Friday, May 29, 2015

Ultimatums And What's Really Viable In The End



(picture credit: www.ca.uky.edu)

Yesterday was therapy day for Thomas and I felt like it went really well for the most part. What stuck out most to me was the conversation we had about Thomas moving out. Finally I feel like Dr. K. is "on my side" as far as the whole moving out thing goes. As he talked with Thomas he said things like,

"In two years when you move out..."

Yes, two years I can deal with especially since lately things haven't been so great. You know, I really never thought we'd trade in positive symptoms for what I would say now are the negative ones. I never thought there would be an across the board trade where Thomas's positive symptoms were relatively under control but his negative symptoms would be so bad. We are working on solutions for that, all of us, Dr. K., me, and Thomas, so my hope is that things will improve soon.

Yesterday, mainly, we talked about Thomas preparing a family dinner once a week. He did it last week but this week I got so busy and wasn't around much so I wasn't there to encourage Thomas to do what he needed to do to work towards planning and preparing a meal. I really fight with all of this because I don't know where I should be stepping in and where I should leave things alone. The fact of the matter is, if Thomas doesn't cook then of course I will. The issue is, though, do I remind him and then let it go or do I encourage him every single step of the way?

Yesterday Dr. K. implemented a fledgling plan that if Thomas doesn't cook on his night that the whole family should go unfed that night. Yes, a pretty drastic suggestion but perhaps viable. As the discussion about this went on Dr. K. started to feel bad about making Dan and I go without dinner so he changed the plan to: if Thomas doesn't cook then Dan and I can go out and get dinner and it's up to Thomas to fend for himself. The problem was, Thomas was quite fine with spending his own money to buy his own dinner out on the nights he doesn't cook.

And there it is.

This is the timeless issue we have always had with Thomas. We lay down ultimatums and Thomas doesn't take any action based on them. We went for years doing this about homework and chores, just to name a couple, and it really never worked. Thomas struggled and I ended up feeling horrible for being such a jerk and yelling at him or grounding him etc. when he didn't do what he was supposed to do. Ultimatums flat out just don't work so planning for the family to fend for themselves if Thomas doesn't make dinner isn't an effective strategy. So, then, what do we do? In my opinion, I'm right back reminding him every step of the way in the hopes that someday it'll all stick and Thomas will be an independent thinker about planning and preparing meals.

With me being busy for most of the week, I did check in with Thomas and remind him that he needed to plan a meal. We stood in the kitchen and I asked him what he wanted to make. He was silent for so long and struggled so much that I finally gave in a bit and suggested that he think in terms of types of meals, Italian, Mexican or American food. Still he couldn't come up with something so I left the house that day telling him to give what I said some thought and we'd see what he came up with.

Nothing happened.

So, "dinner by Thomas" didn't happen this week at all.

I don't know what to do!!!!

Last night, though, after therapy, I had to do some grocery shopping so I took that opportunity to teach Thomas more of the basics of grocery shopping. He was very attentive and helped out when I questioned him about things and I began to feel like, for now, that is enough for him. Planning menus, making lists of ingredients, shopping for the food and preparing the meal might just be too much for him right now. I really need to think about this a little bit but in the meantime, last night, I had him cook the meal that I had planned and put together.

It was really rather sweet because he was very excited to help out and ended up doing really good with it all so there is hope in there somewhere. He really struggles with written directions and has to refer back to them constantly but he gets it done. I also had him make the salad and he said he felt that picking through the spinach was a task he didn't see much point in and he felt it basically wasn't worth the effort. That was where I took the opportunity to teach him about mindfulness and told him to, instead of hating the job, take each piece of spinach, feel how it feels in his hand, how it's cold, how it's wet, how it feels in his fingers as he tears it etc.. That seemed to work and he got the salads made.

So, I don't know. It's not like Thomas doesn't want to cook dinner, it just seems that he's caught up in places like planning and needs help. In the end, Dr. K. gave Thomas five 3x5 cards and told him to write down five meals, the ingredients needed for the meals, the estimated prep time and the directions for how to prepare the meal. Then Thomas can pick a 3x5 card once a week to work off of. It's a viable plan but we'll see how it works out. It's going to take some resolve on Thomas's part because he's going to have to do the part he can't seem to do well, if at all, and that is all of the planning and he'll have to do it all at once.

I will work on them with him today or tomorrow and we'll see how it goes next week. I feel like getting past the negative symptoms is like trying to push your way through thick, dense underbrush in a dark forest. I have hope that we'll get through it but man oh man, this isn't easy.

Wednesday, May 27, 2015

The Marks Of Sadness

(picture credit: shutterstock.com)


Since the heartbreak of all of these new things with Thomas (cognitive issues, weight issues) never seem to end lately, of course yesterday something else would come up. These sorts of things make me sad for many reasons. The first is because they make me sad for him, just like you would get sad for any person who doesn't have schizophrenia. Then I'm sad because of how he reacts to things because of the schizophrenia. Then, there is my own sadness as I watch my boy struggle with different things.

Now, perhaps, you guys won't think this is that big of a deal but with everything else going on with Thomas's weight gain this just seemed to be another difficult thing to face. So, yesterday he came to me and he lifted up the arm of his shirt and there were these dark, blood red, lines across his upper arm. It took me a second to process it but he asked before I could figure it out,

"Mom, are these stretch marks?"

Ah, yes, that's what they were. Of course! But oh my gosh, now there's another thing for him to have to face. I gently told him that, yes they were, and I gently explained to him why they were there. He has gained weight so quickly lately that his skin can't keep up with the gain. I told him that he really needed to get serious about losing weight and I told him that they would fade with time but that they would be there the rest of his life and appear as scars. I told him that I got them too when I was pregnant with him and that I got some when I gained a ton of weight from meds, myself, years and years ago. I told him that so that he wouldn't feel alone. He listened and seemed to have just about zero reaction. The part of me that gets sad for him is the part that doesn't understand why he doesn't grasp the meaning of things  like this. It makes me sad, that when asked how he feels or what he thinks about what I just told him, he comes off as someone who doesn't care. I don't mean that like a person who is saying,

"Screw this! I don't care! It's my life and my body! What's wrong with having them anyway?"

No, instead, it comes off like someone who just isn't present in his body and in his mind. It's a tough thing to witness. How can it be that I am feeling a million things for him and he appears to feel absolutely nothing?

I hate this!

Where did he go?

WHERE DID HE GO????

Why don't I see him much anymore? I mean, I see him, he's right there in front of me, but I don't "see" him anymore, at least not very much.

Oh how I miss him.

So, we talked about the fact that he needs to lose weight and eat better and get some exercise and he agreed in his stone-faced, flat, kind of way. It's so easy what is in front of us, at least it should be easy. Change his eating habits and get him out for exercise. Both things easier said than done. I haven't been home a lot lately so I can't monitor his food intake while I'm gone and because I'm not home much, I'm not there to encourage him to go out for walks or to go for walks with him. I'm trying to give him room to become independent, I'm trying to build a life of my own without him in it all the time, but nothing's working.

Somehow I feel like he and I are like the flakes of snow in a snow globe. We settle down, the landscape is beautiful, and then someone walks in, schizophrenia in this case (isn't it almost always schizophrenia??) and flips the globe upside down and the snowflakes that are Thomas and I go fluttering around in chaos.

We are in the chaos right now. The globe has been flipped and thanks to some angry, red, stretch marks on the arm of my boy's pristine, young skin and thanks to increasing cognitive difficulties, heightened emotions and perhaps me being gone from the house just to name a few, we are flying around in chaos.

I want the snow to settle.
I want the stretch marks to go away.
I want him to lose weight.
And most of all I want my boy back, more present in his life, and acting like the kid I remember just 5 years ago before schizophrenia came along and took him away.

Tuesday, May 26, 2015

A Hug For Emotions Out Of Control

(picture credit: kmmsam.com)
 

While my personal life (outside of caring for Thomas) is slowly falling apart lately, I have been trying to manage a bunch of things and haven't been successful at it. I thought about not writing this morning because I am dead tired but since I have so many new members on the page, I thought I should write and let them see how this page works. Part of the draw to this page are the personal stories and I don't want to let my crumbling personal life get in the way of telling those stories. So, it shall be, let me tell you about Thomas and how he's doing.

I'm usually gone in the morning exercising when Thomas wakes up but when I came home yesterday I could tell he was off. He followed me around as I put things away and took off my shoes and he was asking for a lot of hugs. I asked him if he was okay and each time I did he hesitated and then simply stated:

"I just have a lot of energy."

I hate this "energy" that he feels because it unsettles him so much and often there is no explanation for it which makes it all the more difficult to alleviate.

After several hugs and a conversation, I went about my morning routine of showering and getting ready. I had places to go yesterday so I was going to have to leave Thomas alone. When I came home at 4:30 he was a wreck. He looked both tired and agitated and he told me that he still had the energy and that he had taken the dog, Cookie, for a second walk.

First of all, the fact that he helped himself cope with his energy by going out on a second walk is a huge thing for him. That happens so little. He's usually pretty unable to self-regulate his emotions. He, then, came in for another hug and I asked him how he was doing now. That energy was still around.

Poor kid.

I asked him what he's been doing all day and he told me that he was making a YouTube video (he wants to share it here for you guys so I'll review it and post it soon) and I could sense that he was quite excited about it and he was.

 

Because I was so tired and wrapped up in my own little broken world, I promised him I would watch it later. He paced the house a little bit more and then went back to his room.

This morning something occurred to me about his energy. If I had to guess, I would say that the energy was excitement about making his video but he was unable to cope with the intense feelings. This is one of those things that I don't like about this illness. It has a knack for taking a perfectly good emotion, that's supposed to bring something positive to his life and instead it becomes so overwhelming that it crashes to the side of being something negative for him. Being unable to regulate his emotions fully and trying to live for a certain time period with an intense emotion is just too much for him. It just seems so unfair! I've always understood that stress is hard on him, on anyone with schizophrenia, but happy things are stressful too. That's hard to reconcile. Somehow the brain is unable to process any emotions and eventually it turns them into something that is nagging and disturbing with the end result, in our case, being a Thomas that paces the floor and needs a lot of hugs.

Perhaps, too, Thomas is picking up on my own distress. I always think I'm hiding it from him well but I'm not always successful and lately I think I've been horrible at it. It's hard to live a personal life, meaning a life outside of Thomas, without it spilling over into our relationship, his and mine. Perhaps, though, too, the fact that I've been gone a lot lately during the day doesn't help things either.

At any rate, once again I am reminded that him feeling any emotion in an intense way is too much for him to handle, even when they're good emotions. I just want a life for him where happiness is just happiness and excitement about the accomplishment of creating a YouTube video is the same excitement you and I feel about accomplishing something we are proud of. I want, for him, to be able to feel....anything....and let it rest instead of it turning into something distressful and capable, at it's most intense, of causing symptoms of paranoia or some other schizophrenia symptom.

Friday, May 22, 2015

A Sobering Day

(Picture Credit: usablealgebra.landmark.edu)



I've been sitting here for a few minutes with my fingers posed over my keyboard trying to figure out how to write this post today. I feel so sad because yesterday in therapy we learned some things about Thomas that are heartbreaking. Both Thomas and I, and I imagine Dr. K. too, came away with a feeling of sadness for the losses that have been incurred for Thomas.

All of us talk about the cognitive difficulties that come along with schizophrenia. I'm fairly certain that most of us feel like those difficulties are a bit like the black sheep of the array of symptoms that schizophrenia "blesses" our loved ones with. They seem to be overlooked in literature and information online and elsewhere. Sure, there is mention of it but the mentions are so generalized that it leaves all of us dealing with so much worse than the words we see on a screen or in a book. There just isn't enough out there that describes what our loved ones go through and it leaves us (at least it does me) feeling like whoever the author is of the article that they don't have the first clue what they're talking about. Nobody lives it like we do and we are all experts on the deficits our loved ones face and we're well-versed in just exactly what is wrong but we are unable to help it and instead stand by as we watch our loved ones disappear into cognitive deficits that never seem to go away or that seem to get worse as this illness marches through the minds of our loved ones.

So, yesterday was one of those kinds of days that Thomas, me and Dr. K. faced some harsh realities about Thomas's deficits. Dr. K. told us as he started the session that my post titled
"Chef Extraordinaire" brought a tear to his eye. I remembered writing it and I remembered the day but I also remembered the fact that Thomas, ultimately, had succeeded in completing cooking a meal. I saw so much to celebrate and had forgotten the sadness of the shopping trip and in the preparing of the meal. With Dr. K. mentioning that it brought a tear to his eyes, I went back and read it later and I see now the sadness within the story. The session yesterday, though, was a session about assessing what Thomas's deficits are.

One thing that stood out to me was something Dr. K. called "visual neglect". If you read my "Chef Extraordinaire" post you will understand what I'm talking about. Remember how I told you that Thomas stood in front of the shelves filled with spices and how I explained to you about breaking the shelf up into 4 quadrants and how as Thomas scanned for the packet of seasoning he needed, he totally missed the lower left quadrant. It was only after me telling him to look for orange packaging did he then change his focus on the other 3 quadrants to now include the 4th where the spice packet resided. It was a weird experience to watch as his mom but I learned that that is called visual neglect. What I didn't say in the "Chef" post was that at one point in the store I had him look up at the sign over an aisle that gives 8 or 10 things that are contained in the aisle and I knew his answer he needed was on that sign but he looked and looked at it and couldn't find the answer. Then I had him read the sign out loud to me and he totally missed the first thing on the list. He read everything else except the very first thing on the list. It was weird. The stories of his visual neglect piled up in therapy yesterday and we were all left a bit speechless trying to process this new piece of information about Thomas's cognitive deficits.

The session went on to a couple of tests of Thomas's "working memory" and we quickly discovered that his working memory is pretty much non-existent. For those of you who don't quite know what working memory is, Wikipedia describes it like this:

Working memory is the system that is responsible for the transient holding and processing of new and already stored information, an important process for reasoning, comprehension, learning and memory updating.

Dr. K. did a few tests of Thomas's working memory and he pretty much failed everything. It was very sad.

For 35 minutes we discussed all of Thomas's deficits and for 35 minutes, as the minutes counted down, we all lost a piece of our hearts. I watched Thomas process all of this stuff but I couldn't read him very well. I just knew by looking at Dr. K. that he was sad and I knew inside of me my heart was breaking.

When we got home, I was in another room and Thomas walked by and sighed this huge sigh and I asked him what it was about. He said he didn't really know and I offered him a hug. As I held him in my arms and rubbed his back, I asked him if session had been hard and if it was upsetting him about what we learned about his cognitive deficits. He said it had upset him and my own sadness fell away because what mattered more was that Thomas has to deal with and reconcile his reality. With so much lack of insight into his illness, when he is made aware of something, it is like hitting him upside the head with a brick. He's shocked and hurt and depressed. Who can blame him?

I'm sad but he has so much more that is lost in all of this. It is his mind that is affected, it is his mind that has to come to terms with the fact that he has serious limitations and it is his mind that has to reconcile that he'll never been like everyone else. He will always be sick. He will always be challenged. He will always have to fight tooth and nail for what he wants and needs. Schizophrenia snatched him up just when he was  starting his young adult life (he was 15) and it has changed him forever.

It is so unfair to him.

So. Unfair.

Wednesday, May 20, 2015

Chef Extraordinaire

(Picture Credit: pixgood.com)


We made a plan in therapy a couple of weeks ago that Thomas was going to pick one day a week and make a menu, a grocery list for that  menu and then shop by himself for all of the ingredients. We forgot about it last week but yesterday not only did we not forget about it, Thomas did it all pretty much like a pro.

I came home from my doctor's appointment after having left him a note to plan his meal before I got back and when I came home he came right to me and excitedly announced that he wanted to make enchiladas. Wow. He couldn't have picked a more difficult meal to make! He insisted that he wanted to make that so he  made a grocery list (only forgetting that he needed a seasoning packet) and we headed off to the store.

The plan for me was to hang back and let him do everything on his own but he needed a little bit of help. He didn't know to look at the signs above the aisles so I pointed those out to him to help him navigate where all of his ingredients might be. The first place we got stuck in was the seasoning section.

It was very interesting and kind of sad to watch as he searched the seasoning shelves for the right one. Imagine if I divide the shelves up into 4 quadrants. Thomas stood there for the longest time and searched every quadrant but the lower left one. I don't know what kept him from looking down there but he tried and tried to find what he needed in those other 3 quadrants. Finally I asked him what color the brand's packing was and he said it was orange so I told him he needed to look amongst all of the orange packaging for what he needed. Finally he looked in the lower left quadrant and found his seasoning. I really wish I knew why he didn't even see that lower left quadrant without my help. I wonder if that's a function of his cognitive difficulties.

Then we found most of his other ingredients and I taught him about looking at the pricing differences and to look even further to the bottom of the shelf price to the part where it says the price per ounce. I told him that was just another resource for him to pay attention to when he was deciding between different brands of a product.

Then we came to ground beef. There was 10%  lean, 15% lean and 27% lean. I told him that I usually buy the 10% lean because it's the healthiest but I told him that if he were on a budget that he would need to consider the other choices. He needed a pound of ground beef so we talked about the 15% lean and the 27% lean choices. I explained to him that the 27% lean was full of fat and would cook down quite a bit and he would end up with less than a pound of cooked meat plus it would be a less healthy choice. Thinking like he was on a budget, he chose the 15% lean. I know if he were on his own he'd probably have to go for the 27% lean because it's the cheapest but I wanted him to think about healthiness too.

We came home and took a break because the shopping had stressed him out. We had gone to self-checkout and even with no one in line, he felt intense pressure to do what he was doing. I had to stop him at one point as his anxiety skyrocketed and show him that there was no one else in line and that he could take his time. This seemed to help.

After his break at home he began to cook. He started with the sauce and did really good! I only had to give him a little bit of help. I was impressed. Then it came time to cook the meat. He did better than the last time he cooked ground beef in that he wasn't as afraid of the heat from the stove but he cooked it for a while and then asked me if it was okay. It wasn't. There was still pink meat everywhere. I told him it was still pink and he said he didn't see any. I couldn't believe that he couldn't see it! It worries me because if he were cooking for himself on his own he would have ended up eating raw meat. So I pointed out all of the pink parts, which he still couldn't see, and he cooked it for a while longer. I'm not sure how to teach him to see something he just doesn't see.

At one point he had both the sauce cooking and the meat and he got very anxious having to multitask. Keeping the sauce stirred and cooking the meat was almost too much for him to handle. He did make it past that step, though, and I told him how proud I was of him that he didn't just give up.

Then it came time for layering the different ingredients. I taught him how to start then sat back down in my chair and let him handle the rest. He did really good but was very caught up in doing it perfectly. He's so intense about things like this, the need to make things exactly right and it makes me sad for him that he can't be more relaxed. He completed them, though, and got them in the oven.

My stomach was growling as I smelled them baking and I told him I couldn't wait to try what he had made. When Dan came home, Thomas met him at the door very excited to tell him that he had made Dan's favorite dinner. It was then that I realized that he had chosen this meal to impress his dad.

<3

When we all sat down to eat and each of us tasted it we were so impressed. I complimented Thomas on how delicious they were and that he had done the whole dinner like a pro. He was so proud!!!

So, his first foray into planning and executing a meal went amazingly! I am very proud of him for fighting through the anxious parts and I am proud of him that he didn't hand any of the preparation over to me to do. For the most part, I sat in my chair in the kitchen watching him and offering a couple of pointers but in the end, he owned the success of the meal.

I couldn't be more proud of him!

Tuesday, May 19, 2015

Meds, Food, Forgetting, and Losing The Battle

 


Yesterday I walked past Thomas's meds case late in the afternoon and noticed that, once again, he had forgotten to take his morning pills. I am completely baffled about why this is happening. Maybe I'm naïve, maybe he's looking for a way to get out of taking them altogether but he tells me that he knows his meds help him. So, what is with missing his morning meds so much lately?

I was thinking that it might be an issue of routine change but nothing really has changed. It's so rare for his life to go any differently than it does and especially yesterday, there was no routine change at all and he still forgot them.

I know I posted before that I am wondering if it has to do with a decline in his gray matter but maybe I'm ambitious in that line of thinking. The thing is, something is not right, though. He seems to be not forgetting a whole lot of other things in his life that I can see. Well....that's not true....he's not showering still. He did shower on Friday but I came home yesterday and took a good look at him and he looked rumpled and his hair was greasy and he didn't smell so good. To top that off, it seems like he's gained more weight too. I'm hating this because I'm seeing a decline in a much different way than I have seen in the past. He's never really been a gainer of weight on his meds except for one other time and that was kept under control but this time around it seems totally out of control. He's constantly coming to me telling me he's hungry and sometimes I give him healthy snacks but other times I tell him that he'll have to learn to fight through the hunger because eventually he won't notice the feeling of hunger any more or at least as often. I'm feeding him more dinner (my one chance to pile on all of the healthy foods) and within less than a half an hour, he's back out in the living room with a forlorn look telling me he's hungry again expecting me to either give him permission to eat or to help him come up with something to eat.

(Picture Credit: motleyhue.org)


When he does that, I always sit there for a moment contemplating what I should say and do. I know how hard it is to lose weight, especially when you don't feel so great mentally and even when I feel great mentally I fight with hunger and cravings so I know what he's up against. The problem is, he doesn't seem to have the strength and resolve to try to live with it. I envision that he gets up after Dan and I go to bed and he eats. It really wouldn't surprise me. I just don't know what to do.

I don't know what to do with all of this. I have suggested to him that he set an alarm on his phone to take his meds and he says he doesn't want to do that and that he "wants to try to remember on his own" but that doesn't seem to be working. Leaving him to his own devices with both meds and food seems to be failing and as his mom, I feel powerless to help him make a change. All of his t-shirts are getting tight and today I'm taking him to buy new jeans because his are skin tight and he finally admitted the other day that he's uncomfortable. Is this where we're headed? Are we finally joining the ranks of others living with schizophrenia and watching as the weight packs on and we are powerless to stop it? Are we joining the ranks of others living with schizophrenia and ushering in an era of not taking meds and getting sick again?

I don't know............

I need help though. I don't know what to do anymore. So much of this is on Thomas to be responsible for. I'm fighting so much lately with how much I should be involved with all of this and how much I should let go. He has talked so much of independence which means "mommy" isn't there to make things right, watch the diet, make sure he takes his pills, and make sure he showers and changes his sheets to name a few. I fight between,

"but he's sick, he has schizophrenia, he needs help with things."

and,

"He wants to be on his own so I need to step back and let him practice that and keep myself out of it all."

I'll give it more time and I'm going to talk to both of his doctors. I need help. I admit I'm at a point where I feel powerless to change anything about this situation.

Monday, May 18, 2015

Tom's Corner--An Open Letter To My Good Friends


 
Dear Friends,

You guys have been the best support for me through the years. There are times I miss you guys because my illness puts me in isolation for a long period of time. That and you're lives are filled with business.
 
I personally can't wait to move out with you guys but I still have things that I need to learn such as washing my own clothes and preparing my own meals.
 
I think renting out our own place would be kind of cool. Other than going to our jobs we would play video games most of the day and eat all kinds of junk food. However I can't right now because I still need to work on some life skills and become more stable mentally speaking.
 
Thanks for sticking with me for all these years and I can't wait to move out with you guys.

 
-Tom Emery

Saturday, May 16, 2015

Is Gray Matter Loss Responsible For The Changes?

(Picture Credit: medicaldaily.com)


A change has taken place lately with Thomas and his meds and I have been trying to figure out what's happening. I noticed about 4 weeks ago that he started forgetting his morning meds. Sometimes he would catch it and take it a couple hours later but as the weeks went by he began totally forgetting them. I can't figure out what the deal with that is. I thought it might be an issue of his routine being messed up sometimes but sometimes he forgets his meds on a normal day.

Interestingly, the day he came to me and told me he wanted to move out and we went over to look at the place was one of those days that he forgot. We came home from looking at the house and after we had our long talk, I went to work on filling his pill case. Inside it sat that morning's pills. It was like divine intervention telling us both that it wasn't the right time for him to be moving out. I brought his pill case to him and asked him if he could see anything different about the case and it took him a minute but he finally realized that very day he had forgotten his meds. Now, with moving out off the table for a while, we need to figure out why he's not taking his meds.

In therapy on Thursday, Dr. K. talked about setting an alarm for him to remember his pills and Thomas and I had talked about this earlier. Thomas had told me that he didn't want the alarm and that he really just wanted to try to remember them on his own. I get it. He wants to prove to himself that he can be responsible for taking them. We told Dr. K. as such and we all agreed we'd give it a few more weeks and see if he got better about it without the alarm.

I have a theory about the whole thing though. I have to wonder, are his cognitive limitations (a.k.a. memory--or lack thereof) getting worse? Is his schizophrenia working its "magic" on him and causing him to forget? I know that when someone is in psychosis that their gray matter is compromised and can even disappear slowly and I am wondering if that is what is happening. Is he losing gray matter resulting in more and more memory loss? I am not sure how schizophrenia works when it comes to cognitive difficulties. Does it work the same way on prolonged cognitive issues as it does on psychosis--meaning does being plagued with cognitive difficulties for too long cause gray matter loss like being in active psychosis does?

It's certainly something to be researched.

In the mean time, I am keeping an eye on Thomas and his meds. I'm torn between reminding him--though sometimes even I forget about them--and letting him go since this is one of those life skills he needs to learn to become independent.

For now, I'm letting it go, I've decided. It's not daily that he forgets his meds, it's just about once or twice a week. If it begins to worsen beyond that, though, I am going to help him implement an alarm system on his phone to remind him to take them. The changing landscape is concerning and I don't want him to go much longer doing this sort of thing.

Friday, May 15, 2015

She Said, "I Hate Schizophrenia!!"

(Picture Credit: HealthyPlace.com)
 

You know, this post was going to be about my local NAMI meeting that I attended and how there were only six of us at the meeting and that we were trying to figure out how to grow our chapter but then something else happened that matters more than all of that. At least it does to me.

When we got there (my mom and I) the group decided that we should go around and introduce ourselves and tell what we do. First up was the leader of the group who, at first, scared me when we came walking in the room but as the meeting went on I grew to really like him. Then came _____ who stated that he was a Gulf War vet who was medically retired because he has paranoid schizophrenia. Then my mom introduced herself and said she was there with me to support me and then it became my turn.

I introduced myself and told them that I had a son with schizophrenia and that I write a blog and run a Facebook page about schizophrenia to educate the public about the truth about schizophrenia. They all seemed to think that was pretty cool.

Then came ______ who introduced herself and told us that she is bipolar and then lastly was _______ who has cataplexy and he was pretty involved with politics and mental health. He was a very interesting man and one I really loved listening to because he was very passionate about his work in changing policy around mental health issues, something that I'd like to someday be involved in.

Then it happened.

The thing that shocked me.

The thing that I wasn't prepared for.

The thing that I jumped on immediately and attempted to correct.

________, with bipolar, stated,

"I hate schizophrenia! I hate the word! I'm scared of the word and I'm scared of the people with it."

Wait.

Did I just hear that at a NAMI meeting with 2 members there, one with schizophrenia and the other with a son with schizophrenia?!?!? Did she really just say that? Right there in front of us and right there in a supposedly safe place for people from all walks of life??

I didn't miss a beat and I told her that that was what was wrong with society. They hear a word, a diagnosis, and they prejudge based on that and they are afraid. I told her that people with schizophrenia were no different than someone like her with severe bipolar. We are all fighting something and we need to get the word out there about the illness. I went on to tell her my mission with my blog and she just sat there with "the look" on her face and I knew I was up against someone whose mind was slammed shut to any education or any chance to get some education.

When I stopped talking she had the nerve to tell me that basically I was wasting my time doing what I do and that it was completely pointless.

Really?

I have 5800+ followers who might say differently, lady.

I told her that when I began my blog my main goal was to try to change just one mind and as time went on, I changed many more than I ever thought I could. I said that I wasn't going to stop what I was doing and that I was never going to give up hope that perceptions (like her ignorant one she had to spew at a NAMI meeting) could be changed, even if it takes a long time.

Frankly the whole exchange took me aback. First that she would so loudly and vehemently state how much she hated people with schizophrenia and then that she would make these statements in front of actual people with schizophrenia!!!!!

Who does that?

Well, let's face it. We all know who does that. She does it and millions other like her do it. Millions of unenlightened people who are quick to judge and who, unfortunately, are not only spewing their crap to a few people in a NAMI meeting but they are going out into the world and spewing that to everyone that will listen.

This is what is wrong with society!!!!!!

Ultimately what her ignorance did for me was renew my passion for schizophrenia education and advocacy. The fact of the matter is,  I will not stop doing what I'm doing until the day I die and in the mean time I hope I will make a difference in this world where the perception of schizophrenia is concerned.

Thursday, May 14, 2015

The State Of Mental Illness Education and Advocacy

(Photo Credit: thepeopleproject.com)
 

Yesterday my town held a "mental illness fair". I really wanted to go and see what was offered and to see what my town could conjure up for consumers of mental health services.

My mom and I were greeted at the door with a green awareness ribbon to wear and we began wandering around. One of the very first booths we found was Dr. K.'s booth and we stopped to chat with him about things. Right now my mom is very interested in finding a way to get a halfway house set up in our community for people like Thomas who have a mental illness and want to be independent but that aren't quite ready to jump in fully. We talked a little with Dr. K. about it and both my mom and I left his booth feeling like he felt that was too much of an undertaking and he seemed a bit disenchanted with the idea, almost as if he'd been there, done that. What struck me was his lack of enthusiasm in the face of someone (my mom) wanting to begin to change the landscape of mental illness advocacy in our area. I have to say that I was a bit disappointed but luckily it didn't deter my mom. She would spend the rest of the fair in search of people who either knew of something like she wants to start or if they supported possibly opening something like that. My mom is beautiful in that way, because she has a grandson with a serious mental illness, she would move heaven and earth to get him the right resources. Granted what she dreams of is a huge thing but I'm a big proponent of following your dreams because I have lived first hand that if you want them bad enough and move towards making them possible, that eventually they will come true.

Next we stopped at a booth where they were offering rehabilitation services to the mentally ill. I did not know that something like this existed in our town. We talked with them for a long time. I met and talked to Andy Ruggiero of Sequel Alliance Family Services and he told us all about how their program, which is funded by Medicaid (hooray!), can help Thomas get on his feet and become more independent. I listened to him talk and then asked him about a specific scenario. I told him that Thomas couldn't drive and that he was anxious about learning the city bus system and riding the bus. Andy told me that they would teach him all about how to do that and would even ride with him on the bus to help him feel more comfortable. It seemed to me that these people were heaven sent and I took all of their information and tucked it away to be read later that evening. I was completely impressed by their mission and I plan on taking full advantage of their services for Thomas. This is exactly what he needs and when I came home and told him about it he was very excited.

The next important booth we stopped at was our regional medical center's mental health facility and outpatient care. Looking back it was pretty hilarious because this was the table filled with all kinds of free goodies (my favorite was a purple brain-shaped stress ball) and they really looked like they cared. The operative word here for me is "looked" like they cared. I pinned one of the ladies down and began talking with her about the services offered and I proceeded to dig into "The 5th Floor" which is our mental health hospital floor where Thomas has been hospitalized twice and gotten pretty crappy care. This woman talked a good game about how fantastic they were and promised me that if Thomas were ever there again that he would get adequate care.

Huh.

"Adequate."

Yeah, not the word I wanted to hear. "Fantastic" would have been a better word, and even "phenomenal" would have been the perfect word but "adequate" was what I got and "adequate" is not enough for me or for my feelings of comfort about putting Thomas there if he gets sick again. You see, through the grapevine of several respected mental health providers that I have run into, I have been warned that our regional medical center and it's mental health section are in disarray (to put it mildly) and I've been told more than once to avoid the place at all costs. That's not a comforting thing to learn when you know it's inevitable that your loved one with mental illness will eventually end up there again.

I took my purple brain-shaped stress ball, tossed it in my bag and walked away from that booth in disgust. They clearly have a long way to go before I'm even sort of excited about their services.

We wandered the rest of the booths and my last favorite one was River Place Counseling and Wellness, PLLC. There I met Mark Whitinger, M.A., M.Ed. and Nina Woods, M.Ed. Ed. S.. I absolutely loved these two people and what their business provides and I give them kudos for what they are doing. Even better they were very enthusiastically interested in what I do with my blog (website and Facebook page) and they both took my card and promised that they'd refer people to my work. I was so excited because I wanted a chance to get a following here in my area. I have so many of you from everywhere yet just one from my area and I think it's time to get my community more involved. At least those with schizophrenia and their caregivers.

Noticeably absent from the "fair' was our local police department who I had hoped to run into and talk to them about their crisis intervention training for mental illness calls but we told the woman running the fair that we felt the police needed to be represented in future events. She thought that was a fantastic idea and said she would invite them next year. I hope that will be the case.

Lastly, very (to me) noticeably absent was my local NAMI. Where were they?!?!? The coordinator at the fair told me that they had invited them and that they had been unable to make it.

REALLY???

Wow.

Right then and there I made a mental note that at the next fair, I would be the one running the booth for my local NAMI. It was utterly ridiculous that they weren't there and I plan on changing that for the future. I did find out, however, that they had a meeting that night and I decided to attend it. My next post will be about that meeting because I think it needs to be talked about. The mentally ill and their caregivers are woefully without support and advocacy and in my opinion it is NAMI's responsibility to do that job. I will share, tomorrow, how that meeting went.

All in all, the fair was interesting but really could have used more booths. I am being torn in two directions because I want to represent NAMI next year but I also think that caregivers of someone with a mental illness need a booth of their own, if even just for a place to stop for a second and pick up a heart-shaped stress ball with "you are not alone" printed on the side.

Monday, May 11, 2015

The Shadow (And More About "The Talk")

(Picture credit: therumpus.net)
 

Thomas worked last night and he once again bravely walked home in the dark. He had a little incident where his shadow scared him but he said he recovered from the quickly. I've got to say that I am more anxious about him walking home in the dark than he is. I am very proud of him, though, for taking that on and continuing to do that. I think it's a good sign of stability coming back. Thank God!

I mentioned in my two previous posts that there was more to my conversation with Thomas moving out. As it turned out, he came to me after we got in the house and had been relaxing a while and asked me if he could move out if Jon were to learn how to handle him during a crisis. Thomas told me that Jon was willing to learn about schizophrenia too. I think that's sweet and the sign of a good friend but I just didn't think that right now was the time for that. I told Thomas that learning about schizophrenia takes time and experience and I didn't really believe Jon could commit to that. I could be wrong but I maintain that now is not the time for that sort of thing. I'm still wanting Thomas to be stable for a longer period of time and to master some basic life skills before I send him out to live with anyone else. To Thomas's credit in the last few days, he has worked hard at doing things that need to get done that I remind him of. I'd like to see the day when I don't have to remind him at all.

At dinner time I stopped in Thomas's room to let him know that dinner was ready and he had pulled up on his computer an apartment complex website and he wanted to me check it out. It was a much better option and room for just him and Jon. That would be a more ideal situation but still one that he needs to wait for. I did read in the description of the apartment that there were washer/dryer hook-ups and I told him that meant that he'd have to go elsewhere to do his laundry since he wouldn't have a washer/dryer to hook up in the apartment. He said nothing about bringing it home to do which I thought was pretty cool but I wanted him to know that carting laundry somewhere else was an extra step to doing laundry and one he might not take advantage of. He closed his computer and came to dinner.

It's not that I don't want him to move out, it's just that I'd like the conditions to be more ideal. I think a two bedroom apartment with one friend, near home and work, not to mention some solid stability, is the order of the day. I do see it in his future but how far into the future I do not know.

As for Thomas's weight, he's doing much better with his snacking. I think he is like his grandpa in that way in that when he sets his mind to something, he does it. I can't remember when that happened last but it's happened a few times. My dad, when faced with having to give something up, used to just stop the thing he was doing and he'd stick to it. I always admired that about him because I'm not so great at that myself. It's nice to see that quality manifest in Thomas.

On another note, I have started "family" therapy with my mom which so far manifests as me sitting there while she gets therapy. However, in our first session I talked about my grief about losing my dad and I got to get out some of the secrets I have held about the day he died. It felt good to be able to utter the words to someone about what I knew. I did completely break down, though, but ultimately it has helped me a great deal. We have therapy again today so we'll see what comes out of it. I am generally just an observer of things as opposed to actually getting involved so just being able to see my mom get therapy helps me. I learn a lot from that process.

Lastly, Schizophrenia Awareness Week is coming up. I am very excited about that. Every time there has been an awareness week I have worked on huge projects for that week for all of you to share with your friends on Facebook and Twitter. I hope this time will be no different and you'll help me get the information out there. When I have exact dates, I'll let you know and we'll begin our prep for it.

Well, it's Monday, the beginning of a new week. Let's hope it's a good one, okay?

Saturday, May 09, 2015

The Cold, Hard Truth In The Stark Light of Day (Part 2)



In a really big way this is a very hard post to write. Ever since all of this stuff about Thomas moving out with these 4 other kids and a baby and then the ensuing conversation with Thomas, I have felt very sad. I think we all know about schizophrenia and its effects on the brain and how it manifests in each of our loved ones. I also think we all know the grief we feel about it all especially when we're faced with the truth and that we sometimes push it away from our consciousness in an effort to try to forget about it all for just a little bit. Unfortunately for me, pushing it all away was impossible for me on Thursday and between Thomas and I, we were hit with a wrecking ball named schizophrenia.

In part one I told you about what led up to what I'm going to write about today. I wrote about how Dr. K. and I confronted Thomas with some questions about his independence and I wrote about the kids' plans to move out. Today I will tell you about the living conditions and then the conversation I had with Thomas after seeing the house.

When I pulled up in front of the house, I could see that it was very small. There was no way that 5 people were going to fit into it unless everyone shared a bedroom or two. There would have been no privacy and no place for Thomas to escape to. When Jon came down to give us a tour, the occupants didn't answer the door so we wandered the property outside and I asked Jon questions about the place. As we walked into the back yard, Jon pointed to what amounted to a shed and told me that that was a bedroom and that was where he and Thomas would live. I asked if there was a bathroom in there and he said no and that there was only one bathroom on the entire property. This meant that Thomas would have to leave the building in the middle of the night and go into the other house to use the bathroom. That would never happen. I had Thomas also check to see if there was air conditioning in the shed and he wandered around it and found nothing. That was when Jon told me they'd get a fan. Our summers can reach up to 110 degrees and after living without air conditioning at various points in my life, I knew that no fan was going to cool that shed in the summer (not to mention there was no heating in the place either). That pretty much sealed the whole thing for me in terms of making the decision for sure that this place was not a good place for Thomas.

When we got in the car, Thomas asked me what I thought of the place. I sat there next to him in silence trying to swallow the lump in my throat and calm the knot in my stomach. I was mad about the situation and I was mad that I would have to tell Thomas this wasn't the right situation for him. So I said to him,

"Do you want me to tell you the truth?"

He did and so I began talking. I told him about how the living conditions were utterly wrong for him and that there was no way I wanted him to move in there. I explained to him many things that living in that manner meant for him and his illness. I finally unleashed everything that had been building up in me for days.

Then came the hard part, the part I never ever want to utter to Thomas but that he needed to hear. I told him that I feared he wouldn't take his meds and that just as bad, since some of his meds are controlled substances, that they were in danger of being stolen by these kids and sold or abused. Thomas countered that by telling me he'd get a safe. C'mon now. No. With everything I said, he had a counterpoint to it and I thought that there was no way I was going to get through to him.

We pulled in the driveway and I kept the car running and I began the hardest talk I think I have ever had with Thomas. I told him that I worried that the stress of living like this would cause relapse. I told him that with every relapse his brain would be damaged even more and I feared that if he spent too long in psychosis that I would never get him back from it. I told him how sorry I was that I had to tell him all of the realities I had already told him and was about to tell him.

I asked him if he had remembered his last serious psychotic break and how he had sat in his room for hours crying from the crippling fear of Slender Man coming in to kill him and how when I was finally able to get him to leave the house, he walked from the house to the car huddled as if something was going to come from the sky and crush him. He didn't remember. I told him that if that situation happened again and I wasn't there to care for him and get him safely to the hospital that he would be virtually alone trying to keep from falling apart completely. I told him that his friends didn't understand his illness and wouldn't understand the gravity of what was taking place if he had a psychotic break.

I went on to tell him that he didn't have the same concept as I did of how his illness has affected him. I told him that I had watched for years as he moved in and out of psychosis and how, even now, he wasn't out of it completely. He admitted that he still felt watched and that he believed that he was going to be arrested and taken away. I told him that because I had seen all of these years how he had been affected by schizophrenia I had a complete understanding of how it manifests in him and I could safely assume from past experiences that the future held similar experiences for him. I told him that he had not been stable long enough to even begin to consider moving out. Remember, it was just a month ago that I left for Seattle and he had a psychotic break and since then he has not fully recovered.

We talked again about his memory and his inability to take care of basic needs in life like remembering to do laundry or take a shower or do other housework that he's supposed to have done every week for years and he still doesn't do them unless he's reminded. I told him that living on his own meant remembering to take care of himself in all ways because I wouldn't be around to help. I told him that going into this living situation would be a "trial by fire" and I asked him if he knew what that meant.

He didn't.

I explained to him that if I were to set him free to move out to these conditions that it would be like throwing him into the center of a battlefield without any armor to protect him and no weapons with which to defend himself. To be fair, he did bring up a good point. He said,

"How do I know how I'm going to do out in the world because you provide me with this cushion and the only way I'm going to know if I can make it is if I get away from this cushion."

He was right. I do provide a safe cushion but I do it for a reason though I admit that it's probably a bit much.

But still....

I told him that I would stop providing such a luxurious cushion and that if he wanted to move towards independence that he would have to pick up doing things that he hasn't done very much of, if at all. We committed to try to expedite his independence in the coming weeks but moving out was not going to happen. Not now and not into this particular situation in a shed with no heating, air conditioning, bathroom or safe space to escape when things get rough for him.

Throughout the conversation I could see him seething as he stared straight ahead and tapped his foot. I told him as the conversation was finishing up that it was okay if he wanted to hate me and if he was mad at me. I told him that I could take it and that when things settled we would be okay. He then said to me,

"I don't hate you."

and he got out of the car and walked to the back door.

I brought in the trash cans and came to unlock the door and we went inside. This was not the end of the conversation because as the evening wore on, he came to me with how he could make things easier for me to let him move out. On Monday I will share what transpired that evening.

By the time we had reached the back door, I felt like the world's worst person having just stated the realities of his illness. So much more was said to him about schizophrenia and how it affects him but I can't possibly get it all down here in a post. That evening I walked in that door with Thomas and my heart was heavy with sadness. I didn't want to have to tell him the truth about his illness but I had sheltered him for long enough. He needed to know these things and unfortunately there was no other way and no more perfect opportunity to tell him.

This illness is cruel and unfair and unfortunately it made itself known to us once again and in spectacular fashion. We couldn't avoid the truth any longer.

Friday, May 08, 2015

The Cold, Hard Truth In The Stark Light of Day (Part 1)

                                                    (Picture credit: berniesiegelmd.com)
 
Perhaps you have noticed that I have been away for a couple days. There are a couple reasons for that but one of them I will talk about today and tomorrow.

On Tuesday Thomas went to a friend's house and when I went to pick him up, he got in the car and very excitedly told me about how he was going to move out and live with his friend Jon and 4 other people. I was, of course, immediately apprehensive. I knew the house that they were thinking of moving into and it's basically a pill box house and there is no way 5 people were going to fit into the house. I listened to Thomas talk about it and asked a couple of questions but ultimately told him that we should talk to Dr. K. about this. We weren't going to be seeing Dr. K. for two days so I took the stance of "needing to think about the whole idea of moving out" and that I would talk more with him over the next couple of days. I didn't want to be a "dream squasher" and deny him a chance for independence but everything in me screamed that this was a horrible plan.

The initial plan included Thomas, his friend Jon, Jon's sister, Jon's sister's fiancé and one other person all living together in this small house. I knew that five people in a small house was a disaster waiting to happen for Thomas for many reasons though one big one being that the stress and lack of structure could cause symptoms to reemerge. All I could think to myself was that there was no way that I was going to let this happen but I didn't know how I was going to be able to tell him that in a gentle way and in a way that wouldn't alienate him from me because I was saying no to the plan.

Then yesterday he went to Jon's again and when I picked him up to take him to therapy he, again, got in the car very excited and told me that they were going to move into a different house and that there would be more room. He said they were all going to go look at it after his therapy and he couldn't contain his excitement about all of it. Once again, I stayed pretty much silent on the subject and told him, again, that I thought we should run this by Dr. K..

We sat down in therapy and Dr. K. brought up the whole moving out thing. It was very serendipitous that he was doing that given that was what had been on our plate for 2 days. Thomas immediately, proudly and excitedly announced that he was going to move out soon. Dr. K.'s initial response was,

"I'm very excited for you Thomas!"

Excited?

No.

Ugh.

Please, Dr. K., get on board with me here and listen to the plan and for God's sake stop saying you're excited about this!!!!

Dr. K. went on to ask questions and out of the questions we learned that the kids Thomas was moving in with were his friend Jon who is 21 and then his sister who is 17, a high school dropout and a mother of a two year old. Then there was the fiancé who is also young and then another high school kid. First, Thomas has no business living with a bunch of underage kids. That is just a recipe for disaster. I saw Dr. K.'s hesitation once he learned that information but he went on questioning Thomas about it. He asked about Thomas's income and he said,

"So you must be getting about $700 per month from Social Security, right?"

"No," I said, "He gets $311 per month."

Then he asked about how much he was making from his job and it came out that Thomas makes about $35 a week working. All of it hardly enough to live on, even with roommates.

Then he asked if there were any concerns of mine about this besides him getting enough sleep and proper meals. I told him that Thomas had been forgetting his meds a lot lately and while he did finally go back and take them a few hours later, he still was forgetting them and I felt that in a situation like he would live in, a place of chaos and without structure, that he would forget them more often and probably not go back and take them. There were a couple other concerns we covered one of which was the obvious and that was relapse.

Then he started asking Thomas about his life skills like could he write a check ("No") and what could he cook for himself without help ("frozen meals...at least he thinks he could"). Then I brought up that Thomas hadn't washed his jeans in over a week and that he told me that he kept forgetting to ask me to teach him again (I've taught him three times already and he still can't remember how). I told Dr. K. that he had been wearing the same jeans for days now.

Then we talked about Thomas's self care and it came out that Thomas is still showering just every 4 days. Currently his hair is flat and lifeless and full of grease and dandruff and he hasn't bathed in days. Dr. K. said,

"So you haven't been showering every other day like we talked about."

Uh

No.

Dr. K. tried to explain to Thomas that he has dirt and germs on his body that need to be washed off and Thomas was completely unfazed by that and stated that he always showers when he works.

Yes.

He works.

One day a week.

So, his gauge for when it's a good time to shower is only when he has to work?

Not good.

Then we talked about washing his sheets and all of that conversation kind of flew by but not before it caught the periphery of my attention and I remembered that Thomas hadn't changed his sheets in weeks. Imagine if he were living on his own. Do you think sheets would get washed? No. He can't even remember to wash his jeans.

The end of the session was about relapse and both Dr. K. and I agreed that this was the number one concern about Thomas moving out. Throughout the entire session I was giving Dr. K. the look trying to get him to see that I felt like Thomas moving out into this situation was a nightmare and he caught a couple of my looks but not enough of them. I wanted desperately for him to tell Thomas he couldn't move out but I realize now that that isn't his place to do. As such, I felt cast out on stormy seas trying to figure out how I was going to break the news to Thomas that in this case he would not be moving out.

After session we drove up to the house. I sat in my car in the driveway and snapped a picture of the house, shocked at the size of it. No basement, no upstairs, and just 2/3 the size of my house and my house is small. While I waited for Thomas to walk down to Jon's house and get him and bring him back to the house so we could look at it, I fired off an email to Dr. K..

It's said,

"This whole moving out thing with this particular group
 will happen over my dead body.
I have a lot to say on this subject
(because I wasn't able to say my peace in therapy)
so I will email you later."


Yes.

Over my dead body.

I said it and I mean it.

----------------------------------------
Tomorrow I will talk about the living conditions and the serious conversation I had with Thomas as we drove home from seeing the house.

Tuesday, May 05, 2015

It's Time To Get Serious


Well....the appointment with Dr. N. went well yesterday. I'll admit I was a bit checked out of it having just come from my own session with my psychiatrist and spending the whole time crying about my dad. What I couldn't avoid, though, was the announcement by Dr. N. that Thomas has gained 35 pounds since they last weighed him.

35!!!!

Like I said before, I had noticed lately that he was gaining but I didn't know that it was that much all total. I am so sad now. Dr. N. talked about it being caused by the meds and even said that we may have to switch meds. Can you imagine? Really? We're going to switch off of the meds that are helping him pretty decently right now? Granted he wasn't saying he was going to do that right away but he threw that out there and it scared me. What he did say, though, was that Thomas needs to go on a diet.

A diet.

<sigh>

Ever since his primary care provider told him he'd gained 12 pounds he has started to struggle with coming to terms with changing his eating. Like most young people he eats all the time and now does it more when I'm gone from the house but then, when I get back, feels the need to confess to me that he ate something. That's just what it is, a confession. It's not a casual statement about having eaten something, he actually acts embarrassed and ashamed. I don't want this for him! I don't want to be the person that he feels he has to confess to. That puts me in a horrible position because, at least for me, when I feel like I have to confess to doing something, the person I confess to kind of becomes my keeper and I kind of don't like them very much. I don't want to be Thomas's keeper. I just want him to learn to manage his appetite and make better choices for himself when he does go to snack.

He came to me the other day holding the button from a pair of jeans and he said that it popped off. This is the second one lately. What I don't get and never have gotten about Thomas is that he will endure something, like wearing jeans that are too tight for him, and he won't complain even a little bit. He'll just sit there with the waist band cutting into his belly and he'll take it. It's so sad. So yesterday I told him that we were going to go shopping and get him some new pants that fit. He's so used to jeans that loosely hang off of his waist and now all of them are skin tight on him. I want for him to feel them hanging off of him again.

Dr. N. talked about Thomas going on a high protein, low carb diet. That'll be a real trick. I'm currently trying to do the same thing for myself and it isn't easy!! I've got a handle on it for the most part but it's taken a lot of work and a lot of resolve. Teaching Thomas those skills is going to be hard. It'll mean reading labels and looking for the healthy stuff like low calories and carbs and high fiber. It's hard enough to teach him how to cook a meal or do laundry, this isn't going to be easy trying to get him to change his whole lifestyle.

I'll admit something though. Part of my sadness is about me. It's about me in that as his mom, I don't want to be the one to deny him the things he loves. I have always made it my mission to make sure he gets the right amount of fruits and veggies and from there I have let him do his own thing as far as snacking goes but now I'm going to have to replace his pretzels and crackers and junk food with apples and beef jerky (That's my solution for the time being. That and turkey sandwiches on high fiber bread). That isn't going to be any fun for him and it's going to make me sad that he's at the point that he has to watch what he eats closely. I'm 43 and I've been at it for a while and I hate practically every day of it so imagine what it's going to do for a youngster in the prime of his life.

So, today we start to get serious. I'm going to get him out walking again and I'm going to make a sandwich and cut up an apple for him and put it in the fridge so he can grab it when he feels like he needs something to eat. The problem is, his appetite is insatiable right now so it's going to take a lot for him to learn to stop listening to his growling stomach, treat it like an adversary, and try to push through until it's time for a proper meal.

Monday, May 04, 2015

Another Drive Up The Hill



I titled this the way I did because today is our visit to Dr. N. (psychiatrist, meds guy) for Thomas and my visit to my own psychiatrist. We live in a valley with this massive, steep grade to drive up to get out of the valley and at the top, the land opens up into the most beautiful farm fields (pictured above). From there we drive another 30 minutes or so to get to Dr. N.'s. We drive this drive a lot but today's will be a little different from others lately because this time, Thomas seems to be doing better again and our meeting with Dr. N. should be a good one.

That is unless the "Thomas Whisperer" (Dr. N.) doesn't get information out of Thomas that I was unaware of which is totally possible.

I was in awe of how he gleaned information from Thomas last time and he did it with this calm, self-assured demeanor that probably would have tricked me into spilling all of my secrets without meaning to if he were my doctor.

We go into this appointment with some really great news and that is that Thomas walked home from work in the dark, alone last night!!!!!! Can you believe it? He actually did it. On a whim, as we drove to work yesterday evening, I asked Thomas how he was feeling about walking home after work. I really expected to hear what I had heard just days before and that is that he is still scared and was afraid someone would stop and try and pick him up again. Instead I got a:

"I'll try it. I'm feeling brave."

Wow!!

I was so happy for him but nervous too. I'm personally not crazy about him walking home at night at all but I have to put away my own fears and anxieties and let him do what he wants to do. All of this is practice for when he becomes independent from me. I won't be there to watch out for him all the time and letting him walk home alone last night, against my better judgment, was a move in that direction.

At 10:25 (his shift ends at 10) he came through the front door. He wasn't smiling and he wasn't particularly enthusiastic about what he'd just done but he said it went fine. I've got to say that last time, the time when the guy tried to pick him up, he had told me that the walk home had been fine only to find out later that it hadn't. Like I did the last time, I'll take him at his word until he says something different, if he ever does.

As for me and my appointment with my psychiatrist, this is my second to last visit with her. She has some serious family issues and is leaving her practice to take care of them. When she told me that was happening she said it with apprehension, expecting me to break down, I suppose, but instead I told her that I had been in a similar situation and I totally understood why she was leaving.

Yes, I understood...but....

Quite honestly I am very worried and a little bit sad. I'm worried because she's turning over my meds management to my primary care provider. Yeah....so my cocktail of meds will be managed by someone who doesn't have the first clue how to take care of that part of me. Secondly, I'm worried because even though she told me that she would come back to the practice eventually, I got a letter in the mail the other day that sounds to me like she's never coming back.

Then what?!?!?

This area is one of the worst areas for finding proper psychiatric care. Let's face it, you can't find proper psychiatric care practically anywhere nowadays. So if she doesn't come back, I'll have to begin the hunt to find a new psychiatrist--an endeavor I do not look forward to at all.

Meanwhile, I am entering the summer months when, for years now, I have become seriously, clinically depressed and I won't have any kind of proper support to get through it.

I'm scared.

To say the least.

I'd rather be in a mixed or manic episode than to have to ride out months of depression alone. It can get pretty dark inside of my mind when I'm depressed and now I'm going to have to keep it together all by myself. We'll have to see how that works out. In the meantime, at my appointment today, I am going to ask her for at least six months of refills on all of my meds in the hopes that I can manage my own meds for the next half a year until I either see her again or I find a new psychiatrist.

So, today is going to be a mixed emotions day. For one, Thomas is doing good and it looks like there will be no changes for him meds-wise but for me, I'll prepare to say goodbye to my long-time psychiatrist and say a few prayers that I'll make it through the summer and beyond. I'll hold onto Thomas's re-growing stability and find my joy in that for today.

Saturday, May 02, 2015

Tom's Corner--An Open Letter To My Customers

(Picture Credit: dreamstime.com)


Dear customer at the discount store I work at,

Hi, you may not know me, but I know you think I'm a regular person working at my job, stocking shelves and putting out items on display. Well, what you don't know is that I have schizophrenia. I struggle to keep my composure in front of you. I struggle to keep myself from looking at you 100 times thinking you're here to take me away from my quiet life or that you are about to steal an item that you can easily buy for a cheap price. If you knew my struggle you would probably avoid me because media has labeled me as a threat when I'm really just an easy-going guy. If you understood my struggle you would probably find a way to support me trying to live my everyday life. Just thought I should let you know that.

                                                -Tom Emery

Friday, May 01, 2015

Happy Two Year Anniversary!!!!


The story really begins at the end of October 2012. Thomas was in his second hospitalization and I was fighting to keep him in there. But his 18th birthday was just days away and he believed there was nothing wrong with him and he hated the hospital so he planned to check himself out on his 18th birthday. There was nothing I could do about it short of getting a judge involved and I just couldn't do that.

I sat in a quiet room with a doctor and two other mental health workers and they told me solemnly that Thomas had acute paranoid schizophrenia and that his prognosis was bleak. As they called Thomas in for a family meeting, I choked back tears so that he couldn't see me crying. My heart was completely shattered and I didn't know what to do. Thomas and I left the hospital the night of October 31st, 2012 and drove home. On the ride home we talked about schizophrenia and what it meant for his future and his listened intently, saying very little.

I spent the next few months in denial, unable to accept his diagnosis fully and while I bought every book on the subject that I could find, I couldn't bring myself to read a single one of them. Knowing that my boy was now diagnosed with a serious mental illness was just too much to bear.

Then New Years Day 2013 arrived and I decided it was time to get my act together and begin doing some research. Thomas was even sicker now having been released from the hospital on meds that weren't working. I knew that I had to jump into action if I was going to help my boy. I made many decisions that day but one of the most important ones was that I was going to start a blog about schizophrenia. I knew full well the stigma surrounding this illness and my plans were to change that somehow, hopefully through my writing.

Then came May 1st, 2013, the beginning of Mental Health Awareness Month and I decided that day, that month was going to be the month I would begin to speak out about schizophrenia. I was terrified. I didn't know what to say or how to start but I started. I started because the world needed something like this and I was determined to make this come to fruition.

I was met with a lot of negativity when I began my blog. People told me it couldn't be done, that no one would listen but I decided that if I could get just one person, maybe 20 people to listen then I would be happy. As the days turned into months, my blog slowly grew. I began to open up more, speaking the truth about my feelings of what it's like to be a caregiver for someone with schizophrenia and I began to tell Thomas's story (through my eyes) too. The response was overwhelming and it wasn't long before I had a following that thrilled me. It was just a few hundred people but each and every one of those people mattered. I loved every one of them for being here and was grateful for their presence. Their presence meant that people cared and that we all stood on common ground, we were making an effort to change the perception of schizophrenia.

Now, here I am today. May 1st, 2015. It's been two years since I started my mission and I now have 5,778 followers of my blog and the number grows every day. I am thrilled to death that my blog has become the success that it has and first and foremost I owe it all to all of you for being a part of it, for getting my work out there to the world, and to giving me confidence and strength to continue to do what I do every day.

Today is my two year anniversary and I couldn't be more happy or more proud of what my blog and I have become.

Thank you everyone for your support. You mean the world to me!

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