to me and what most affected me.

For starters, she talks about how in history schizophrenia was treated with "Insulin Coma Therapy" and ECT (electroconvulsive therapy) and prior to that they tried to help people with things like less invasive things because they didn't know what to do for people. Then came the advent of medications. Her whole speech is about medications and their efficacy and how it dampens down people's personalities and calms them--that being said as if it's a negative thing. I had to wonder as I listened to her,

"So, ECT and ICT were such great therapies? And what about before then? Weren't we just warehousing people that were stuck in their pain and had no escape?"

For me, by bringing up past therapies like ECT only solidified my faith in medications. I put Thomas back (in my mind) in the eras she was talking about and I was horrified to think that his choice of a "cure" was either being pumped full of insulin and then jolted awake by glucose or worse, repeated, barbaric (at the time) ECT neither of which were curative nor did they know how they worked on the brain. She stated that medications are just such a mystery as for how they work on the brain but all I could think about was, what is the alternative???

What is the alternative?

I think about Thomas and the terror he experiences when he is under-or un- medicated and I know that that is no life for him. Believing that someone is just outside his room coming in to kill him or believing he is being watched constantly and having accompanying paranoia and anxiety is not a life. It just isn't!!! Sure, he is medicated now and less motivated and tires more easily and feels a bit flat but again, what are the alternatives? I have sat with him in emergency rooms watching him trying to keep it together and quickly failing at it because of the terror of what he believed was going to happen to him or what was actually happening to him. Had they come in in that moment with a pill or a syringe with something to calm him, I would have encouraged him to take it and I would stand firmly by my belief that he would take it.

One of the points that Ms. Moncrieff makes is that the drug companies are trying to mislead us about how the drugs work and what the side effects are. I don't know about you but not once have I felt misled and every single time I have read about the side effects and been informed by doctors and pharmacists about the side effects so I didn't go into meds blindly. I know that there is a great deal of uncertainty surrounding meds and their efficacy and just exactly how they work on the brain but what I do know is that what they do do is calm my son, lower his paranoia and hallucinations and provide for him a life outside of hospital walls where he can be home in his warm home with his family around him, proper meals, love and support. Even when he has had to go to the hospital, it has been for good reason and has been done in order to get him stable on meds so that he could return home. In my opinion, meds are the treatment of choice for my son.

Now, I know that he has been considered "treatment resistant" and that the time may come that he can't take medications because nothing works anymore however in the meantime, I am going to do everything in my power to ensure his happiness and psychological safety.

Just for argument's sake (in case you feel I am making decisions for Thomas' care for him in this post), let's take me and my meds as an example. I am bipolar II. My "mania's" are not happy, "I can conquer the world" kinds of mania's. Mine are a living hell where I am agitated to the point of wanting to kill the next person who gets in my way, my thoughts bounce around in my head and I can't rein them in. I feel like there are knives or needles poking my skull from the inside out, I have intrusive thoughts that to me, border on a form of psychosis, I have OCD-like qualities and the list goes on and on. I will admit that I fight to go back on my meds when my bipolar fires up but only because I am in a state of mind where I don't think I need them, that I can just power through all of this stuff without them and I'll be fine when I do. When I finally do start my meds, of course I'm a zombie, of course I sleep 11 hours, of course I feel numb emotionally but do you know what? I welcome those feelings because the alternative? The needles? The bouncing thoughts? The intrusive thoughts? They are there driving me insane and I would give just about anything to make them stop. And so, I give up a little of my personality, I give up hours that I should be awake and productive, I give up being able to keep on top of cleaning the house because my motivation is so low, I give it all up to the meds because the alternative is sheer hell.

So, for me, for Thomas, it is not like we walk lightly and uneducated into meds, their side effects, their efficacy, their truth. It is a conscious, well thought out decision and in no way do we feel like we are having the wool pulled over our eyes by the drug companies. I can promise you this about myself and I know the same is true for Thomas.

Also of note, when I am in the throws of my bipolar "mania's", there isn't one single talking therapy that is going to alleviate those symptoms. Not one moment in front of even the most qualified professional is going to change the way I feel other than to most likely frustrate me further because I can't think straight enough to get myself together.

OK. Those are my thoughts for now. I have a many others about meds and other therapies but you can see by what I have written above that I have very strong feelings about this and that I am not making decisions based on a lack or education or sheer personal experience.

Sunday, February 16, 2014

Excerpt From The Therapist's Email:

"Melanie,

Let me say at the outset that I am not aware of ever telling Thomas to stop his medication at Thursdays appointment. Such a statement would be unprofessional and would indicate that I was practicing medicine without a license. Since I have been appointed ___________.... (insert impressive qualifications here that I am not posting them because it's very revealing as to who he is and I am going to protect that out of courtesy and respect--but you get the gist of what he's saying) ...I'm highly cognizant of what is professional and ethical.

I do believe I alluded to the fact during Thursday's session that unfortunately all of the antipsychotic medications attempted up until now have not remitted the majority of the psychotic symptoms. And unfortunately he may be recalcitrant to such psychotropic interventions as a small group of individuals are. However for Tom to not despair if such continues to be the case. That was my intent in sharing the information with Tom."
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So, ok, there it is straight from the good doctor's mouth. You decide (and maybe even post here) what you think. He summed up here what he thinks he said in session but the summary is not the same as the conversation that ensued after his revelation. Again, I am not accusing him of trying to practice medicine at all but passing along information like he did angers me and I still feel it had the possibility of swaying Thomas away from his meds. If this was an innocent observation or thought, I wouldn't have reacted in the way that I did. I was immediately on the defensive and I think I was doing so for good reason.

To be fair, I think passing the information on would have been just fine if it had been done in a much different way. I am not adverse to such a thing however I really wish it had been presented differently and again, with a heads up for me. Schizophrenia and meds, in my experience, are a polarizing discussion (much like religion, politics and money) and it takes intelligent debate to find a middle ground. I was prepared enough that I said my peace in his office however had I had a heads up I would have been better prepared.

So, anyway, there you have it. I will post one of the videos in a little while so be looking for it. It is long (about an hour and a half) but it is worth watching when you have the time. I certainly ran the gamut of emotions while watching it but mostly felt angry and defensive. If you watch it, be sure to post your thoughts. I am very interested in them.
 
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Good Sunday Morning!

I received an email from Thomas' therapist yesterday. On a Saturday no less which tells me my email made its point. He began by stating all of his qualifications (which are vast and impressive) and explained that he was not acting as a medical doctor when he said what he said. That's fine but it doesn't change how I heard it, I still think I heard him right, and it doesn't change my feelings on how it all was presented. I realize that he is not a medical doctor and I didn't feel I was implying that, I was merely trying to get my point across that the way it was presented really was done poorly and irresponsibly. He took no ownership of what he had done and instead did what he did that day and that is defend his stance. I would have liked to have seen some sort of apology but I don't think I am going to get that. Later on today I will post an excerpt from that email where he explains why he did what he did. You all can decide what you think and perhaps it'll change your minds. It didn't mine.

As for Thomas, he is isolating again and has not showered since Thursday when I last reminded him. I don't remind him every day because when I do, I am met with resistance. I did catch him in a loving moment last night and during a hug I told him that perhaps tomorrow (today) might be a good day to shower since his Aunt is coming to visit. He said he would but asked me to remind him again. One thing that sticks with him no matter how much better he gets (which seems in a bit of a backslide at the moment) his memory still suffers a great deal. He has always had memory problems but they almost seem worse. The question remains, is it just who he is or is it the meds? His therapist tried to argue on Thursday that some of his symptoms like his memory loss and his self esteem and his flatness might be the result of meds. I think this was done in order to build his case about the cessation of meds. I (again) would argue that those things have been around much longer than the meds and in fact, Thomas backed me up on Thursday and said the same thing.

So, as for Thomas, I think we are in a holding pattern of sorts right now. I think the decrease in clozaril and the yet to be increase in Latuda is stalling his progress towards better mental health. As his mom I am ok with that for right now. I just fear the return of the more acute symptoms. I have not heard from Dr. N. about decreasing the clozaril another level so we're kind of stalled in that respect too. Thomas' heart rate remains high though so I think continuing to stop the clozaril will be what's on order as we move forward.

Well, I am going to have my coffee and then post a few more things for you including one of the videos that Thomas' therapist sent me to watch. I am going to post my opinion on it but if you have the time, you ought to watch it and decide where you stand after watching it too.

Have a good day everyone and I look forward to your thoughts on this and my other posts today.

-Melanie

Saturday, February 15, 2014

Thank You

I wanted to take the time today to say thank you to all of you who responded to my post about Thomas' therapist discussing stopping meds with him and I. I was overwhelmed by your words of support and I am thrilled that you supported me and offered suggestions. Admittedly I am still shaking my head and when I talk to people about it they also shake their heads and feel outrage about the whole thing. I was really wondering how it was all going to be received as I am aware that ultimately it is not my decision what Thomas chooses to do about his meds. What I can tell you is that my record up to this point is that I have been included in those decisions by Thomas and by his doctors so I didn't feel like I was overstepping. I think the conversation might have gone much differently had I been given a heads up ahead of time. I always try to make an attempt to learn the side of someone who has a differing view than mine because I am the first to admit that if I am wrong then I am wrong. In this case, the way it went down, I don't feel wrong about it at all. If Thomas had been through many many trials of meds and they had all failed then that discussion would need to be had with Dr. N., his psychiatrist, who prescribes the meds and decides with both Thomas and I what the best course of action is. I no longer have doubt that there is something out there to help Thomas and I'm fairly convinced that the Latuda may be the answer right now, until it stops working, and even then, with Thomas' blessing, we will try something different. At the extreme end of all of that is still the option of ECT (electroconvulsive therapy) or TMS (Transcranial Magnetic Stimulation) both of which have been shown to have an effect on psychosis. Those options are far down the road for Thomas, if they even ever become an option, but they are there.

Next, someone (maybe more than one person) asked about Thomas' blog and/or his opinion of the whole meds issue. I will say first that Thomas doesn't write a blog so learning from him that way is not possible. Even if he had a blog it would most likely be about playing video games since that is what consumes his life. As for his opinion on meds, I asked him about how he felt about what was discussed in therapy and he told me that he wants to stay on his medications. He is still acutely aware of what life was like without medications or when he was on meds that weren't working. He just lived through a really tough couple of months that began with his Geodon stopping working. Then and now he chose to try new medications and to my surprise even was enthusiastic about finding something to help him. In a lot of ways he very much knows he's sick and that it's pretty serious and that it is a lifelong illness so because of that he knows he's going to need some kind of help along the way. Every time I bring his pills to him, I look for exasperation or refusal of them. I am always keenly aware of his state of mind when meds are presented because I want to respect what he wants. That's not to say that if he refuses that I won't state my case for staying on them because I will. A perfect example of his desire to continue meds though was just yesterday. I have been spacing his Latuda away from his clozaril to lessen side effects. I talked with him yesterday about combining them again as prescribed and he agreed and did so knowing that he might experience scary side effects. As it was, he did experience more tiredness, some dizziness and low blood pressure but nothing was anywhere near a dangerous level and he never once complained about any of it.

Finally, I had to laugh albeit a sad laugh when I discovered yesterday that Thomas was having a really bad day. His curtains were closed in his room, he was moody and agitated. While I know we all have bad days, what was "funny" to me was how I had earlier in the day fired off an email to his therapist talking about how great Thomas is doing and no sooner did I do that, I was presented with a grumpy, suspicious kid. Isn't that the way it goes though? It's akin to feeling sick and finally deciding to go to the doctor only to arrive in the doctor's office and suddenly feel better. Sometimes I think there's some sort of cosmic law governing things like that.

So, thank you all--again--for your support yesterday. It meant the world to me and gave me a lot to think about. I am grateful for all of you and grateful that I have this forum to share my story with you all. My hope, as always, is that it helps others too. That was my goal when I started this blog and it remains my goal even today.

Friday, February 14, 2014

The Email I Just Sent To Thomas' Therapist:

I need to get something clarified. Do you believe that Thomas should stop his medications either now or down the road? Because what I heard yesterday is that that is something you are advocating.

Let me clarify some things for you also. First, I wholeheartedly believe that it is Thomas' choice. He is an adult and it is his body and his choice what to do. However I also believe that he doesn't have the capacity to make an informed decision about this all on his own. You have said yourself on more than one occasion that he is "highly suggestable" which I thought you would take into account before revealing yesterday what you read about "a small community of people in England who believe that medications aren't the right choice for schizophrenia". You are Thomas' therapist and as far as I know, he trusts you and looks to you for your opinion so it stands to reason that if you suggest something like you did that he will put credence in that thought based on the fact that he trusts you.

What baffles me about that whole exchange yesterday is that if you believe medications aren't the right choice for Thomas--which goes against everything you have said in the past--then what are our options? If you believe that therapy alone would be what remains to help Thomas through his illness then I would argue that therapy hasn't always been successful especially when it comes to his well-entrenched delusions and the intense anxiety that he gets locked into from time to time. Both of those things we both have attempted to change using our unique skills and that has failed time and again. I think that was made quite clear even yesterday when we discussed Thomas' self-esteem and how it's virtually non-existent unless of course he is wrapped tightly in his delusion and using that as his source of self-esteem. It seems to me that if a person's only source of self-esteem comes from a well-entrenched delusion that that is the product of a very unhealthy person.

I willingly admit that his delusions are almost impossible to treat as I have heard this from multiple professionals from the less educated but very experienced psychiatric nurses all the way up to several highly educated doctors. I have almost made peace with the fact that that is who my son has become--the sum of his delusions--however while those may be difficult, if not impossible to treat, there are other symptoms (some of his hallucinations, his paranoia and his anxiety) that are products of those delusions that have responded to medications and that Thomas has repeatedly told me that he was thankful for the medications that helped him through those rough times.

You mentioned side-effects and that you "want Thomas to be happy" and while I want that same thing for him, I believe he will have to endure some side effects in order to reach a place of happiness. As for the side effects, I think they are a necessary evil that comes with treating schizophrenia but I also think that they are not a permanent nor untreatable condition. Let's take his tachycardia for example. I watch that every day, 3 times a day. I am very well aware that he is dealing with that. I am also keeping in close contact with Dr. N and informing him of Thomas' progress or lack thereof and we are doing everything we can to help lower that. The choice so far has been to slowly decrease the clozaril and so I consider all of this to be an attempt to alleviate a rather nasty side effect.

Thomas is not left to endure side effects alone and has myself and Dr. N. working to make a better quality of life for him where side effects are concerned. At the other end of that has been the addition of the Latuda. With my careful dispensing of that particular medication in an attempt to lessen side effects, he has appeared to tolerate that particular medication very well and has, in fact, seen pretty decent results from it. I have stood by day after day after day for weeks and weeks and watched my son disappear and it has only been with the addition of the Latuda that I have seen him come back to me in a big way. Not only does he have light in his eyes, not only does he smile, not only does he eat now, not only is he now less agitated but he is now also opening all of his curtains in his room (including the ones over the window that look directly into the neighbor's living room) and he keeps them open sometimes till well past nightfall. I do not believe for one second based on my vast experience with him and his illness that these changes came as the result of some spontaneous remission. I believe wholeheartedly that the changes I see came from the Latuda or the combination of Latuda and clozaril.

While it's true that not every course of anti-psychotic has brought about success, there have been some (like the Geodon) that I consider saving grace's that brought my son back to a relatively stable place. Back then and now he would say that that medication made a difference and I believe that as the meds he's on now continue to clear the cobwebs in his mind that he will say the same thing about what he is on now. With everything in life there is both good and bad. I do not believe we can have one without the other. What we can do in those instances is do everything in our power to find ways to cope with the bad and celebrate the good so that balance is found inside each trial.

I would like to ask something of you and it is a favor and would be considered a privilege on my part. In the future when you want to drop a bomb like yesterday's discussion about stopping meds, would it be possible to give me a heads-up beforehand? More than anything yesterday my concern about that discussion was putting Thomas through witnessing our debate, my anger and your insistence. He does not need conflict in his life, it serves zero purpose to subject him to that and yesterday's exchange amounted to a conflict that I believe should have been avoided. This is not to say that you can't express your opinion about an option for Thomas however if it's going to be something so polarizing that is going to elicit a lively debate then I believe it is a good idea for you and I to discuss it beforehand so that we can present a unified, balanced, conflict-free option for Thomas. It is my opinion that including me in these sorts of revelations like yesterday are crucial but I am of the mind that we need to make all things about Thomas and his treatment options a team effort presented to him in a safe, calm environment. No purpose will be served if drastic options like discontinuing meds are presented solely to Thomas without my knowledge or for me to do the same to you. I have made every effort to include you in decisions I have made about Thomas' well-being and often have done it through emails days before a session so that you could carefully consider a course of action. I have, from my side, made every attempt to make Thomas' treatment a team effort because I believe that this illness needs that kind of approach. Thomas can barely follow one line of thinking and process it as you well know and even experienced just yesterday therefore if myself, you and Dr. N. all came at him with differing points of view all that would do to Thomas is confuse him and complicate his treatment as he struggles to sort out all that he is hearing.

So, if you believe stopping medications now or at some point is an option for Thomas then I would appreciate some literature or web links to literature so that I can review them and be sure that I am not being completely close-minded. Since Thomas has gotten sick I have been nothing but flexible and diplomatic to any party that has had suggestions and I have afforded you that same respect. I am not an over-protective mom running chaotically and uneducated. I have heard and read the opinions from many many sources including research articles, schizophrenia foundations, books, newspaper articles and experienced opinions of other caregivers of people with schizophrenia as well as taking into consideration what Thomas' own doctors put forth. All I expect in return for my flexibility is a heads-up and some time to consider what will be presented to Thomas, if only to lower tensions in his presence.

Please give some consideration to what I have said here and please pass along any information you might have supporting you point of view yesterday about medications.

Thank you for hearing me out,
Melanie

YOU HAVE GOT TO BE KIDDING ME!!!

OK, let me see if I can put this together in a coherent way so that I get my point across.

Yesterday Thomas had therapy. I was called in to help give an update (Thomas is doing pretty good! :) ) and then his therapist spoke. He first talked about the meds Thomas has been on and said that Thomas had been good thus far in his treatment because he hadn't protested his meds. I told him that he actually had at a few points in his treatment and he said that he had not been aware of that. This was not true since I have let him know every time because I was worried about Thomas because when he was saying that, he was in the throws of his worst episodes. He acknowledged my correction and went on. He then told me he had something to say that wasn't going to be very popular and that might upset me. My eyes narrowed and I looked directly at him and he put up his hands in defense and said,

"Uh oh, Mom's mad already."

To which I responded that I wasn't at all. He went on to say that he had just read about a small group of people in England who don't believe people with schizophrenia shouldn't be treated with medication, that they needed to learn to deal with their illness on their own. The way he said it was in such a way that he believed this to be a viable option for Thomas. I was enraged! I shook my head and stayed silent and he asked me if I was mad. Everything about me screamed that I was but I put my hand up and I said,

"No, no go ahead and speak. I am open to hear anything you have to say."

 That was my well-practiced diplomacy in action. I have learned that everyone has a side and I have learned how to hear people out. He went on to say that Thomas had had several trials of anti-psychotics that hadn't worked and that he had had so many side effects. He said he just wants Thomas to be happy. I sat there in disbelief as he talked (which I can't write out everything here) and he essentially was giving permission to Thomas to stop his meds! I was beyond angry at this point as I do not agree with him or his little group of people in England that he spoke of. He looked at me and could see that I was seething and he gave me the floor. I wanted very much to protect Thomas from my anger because therapy is a place where he is supposed to feel safe and I knew my anger and his therapist's defensiveness was affecting him by the way he was squirming in his seat. Then I said this,

"I would argue that Thomas is doing better now because of his medications. Sure, the clozaril was causing side effects but since the addition of the Latuda, I have seen him brighten up and I believe that the reason all of this is possible is because the Latuda is working and perhaps it's working in concert with the clozaril to cause these changes."

He began to back down a bit but then said that some people are treatment resistant and medications aren't an option for them. He said that sometimes what they have left is therapy to help the symptoms. All of what he was saying was implying that all of this was true for Thomas and as Thomas sat by and listened to this all I could think was,

"Terrific, let's give the "highly suggestable" (the therapist's words in the past) schizophrenic kid who often times doesn't make informed decisions and who will change to fit any situation or person he trusts, permission to stop his meds."

Then I said to him, and bear in mind these exact words have come out of the therapist's mouth too during more than one occasion,

"I have read multiple sources saying that if you take a person off of their meds and they have an episode and then you try to get them back on the meds that the next trial of meds isn't as successful.

I went on to say,

"I have also read that if you do this kind of thing over and over that eventually the medications don't work anymore and you are left with a very sick, untreatable person with schizophrenia."

I don't remember all that he said but he defended his stance and he tried to calm my anger too. He asked Thomas how he felt about what he was saying and if he felt he needed his medications and if he wanted to stay on them to which Thomas replied,

"I don't care. I'm fine with whatever."

His therapist then clarified this,

"Do you want to be on medications?"

To which Thomas replied,

"Yeah, I don't mind taking them."

I found a certain kind of relief in that but was still very angry that the therapist had brought all of this up as an option especially now as Thomas is improving because of the addition of one of the Godforsaken medications he was trying to make Thomas stop.

Who does that? After EVERYTHING he's said over the years about the importance of Thomas being on medications, after WRITING A LETTER TO ANOTHER DOCTOR (that I have a copy of by the way) THAT HE HAS TRIED MANY DIFFERENT TYPES OF THERAPY WITH THOMAS AND HE LISTED HIS SOURCES AND TACTICS AND SAID THAT HE HAD BEEN UNSUCCESSFUL THUS FAR IN HELPING THOMAS. After all of that, after ADMITTING that THERAPY ALONE had been unsuccessful in some aspects of Thomas' treatment he was now advocating that we STOP MEDICATIONS too?!?!? So, what exactly are we trying to accomplish doctor???

The thing about all of this is that I am probably not articulating here to you the reasons why I am so mad. Yes, it is Thomas' body, he is an adult, it is his choice what he does with therapy and meds however he is a sweet, a lot immature for his age and despite my best efforts to educate him he is largely unaware of what it means to have schizophrenia. For a trusted person like his therapist to give him permission, to support stopping meds, is a free pass for Thomas to toss aside his own sense of self and attach to his "trusted" therapist and do what he says. There are 14 kinds of wrong in the entire exchange that took place yesterday afternoon.

Then therapy went on to talk about Thomas' self esteem and how he is unable to hear people and feel the joy from people's compliments of his appearance and thoughts and behaviors. It was a drawn out discussion that led to a very sad realization that Thomas has no self esteem and is adrift in a world where he can't even call upon past accomplishments to bolster his self esteem when he is feeling down. With that, I was asked to leave, which was fine by me because I was seething about the earlier conversation and sad for my son.

Here's the kicker though.

I got called back in at the end of the session and sat down and his therapist said to me,

"I called you back in here because I think you need to hear this."

OK......now what?

He went on to talk about Thomas' self esteem issues and then said,

"While Thomas is unable to find value and comfort in other's compliments, he is pumped up when he thinks about (insert massive long-entrenched delusion here). When he thinks this thing about himself he is filled with a huge amount of self esteem. It appears this is the one thing that doesn't ever fail to pump him up."

He had told me that "I need to hear this" but was he hearing this?!?!? Was this not the response of a very sick, very delusional young man most likely in need of his medications????? I was floored. Here it was, right in front of us, the exact reason Thomas was being treated with medications and we had earlier been talking about stopping them altogether and relying on therapy that the therapist had failed at in the past!!!

I'm still shaking my head. What pains me is that right now, here, I am not getting across to you the sheer stupidity on his therapist's part for even suggesting going off medications altogether and basically hoping for the best.

C'mon, seriously?!?!? Do we not take into account the now two years of life in our home with me daily trying to keep my son safe and sane? Do we not take into account the 3 hospitalizations. Was he not at all thinking about the toll this takes on me too and just exactly what would happen in our home, to Thomas and to me and his dad if we were to stop medications altogether? Can you imagine the pain, the grief, the fear, the demise of familial relationships that would happen if Thomas were to stop medications but continue to go week after week to therapy that most times fails to help him?!?!?

OK, all right, I've said enough. I will be interested in your thoughts on this.

Thursday, February 13, 2014

The Curse Of Happiness

I watched a movie called, "Call Me Crazy" on Lifetime Movie Network the other day. For those of you who haven't seen it, they showcase people with different mental illnesses and their families. It's a fiction movie that included two stories, one about a young woman with schizophrenia and then another story was about her sister and what she had lived with all of the years with her sister being sick. It was a movie that hit too close to home with me.

Since Thomas doesn't have any siblings that live at home with us it was more the story about the young woman with schizophrenia that touched me. She is a student studying pre-law and she decides to go off of her meds because she wants to prove to her psychiatrist and to herself, I think, that she isn't sick and consequently she ends up in the hospital. While in the hospital she meets a young man and they begin to care about each other during their stay together in the hospital. It was beautiful because they both were sick and knew each other was sick and they could be free to care about each other without worrying about their respective illnesses and the stigma of having them. In my mind it couldn't be more perfect a love story because in a way, they really understood each other.

The story culminated in a passionate kiss in the garden of the hospital where while she had been pretty stable up to that point, the kiss and the excitement that comes along with it brought her voices back and she ended up backing away from him holding her head and covering her ears. The young man in the story moved towards her and covered her ears for her and held her.

What the scene illustrated was a not much talked about symptom of schizophrenia or rather a trigger for symptoms. What isn't talked about much is the fact that really good things, exciting things, can bring on an episode for someone with schizophrenia. Before seeing the movie the first time months ago, I didn't know that this could happen though once I watched the movie, I looked back over Thomas' life and realized that it very much had been a trigger for him. How is it, in the case of this movie, that love and kisses and the excitement of a new relationship can cause this? How can any exciting event, a trip, a graduation, even a really good day (if you're vulnerable) cause a relapse?

Watching that movie scene made me think about the injustices of this illness. Where you or I might find happiness and excitement, a person living with schizophrenia might see a pitfall that precipitates an episode. It's so unfair but it makes me think twice about what experiences Thomas should face in his life.

The other day he bought himself a new smart phone and I remembered back to when he got his first one. What should have been an exciting purchase and a fun project turned into one of his most stressful times. I tried desperately to help him get it set up but it didn't take away the symptoms he experienced as a result of that gift of a new phone. So when his new phone arrived I braced myself for the storm ahead. I told him when he purchased it that he needed to be ready to face its set up with patience and strength and bravery and he assured me he would be able to do that.

When he got it, it immediately caused him stress and anxiety but he worked to get it up and running. Many times he was completely frozen and shut down though and I came to him with a quiet, patient tone and redirected him either by doing the work myself or teaching him how to find solutions. It's hard to face that something so fun, something he had looked forward to for weeks became its own little monster taunting him and leading him closer to the edge. While he didn't go over, he teetered on the edge and I was brought back to that movie scene with the kiss.

How unfair this illness is. How unfair that it robs our loved ones of lives they should have had had they not gotten sick. How unfair that even joy, in its sometimes intensity can bring about a special kind of pain. It seems like such a cruel fate happens to the best of spirits and tests every ounce of their strength. I see good things for Thomas' future, they're there for sure, but now and for the rest of his life, I will be protective of his well-being during those times. I want joy for him so badly but I want him to be healthy too. I hope we'll find that balance as he moves forward into adulthood.

Wednesday, February 12, 2014

Dr. N. And The Clozaril Cessation

I told you yesterday about how Dr. N. was planning on stopping the clozaril for Thomas. He had been responding to several of my emails about Thomas' blood pressure and heart rate. When he came back with the email about stopping the clozaril, I knew that I needed to respond to it but it took me until the afternoon to accept what he was saying and respond. I always want to be thoughtful about my responses since this is Thomas' life we are discussing and while he and I work in concert to come up with a plan for Thomas, his first responsibility is to Thomas. I try, most times, to tell Thomas what we talk about because I don't want him to feel like we are talking behind his back and then pique his paranoia. He has been happy with the discourse so far which makes me happy because I feel like I am able to give him a voice that he can't seem to find for himself. So, yesterday afternoon I responded to Dr. N. about his plans.

I wrote to him and told him that I felt that stopping the clozaril was a good idea. As much as I am scared for Thomas' psychotic symptoms to increase, I know they can't kill him like a heart attack or stroke could from the high pulse rate the clozaril is causing. I want my boy around no matter what state of mind he is in. As long as he is here there is hope so if we must tweak medications then so be it. I think once I set my fear aside, what I really felt, and mentioned here I believe, is that clozaril is not for him. For me, the side effects have scared me from day one and the potential for him to get very sick or God forbid lose his life was just too much for me as his mom. As it continued to not work for him, the more and more comfortable I became about saying goodbye to it. There was always the promises though:

"It'll work, give it time."

 "It is the medication of last resort for treatment resistant schizophrenia"

 "My son is on it and has great success with it."

And it goes on and on. Those promises are what I clung to even in the face of it seemingly not working. So, here we are now putting this behind us (though it'll take time because it can't be stopped without a slow titration down).

I asked Dr. N. though what would go in it's place? I was honest about my feelings about the Latuda also. While it has brightened Thomas, I just don't think it's a powerhouse drug for schizophrenia--or at least not Thomas' schizophrenia. I have trusted my gut about what to do or think about Thomas' illness since his very first psychotic break and it has never led me astray so since my gut is telling me now (and actually did the same with the clozaril) that the Latuda isn't the one to lay ALL of our hopes on then I'm not going to put all of my eggs in one basket and trust the Latuda alone to do the job. His response to me about that was this:
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"Sometimes people need 2 medications, but it's early to tell. One pitfall of using research data (such as the efficacy of clozapine for treatment resistant cases), is that we end up applying statistics to one individual. In other words, if we say a medication is 60% effective, it might not mean everyone will feel 60% better, but it means that 4 out of 10 people might not get better at all. As effective as the clozapine can be in a study population, we don't know at this point how effective it will be for Thomas. I think it is OK to be cautious about what we try, and to consider all options we have."

--------------------
Quite frankly I love that he looks at things the way he does. He listens to me but he is an extremely intelligent man and cares about Thomas so he's not going to jump into something without first being thoughtful about the decisions he makes.

So, that is where we sit now as far as medications go. It appears we aren't going to increase the Latuda even though we are working to eliminate the clozaril. While this baffles me, it is not in my control so I will have to put my faith in the good doctor to make a good decision for Thomas' mental health. In the mean time, I brace myself for what's to come for Thomas. As of this morning I am ready, I am not letting fear be my guide and I am remembering that we have made it this far and will continue to make it, whatever is thrown our direction.

Tuesday, February 11, 2014

The Edge Of The Forest

Dr. N. is stopping the clozaril.

There. I said it.

Now I have to start accepting it which isn't going to be easy, especially today since I didn't sleep last night after getting that news.

I have mentioned this before because it's been very scary for me and that is that Thomas' pulse rate is way too high. I have tracked his blood pressure over the last week or so and every time, even when he should be his most calm and relaxed, his BPM has averaged 118. That's high and it's not something his heart can sustain for too long. Not surprisingly it has been at its highest following his taking of the clozaril so we need to remove the clozaril from the equation in order to bring that down. Dr. N. said that the way they usually treat that symptom is with beta blockers but since the propranolol (which is a beta blocker) caused his scary episode, then they are not an option for Thomas.

Terrific.

I sat and had a talk with Thomas about this last night and asked him what he thought of losing the clozaril. He needed reminded of what it treats and when I explained to him that it was for his paranoia and hallucinations, he was silent. I told him we had to do this in order to stop the high heart rate. He was silent. I told him that he was going to have to brace himself because as that is removed, his symptoms are going to come back. He looked away from me and continued his silence. I told him that I would help him get through this, help him cope with the symptoms, and he said OK.

What a cruel fate this is that is now laid before my son. He has been through hell in the last couple of months and now this. There was no mention of increasing the Latuda in its place so I feel like we are going to hang Thomas out to dry now. The thing is, I don't think that the Latuda is the right med for treating things like paranoia and delusions. The handout from the pharmacy says that it "may" treat hallucinations but that is the only mention of anything having to do with schizophrenia. If you see the commercials on TV for Latuda, it is being marketed as a medication for bipolar depression so essentially it's an anti-depressant even though it's in the anti-psychotic class of drugs. I'm not discounting its role in Thomas doing better. Not at all. It's just that I believe it has helped exactly what Dr. N. said it would help and that is the negative symptoms of his schizophrenia. It has not touched any lingering psychotic symptoms of Thomas's.

I will say this. I haven't been a fan of the clozaril. I haven't felt like it touched Thomas' symptoms. I also haven't liked that it increases his pulse rate. It just hasn't seemed like the right choice. However, I have been promised for so long that it will work that now that we're taking it away, the hope I had for it to pick up steam and start to work has now gone out the window. Consequently, I have very mixed feelings about this turn of events. I want Thomas' pulse rate lowered right now but I also want him to be properly medicated.

So, this morning brings a lot of uncertainty about the future for Thomas. It brings my response email to Dr. N. about what he has decided to do. It brings some internal preparations and bracing for what's to come next for Thomas and lastly it brings, hopefully, some acceptance by me of what the weeks ahead will hold for Thomas.

We were never quite out of the woods but I saw the light at the edge of the forest. Now, we turn around and go back.

Monday, February 10, 2014

I'm Not Sick, I Don't Need Help!

Last night Thomas worked again. The night wasn't as successful for him with his anxiety and paranoia. I was woefully disappointed as he reported to me that his anxiety had been a 4/10 and that the security cameras and people had bothered him a lot. Aaahhhh!!! A setback!! I know, before you say it, that is to be expected and it's not like the Latuda can work miracles in just a few days but that darn hope of mine really got in my way in the last couple days so I was a little sad about last night's report. I guess this illness is always a case of "you win some, you lose some." Well, last night Thomas lost, last night I lost. The thing is though is that I am not going to let this get me down because other good things are happening. My favorite right now are the "I love you's" and the genuine hugs and the fact that he keeps his door to his room open a lot of the time.

Now, I titled this post what I did because I wanted to say something about the book and about its solutions for people living with schizophrenia who don't believe they are sick. After a posting or two of mine someone mentioned this book to me and how it might help me with Thomas. I had started reading the book in the past and decided it wasn't for me because, after all, Thomas readily says he has schizophrenia to people. I didn't think I needed the book until his over the top anxiety came to a head the other day and we locked horns over whether or not he should eat.

I mentioned to you (or maybe it was his doctors) that I felt like that exchange with him felt like I was dealing with a delusion and I felt like it might be possible that somehow his anxiety was turning into a delusion. The more I thought about it the more I could see that "Thomas is sick and he does need help." I will say that there is a fine line between someone saying they have a disease and then actually accepting that they do. I learned that lesson that day and even better understood that concept as I dove into that book.

In it, the author offers up strategies for working with someone in denial of their illness and while their examples centered around trying to get someone to take their meds or accept inpatient care (for example), I quickly came to realize that the strategies would work for getting Thomas to understand that he needs to eat (or any number of other delusions that he doesn't accept as part of his illness). Suddenly this book became my Bible for working with Thomas and I have been furiously reading it trying to learn and tentatively implement it's strategies. This is a lot easier said than done. If you have read the book and tried to learn the strategies then you know what I'm talking about. The book calls for you to change everything about how you think you should deal with your loved one. I felt pretty stupid as I read along and tried to memorize how to use the strategies. It is no small feat as it is nearly impossible to change a lifetime of tactics used to communicate with and reason with people.

One thing is for sure though, I have learned a great deal from the book and will continue to read the pages of strategies over and over until it fully sinks in. I can see how, if executed properly, that I will be able to get through to Thomas when he is locked into his anxiety or some other maladaptive delusion.

So, essentially this post today is a book review of sorts and an encouragement to look beyond the surface of the book and it's goal to convince a loved one to take their meds or accept their diagnosis. It's strategies are useful for many aspects of this illness and for me will be instrumental in helping me help Thomas through his anxiety and delusions.
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The name of this book:

I Am Not Sick, I Don't Need Help 
How To Help Someone With Mental Illness Accept Treatment
by Xavier Amador, Ph.D.

Sunday, February 09, 2014

With The Snow Comes A Fresh New Day

Good morning everyone! I have a million things to say but I'll try to keep it short for today. First of all it's snowing here. It's absolutely beautiful with everything covered in white. My less than lovely front lawn, the neighbor's dirty car, all pathway's leading away from my warm, cozy house, are all covered in snow and it's beautiful and kind of reminds me how for a time sometimes it's nice to have a "blanket" to hide under and forget the real world for a while. I love the snow. At least for this morning since I don't have to drive in it yet.

Now to what is really exciting for me. Yesterday's postings on mental illness and grief was a huge success. Thank you all for your support and for sharing and 'liking' so much of it. I have to admit that I almost posted late last night that I hoped I hadn't bummed too many of you out with all of that but then thought about it and realized that we all need to read things like this so that we don't feel so alone and so that we can learn even just one new coping skill. So, thank you (again) and I appreciate each and every one of you. It makes me sad that we all have to go through this but we are not alone. We have each other.

As for Thomas yesterday, the day went ok. I'm not jumping up and down with enthusiasm as we are now settling into our (yet another) "new normal". He's better, I won't discount that at all but he's still struggling. He still reports that he doesn't feel any different which is a disappointment to me but he is definitely engaging more with me and as a mom that is the best gift I could get right now. Just having him speak to me and to have "that look" in his eyes that's almost...almost serene makes me happy. With my faith in him and his meds renewed, I can be a better help to him. I had sunk so far into my own grief that I had ceased to be a good support for him, instead becoming a part of the problem by over-mothering and being intrusive sometimes. He's been in this episode for 3 months so getting him back to good will take some time. I can do it and I think my showing him that I am there fully will help him in the long run.

We had a bit of a scare last night with meds side effects so for a moment there I was back in the darkness. He came out of his room around 9pm and stood by my chair and said he didn't feel good, that he was dizzy and sleepy and he felt like something was wrong. I immediately took his blood pressure--my new tool for getting a glimpse into how his body is reacting instead of always prying into his mind. It was pretty low but his pulse was racing at 117 BPM. Not good for 9pm at night. He said his heart was racing also which scares me. I laid in bed last night and pondered what it does to a body to have low blood pressure but a high pulse rate. I was trying to figure out what that's doing to his poor heart. It can't be good, I know that, but I wonder just exactly what damage is being done, if any.

I got him to bed early and then went to bed myself. I didn't sleep though. Well, I slept but in a weird place between waking and dreams where I was worrying about him and trying to help him. When I got up this morning I checked him and he is ok. While things are improving, I am acutely aware that I am now checking him to see if he's died in his sleep, not something I have had to do for a long long time. It's sad and scary especially when I can't see if he's breathing but it's a necessary evil if we're going to take these meds and endure the side effects.

With that being said, I didn't mean to bum out your Sunday morning, I'm just keeping it real. As in all things in life, the good comes with the bad. Yin and yang. Over all though things are good for me with Thomas. We'll get him back, we will. And for those of you who are losing hope like I was, as much as I hated (hated) people telling me that "it just takes time" and "it will happen, he'll get better", the truth of the matter is, it will. You just read weeks of me losing my grip on my hope and I'm back now and you will be too. ♥

Have a nice Sunday morning. I'm going to go drink my coffee now and contemplate making a snow angel.

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