Wednesday, December 31, 2014

Is There Such A Thing As Being Too Much "Mom"?

I write this this morning after a terrible nightmare I had last night. It is fuzzy now but it centered around Thomas and I picking up some boxes in a strange area and I left him behind to carry his much heavier one so that I could get the truck opened. When he didn't show up behind me something told me he was gone, that he had been taken from me. I searched the area frantically, crying out for him, calling him and he was nowhere to be found. I woke up crying and felt as if I had lost my only son to some monster.

I don't know who took him. I don't know where he went but it did make me think about yesterday's therapy session.

Dr. K. set up a new project for Thomas as a way to manage his schizophrenia. I think I have talked about it before. They are two buckets, into one Thomas is supposed to put schizophrenic thoughts based on an acronym (A.I.D.) into the schizophrenic thoughts bucket and then thoughts he is unsure of he was to put those thoughts into the "unsure" bucket. I think as I said before that this project could be difficult for Thomas and I'm not sure what to make of it. My concern is that Thomas won't be able to identify schizophrenic thoughts because he doesn't know that they ARE schizophrenic thoughts. So many times he has innocently told me something he thinks or does and only after talking to him has he come to realize that the thoughts are part of his illness. So left to his own devices, will he recognize his schizophrenic thoughts and be able to put them into the right bucket?

Dr. K. hunted our town for the perfect buckets. I first have to say how sweet I think he was for doing that. He was thinking of Thomas and thinking of this way that he wants to help Thomas manage his illness and he went to 4 different stores in town to find the perfect size buckets. Then he brought them back to his office, labeled them and gave starter 3x5 cards with "The Thought" written on one side and "The Challenge" written on the other. He took his personal time and he did this for Thomas. I love the man for caring as much as he did to take his time away from work to create these buckets for Thomas so that he has something tangible to work with.

So, in therapy, Dr. K. and Thomas practiced, a little, coming up with schizophrenic thoughts and unsure thoughts and deciding what bucket they should go in. But here is the thing. Dr. K. told Thomas,

"when in doubt, who can you ask about this?"

All while leaning in his chair towards me with great emphasis, physically pointing my direction with his body to clue Thomas in as to who he should ask. Thomas smiled and said,

"My mom."

And of course I nodded and beamed from ear to ear. It was clear though that I am an integral part of this new plan of working with this process of sorting thoughts into buckets. Not only that but it's become clear how very close Thomas and I are especially because now when Dr. K. asks a question oftentimes lately Thomas and I turn to each other and look at each other to decide the answer to the question or to smile at each other when we have some knowledge that only he and I share. We appear to be partners, sometimes almost twins, as we exchange these moments with each other.

All of this makes me realize how very close we are. But are we TOO close? The thing is, Thomas is my only child. I have never abandoned him, I have walked his path with him his entire life, I have loved him sometimes all by myself when there was no father figure around to share that sentiment and no grandma or grandpa around to show him their love. We are partners, we are becoming fast friends lately and it makes me wonder, ARE WE TOO CLOSE? I don't want to be one of those mom's, the helicopter ones, the ones who are in their child's business far beyond what's appropriate. I don't think I am because, for example, I just learned something about Thomas and his girlfriend the other day that I never knew, that he had kept from me for forever. I think if I were over-involved I would have known that piece of information far sooner and I would have inserted myself in the situation, busy passing judgment and telling him how he should live his life. Apart from reminding him to shower or reminding him about his pills, I am actually not as involved in his personal life as one would think. What IS obvious though is that he relies on me heavily for comfort, for company and for counsel, especially when it comes to his illness.

So, I don't know. Am I too involved? Is the fact that Dr. K. points to me to be the one that normalizes Thomas's illness and that Thomas and I exchange these glances with secrets behind them, does that make me too involved?

I'd like to think that what he and I are is mom and son. Two people who have weathered many many storms together. Two people who have been together since the day he began as a seed in my belly. Two people who share a home, an illness, a chance for recovery and a hope for a future of independence for him. My dream about losing him, about someone taking him from me, is that indicative of a mom who's holding too tightly to something that really isn't hers to hold on to?

I don't know. That whole exchange in therapy got me thinking. I am wondering what the good doctor thinks about mine and Thomas's closeness. What I want it all to be is normal for the circumstances that life has laid out before us with Thomas having developed this illness in his youth. I'm not sure I could be any other way and I'm not sure that I want to. I have always felt that it's Thomas and I against the world and I feel that it will always be that way.

Tuesday, December 30, 2014

My Mom's Boyfriend

His reputation preceded him, he was known for being a not-so-nice person, for a long time I really wanted to hate him but in the end everything I thought I knew about him, I was wrong about.

You see, my mom has a boyfriend. He has been in her life for a few months now. As a daughter having just lost her daddy I was not ready for a new man to come into my mom's life. I had my own ideas about taking time to find a new relationship after an old one ended and this relationship had no chance in my mind. As time went on, though, I began to see that this man cared about my mom. He took care of her every need, cleaning gutters, taking her out for bike rides and having dinner with her to name a few. He breathed life into my mom after her having lost her husband in a terrible, sudden way. Her heart was broken, she was losing the fight to stay grounded in the here and now and she was lonely. For as much as I hated being in the house that her and my daddy shared I knew she must have hated it more having to live around every memory. The most haunting ones for both her and I were of my daddy's last 2 years where he had been sick with having just had a stroke, hydrocephalus, multiple sclerosis, heart problems and eventually a dementia that robbed him of his essence. That house was heavy with pain and grief and it was slowly robbing me of my mom.

Then, her boyfriend was there and slowly I began to find myself wanting to meet this man. He had known that I hated him in the beginning so he was reluctant to meet me but one day the moment came for us to meet.

On that day we all ended up at his house. My mom, my sister, me and Thomas. I felt that based on my preconceived notions that he would have a particular opinion about Thomas though I didn't really know what that was. I guess I figured he would see Thomas as a wounded animal because of his schizophrenia and would have nothing to do with him. Once again, I was wrong.

This man that I wanted to hate so much turned out to be a nice man. He was strong both physically and emotionally. He was a great conversationalist, sharing his life with all of us with confidence. Then my mom told him to take Thomas to see all of his cars and the two of them, Thomas and my mom's boyfriend, headed off to one of many garages. I followed because I felt certain that I needed to protect Thomas but what I witnessed took my breath away.

What I saw transpire before my eyes was a man talking to my boy as if he were his son. He walked him around the cars explaining each one and asking Thomas what he thought of them. Thomas was in awe of this man's car collection and he did little to hide it. The more time they spent together the more I could see that this man cared about Thomas and wanted to open his world up to a life of hot rod cars.

Then the gears shifted and my mom's boyfriend took us on a tour of his man cave (a wonderful room built to look like a mountain cabin inside). He took us to see his architecture work too. Both of these things Thomas loved and I could see by my mom's boyfriend's reaction that he was pleased that Thomas took to these parts of his life with such enthusiasm. What I saw, what I hadn't expected to see, was a man stepping, oh so carefully, into a grandfatherly/fatherly role. After having seen Thomas so excited he made him an offer.

As we exited the last garage he asked Thomas if he would like to go for a ride in one of his cars someday. Thomas lit up and immediately said yes and my mom's boyfriend asked him which one he would choose. All I can say is that it was a Ford Mustang that he chose though this Mustang was a very limited edition one that I know nothing about so I can't talk about it here. To look at Thomas you would have thought that he'd won the lottery. Here was this man, this father/grandfather, who obviously cared about him and wanted to share his life with him. Thomas stepped outside the garage into the sunlight and told me he couldn't wait to go for a ride.

The thing is, and this was my hang up, I really thought that this man would treat Thomas differently because he had schizophrenia. I thought that he wouldn't have time for Thomas and I thought that he'd avoid him at all costs. In the end, though, this man planted seeds of hope in Thomas and even in me too. I knew this man was going to become a big part of my mom's life and as such, since Thomas is a big part of her life, I knew that we would be crossing paths with this man many times in the future.

The truth of the matter is, I was wrong. I'll admit it. I didn't like the man before I even met him and ultimately it was on me to open my life to him and allow him to become a part of the family in his own way.

In this case, I couldn't have been happier to be wrong. This man had given me the only thing I really wanted and that was a chance for Thomas to be a part of his life even though he has schizophrenia. He could have turned away, he could have refused our visit, he could have ignored Thomas but he didn't. He embraced my boy wholeheartedly and for that I will be forever grateful.

Monday, December 29, 2014

So, What Do We Do Now?

Guilt. Resignation. Fear. Mental Immobility.

Chances are you have felt one or all of these things at some point in the caring for of your loved one with schizophrenia. Your loved one is violent or refusing to take meds or living on their own and not taking care of themselves or they are not communicating with you. These circumstances are often lived by those of you caring for someone with schizophrenia. Do you feel like there is something wrong with you that you feel these things? If so, I am here to tell you that you are fine, that you are human and that this way of life is not easy.

Now, I know that those of you with schizophrenia have insurmountable issues to deal with. I know that you struggle. I have watched Thomas in his most difficult moments fight to just get through a day and I have seen how it tears him down emotionally and even, on some level, physically. I know that you struggle and from the place that I am now, I have reserves to offer help to Thomas and others like you. What happens, though, when things get difficult, when day after day this illness invades your life, it invades ours too. The reality is, it is just as hard for us but of course in different ways. I say this so you understand that we do our best to understand your experience but what I write today is about our experience. I don't want to hurt any feelings but the reality of this illness is that EVERYONE is affected in one form or another.

So, for you caregivers out there, what do you do with these feelings? How do you cope with the guilt of not being more involved, not giving just one more piece of yourself and not feeling like you can make this all better? All of our experiences are different and yet all the same too but in the middle of it all we feel alone, like no one will ever understand and we beat ourselves up because we feel like failures of the worst kind--especially those of us with children with schizophrenia. I'll be the first to admit that I don't have the answers to how to deal with this, not real ones anyway, not ones that a psychologist or counselor could offer but if you're like me when I'm struggling as a caregiver, I don't feel like even a psychologist with their vast clinical experience can truly understand what I'm going through. Believe me, I have tried therapy and in the end what it boiled down to was that tracking my moods or doing some kind of worksheet were not helpful things for me. In the end, what I needed most was someone to just listen, someone to just let me cry, someone to offer me an entire box of Kleenex and an empty trash can to hold them all when I am done with them.

Often, in the midst of mental immobility, I have asked myself, "what do I do now?" "Where do I go?" "Who can I talk to to help my loved one find their way to better care?" "Who can I talk to to help ME?" This place is one of the worst kinds of prisons because you feel stuck and unable to make decisions, sometimes for your loved one and sometimes just to figure out what to cook for dinner. You are not alone in this. I promise you that and I want you to know that what you are facing right now feels crippling but you MUST try to get through today and do the best that you can with the resources that are in your grasp.

Resignation is another feeling that we feel. When we have tried to reason with our loved one, when pleading has failed, when all out arguing has brought you and your loved one to your knees, that is when resignation sets in and you want to throw your hands in the air and often you do. I can't tell you how many times I have, with Thomas, tried so hard to get him help, to show him that what he's doing is self-destructive and to ultimately just throw my hands in the air and walk away. We have all been there and we will be there again someday and walking away, throwing your hands in the air in frustration and RESIGNATION will all be things that all of us will do. If you are there now, you are not alone.

Then there is guilt, the destroyer of souls, the heavy black anvil that occupies our abdomen. What do we do after we've given in and walked away? Right then and there the guilt sets in. If you are the parent of a loved one with schizophrenia the guilt is even stronger. After all, aren't we, as parents, supposed to provide everything for our child? Aren't we supposed to give them comfort? Aren't we supposed to SAVE THEM? The truth of the matter is, especially when our loved one refuses our help, refuses to listen, refuses to make changes, it is then that our ability to offer help evaporates. After that the guilt settles in and it eats us alive. What you need to understand about guilt is that we all feel it, we have all been there and none of us have the magic formula for alleviating ourselves of that feeling. It, too, is a prison and it is one that I hope you can free yourself of, especially when you have exhausted all avenues and you're left empty handed and standing alone. The feeling of guilt is toxic and it will eat you alive but you must find your way around it, you must dig that heavy black anvil out of your gut and you must find a life for yourself where you begin to take care of yourself again.

I have no advice today unfortunately. I don't even think it's my place to offer "tips on how to cope". What I do have to offer to you is the fact that I have been there and I know exactly what you are feeling. I write this blog because I don't want others to feel alone. I want to show you all that I, too, have been where you are. All of these things have consumed me but somehow I have found my way through and past them to a better place. Perhaps I just became strong somehow and found my resolve. Perhaps something in Thomas shifted just enough that I could find my way inside to help him. Perhaps I just found others like me out there that could say to me "me too" and that helped me to take a deep breath and accept the circumstances I was in with Thomas.

What I have for you, today, is love. What I have are virtual hugs. What I have are prayers for you. What I have to offer is my complete understanding of what you are going through.

You are not alone.

Try, today, to pick yourself up, dust yourself off, and take some time for yourself. Go out for a walk. Take a hot bath. Read a good book. Binge watch your favorite show on Netflix. Just take some time for yourself.

Most importantly, forgive yourself. You are human. You have given what you have to offer. It may not feel like enough but it is.

It is.

Saturday, December 27, 2014

Is RECOVERY From Schizophrenia Really Possible?

I have been giving "recovery" a lot of thought lately. I read about and hear about people talk about how they "recovered" from schizophrenia and I want to scream because I just don't see how that's truly possible. The definition of recovery is:

"A return to a normal state of health, strength or mind."

That definition begs the question, do we ever "return to normal"?

Certainly, lately, Thomas has been doing better than he has in the past. He holds down a job, he participates in the family, he writes a blog and he stays on his meds. Based on those things, one might say he has reached "recovery" but I would argue that. Has he really "recovered"--returned to a NORMAL state of mind--or is he just doing better for now? Going even further, I would argue that he still fights many demons even though he's holding down a job etc.

His schizophrenia is still alive and well working it's "magic" in his mind. Sure he gave up believing, for the most part, that the government is watching him, as he says in his most recent blog post, though I have had many talks with him where he's told me he still feels watched. Sure, he doesn't believe he is a world leader that will lead thousands of people into a revolution in an effort to change the government. However, he still believes there is something evil inside of him, he wears a talisman to ward it off, and he still feels terrified in a crowd of people so much so that he can't stay at work on the days that it's busy. Is all of that "recovery"?

I don't mean to be a pessimist here but I just don't believe recovery is possible. While I am THRILLED that he is doing better, I still see remnants of this illness in him. I guess, then, you start to put "recovery" on a continuum. Your son doesn't take his meds. He is hospitalized and actively hallucinating. He sees you as his enemy, he (sometimes in some cases) drinks or does drugs in an attempt to self-medicate his illness. He may even be living on the streets. Certainly he is not "recovered" and certainly he has a long way to go to reach the place that Thomas now occupies. So, on this continuum where "normal state of mind" is on the right side and "unrecovered" is on the left, Thomas falls further to the right than many others. His position there is tenuous, at best, though. Just the other day in therapy he talked about the possibility of lashing out physically on someone who upsets him. He argued that while he worries that he might hurt someone's feelings by standing up for himself, he still feels in danger of hurting someone. That, to me, is not "recovery" in the sense that he is residing in a "normal state of mind".

Then I zero in on the word "normal". I put it in quotes because what exactly is "normal"? Who decides what is normal and what isn't? Certainly the dictionary, a book full of the "right" definitions of things and people and states of being etc., shouldn't be the one that defines normal. Certainly the woman who writes an article stating, that from her point of view, she is recovered, doesn't decide for ALL OF US that her definition of "recovery" and feeling "normal" is the holy grail of what we strive for. Certainly the doctor who only visits with our loved ones for a short period of time once a week or every now and then can't really say for sure that someone is "recovered" or "normal" because they aren't there all the time like the rest of us with our loved ones watching the waxing and waning of this illness that can change in as quick as one hour to the next. So who gets to decide?

Does Thomas?

By some people's definition, he is "recovered". As I said he holds down a job, etc. but if you ask him if he feels normal, he just stated it in one of his blog posts that he does not feel normal and I would venture a guess that if I asked him if he has "recovered" from schizophrenia he would say that he hasn't. He's smart enough to know that he has this illness for the rest of his life. Even the government (Social Security) just stamped his file "disabled" and is funding the rest of his life because based on the nature of his illness, they believe he will never be able to hold down a full time job, which he won't. Is THAT "normal"?

I don't know. I guess I just don't see it. Am I a pessimist mired down in this illness or am I a realist, one who has lived with this illness in her son for the better part of the last few years and has seen marginal changes and certainly changes that didn't stay changed to a steady state of "recovered"? I suppose it's all open to interpretation. Many of you wish desperately that your loved one will be like Thomas someday but there are many of you also in the same place I am that would argue my point for me.

The continuum is a slippery line where our loved ones slide left or right due to life circumstances, medication changes, happenstance (given the right circumstances a delusion can pop up out of seemingly innocent events), stress levels, socioeconomic status, depression, loneliness and any number of other things. At best our loved ones live balancing steadily near the right side of the "normal" or "recovered" side of the continuum but we all know how fragile that can be.

I believe that "recovery" is next to impossible but my seemingly pessimistic attitude is not really pessimistic because I see Thomas doing well, I celebrate it, I DO NOT TAKE IT FOR GRANTED, and I feel some semblance of relief when he wakes in the morning and comes to me and tells me he slept well. Thomas is in a good place, no doubt about it, but good can become not-so-good later today. You just never know.

Friday, December 26, 2014

Friday's With Tom--My Meds


Hey everyone, Tom here and welcome to my blog.

Today I'll be talking about my meds and how they hurt/help.

First off, I don't mind taking my meds.

Second, my meds help me a lot for my anxiety. I used to have a lot of anxiety before I left for work but now with my Buspar (Buspirone)I don't have much anxiety before work.

My meds also work with my paranoia about the government. I hardly ever think that the government is watching me because of my political affiliation. However, my meds make me extremely sleepy when I'm not moving at a constant rate (i.e. walking).

I also never thought about stopping my meds because I know that my meds are what is keeping me sane. I guess that is also what motivates me to stay on my meds is because I know that they keep me sane.

Well that's it for today's blog, hope you guys had a great Christmas and I'll talk to you later, stay beautiful.

A Christmas Story

I wanted to share a couple of pictures of Thomas with you from yesterday (Christmas Day). He was all smiles as he opened his gifts. As you can see, he got 3 Gundam models which are his favorite thing.
If I haven't already explained Gundam's, they come from a Japanese Anime series and they are these plastic models with the instructions written all in Japanese and somehow Thomas is able to put the models together. They are his saving grace also because he says they help him deal with his schizophrenia by keeping his mind occupied and away from his symptoms. I figure he has enough now to keep him occupied for well over a week.

The other picture I put in here is a funny photo to make you laugh as I think he was so cute putting on the goggles and posing for the picture.
The goggles are to wear when he is playing in Airsoft BB gun wars. He says they were his favorite gift. Also pictured is a bag for carrying his gun out in public which thrills me no end because I didn't like that he left the house with that gun for all the world to see and possibly get him in trouble for having. He is now decked out from head to toe for Airsoft wars and as his mom I am now happy he is protected physically from the BB's themselves.

He worked Christmas Eve and unfortunately it didn't go well. He started work at 5 and by 6:50pm I got a text from him asking to come home because he didn't feel well. I thought at first it was the Mexican food we had for lunch but when he got in the car and I questioned him about the nausea, it turned out that it was caused by an extremely high level of anxiety. He said that "groups of people around him" were making him scared and he just couldn't be there anymore. I felt terrible for him.

I did ask him if he had been worried that someone in the crowd was going to hurt him, an old theme of his when he's been sick in the past, and he said no and that he didn't know why they bothered him. While it's sad that he was worried about the crowds I am pleased that he wasn't attributing it to some delusion like that there were government agents in the crowd trying to kill him. That is how it's been in the past.

Recovery from the anxiety took a long time even after he was home safe in his room so I don't like that it stuck with him so long. He did end up taking a lorazepam for it and within 45 minutes of taking it was back to his old self. I am thankful that he doesn't work today with all of the crowds coming in for the after Christmas sales. I don't think he could handle that.

Now, I know today is Friday's With Tom and I happen to know that he hasn't written anything yet. He will want to once he wakes up so it'll be into the afternoon before he posts something. He already has a picture from yesterday picked out to go with it. So, be sure to be looking out for his post later today. I wait, just as you do, to read what he writes.

I hope you all had a good day yesterday as much as was possible. We spent the morning at our house with my mom watching Thomas open presents and we ate our traditional quiche and donuts with coffee and then later went over to my mom's for prime rib dinner and hanging out. This was our family's first Christmas without my dad so it had some rough moments but all in all it went well.

It won't be long until the new year begins! I look forward to what it brings.

Wednesday, December 24, 2014

He Killed My (Our?) Christmas Buzz

Yesterday was therapy for Thomas. It's been a little while because the office has been under construction but we finally made it in and it really turned into a real bummer.

It began with Dr. K. asking Thomas how he's doing. Has he been paranoid? (No) Has he had any anxiety? (No) Has he gotten really angry and had the urge to harm? (No) Has he had that feeling of being evil inside? (No). Then he turned to me and said to Thomas, "I want to get mom's opinion on how things have been."

The thing was, I could tell he wasn't in the best of moods. He seemed to me to have been a little irritated with the office staff and he just looked like he'd had a rough day. He was just rough around the edges a little bit. So when he turned to me to ask me how Thomas was and my answer was, "He's been doing really good", I sensed annoyance. Now if my track record stays what it's always been with people, I can usually pick up on people's moods but more often than not people tell me they are just fine when I call them out on it. Is this a flaw of mine or are they just not wanting to acknowledge their mood? I imagine if Dr. K. were reading this he'd say he was perfectly fine. Still, though, I picked up on something and my answering that Thomas had been fine seemed to me to kind of annoy him. All of the usual detective work about Thomas's well-being yielded nothing but positive results. It was a good day. It has been a good few days.

Then Dr. K. took out his digging tool and started to question Thomas about if he had been sorting schizophrenic thoughts into the schizophrenic bucket and Thomas said he forgot to and/or that he hadn't had any of those thoughts. Dr. K. quizzed him on the acronyms that he had created for Thomas to use to judge his well-being and Thomas, with everything really that was asked of him, replied that he forgot. He was in a great mood but his memory was shot. Perhaps he picked up on the same thing I did with Dr. K. and he felt a bit of pressure to answer and when Thomas is under pressure, he is pretty much useless.

Then Dr. K. got into Thomas's anger. He felt that Thomas's anger correlated with his feeling of being evil which I think he is exactly right about but he pushed Thomas to talk about his anger and the mounting pressure I felt as he dug at that aspect of Thomas's personality became somewhat oppressive. At one point he came to asking Thomas what he would do if he got angry and Thomas said that he felt like expressing that would hurt someone.

Hurt someone?

How?

When questioned, he said he was worried that he would hurt someone's feelings by expressing it and that he would hurt someone physically. Dr. K. and I didn't miss a beat and we shot each other a look, something akin to a concern about Thomas's response. It seems to keep coming up that Thomas feels he will hurt someone physically if he's angry. Dr. K. took stock of Thomas's history of physical confrontation and of course Thomas has never lashed out physically at another human being. Never once. Still, though, it was a little scary to hear. I think it's because it feels a bit like walking on a minefield. You never quite know where to step that is going to set off an explosion that causes serious damage to the traveler across the minefield.

In the end, though, we accomplished very little other than to remind ourselves that Thomas still has these issues and they need to be addressed. What got me, though, was that all I really wanted to talk about was how Thomas has been doing so well the last few days. He's happy, he's loving and caring to the animals, he's helpful around the house, he's content being in the living room with me and staring at the lighted Christmas tree and he's loving holiday movies on TV. My kid is in the Christmas spirit!! Apparently the BEST THERAPY EVER!

So, we walked out of therapy in silence and I felt a weight on my chest. I feel like therapy, like Dr. K., had killed mine and Thomas's Christmas buzz. Digging into the difficult stuff and throwing the dirt on the Christmas spirit Thomas and I felt was really a bummer.

We got in the car and Thomas immediately turned the radio station to the "all Christmas music, all the time", station and I asked Thomas how he was doing after the session. He had faired better than me. His buzz was still intact for the most part but mine was in need of repair. That's the thing about therapy. A lot of times it has the knack of taking a perfectly good day and turning it into a bummer of a day. Many a time I have, myself, walked into my own therapy and been in a good mood, full of good things to talk about, and somehow it ended with me crying, my nose running, and a weight on my chest I couldn't lift off to save my life.

It is Christmas Eve today, though, and I know Thomas is going to wake in a good mood. He does work tonight but he doesn't seem fazed by that and I know that the only thing on his mind is getting to open his one Christmas Eve present. He's got 5 sitting under the tree so I wonder which one he'll choose. All I care about, though, is that he wakes happy, content and excited about today and tomorrow. I want him to keep that beautiful Christmas spirit of his. It's been wonderful having him doing so well. I never want it to end.

Is it possible to keep the Christmas tree up year round? It's certainly been better than any medication I've ever watched go into Thomas's body.

Tuesday, December 23, 2014

For The Struggling Caregivers

Today I write for the caregivers of someone with schizophrenia who are struggling while they watch their loved ones battle with this illness and some with co-occurring drug and alcohol addictions.

I do not pretend to know what all of these caregivers are going through except enough to put myself in their positions and try to imagine what it would be like if Thomas struggled with a lot of these issues. This illness is so difficult just dealing with the illness alone but when you add in other complicating factors the illness becomes nothing short of a nightmare. All of these caregivers, though, that are struggling as the ones they love struggle are, as always, fighting for their loved ones and many are communicating with others in order to better understand what their loved ones are going through. It is those people that I think are on the right track even though they feel such anguish about their loved one with schizophrenia. For the caregivers out there that are fighting this alone, who feel alone, who feel like no one else could possibly understand their pain and that of their loved ones, I want to say to you that, in fact, you are not alone. Certainly this illness manifests differently in people but the running theme is the same. There are complicated delusions, cruel hallucinations, the belief that the one caring for them is the enemy and so much more. There are many caregivers who have, this holiday season, had to see their loved one hospitalized, some going voluntarily, some not. They cry tears of desperation as they realize that their loved ones won't be with them this holiday season but they also know that their loved ones are in the best place they can be for the time being, getting stabilized on meds and are being protected from themselves and the world outside the walls of the hospital.

I have been in the place of these caregivers with loved ones in the hospital and I know what they're going through. The times that Thomas was hospitalized were some of the worst of my life because while Thomas was hospitalized and getting proper care, he was angry, sullen, drugged, anxious, scared, hallucinating and often hating me with a passion. I have sat outside of the doors of the hospital crying after having visited Thomas or have found myself in my car in the parking lot with the music turned up so loud I've almost blown out the speakers crying anguished tears that wracked my body as I searched the sky outside my windshield and asked God, "Why? Why? Why?" I know what these caregivers with loved ones in the hospital are going through and my love, thoughts and prayers are with you.

To the caregivers dealing with their loved ones with a co-occurring issue like drugs and alcohol, my heart goes out to you the most. You are fighting a demon that is out of your control, one that sucks your loved one in and convinces them that what they are doing is right and is helpful somehow. As a way to offer my understanding and support, I know that for me, a couple of years ago when my bipolar was out of control, I was drinking pretty heavily to manage the pain of the illness, the mania, the mixed episodes and the stress that it all caused me. Every night I found myself in my kitchen, shot glass in hand, convincing myself that I would just feel better if I could drink myself into unconsciousness. The truth of the matter was, it only compounded my problems and in the end I ended up sicker than I would have been had I not started drinking. But alcohol convinced me it was my cure-all and I let it take over my life. In the end, by the grace of God, it was Thomas who got through to me. When he would find me drunk and on the verge of passing out he would look at me with THOSE EYES and I could see the worry and fear in them. Only after slowing down a little, he confided in me that he feared I would die and then and only then did I make the choice to stop drinking.

I tell you that story because I want you to try to find some hope in it. It is my hope for you that your loved one sees the pain you are going through as you walk beside them through their addictions and they come to see what their addictions are doing to the people around them. I realize that their addiction is fueled by a very formidable illness but my bipolar ruled my life at the point that I was drinking and I did eventually see what I was doing to my loved ones with my drinking. My hope is that for those of you with loved ones with schizophrenia who have a co-occurring addiction, that they will accept help, accept your love and desire to help them get past their problem and eventually see their way past what is tearing them down right now.

I write today for the caregivers who are struggling right now with any number of issues that their loved ones with schizophrenia are fighting. I know that life is not easy right now, I know the pain is especially difficult during the holiday season, a time when we are supposed to have hope. If I could choose a gift to give to all of you at this time, I would pull from under my Christmas tree an exquisitely wrapped gift with a sparkling bow where inside sits hope, strength, resolve, promise that things will get better, love and compassion and for those of you with a faith in a higher power, I would put inside unending prayers for you and your loved one for better health and a happier life.

I am here and I am paying attention. I see your struggles and my heart goes out to you right now. If I can impart anything to you right now, it is the understanding that you are not alone. Reach out to those you love and trust who can offer something to you at this time, even if it's just a hug and a shoulder to cry on. Reach out to support groups (I have a couple affiliated with this page and if you'd like to join them, please send me a private message to this page using the message button at the top right of the page and I will see about getting you into one that suits your needs). Just don't do this alone because you are not alone. There is always someone who cares and can offer support and understanding.

Please, take care of yourselves.

Monday, December 22, 2014

Learning To Speak "Dog"




Everyone, meet Cookie! She is our family dog however lately she has become Thomas's dog the most. A beautiful thing has been happening and I have had more fun being around Thomas and Cookie during this time.

For so long, Thomas has kind of lived alongside Cookie. He'd pet her every now and then but he wouldn't do much else. Then in the last week or so, the two of them have become inseparable.

It began with a "hey Cooks" ever now and then to then Cookie sitting in front of Thomas and just staring at him. Her doing this always prompts all of us to ask her what she's asking from us. My husband and I usually fill in what we think she wants and she seems satisfied by that but Thomas has not learned how to speak "dog". I have taken to helping him interpret her signals and he has loved it. The other day Cookie sat in front of him just staring at him and kind of acting like she was going to jump on the couch beside him but Thomas just kept asking,

"What Cooks, what do you want?"

Over and over. Finally I broke in and I told him that she wants to snuggle up with him and that he needed to invite her up on the couch with him. When he did he was greeted with her standing on his chest and trying to give him kisses. We all try to avoid "dog lick" so he kind of joked with her about it saying "no thank you, I don't want kisses" but she kept up. The usual path, and the one she took that day, is to kind of leap at your face and just touch it with her nose. The feeling when she does that is that she is going to bite you but instead she is just trying to be close. It makes all of us laugh.

After that she collapsed on him and rolled around on him rubbing up against him and snuggling. I could tell he didn't quite know what to do and I told him to just love her back. I could see the joy in his face as he allowed himself to let loose and really love her. All of this strengthened their relationship even further.

Since then, they have had many conversations together. The most recent was when we went to get McDonald's and Thomas asked me to hand him a French fry to eat. Then from the back seat I heard:

"No Cookie, no. This is MY French fry. Mom gave it to me. I know you really want one but you can't have one because they aren't good for you."

It seems that the two of them have become fast friends. She follows him around the house, she asks him for walks and she loves it when he gets her leash and they head out into the neighborhood together. It is like Thomas has the little sister he never got because he has now incorporated her into his life every moment of the day in one way or another.

Thomas LOVES Cookie.

A young man and his dog.

Then best of all are the mornings when it's just Cookie and I awake. Together we wait for Thomas to wake up and lately Thomas has been getting up later and later. In response to this I have found Cookie, several times, curled up outside of his bedroom door just waiting for him to get up. I can't get her to budge from her spot. I'll talk to her down the hallway and she'll look up and acknowledge me for a few seconds and then she'll sigh and lay her head back down, a ball of black, furry love outside of the room her new best friend sleeps in. Like me, I think she worries a little when Thomas isn't up at his usual time and in her most amazing way, in the unconditional way that dogs love us, she waits for him to wake up and give her loves.

I love this new relationship. I love that Thomas now talks to her like she is a member of the family and I love the bond that has formed between the two of them. I love dogs. I especially love Cookie. She is expressive, loving and loyal and now she looks to Thomas for comfort and conversation. He's learning to speak "dog" and because of that, he has a friend in her for life.

Saturday, December 20, 2014

My Son, YOU ARE MY LIFE

I didn't mention it in my post to you that I wrote prior to Thomas's post yesterday because I wanted you guys to see in Thomas's post what YOU saw in it. As his mom, however, I saw something that broke my heart. We had had conversations about similar things before but after his post I felt he needed reminded of something. One of the things that I took away from his post is that he feels that he is a burden to me. That couldn't be further from the truth and so I had to have a talk with him about that.

I sat down with him yesterday and I told him that I took from his post that he felt he is a burden to me. I asked him if I had read that correctly. His answer?

"Yes, sometimes I do."

Nooooo! Oh my gosh, how could he? I felt horrible that I might have ever left him with the impression that driving him to his appointments and to work were a burden to me. I felt horrible that he thought that his being a part of my life brought about any sense of burden on my part. So, I talked to him and told him this:

"Kiddo, you are my everything. You are my child, my young man. You are a piece of me outside of myself. You are NEVER a burden to me. I love driving you to therapy and to work. I love our quality time in the car going those places. I love that we listen to music together and talk about how your evening at work went. I love being able to get you to your appointments so that you can get the help you need. I love going to stores and walking around together and looking at things, especially Christmas stuff. I love sitting and watching shows with you. I love it when you bring your tablet out into the living room and even though you're plugged into it and we don't talk, I love that you're out here with me. I love your company. I love that today you brought out, into the living room, your newest Gundam model to build and that I get to be there every step of the way as you complete each piece of it and show it to me. I love seeing you work so hard at it and I am so proud of you that you are able to build those things even though the instruction booklet is all in Japanese. I love going out to lunch with you and Grandma like we did today and I love sitting beside you as we talk about your girlfriend Jess and imagine what it would be like to go visit her. I love every moment with you and I wouldn't trade it for anything."

I watched as he lit up as I talked and I knew that I was helping him feel better. It was so important to me that he didn't feel as if he is a burden to me because I didn't want him going through his life thinking that and not talking to me about it. So, I asked him,

"Do you believe what I am saying? Right now, at your very core, do you understand how much I love you and that you aren't a burden to me?"

He replied,

"Yes, I can see now that I'm not but probably later today I'll forget that and start feeling like that again."

To which I asked him,

"Do you want me to remind you from time to time that you aren't a burden and tell you how much I love being with you?"

Yes, he did. Very much.

So, right then and there I promised him and committed to myself to make sure he understood all the time how much I love him and how much I don't mind doing things for him like driving him to work.

His post broke my heart in many ways and him feeling "abnormal" and a burden to me was just something I couldn't live with. We talked a lot about what "normal" means and ultimately that nobody is normal and that the people who seem normal just hide their abnormality well. Everyone is afraid of feeling like an outcast but the truth of the matter is, in our own ways, we all belong together in one way or another. Normal is overrated and frankly, I personally am quite fine not feeling normal because I am unique and I am valuable to the world in my own way and it is important that he feels the same way.

In the end, the only message I needed to get across to him is that HE IS MY LIFE and I am honored to share this life we live together with him.

Friday, December 19, 2014

Friday's With Tom--What It Means To Me To Have Schizophrenia



Hey guys, Tom here and as usual, welcome to my blog. Today's topic goes all the way back to when I was first diagnosed with schizophrenia.

 
What it means to me to have schizophrenia.

 
Well it means a lot of things to me. For one, I'm not what the modern definition means of normal (then again, none of us are really normal). I guess that's the biggest thing to me is that I'm not normal but I've embraced that since I was in junior high, back around the time while we're trying to discover who we are.

 
Looking at my future my biggest thing is that I will probably have children who won't be normal either, I'll probably be in my mother's shoes, driving my child to therapy, trying to reassure him that being different is ok (though with how things are going with the generation beneath me, people being abnormal might be a good thing. I'm talking to you dubstep generation). I guess that's the biggest thing to me. My kids not being what I originally thought they would be, normal. I'm slowly starting to understand and embrace that no matter how hard I think about it, my children won't be normal. Now I'm not saying that being abnormal is a bad thing, I just didn't want to go through the same trouble that my mother has, but I have to accept that.

 
Well, that's enough for today, I'm Tom, and you all stay beautiful.


My Feelings As A Mom (A Few Thoughts On Today's "Friday's With Tom")

I sit here having just put Thomas's submission for his blog post today on my computer and I am shedding tears of....sadness...awe about my son and the awareness he has about his life...grief that he has this illness...love for that wonderful, gentle, AMAZING soul that he has. What he has written, in my opinion, is beautiful and if I know you guys like I think I do, I think you will find it touching also. With this post I can already read inside my head your responses to his post and I want to thank you in advance for your wonderful support.

I began and continued this blog always writing from my heart and with honesty. I have been told numerous times to NEVER do it any other way than that and my response has always been that I can only be who I am and that is open and honest and forthright. I don't want to hide from anyone the things that Thomas and I go through because I know that you all go through the same or similar things. None of us are alone in this boat--even if it feels like it sometimes.

What I have been blessed with recently, however, is my son by my side on this blog whose writing style is just like mine. I never instructed him how to write. I never told him to do one thing or another. Each post of his comes from his heart just like mine come from mine and I think that Thomas is simply beautiful for opening himself up like he does and writing so candidly.

So, today at 9 a.m. PST I post Thomas's contribution for today and I do it with pride for his strength, his candidness and his heart. I learned from him today by reading his post some things that I didn't know he felt so my getting to know my son happens just as you get to do the same.

Thank you all for your support of me and most importantly of Thomas. You have given him a safe place to express himself and because of that he is giving you nothing less than everything he has inside of him.

Thursday, December 18, 2014

A Beautiful Holiday Moment

Something happened the other day that I wanted to share because it touched my heart. I am lucky, I know, because Thomas is very sweet and often very naïve about things so sometimes it's like I have a young child living with me. When he sits down to watch TV, it's usually cartoons and certain conversations between he and I will have the feel of a mom talking to her young son. It is that young boy that I write a little about today.

I took Thomas with me to pick up prescriptions and we had a wonderful time in the store waiting for the prescriptions to be filled. All Thomas wanted to do was go to the Christmas section and look at everything. He has this child-like attachment to Christmas, one that I am often envious of because I let too much of life get in the way of enjoying the season. We wandered the ornaments section and I let him pick out any ornament he wanted for our tree (that hadn't even been put up yet--I'm late doing that because I'm having a hard time celebrating Christmas without my dad this year). His choice was a glass replica of a video game controller.

Now, bear in mind, through the years I have abandoned putting what I call "legacy ornaments" on the tree because I want the tree to be clean with just metallic (silver, gold, bronze, copper) ornaments on it. After years of trees filled with a hodge podge of ornaments I wanted something more classic. That went by the wayside last year when Thomas found in a box his electronic Star Wars ornament that makes some sort of horrible screeching noise when turned on. So this year, knowing full well that Star Wars ornament was going to be on the tree and because Thomas has been struggling and because he LOVES Christmas SO MUCH, I let him go ahead and buy the video game controller ornament. Somehow my "classic" tree is turning back into a hodge podge and somehow, now, because of my sweet boy, I don't mind.

We went up and paid for the ornaments we each had picked out and after paying I kept a couple of dollars out of my wallet. As we had come in the store earlier, the Salvation Army had one of their bell-ringer volunteers outside the store waiting for donations. I always like to try to leave something for them. As Thomas and I headed towards the exit, I handed him the money and I told him to put it in the bucket. He was SO HAPPY! Ah, I love that kid of mine.

We walked out and Thomas stopped at the bucket and separated each bill out to be dropped in the bucket one at a time. One might think, because my own mind can go there, that Thomas was making a big production of making sure the bell-ringer knew just how much he donated but instead Thomas just wanted to relish the moment of giving something to charity. It truly gives him joy to do that.

Then it happened.

As we walked across the parking lot Thomas said something about being happy that he had done that and then he said--with a faraway look in his eyes,

"I hope Santa saw me do that."

My heart, oh my heart, loved that boy so much in that moment. Here he is 20 years old and I could see by the look in his eyes and hear in the tone of his voice that at least some small part of him still believes in Santa and feels that he's watching him do good deeds. It was just a fleeting moment and I'll admit I had to respond (I know I'll have critics about this),

"Yes, Thomas, I do think he saw you do that and I know he cares about what a wonderful soul you are."

Perhaps in that moment a delusion was in play. Perhaps him believing for that moment that Santa was watching him was compliments of this wretched illness but in the scheme of things, when all of his monsters are government agents of one sort or another, I felt Santa was a harmless belief for him to hold and it was one I just couldn't crush with harsh reality. You couldn't have paid me to handle it any other way.

So, there it was, a priceless, beautiful moment during this holiday season. Thomas gave the money because he wants to contribute to charity but, to him, in the few moments afterwards when he let his mind wander, he was a young man who was now on Santa's "nice list".

Wednesday, December 17, 2014

Left Behind

While Thomas is still doing well mood-wise, he had a bit of a rough day yesterday. He's not showering again so he looked pretty scruffy and he had a huge need to be with me.

The showering thing still makes me sad in so many ways. I still don't understand it and I'm not sure I ever will. He says he doesn't take them because he itches afterwards but I watch him when he does shower and he's not itching every time. He has abandoned the use of soap altogether, he shaves with just water but I'm pretty certain he uses his shampoo. I don't get it. I just wish he could see himself through my eyes. I want to give him room to be an adult, to care about what he looks like and to understand how he looks to the outside world but none of those things seem to be happening. When he does shower it seems that he's doing it on a day that he works which shows that he understands to some degree that he needs to take care of himself but then during a week like this where he doesn't work at all, he lets himself go. I have given up having "the talk" with him about it as he has told me many times he has a "schedule" that he follows for showering which is supposedly every 4th day but this week that's not happening. I hate that we can gain ground with this illness--like how his mood is changing for the better--yet we can't seem to get rid of other aspects of it. I am not taking the mood lift for granted at all but I wish other symptoms like showering resolved themselves along with that.

Then yesterday he was desperate to be with me constantly. My mom and I were going to do some shopping and he asked if he could go with us. The truth is, first and foremost, part of the shopping had to do with buying him something for Christmas. Our big box store Costco sells Coca-Cola in glass bottles made with real sugar and they come from Mexico and Thomas just loves them. Every year, "Santa" brings them for him and every year he sees it under the tree and says,

"Gee, I wonder what these are?"

with a twinkle in his eyes. I don't even know why I bother to wrap them anymore except for the fact that I think he likes having it to open on Christmas morning.

Because I was shopping for that Coke, I couldn't take him with us and I felt so horrible and told him that his grandma and I needed some time together to talk about some things going on with her. His response?

"Oh."

With the world's saddest expression on his face and what I'm sure was a huge sense of rejection. I felt just HORRIBLE but I also wanted to get this gift for him.

The thing I used to also justify part of my leaving him was that he needs to know that he has to be on his own once in a while. I'm here with him so much and I need a break away from him so that I'm not living my entire life for him. I still felt crazy guilty leaving him but I had to go alone to prove that point to him.

Once home, I was doing things around the house and he came out and sat in the living room with me. He just had to be close.

When this happens, I always attribute it to some "disturbance in the force" as I call it. I don't know what goes on inside of him that he needs me so close to him all of a sudden. I have never gotten an answer to that when I've asked him other than him saying that he "just gets bored in his room." Perhaps that's all it is, too, but still...it feels like something is off with him.

So, yesterday was kind of an off day for him. For whatever reason he just wasn't the kid I have seen for the last couple of weeks and by evening time when my husband and I were going to go get take-out dinner, Thomas insisted he go with us. He just didn't want to be alone yesterday. I just wish I knew why.

Monday, December 15, 2014

A Moment To Take A Breath

I don't know what it is in the water piped into my house but I've got to say that something good is happening. I can't hide my happiness as I write this because it makes me so happy to see.

Thomas is doing well.

You know, I have lost faith in medications over the last year because nothing has made a dramatic improvement in Thomas. Sure, things have worked, they've slowed down or stopped symptoms of schizophrenia but I haven't seen anything like I am seeing right now.

For so long Thomas has been missing. He's been flat, he's been depressed, he's been anxious and he's just plain seemed lost. All of these symptoms, that now I think were from a chronic depression, have lifted and in their place stands a happy Thomas. I was a critic of stopping his Wellbutrin XL and putting Cymbalta in its place and I held little hope that things would change but they have. This young man I have sharing life with me right now is remarkable. No more flatness, lost looks in his eyes and most importantly to me, dramatically decreased anxiety. It's the anxiety that I am most happy is virtually non-existent. He does, sometimes, have his before work anxiety but he seems able to control it and even pull himself out of it most times. This anxiety before work was the most crippling, to me, of his mood issues and I hated seeing him so desperate to find normalcy, often failing at doing so. It has been a few days but he has been virtually free of anxiety.

So what do I have to thank for that? I've got to say, I think it's the Cymbalta. I didn't even know it was possible to see such a dramatic improvement but let me tell you, it is. People here on the blog and elsewhere have told me "it gets better" but c'mon, all of you, do you really and truly ever believe that when people say that to you? If you are one who believes that, you are the lucky few because honestly, deep down in my heart, I don't always think that's going to happen. When we live day to day, watching our loved ones stay the same or worsen, the days tend to add up quickly and you see nothing but the now" and "now" is a powerful place to be. When things are painful, "the now" seems to go on into eternity. Then, things like this upturn in Thomas's mood happens and suddenly "now" is hope, now is light, now is exciting.

I will say, however, that the positive symptoms of Thomas's schizophrenia are still present. He's still paranoid and he's still delusional, things I'm not certain will ever go away. They're like old friends and as a person standing on the outside of those two things, I am used to them being a part of Thomas's being. Just like you have arms and legs, these two symptoms are just there, a part of daily life.

Dr. K. has devised a plan to help those symptoms. It's a variation on the two buckets, "normal thoughts" and "schizophrenic thoughts" but I haven't talked about it yet because I'm waiting to see if the plan is feasible. As I said before, delusions are tricky things that if you don't catch them when they're in their creation phase you've all but lost your loved one to the delusion fueled whirlpool dragging your loved one down into its abyss. Dr. K. is very excited about his plan, I am less so only because I live with Thomas the other 6 days and 23 hours that Dr. K. doesn't. I know what happens in that head of Thomas's when it comes to paranoia and delusions and it's just not as black and white as two buckets. It's more a chest of drawers where you file fractions of thoughts into various drawers. I don't know, though, we'll see how it goes over time. I'm on board with the plan, I just think it needs tweaked somehow but how to do that eludes me.

What's important, though, here today, is that Thomas is doing better. Seeing a bright, shiny Thomas day in and day out now for at least two weeks, if not more, is a sight to behold and I plan on hanging onto these moments pretty tightly for as long as I can.

Friday, December 12, 2014

Friday's With Tom--R.E.D.



Hi guys, Tom here, and welcome to my blog. Today I'm going to talk about R.E.D. No not the color, the acronym.

 

R.E.D. was an acronym my therapist, Dr. K, came up with to help me when I had an anxiety moment.

 

The “R” in R.E.D. stands for “Reassurance”. Most of my fits of anxiety are centered around my mom being out of the house on days that I work. So I use “Reassurance” to help calm me down. An example of how I would use “Reassurance” is saying something to myself like, “My mom will come home, she has never made me late for work.”

 

The “E” in R.E.D. stands for “Exercise.” This one is kind of self-explanatory. “Exercise” is doing some form of physical activity to help calm me down during an anxiety moment. Now to be honest, I've never needed to do “Exercise” because I usually use “Reassurance” and the final letter in R.E.D. “D,” “Distraction.”

 

I've used “Distraction” on multiple occasions to shift my attention away from the anxiety inducing thought to whatever I'm doing. Because I play a lot of video games, my attention is always redirected towards the game rather than the anxiety thought. Now another “Distraction” that I use is watching TV or watching a movie.

 

The acronym R.E.D. has helped me on multiple occasions and maybe it might help you or your loved one lower the anxiety that you or they feel.

 
As always, stay beautiful.

Seeing The Light

Yesterday couldn't have been a better day. You should have seen Thomas. I don't know for sure what is happening but whatever it is, I love it.

I had a light with me yesterday and his name was Thomas. What a beauty he was. He was quick on his feet in conversation, he was smiling a real smile, he was engaged in conversations, he was asking questions about things in order to better understand them, and he held his own in therapy, keeping up with the pace of it and joking with Dr. K. about things. Even under some pressure in therapy yesterday he faltered only a little bit but recovered like a champ and moved on to the next subject. Who was this kid that I had with me yesterday?

I was lucky enough to have him with me all day. We did a lot of talking about SSI and what it means for his life now and we made plans for his future. I took him to Staples (an office supply store) and I bought him a file box, a rental agreement template, a power of attorney template and some file folders. He is SO EXCITED about signing a rental agreement which I just love. I love it for him because we talked yesterday about how with SSI he will finally be completely financially independent. If he's paying rent, if he's contributing to 1/3 of the household expenses then he is, for all intents and purposes, on his own. Granted he's still home with Dan and I but he and I both feel this new freedom. Each time I mentioned his independence, he smiled the biggest smile. He wants this so badly. I know he's not ready to leave home completely but this sure is a big next step for him.

I sat him down and talked about having his job and having SSI also. I was afraid to ask, but finally did, if he was planning to quit his job now that he has SSI. I asked him that because he had hinted at that back when he was really hating his job and I didn't like that he would quit his job for that reason. What he told me was exactly what I wanted to hear and that is that he wants to keep his job and make as much money as possible. I am thrilled!

As we spent the day together yesterday I found myself and my own mood light up because I finally had a partner, a friend of sorts, in my kid, in fact he wasn't really my kid at all. He was a stranger but only in the best ways possible. His bright, engaged mood was a ton of fun to be around and I enjoyed every conversation we had.

In therapy Dr. K. could see the same thing that I had seen all day and he was a bit surprised too. He questioned Thomas about things, put him through a few quizzes and Thomas sailed through each one for the most part. He spoke in complete sentences, was able to articulate perfectly his feelings and thoughts and he laughed with Dr. K. and I as he would yawn repeatedly and Dr. K. would jokingly ask him if he was boring him with therapy today. He was doing so good that Dr. K. even forgot to ask about his numbers. He checked in with him about his anxiety and paranoia but there was no rapid fire questioning asking Thomas to rate with numbers his various symptoms. It was clear yesterday that Thomas was having virtually no problems and with him like that it cleared the way for more productive work to get done. A couple times Dr. K. mentioned SSI but knew nothing of the decision that Social Security had made on that and each time it came up, Thomas and I looked at each other and smiled a secret smile at each other, neither one of us revealing the decision about SSI that had been made the day before. I relished those secret smile moments because he and I were so connected in our mutual excitement about his future and what SSI meant for him.

Finally, we got a chance to tell Dr. K. about the SSI and Dr. K.'s reaction was exactly like mine yesterday. There's first the "congratulations" and then the moment where you stop and realize that the reason the SSI is in place is because Thomas has schizophrenia and will the rest of his life and the government recognizes that and puts it in black and white, pretty much cemented for all time. Dr. K. was right in his observation that ultimately the whole decision is bittersweet. He said that word, bittersweet, and I was filled with the same aching that I had when the decision came down. It's so good but yet it's so sad too. One thing that Dr. K. did do for Thomas, but I felt like it was more for me, was to tell Thomas that when big events happen in life, like getting SSI, that he should give it 6 months before he makes any big decisions like moving out. I liked that he said that because I want Thomas to take moving out slowly. He's young still, he's still not completely stable and I think moving out is a big step that shouldn't be taken just yet.

All in all, though, yesterday was simply blissful for me as Thomas's mom. The light in his eyes and his body language was something to behold and I found myself hoping that this new, bright, shiny Thomas is here to stay a while.

(Note: Thomas was unable to write his "Friday's With Tom" post yesterday because we spent practically the whole day together and by the evening time his meds had hit him and while he wanted to write the post, he felt too tired to do it. I told him that he could do it today and that I would just post it later. So, it's coming today, just a little late. Be on the lookout for it in your timelines this afternoon!)

Thursday, December 11, 2014

I Just Need A Minute Or Two

The call came in yesterday in the late morning. The call was from our disability advocate, Autumn, who has done a stellar job of taking care of our case. The news she called about was that Thomas has been approved for SSI (Disability). After stopping the evaluation of Thomas by one of their doctors they wasted no time in going through all of the medical records I had provided and that his doctors had provided and from that they determined that Thomas is, indeed, disabled. This is good news on many levels which I will talk about in a minute. The thing is, though, I just need a minute or two to let this sink in.

You'd think that was a call I really wanted. It was one I really wanted. I have waited for this decision for months but somehow when the call came in, it fell like a big boulder dropped in front of me just about landing on my toes. Where I felt it the most, though, was in my heart as I heard the words that he had been determined to be disabled. I asked a few questions one of which was,

"Is this considered real disability because he only got SSI because doesn't he need SSDI to be considered truly disabled?"

Then the answer came,

"Melanie, Thomas is now considered disabled by the federal government."

Ouch!

Maybe you don't get it but as a mom who saw an entirely different life for her son, this is pretty tough news to hear.

He's disabled.

He has schizophrenia. He really does. He's sick. End of story.

Oh. okay.

"Thank you Autumn for all of the wonderful work you have done. I really really appreciate what you have done."

The truth is, I am indebted to this woman for all that she did. All of the calls she made, the forms she filled out, the personal time she took with me to answer my barrage of questions. She did her job well and earned her 20%. She did good but by no fault of her own, she had to deliver the news that Thomas is disabled to a mom apparently still hanging onto some modicum of denial about this illness in her son.

So, if you all don't mind, I just need a minute or two here to accept reality.

(one 1000, two 1000, three 1000, four 1000.........2 minutes)

Okay, so then let me focus on the good things here.

--Thomas now has a steady income.

--He will have this income even if he is unable to work.

--We're looking at the possibility now of him actually living independently.

--This will be the perfect opportunity to teach him about cost of living and how to budget.

--He will have lifelong health insurance backed by a lifelong secondary insurance from his biological dad so we'll never see another medical bill.

He will qualify for numerous programs--local, state, and federal.

There are so many great things that come from this news that I received yesterday. There is a lot still to learn. Medicaid to set up and calls to doctors to make sure they'll still accept him as a patient even though he is now on Medicaid. I'm sure there is much much more but what I have listed here to begin with are pretty great things.

So this morning, as I type this, I am awaiting a call from our local Social Security office to finalize things. Thomas wants me to be his payee and manage his money so I imagine that will get talked about. I'm sure there'll be an appointment made to sign papers and then we'll go from there. It's a morning of mixed emotions here in the Jimenez household. Thomas, of course, is happy. He doesn't understand the magnitude of what has happened by having this determination made. He sees only the best things and I thank God for that. To him, he's just him. He's the him he's always been. Now he's him with a monthly check that signifies independence. He sees only the good. As his mom, it will be my weight to carry, the realization of what being deemed disabled means.

I guess that is just the way it should be. Thomas has enough weight to carry just living with this illness. My job, as always and forever, will be to clear his path, light the way and pray.

This thing with SSI is a good thing. Now let's see what's next.

Wednesday, December 10, 2014

The Tides Turn

I sat yesterday morning in front of my computer just staring at the screen after having had a rough night. It was one in a line of 3 that I had had but yesterday's was particularly rough. I thought I'd take a break from writing, try to get some better sleep or just hope that good sleep last night would spontaneously happen but it didn't. I spent yesterday in a weird place just as I had before and I literally sat most of the day in my chair doing little more than watching TV and after last night, I expect little else to happen today also.

I am not in a good place.

For those of you who have been a part of my page for a while, you know that I live with bipolar disorder and if you've been here a year you know that winter is my time of year for falling into the mania aspect of the illness. My mania though is not the "fun" kind. I don't think I can conquer the world, I don't go shopping and fill my closet with beautiful things, I'm not wildly talkative and engaging, instead I live with the nasty mania where I am agitated, frustrated, I don't sleep and my brain feels like it's alive. Not alive in the sense that it's working in overtime, rather that my brain, the flesh and blood of it, is squirming around in my head. I don't know if any of you suffer from Restless Leg Syndrome (RLS) but if you do, imagine that feeling inside of your brain. Trying to capture a thought is nearly impossible and (sorry to be gross here) I want to tear my brain from my skull. There is no symptom of bipolar mania that is pleasant, even the "fun" stuff isn't really good but if forced to choose, I'd choose the happy stuff over the hell I am currently in. My illness follows a trend that starts much like it's now started and moves into a reckless kind of mania where I have all of the frustration and agitation but I also become impulsive, outspoken and unable to sit still.

I am writing this because you guys are a part of my life, a part of Thomas's life and a part of my marriage at times. You are family in a sense and it is with family that I share my own struggles outside of the things that go on with Thomas. So, today, I am writing about my own life because I believe you need to know what I go through as a human being outside of being a caregiver for Thomas.

I have read that schizophrenia and bipolar are tied genetically (along with about 6 other disorders) and knowing that, I am aware that my own illness contributed to Thomas's. As far as I am concerned, he got the raw end of the deal having been bestowed with schizophrenia as opposed to what I got when genes were splitting and/or distributing themselves in the womb. When I get sick I am painfully aware that it is my genetics that contributed to his illness and my heart breaks.

While my illness takes another course in a lot of ways, Thomas and I share some similar symptoms. At it's worst (and in a few ways I'm there now) my own illness causes paranoia, a touch of delusional thinking and some, how shall I say this, weird night time experiences which I believe amount to hypnogogic and hypnopompic hallucinations which are hallucinations that happen just as a person is falling asleep and then again as they wake up. While not considered traditional hallucinations found in schizophrenia, they are a scary experience nonetheless and they are something I am currently experiencing.

My illness is back, its course it takes throughout the year is right on time. Much like Thomas, the Fall and early Winter is my "witching hour" where something happens inside my brain, a light switch is flipped, and my illness become unpleasant.

Now, I tell you all of this because I need something from all of you. Oftentimes my scrambled brain wins out over my desire to do the things I love which includes writing this blog so there may be times where I don't write in the mornings. Don't take my disappearance as anything more than me having a "bad day" and needing a break to try to smooth the feathers of my brain and calm it down a bit. Even then, even if I am struggling though, I will write if something is going on with Thomas that I think needs to be shared. Luckily for me, for the last few days since my illness roared to life, Thomas has been doing reasonably well which is nice because it has given me a chance to settle the demons in my own brain and get back on my feet.

So, today I take a "selfish day" and talk about my own illness. I hope you don't mind. I am working on getting back on my feet which may take some time but in the mean time I hope you'll give me room to be flexible with this blog.

I love you all and appreciate your support of Thomas. I guess I'm asking for a little of that same support for my own illness as the Winter months wear on. I will be here on my blog though watching out for private messages and answering those as best as I can because I know so many of you need support of your own but apart from that, I will just post things like my advent calendar and other little informational things for you to read and hopefully 'like' and share when I am unable to post a morning blog post on some days.

Thank you all for indulging me today as I explain my own struggles. You all are simply amazing.

Monday, December 08, 2014

Sorting Into "Buckets"

 
Dr. K. had a hard talk with Thomas last Thursday about his illness. Perhaps, though, it wasn't as hard for him as it was for me. Dr. K. uses the word "schizophrenia" so rarely that when he does, it still hurts my heart to hear that, indeed, this is the illness Thomas has been dealt in life. When I hear Dr. K. use THE WORD and I hurt, I realize that I am STILL in some level of denial about Thomas being sick. It's just so hard to face sometimes.

The plan, though, that came out of therapy was to teach Thomas how to sort "normal" thoughts from schizophrenic thoughts and do so using imaginary buckets placed on each side of him. In theory, at first, I loved this idea. It was set up so that, for example, if Thomas and I were in the store, then the deal is for Thomas to say,

"Hey mom, I think that guy is following us."

And then I'm supposed to help him by showing him and talking to him that the guy behind us is just a shopper thereby sorting the potential schizophrenic thought into the normal bucket. I'll have to admit I was kind of excited about this. Thomas had agreed to ask me to help him and I looked forward to helping him do the sorting.

Needless to say, the opportunity hasn't come up yet. What did come up, though, was a couple of talks I had with Thomas about thoughts that he has, both of which I didn't have a clue what to do with except to stand by and watch as they got tossed into the schizophrenic bucket.

I've mentioned before that Thomas worried, in Seattle, about me being pick pocketed. Well, it seems that thought has extended to his own life, now, back in our town. Even worse, it seems to show up at work where Thomas is convinced it's true and I'm not there to throw it into a bucket. You see, anytime someone gets too close to him he begins to believe that someone is going to steal his wallet. Coupled with that are the "shady" shoplifters who I've tried to reason with Thomas that just because someone LOOKS a certain way doesn't mean that they are a shoplifter. Both of these beliefs, to me, are schizophrenic beliefs and both currently reside in the schizophrenic thought bucket. Upon talking to him about these thoughts, I found myself unable to get them from the schizophrenic bucket into the normal bucket. I'm not there in the moments when he believes these things are happening and after the fact, I am useless to help sort because by then the thoughts are solidly cemented in their bucket. As a result, I don't know what to say to get these beliefs changed. It's not for lack of trying, it's just that these two things are now firmly in delusion territory and as we all know, fighting delusions is not an easy job. The man behind us in the store that is potentially following us, I can sort easily because it's in the moment but this, the shoplifters and the pick pocketing, are just plain out of my hands.

So I am at a loss as to what to do.

Then yesterday Thomas and I were watching a movie called "Olympus Has Fallen" about the White House being attacked by the North Koreans. It's a really good movie and I found myself, as I watched it, praying that the American hero in the story is able to take back the White House. My allegiance fell with the Americans, of course, but it made me think. With all of Thomas's delusions about government, not just ours but a couple of others, I wondered,

"When watching a movie like this, who does he root for? Does he hope that the Americans will win and take back the White House or does he root for the Koreans?"

So, on the way to work last night, asked in the hopes that I could finally sort something into the normal bucket, I asked him,

"So, when you watch a movie like that, who do you root for? Are you rooting for the Americans?"

Then came his answer and I was left holding the thought teetering above the schizophrenic bucket, myself teetering inside from the answer I got:

"Well, I don't root for the Koreans but I'm not rooting for the other side either."

Um..."the other side" are the Americans...us...you know...this country we live in and rely on for our way of life. So...what? Who DO you root for? The truth of the matter is, because of what I know about Thomas's delusions, I know exactly who he's rooting for and my precious American team has lost the fight in this case and the Americans in the movie, not to mention the Koreans also, are tossed in the schizophrenic bucket and I am at a loss as to how to reason with him and get this all sorted in their right buckets.

So here we sit, both he and I, with these imaginary buckets on each side of us. My enthusiasm about helping him sort thoughts has dwindled and the inner workings of his brain are left to continue to sort things in the manner in which he has always sorted things. Right, smack, into the schizophrenic bucket.

I love Dr. K. to death for his enthusiasm. It's the same enthusiasm I had as we left his office last Thursday, but in the end, enthusiasm isn't the answer or the "cure". We can all want the best for Thomas, the healthiest for Thomas, but in the absence of that, Thomas is left, yet again, in the clutches of his illness. I really loved those buckets. In my mind one was painted blue, the color of normal, and red, the color of schizophrenic, but no matter how much I decorate them or imagine their jobs, the truth of the matter is, the schizophrenic bucket holds the most weight.

Friday, December 05, 2014

Friday's With Tom--Moving Out

 
 
Howdy folks, its Tom and this is my blog so lets get to it.

Today I'm talking about moving out. That's right, I'm leaving the nest. Well, not yet. I have a few things to say, concerns and questions.

One of my main plans is to apply for ...section 8 or find a place where the rent is low. So far I've done one; find a place with low rent. The only problem is that it’s a long way from home so if I have some trouble it'll be a long way from me. I considered moving with a friend but I don't know if he's still wanting to or not. There is another friend that I can think of that might want to move in with me but I haven't asked him yet. There is a house literally 100ft away from my parent's house so that's an option.

I guess the biggest upside to moving out is it would give me some experience in independence in the real-world.

One of my biggest anxieties/worries is being able to keep myself fed and clothed and basic stuff too keep me up with the Jones'.

Well that's it for today's post guys, as usual, stay beautiful.

Thursday, December 04, 2014

Well, Never Mind

It was a good day yesterday.

Why? You ask.

Well, at 12:30 in the afternoon Thomas's phone rang and I listened as he said a lot of "Okay's" and "uh huh's" and then hung up. I was in the kitchen when he walked in and he said,

"That was Social Security. I don't have to go to that exam."

Ha! I thought so. I thought if they would just read through all of his medical records that they would realize that he actually is sick and doesn't need one of their stupid exams. So, it turns out that they had received the faxed records of Thomas's the day before yesterday but only yesterday actually read through them, making the determination about the mental status exam based on that. Thank God!
All of my worries disappeared after that. I just knew that if they could read his records that they would have all they needed to make a decision. Then yesterday evening a comment came in to my website and I thought I'd share it here with all of you because it was filled with good information about the process and I know some of you are going through this process too. Here is what it said:
---------------------
Melanie.... I have been through exactly what you are experiencing now with your son. I feel compelled to give you a couple words of advice about how to proceed with Social Security at this point.

Try your very best to get the exam for Thomas postponed until after the holidays. The only reason the exam was scheduled was because the medical records had not been received by Social Security and they wanted to move the case along. By postponing the exam, there will be time for them to review Thomas' records and an exam should not be needed at a future date.

My son's doctor was late with sending the medical records and my son had to see a psychologist, hired by Social Security, Although I was in the room with my son, and did interject a number of comments, the whole process was limited by a standard set of questions, none of which really related to my son's struggle with schizophrenia. A lot of the questions were about past jobs and what work my son thought he could do at the present time. (Remember, your son will receive disability payments based on the fact he is unable to work), When we left the office, I truly felt that the examiner had no idea what struggles my son had faced and was currently facing.

Social security disability was denied based primarily on the psychologist's report. My husband and I finally ended up hiring an attorney to appeal the ruling and this was the best thing we could have done. The attorney's expertise in doing this type of administrative appeal, along with a full report from my son's psychiatrist, helped my son's case. After getting an additional opinion of my son's case by another psychiatrist, the judge awarded benefits to my son. (By the way, the Social Security Administration outlines the fees an attorney can be awarded. There is a percentage amount, but the cap is set at $6,000. The fees are usually taken from retroactive payments from the time of filing. You should really check this out!)

My son's paranoid schizophrenia made it impossible for him to work at any job. Since my son was under 21 when he became disabled and my husband was 65 and receiving Social Security himself, my son was able to receive a higher disability amount under SSDI. I think you mentioned in your blog that Thomas' dad was retired. If he is receiving Social Security payments now, Thomas may qualify for the higher amount.

I think it is wonderful that Thomas is currently working part- time and I hope that he is able to continue the job. Working definitely will give him structure in his life and help his self-esteem. From what you have said in the blog, you seem a little uncertain about his long term ability to work. This may also have a bearing on how you proceed with the Social Security Administration. Again, it would be wise for you to talk to an attorney about the different scenarios. Thomas does suffer from a severe mental illness and it would be good to see him receive benefits that will help him in life.
Good Luck! Hope some of this information will help.

Thanks so much for your blog! You are providing a wonderful service for those of us who have loved ones with schizophrenia.
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Hopefully this will help some of you too.

This morning, at what I consider an ungodly hour, Thomas and I travel up to see Dr. N. By the time this posts, we'll be on the road and Thomas will have had to gotten up at 7am. I feel horrible for him since that'll be a full 4 hours earlier than he usually gets up. I'm sure he'll be a ray of sunshine.

Not.

I can't blame him though. I will come in to this appointment with him today, though, because Dr. N. needs to know all of the things that have been happening lately. Thomas's dissociation is a concern and while I know it can't be treated with meds, and I'm happy about that--just what we need, more pills, I think that Dr. N. needs to know that is happening.

I'll post tomorrow about how that went.

One last order of business. For those of you who are wanting to participate in the advent calendar, when I post one, just click on the picture of the door and it'll take you to a website I created that has something fun, funny, inspirational or crafty. The whole thing really is just about fun (as opposed to the heavy schizophrenia stuff) so I hope you'll go to them just to brighten your day. I'd also like to hear about it in the comments section here when you come back to this page. I need feedback to know if this is something you guys even want.

I'll see you tomorrow!

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