1) My Big Boy is Home

My Big Boy Is Home

Some of my own thoughts and views as a family member of someone with psychosis because we are all living and coping with it.

I thought this would be easy to write but now I have no idea where to start. I will try to find the beginning. Now that I'm aware of what some of the early signs are... well I can still only guess at the beginning. My son was diagnosed with paranoid schizophrenia three years ago (2011).  Two years later I still have to use spell check to spell it along with terms like cognitive thinking, concurrent disorder, anosognosia and confabulations to name a few. I certainly can't spell or pronounce most of the medications.

Let's start with a broken family, ADD (Attention Deficit Disorder),  ADHD (Attention Deficit Hyperactivity Disorder)  and OCD (Obsessive-Compulsive Disorder). Only the broken family is fact. The other symptoms I can only guess at being diagnosable along with outward appearances of Tourette Syndrome. He is 19 now. Diagnosed at 17 with paranoid schizophrenia. When did some of these symptoms start? At age 12 I was getting phone calls from school about clapping and barking in class. Symptoms of Tourette's? I don't know. Passive at school yet hyper at home. ADD or ADHD? I don't know. If he was telling me something and I interrupted he would start all over. OCD? Again I don't know. I am now being informed that OCD can be an early symptom of anxiety. Was he anxious even back then? I know he didn't like being left alone and had trouble being motivated to go to school.  So if all of this was showing itself at age 12, I can only guess as to when he started with symptoms that had no outward signs. As a parent I chalked it all up to him acting out because he was from a broken home and needed the reassurance that no matter what he did his parents still loved him. I still think this. As children we often struggle with that even from a "normal" home life. Now add being moved across country from one parent to another approximately every two years. A little background. I left/disserted my children when they were 5 and 6 as I found myself in over my head with a drug addiction. Talk about recipe for disaster. To reassure you I am now drug free. I was basically absent from their lives for about 6 years. I started rebuilding a relationship with my son when he was 12. By that time the above symptoms where already firmly in place. Could any of this have been avoided? Another I don't know. I can't go back in time and fix any of it. I can only do my best to have empathy and understanding and try to build a stronger relationship with my son so that he can recover and build a life for himself.

I don't know... a little humbling to say. Even as adults when we are supposed to be self-confident, mature, responsible, etc... We don't want to admit that we just don't know. Along time ago I admitted to myself that I know very little. I have a lot to learn about myself and the world that I live in. I have spent so much time on the internet looking up psychosis, schizophrenia and the side effects of numerous medications. All so that I can have some understanding of what my son is going through. In the end, I don't know and I can't know what it is like to be inside of his head. In my opinion it's very liberating to admit I don't know.

One step I did take was to buy Dr. Xavier Amador's book I Am Not Sick, I Don't Need Help. The Ontario Schizophrenia Society told me about it. If you Google it you can buy directly from his website. Did it give me a great insight into psychosis? Can't really say as I had already spent so much time researching it. But it did help me to learn how to communicate better with my son so that we were not constantly butting heads over something that neither one of us has much, if any, control over. There have been so many websites that I have been to but I do recommend checking out www.leapinstitute.org . For me the important thing that I took from this and the book was LEAP. Listen Empathize Agree Partner. I even try to use this in all of my relationships. I don't always succeed but I do try. Keep in mind this is my interpretation.  I do my best to listen to what he is telling me, not just hearing the words. I ask questions about what he believes in. They call it reflective listening. I try to empathize, understand how he is feeling and what is motivating those feelings. If I do this I can to a certain degree understand why he is feeling the way that he is. The more things we can agree on, or agree to disagree on, the more he can trust me to listen to him and hopefully we can slowly build a partnership of recovery. I had to understand that what he is telling me is his reality. Just as real to him as the computer I am now typing on is real to me.

Insight... It's not just their insight into what is happening but our own insight into what is happening to them. Through some of my research I came across the term anosognosia. Wikipedia states that "anosognosia is viewed as a deficit of self-awareness, a condition in which a person who suffers certain disability seems unaware of the existence of his or her disability. Unlike denial, which is a psychological defence mechanism, anosognosia results from physiological damage on brain structures..."  There is more to the definition. Basically it's a lack of insight caused by damage to specific parts of the brain. I watched some video's on the internet where Dr. Amador spoke on this. They were eye opening. I have read that approximately 50 percent of individuals with schizophrenia is affected by this. For me this is very important to understand because if I put myself in my son's shoes I can began to understand why he does not think there is anything wrong and why he does not want to take medications for a disease he does not believe he has. He is not trying to be hard headed or difficult. How would I feel if I was being told I had to take lithium or some other medication when there is nothing wrong with me? Pretty upside and angry. So I can see why he would think paranoid thoughts about people plotting against him. I would. Now what? Ok so I have empathy for his inability to see himself clearly. Honestly I don't think to many of us can. I see myself as a person trying to help those I love. To build a better, healthier life for all of us. But how do they see me? Well... Controlling and stubborn are certainly words that I have heard. Considering my own past mistakes I'm sure hypocrite would be in there somewhere. I can't change any of this. But I can have empathy for it.

To add to my son's original diagnoses he now has concurrent disorder. Over the past two years he developed a chronic marijuana addiction. So he has two disorders going on at the same time. Psychosis and addiction. I consider myself lucky that I can at least understand the addiction. For those who have never suffered from addiction hopefully I can shed some light. I have read that a lot of people with psychosis turn to street drugs and/or prescription drugs to self medicate and cope with their symptoms, almost 50 percent. I know for my son, marijuana makes him feel ok, secure, at ease, comfortable... don't we all want to feel this way? From my own experience I can tell you that the need to use or self medicate can be overwhelming to say the least. How overwhelming? I could go days without eating or sleeping but I couldn't go days without using. It got to the point where I could not go outside without making myself feel ok first. I thought I needed it to be ok. More than I needed food or sleep. I use these examples because I'm sure that we can all understand how important it is to eat and sleep. Our body needs it function. So how strong is this desire to feel ok that it becomes more important than eating or sleeping?  How many of us smoke cigarettes, drink coffee and/or alcohol. In our eyes we need them to get us through the day. To deal with stress, to wake us up and to wind down after our day. These things are legal so we can justify them as being ok but in the end they are still crutches that we use to cope with our daily lives.

I'm sure most of us have been told what schizophrenia or psychosis is. "Any of a group of psychotic disorders usually characterized by withdrawal from reality, illogical patterns of thinking, delusions and hallucination and accompanied in varying degrees by other emotional, behavioral or intellectual disturbances." Great. What exactly does that mean? I think I prefer Wikipedia's definition. "a mental disorder characterized by a breakdown of thought processes and by a deficit of typical emotional response. Common symptoms include auditory hallucinations, paranoid or bizarre delusions or disorganized speech and thinking..." Schizophrenia is from the Greek roots of skhizein (to split) and phren (mind). Not to be confused with split personality, etc. It's a "splitting of mental functions". It is thought to mainly affect cognition. One definition of cognitive is the process of obtaining knowledge through thought, experience and the senses. So my understanding is that it affects his cognitive thinking. What does all this mean to me? If we learn and process information through thought, experience and our senses and these things are not functioning properly then our knowledge of reality is going to be, for lack of a better word, dysfunctional. I have looked at pictures of the human brain on the internet where they have compared brains with altered insight (psychosis) and preserved insight (no psychosis). One version can be found at www.treatmentadvocacycenter.org under the problem section. You can see that physically they are different. Therefore this is not just a psychological disorder but a physical disorder as well. We would understand if someone had a broken leg that they would not be able to walk as the rest of us do. I think we need to understand that some individuals can not think and react like the rest of us do.

My son only just came to live with me, again. He was living with another relative for the past two years as we thought it was the best place for him during and after his first psychotic break. Recently we all had to agree that the situation was not working, in fact was getting worst due to a growing addiction and  the added pressure of finances and him turning 19. He has been with me for 2 weeks now so I'm getting the chance to put some of my theories, approaches and understandings to the test. The first thing I had to throw out the window was my preconceived notion of "How hard can it be?" Hard does not began to cover it. I may not have schizophrenia/psychosis but I have seen how easily a family's life can be dictated by it. This is a family disease as it affects everyone. I'm pretty sure that my own family is not the only one dealing with the fact that everyone has their own opinions as to what the problem is and how to fix it. Go easy and give all the love and support. Go hard and lay down the law and expectations. I'm hoping to find a happy medium. I'm lucky that I have family and a best friend that I can talk to and unload on. Even with that support I have come to realize that none of them can really understand. Worrying that one wrong sentence can undo a relatively calm day. And it can as I have recently discovered. To be constantly on your guard is very tiring. I have been prescribed sleeping pills as I have insomnia yet for the first week or so I was afraid to take them in case I needed to be instantly alert at night. I try to remember however that as hard as it is on us it's got to be harder on him.

Over the past two years I have been in contact with my son and the relative he was living with, even visited, so I thought I knew who was getting off that plane. I knew he had a drug addiction. I knew his version of reality was different then mine. I knew he wasn't eating and sleeping right. I knew there had been issues with adherence to taking medications. I thought I knew... My little boy is here! Well he's physically no longer a little boy. He's 19 and he knows that he is 19. The next three days consisted of him almost literally climbing the walls, of misused medications, stolen money, hidden alcohol, him not eating and sleeping and of course the arguments that he's an adult now... I think, I should have been more prepared  because I knew... I don't think I could have been more prepared, no more than when I brought him home as a baby and found out how tough being a mom can be. I made a lot of mistakes then and now. I didn't watch my purse close enough. I didn't know what I was seeing or how to respond. Not that I know now but I'm trying. All medications are in my purse and my purse is constantly within my sight. Yes it even goes to the laundry room with me. Did I feel bad that I was so obviously not trusting him? Only for a minute. I know what it's like to have an addiction and how hard it is to walk away from that strong a temptation. I recently tried quitting smoking again... failed...

Now I have some decisions to make for my little man because despite him being 19 and an adult, he would not appreciate me saying this, he is unable to make these decisions for himself. I can't do anything about his psychosis, especially when he cannot or will not see that he has schizophrenia. Some things are beyond my and his control and I have to accept that. I can however control my home to a certain degree. I am taking the no tolerance approach when it comes to drugs. They will not be tolerated in my home. Can I say for 100 percent certainty that they will never make it into my home? No but if they do they will get flushed. Again I consider myself lucky because he has no access to money at the moment. That will change of course. In the meantime I have made it clear to him that this is what I expect and I have been doing my best to follow through on this. Wild dagga (sold at convenient stores as incense but also called South African Marijuana) flushed, vodka and all other alcohol down the drain. Another one to watch for is Salvia. Apparently it was on the news awhile ago that it's no longer legal in Canada because it is causing deaths in teenagers. However try to find out who is responsible for getting it out of our stores, apparently no one has jurisdiction... Another hallucinogen they are selling at convenient stores as incense, right beside the glass pipes... really... who smokes tobacco out of a glass pipe?

I remember sending articles on nutrition to my son's caregiver hoping it would help to keep his psychosis a little under control. I read articles about caffeine increasing  and tobacco use decreasing the effectiveness of medications, limiting sugar because their brains are already over stimulated,  giving sugar to help with the drug addiction so they get a food high, limiting glucose, etc. I sent out vitamins and melatonin. Easy right? You're not supposed to take vitamins within 2 hrs of other medications especially vitamin C. My son smokes a lot so I worry about him lacking in vitamin C. I now have him taking a multi-vitamin at dinner but at first it was "I don't need it." Get the fruit chewable ones, kind of taste like gummy bears. Had to get the same ones for my husband. To little or too much caffeine, ever try an energy drink? My son loves them. I wish they were never invented. Calm to agitated in 15 minutes. Sugar and glucose? How about happy to see him actually eat a whole plate of food. He loves green salad as does my husband so that's becoming a daily dinner item. Junk food? I'm a sucker for a good bag of chips myself. Did you know roast chicken chips go really good with beef jerky? Melatonin. He will take it. Not because he wants a better night sleep but because it gives him more vivid dreams.

The difference between the first week and the second week? No drugs. I'm referring to street drugs, marijuana. For the first time in probably a year or more my son has been marijuana free for over two weeks. Honestly, I'm excited about this. Of course I have to keep reminding myself that there is no way I can keep him this way. One day he will have access to money and he will go get it. Why? Because he is an addict. That doesn't go away over night. This I know from my own experience. Took me several tries, rehab, and my life being in total shambles before I started on the road to recovery. 10 years later I still won't put myself into a situation where there is easy access to my drug of choice. There's a reason they call it temptation. So when my son tells me that I have no idea what he is going through with respect to his marijuana "needs". He doesn't really like my answer because I do have a clue. I have always been very open with my family, friends and even employers about my addiction. One of my boss's took me out for lunch to celebrate my first year clean. Addiction is also a family disease. It affects everyone and the affects are long term. What will I do when he does come home high or brings drugs home? Find it, flush it and deal with the another round of withdrawal. Try not to get angry when he says "I'm an adult and I can do whatever I want. You can't control me!" Of course this all being said when he's eating my food, living in my apartment, using my internet while I do his laundry with my purse in tow... Yes I'm being paranoid and controlling. My husband just called me to let me know that the LCBO (local liquor store) is going on strike if I wanted to get a bottle of wine. My answer. Perfect. I'm not being sarcastic. I will be happy if they go on strike. One less thing I have to worry about my son trying to get money for.

Anyways back to the difference between my son two weeks ago and today. So far I have said  very little about the symptoms of his psychosis, you know the one he doesn't have. Again more research. Are his symptoms aggravated by his marijuana use? Is marijuana a coping tool, a crutch, a catalyst, a side affect or a cause? Again I don't know. I do know that both began to become a problem at around the same time. But I don't know if one caused the other or not. I will never know. His first week, when he wasn't climbing the walls or bugging me for money for marijuana or alcohol, he was spending all of his time practicing his chi and telekinesis. He would spend hours trying to show me how he could move this piece of paper with his mind. Imagine his disappointment when it wasn't working very well when he knew for a fact that he could do it. He tried everything, different sizes of paper, different holders. Believing in spirits, etc the way that he does he concluded that they were not allowing him to show me. Illogical? Not really. Put yourself in his shoes. There is something that you know for a fact that you can do and now for some reason you can't even though nothing externally has changed. Really the conclusion can only be that someone or something is messing with you. I won't go into all the symptoms surrounding his chi beliefs. They are beliefs I cannot change and they are his. Today... he has not tried to practice his telekinesis for at least 4 days. Still talking to me about his chi but very understanding of the fact that I am unable to participate. I attribute this to the lack of marijuana and alcohol. If anyone has ever gotten high or drunk you know that your reality at the time is altered. I'm pretty sure that if I spent a significant amount of time under the influence of drugs or alcohol I could imagine myself capable of unlimited things based on my belief system. Point in fact, during my addiction I do recall having conversations with my deceased mother. Very real to me at the time and even now years later I can still recall just how real that conversation was. I know now that it wasn't real. My son however does not know that it's not real. Remember his brain does not function like mine. For me it's like thinking about our government. We always say "The right hand doesn't know what the left hand is doing." Guess what? His brain is no different. Signals are just not making it to their destinations.

The difference in his anxiety level. So anxiety is a big part of psychosis. Ok that makes sense. I can try to imagine how anxious I would feel if everything I know to be true was being contradicted by everyone. I have asked doctors and counsellors, explain to me anxiety. Tell me what the symptoms are and what anti-anxiety medications is supposed to do. In my opinion we all live with anxiety. I've had panic episodes so I know they can be scary. When I ask my son what are his symptoms of anxiety. He has two symptoms, palms sweating and nervous leg. He gained a third symptom when I explained how my panic episodes made it hard to breath. In the first week we ended up at the doctors getting two different prescriptions for anti-anxiety. The family doctor was doing his best to be accommodating until I could get my son to the psychiatrist. Both of those prescriptions got abused.  This is new to all of us. I don't think the family doctor has other patients suffering from psychosis. Even the pharmacy has never dealt with my son's medications before. As for the anxiety. I don't think my son has high anxiety. I could very well be wrong. I'm still trying to get a clearer picture on this. My son has never learned how to cope with even minimal anxiety as he learned very early how to cope using marijuana. For two years he has been using marijuana to alleviate his anxiety symptoms and make himself feel ok. So how is his anxiety now? He hasn't mentioned it for about a week now. No anti-anxiety medications after the first week, no marijuana for over two weeks and other then one beer last week no hard liquor since the first week. Coincidence? Maybe. I don't think so. Please remember this is only my point of view so don't make any decisions without a psychiatrist.  I think my son learned a long time ago what symptoms we will have empathy/sympathy for, the ones that we can understand. In my opinion most of his anxiety comes from marijuana withdrawal. He developed a chronic marijuana addiction this means he used almost daily over a long period of time and not small amounts. I'm certainly not out of the woods on this. Hopefully I will be lucky and if I can keep him clean for extended periods, because I know I can't permanently, then he can learn how to cope with what anxiety he does have. For those that do suffer from high anxiety I can only have empathy.

Adherence to anti-psychotic medications. So far I have not been met with a lot of resistance on this but it's growing almost daily. It was a condition I set before he came to live with me that he take his medications and that we can negotiate decreasing them with his psychiatrist. He wants control over them. I simply said no and listened to the "I'm an adult..." Every now and then especially if we have butted heads during that day, he will give me grief about taking them all. I've allowed him, no that's not right, he has decreased the amount on two occasions now. In the end what can I do? Tell his case workers and hope that his psychiatrist can have better luck in talking him into taking them. Considering what I have read about the percentage that actually do adhere to taking it, I'm happy to have him taking what he is. If I push too hard he can resist even more. I remind him when he wants to decrease even more of the agreement we made and that he needs to discuss this with the psychiatrist. He's being relatively accepting of this and in his eyes he is decreasing them responsibly. He actually asks for his night time ones because they are the bigger dosages and help him sleep.  Another area that I have been lucky in as he actually doesn't mind to much what he is currently on because the side effects are not that noticeable and even he noticed that he was able to concentrate on things better. Let's hope I can still be saying this in the near future.  I do have to remind myself that he is being expected to take medications for a disease that he does not feel that he has. How would I feel if I was being told I had to go through chemo when I don't believe I have cancer?

I'm trying to approach this as I would any recovery because that is the goal. To have him recover mentally and physically from the psychotic  breaks that he has had. I've read each break can take up to a year to recover from. Five hospital admissions in two years. I've been told by one of his old case workers that my son is the one of the worst cases they have seen in that particular hospital. A little scary. I've read the statistics. 1.1 percent of the population age 18 and older in a given year have schizophrenia. That's  over 1 out of every 100 people. Even more scary is that 10 percent commit suicide. That's 10 out of every 100 people with schizophrenia. I'm not trying to cause mass hysteria or anything but I can't ignore the facts. This disease can be fetal. This scares me way more than dealing with the daily symptoms of his psychosis. Grandiose delusions (fantastical beliefs that one is famous or otherwise very powerful), hallucinations (unreal sensations that appear real), confabulations (memory disturbance, defined as the production of fabricated, distorted or misinterpreted memories about oneself or the world, without the conscious intention to deceive) and paranoia (feelings of persecutions). Yes he has all this except for the hallucinations which seem to have disappeared when he started his latest medications, despite the marijuana use. For just a moment let's step back in time to when our kids were kids, around the age of 10 or even earlier. Does any of the things that you are seeing or hearing seem familiar?  I know they do to me. I may be looking at the physical body of a 19 year old but that's not who I'm talking to. We know that psychosis effects cognitive thinking and in my opinion stunts their cognitive growth. Since my son started showing outward signs at age 12, I estimate that his cognitive thinking probably stopped developing properly even before that. Do you remember what it felt like to be 10? Insecure about how you looked, paranoid about what others thought of you, angry at your parents for treating you like a child, wanting any type of control over a life you had no control over. How about wishing you had the power to control other people so you could make them do what you wanted. Wishing you were some type of God. Wishing you could fly like you did in your dreams. Emotions you couldn't control or even understand. How about the temper tantrums? You can't tell me what to do. I'm old enough to make my own decisions. The inevitable I hate you. How about the lack of basic hygiene. Does any of this resemble what you are seeing now? It's unfortunate that his birth certificate says he was born in 1994 and therefore is legally an adult.

All I can do now is try to have reasonable expectations from my little man or big boy, however you want to look at it, and try to teach him how to cope with a disease he doesn't see because of anosognosia, denial or impaired cognitive thinking. I just reread that last sentence and thought that doesn't really  make sense. How can I do that? I don't know. I will do my best to keep him drug free, on his medications and help him to learn how to take care of himself. Baby steps. I will count the good things and acknowledge the progress we are making. He's currently without marijuana. He's taking showers. He's brushing his teeth. His nails are cut. He got a haircut. He's eating his dinners and sleeping at night. He even gets out of my way now when I'm cleaning up his messes. Next step. Getting him to clean up after himself. I can always hope! How about teaching him basic manners. No swearing at mom, talk to me with respect. I can forgive little outbursts but next time try harder. Saying thank you. I have a husband who thanks me for every dinner I put in front of him. I'm glad my son sees this and he does thank me more and more for things I do for him. He always was polite. How can I expect to teach these things if there's an impairment getting in the way? Repetition. Two years later my husband is finally starting to pay attention to the messes he makes and I think children learn faster so there is always hope. Adjusting my own expectations I think is key. I've ranted on occasion over the last couple of years how odd it is that we expect our children to be more mature and responsible then most of the adults in our life. Clean up after yourself, you should see my kitchen cupboards after my husband makes his lunch or morning coffee. Don't get your fingerprints all over the wall, my front hallway is nothing but job site dust. How about don't tell lies or make up stories, have you listened to adults gossip? Mostly I think I need to not get cocky. Not forget what I'm dealing with. Don't think it's been a good day/week so I can take a shower and leave my purse unattended. Remember temptation. We had to baby proof our homes when they were infants because hot things and electric outlets just seemed to attract them. Honestly just today my son had to touch the deep fryer to see if it was hot. Deep breath, count to ten... Think wouldn't it be nice if we could all be on anti-depressants. Just kidding... maybe not.

As for my sons belief system. I can't change it. I can only try to give him direction and in my opinion logical suggestions, other ways to look at the same thing. Be an investigator and debater. Ever do this in school where you had to argue a side of something and you didn't get to pick which side. You had to get the facts and build a case. Don't be afraid to ask questions. That means you are listening and your loved one should respond to that. Maybe you will hear things you don't want to hear but guess what, you asked. How else are you going to get even a small idea of what is going on inside that head. His delusions that he is a shaman healer and will one day rule the world. Who knows, maybe one day it could be true but for now I just try to slowly deflate that bubble instead of bursting it. I try to put in place some boundaries. For example my soul is mine alone and no one not even him has the right to control it. I explain that I live in this physical world and the laws of physics have to be followed. Gravity exists here and I don't levitate. No I don't feel his power and I have no reason to lie about it. He accepts this as he is not lying either. In his reality he can levitate. I also have to remember that his schooling knowledge is limited. What age do you learn about gravity and physics in school? I don't remember. He hasn't attended school full time since before grade 8.

Most of all remember to give love. Even as infants when they pulled our hair and we got mad we still knew that they needed to know we loved them. When he comes to me to give me a hug, I stop what I'm doing and hug him back. It's maybe 30 seconds but it's the reassurance we both need that no matter what else is going on we have love. I will need to count on this love sometime in the future when things get complicated again and I need him to know that I've made a decision he doesn't like because I love him and I'm trying to protect him. We do have another common interest. Keeping him out of the hospital. I need to reassure him that this is something I don't want either. If taking a pill or seeing the doctor will help stop this from happening can we please try. This is the partnership we need to work on and strengthen together.

I only meant to write a short note and it seems I have touched on so little. And barely over two weeks into living with this as a part of my daily life. I can only promise myself to keep it up as long as I can and hopefully I will make a difference. See where I'm at two years from now...

For those without family and friends who are going through this alone I can only hope that somehow they can get the help and support they need.

Remember these are all my own opinions and should be researched and discussed with professionals.

Mom
BarbieBF

© May 2013

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