Saturday, December 27, 2014

Why am I never bored?

My son opened his presents on Christmas Eve. He really liked his tobacco pipe and accessories, was pleasantly surprised by his pocket watch and not surprisingly hasn't touched or looked at his Lego's since opening them even though he seemed to like the idea of getting them. 

Christmas day passed fairly quietly. I spent most of it in the kitchen. Started the turkey around 11, then made breakfast. Most of the afternoon I spent doing dishes, checking the turkey and then after our turkey dinner, which my son really enjoyed, was more dishes and making turkey soup. I think I finally finished in the kitchen around 9:30. 

Last night we had a short conversation about the fact that he is bored with life. He asked me if I was ever bored? Rarely... I'm capable of filling in my time quite easily. I have things in my life that have meaning for me. The forum and my blog are two things that can take up a lot of my time. I'm also the one doing most things at home and making sure everything is being taken care of. Honestly when would I have a chance to be bored when I have 2 males (and a daughter) in my life keeping me on my toes? I wouldn't mind a little boredom! 

Today my son's friend from across the hall knocked on the door and asked my son to come over... A little while later my son comes back and lies down on the sofa. I'm looking at his face and when he looks at me I can see it in his eyes as well, what looks like the after affect of smoking marijuana. I ask him he smoked and he said no that he had 1 beer. I reply that his eyes are telling a different story. I have been hearing that excuse from both him and his friend for well over a year now and since one of them usually, eventually, admits the truth I doubt that I'm wrong this time either. I have watched my son drink vodka and not look like that but I'm supposed to believe that 1 beer has that affect. That conversation didn't go well and I was called a douche-bag a couple of times and being told to kick him out. This time I grabbed my phone and let him know that I want this on video that I'm sick of his attitude and of him putting words in my mouth that I'm not saying. I got a lovely video of my son giving me the finger! I left to take out the garbage, knocked on his friend's door and let him know that if he wants to give my son drugs or alcohol then he can keep him there that I'm tired of it!

Since then my son has asked to talk about it... Honestly I'm not in the mood. A little while later I get asked if we can do 3 meals a day like in the hospital? Translation can you cook for me 3 times a day? No I cannot. He is quit capable of getting himself something to eat as is evidenced by the items currently left out on the counter. I reminded him that when he moves into the townhouse that he apparently wants to go to so bad that his roommates won't be making him even one meal a day.

I'm not having a good day... If I had somewhere to go, I would be there. On Christmas day my husband broke out in hives. It looks like he is having an allergic reaction to a new medication he is on for ADHD. Yes my hubby was recently diagnosed with ADHD. The first medication made him angrier so he started another one. Christmas day was two weeks on it. Hives in the appropriate places as well as trouble swallowing. We have also decreased his Ciprelax by 5 mg as the goal is to get him off that medication as we believe his anxiety symptoms is related to ADHD so not the right medication. It's a slow process of decreasing one medication while adding the ADHD medication. Obviously none of this is going according to plan either. He has been crankier because of the decrease in Ciprelax and now because of the hives, even though it was working, we have had to stop the new medication. Add hives and non-stop itchiness which he seemed to have very little self-control over not itching and I'm pretty fed up with him too. Do I know what it's like to itch like that? Hmm... I'm a female so certain types of itching are not new to me. I once had an allergic reaction to oxy's and itched head to toe for 8 hours. I've had 20-30 mosquito bites at one time. Yes it's hard but you are only making the hives worse! 

Last night out of the blue hubby's temper flares yet again. Pardon the swearing. Jesus Christ Barb, what the fuck am I supposed to do? It took me about 3 seconds to very sweetly reply with: Hmmm... Go fuck yourself? We haven't spoken to each other since. If it's not appropriate for my son to swear at me, when did it become appropriate for my hubby to swear at me? Simple. It's not. And as is normal this will continue until I fix it... I ended up having to take over doing the laundry that hubby was going to help me with because he didn't have the patience to do it. I don't think that I ask or expect much from anyone and I still get disappointed. Everyone else seems to have the freedom to be unhappy, cranky, moody, angry... and I'm supposed to what?

Now my son is at me to sell the Wii u since it's 'his' that replaced the PS4. Both purchased on my credit card and are here for his enjoyment while in the home but for legal purposes the Wii u is mine. He doesn't want his Lego's either. I would bet my left arm that this has more to do with the marijuana he didn't smoke next door today. We have an Xbox, he didn't want the PS4 and now doesn't want the Wii u. To my knowledge there is no other console gaming system so what is he going to exchange it for since that is what he said he wanted to do. He didn't have an answer for that.

I downloaded the Kindle app for reading eBooks on my cell phone and on my computer today to check out a book that was recommended. I actually downloaded a free romance novel! I haven't spent time reading romance in years and it is something that I miss and enjoy doing very much. So I'm going to go make a turkey sandwich, ignore the 2 males in my life and immerse myself into the wonderful world of romance!

Mom
BarbieBF

Wednesday, December 24, 2014

It's almost Christmas!

I was going to start this post with a rant about my hubby :) but I decided to shorten it to just the below conversation...

Hubby called to ask what kind of hash-browns, the kind for breakfast? Yes. Turkey sausages for breakfast? Yes. I'm thinking: No I didn't spell it out on the 4 item list I gave him because what else could I possibly want hash-browns and sausages for?

We have made it through the weekend and now it's almost Christmas!

I have been managing to get my son to take the Olanzapine at night instead of during the day so that he doesn't have to deal with how it makes him feel ill and depressed because he is sleeping through it. It does mean that he is getting more antipsychotics into his system so that is a good thing. The 5-HTP seems to be helping a lot with his mood and he hasn't complained about being depressed since Saturday. I have also started giving him Melatonin at night which he says is helping him to go to sleep.

My son's case worker is supposed to be dropping by today. Something about the paperwork he previously signed having to be typed out and signed again... As far as I know his treatment team was supposed to have met yesterday to discuss his case and medications. Hopefully she will have some good news or at least news that I can understand and go with regarding his medications.

My son is anxiously waiting until he can open his presents! He has talked us into opening them tonight Christmas Eve which is ok with me. I know that for a lot of places it is tradition to this. He is anxious... or excited because there is one gift that I got him that he really wants. A tobacco pipe. Since I'm not agreeing to his requests for marijuana than tobacco is one addiction that I see little harm in him indulging for now. I'm not sure what the lady's at the smoke shop thought of my reasoning that a 20 year old with a tobacco pipe is better then a 20 year old with marijuana. Haha! Really it's not something that could even be explained to someone who does not deal with mental illness and addiction on a daily basis. I know that it helps him and if it brings him enjoyment then I'm ok with it. I told her that he loves tobacco and he wanted a type of tobacco that was full of flavor. No not flavored, full of flavor! I purposely left him home and left while he was sleeping when I went to get these items. My son in a smoke shop! That would have been a lengthy visit. Plus I wanted it to be a surprise for what it looks like. We got home and right away he is asking if we got it. I said yes but teased him that I had expressed posted it to Santa so he could drop it off Christmas Eve. I would have to say the look on my son's face was pretty priceless. I'm not sure what he thinks of me talking about Santa as if he really exists! What can I say... I believe in Santa! :) Out of the blue though I did get a really big hug as he was so happy that I got it. A genuine hug that I felt with my heart! He has been not so patiently waiting to open it ever since. Is it wrapped? Is it under the tree? Can I look at it?

My son is experiencing voices or auditory hallucinations of some sort. They don't appear to be visual as he doesn't seem to be looking, just listening. Some days he agrees they are there and other days like today says they are not. I think denying them today may be because he knows his case worker is coming. I'm not saying much about them other then to point out that he needs to ignore them when he is walking around so that he can pay attention to what he is doing. They don't seem to be negative in nature right now so I'm going to try not to worry about them too much.

Overall my son seems to be doing pretty good. He is playing on his computer right now. It's a bit off and on as he doesn't seem to be able to stay on for long periods. Before June he could play for hours but now it's usually for 10-45 minutes at a time. He is sleeping at night and getting up on his own during the day. Some mornings not til 10:30 but this morning was up shortly after 6. He is eating good and some days will ask for what he would like for dinner. He is back to saying thanx for dinner. In fact the other day commented that he is going to start saying thank you instead of thanx. Hubby always tells me thank you for dinner. He is picking up after himself more with little prompting from me. One day we also went to the movies so I left him with a load of his laundry to do while we were gone out and to have a shower. He did both. This morning he offered and made my hubby a coffee! Hubby toke him with him to do some last minute shopping and some car stuff. I think it tired him out a bit as he decided to stay home and not go back out with hubby.

Randomly today my son walked up to me and gave me another heartfelt hug! I hugged him tight and then we went outside for a smoke. Had a short conversation about souls etc. He asked me if I was a real soul person? He also said my head was ticking and asked if I was a robot? I teased him that he might be hallucinating if he thinks my head is ticking. He agreed he might be :)

I know for some of my readers that Christmas day may already be here so I hope that you are having a wonderful day with your family and loved ones!

Mom
BarbieBF

Saturday, December 20, 2014

I sound burnt out? Paranoia?

My son playing the Wii u was short lived... about 15 minutes or so. Then he was throwing air punches. I asked him what he was doing and he said dancing. I replied that I have been dancing for over 30 years and that was not dancing, it looked like sparring to me. He agreed. I told him that I wasn't comfortable with him doing this within 5 feet of me so he went to his room. Shortly after he was lifting my husbands weights and I was somewhat shocked by what was coming out of his mouth. Something about inbred ignorants... I think I talked him through that stating that the circumstances of someone's birth shouldn't be held against them and that technically he was born a bastard... He should be sympathetic... Unfortunately the people we were talking about was obviously visual hallucinations.

Shortly after that his nurse called me back. His psychiatrist wants him to stay on Invega injection, he is not willing to give it every 3 weeks instead of 4 however he is upping the dose from 75 to 100 on his next dose. They will be discussing his case on Tuesday! So in the meantime we are supposed to be supplementing the fact that his Invega is NOT working enough with the Olanzapine. Honestly the whole conversation just pissed me off! I let her know that PACT is causing me to lose faith in them which apparently is fine as I don't have to trust them right just let his psychiatrist do his job. This partially in response to my questions/concerns about his serotonin being messed with too much. I seem to be the only one even looking at this and to date no one has been able to discuss or help me with my research into neurotransmitters. Have faith! Not likely. I let his nurse know what was happening and my feelings that we are seriously failing my son here. How can we expect him to keep insight or stay stable when we are not giving him what he needs. All I got in response was her agreeing with my concerns but not addressing them. Humoring me is not going to help my son. I asked on the schizophrenia.com forum if Olanzapine can cause aggression and it doesn't appear so unless in the context of withdrawal. I also fount out that the PRN dose that my son has been prescribed is actually the maximum dose for that medication. Not really reassuring. His nurse assured me that in her experience it doesn't cause aggression. It was more reassuring to hear it on the forum as these are the people taking and experiencing the affects of these medications.

About half way through this conversation I was told that I sound like I'm getting burnt out. I think I sounded mad and fed up. Honestly if they want me to trust them with my son and not be his psychiatrist then perhaps they need to show me that they can do the job. Sorry I know that I'm sounding harsh however I don't see any of them here, day to day, talking my son through delusional thinking or even helping him to understand what he is going through and experiencing. Telling me to not be his psychiatrist when he is mentally ill would be like telling any parent to not be cook, maid, teacher, therapist... You get my point. It goes with the territory. What am I supposed to say when he starts talking to me about entities? Call your psychiatrist. Talk to your treatment team about what they call voices and/or hallucinations. Ask them about dopamine and serotonin. I'm pretty sure he would believe me more at this point as very few on his treatment team have shown much practical understanding of what he is going through.

Basically I was left with the option to give or not give Olanzapine. To use my own judgement. I did give him one since the consensus on the forum was that it should knock out aggression and is giving in the ER setting for that reason. He said at first that it seemed to be helping but then later said that he felt depressed (hello serotonin blocker!) and today told me that it made him feel sick and he doesn't want me offering it anymore. I did end up giving him an supplement called 5-HTP which helps the body to produce serotonin and he said that he felt better after taking it. He wanted me to leave the bottle out... I said no that to much of it may cause mania. I let him know that the psychiatrist had left him on the Lithium in BC as he was worried about a mood component so he may be schizoaffective. My son asked what that was. It's schizophrenia with a mood component like depression. My son immediately said: Then I'm schizoaffective :) I also reminding him that he had missed his Trazodone the night before which might be further contributing to his low mood since it's supposed to increase serotonin. Honestly how am I supposed to not worry about or talk about dopamine and serotonin when the medications he is taking are having an affect on these neurotransmitters?! Wouldn't it be like not talking about the side affects of any medications and having blinders on to not try to understand? Would a doctor tell someone who is taking chemo to not worry about or talk about the fact that it is also killing the good cells and they may lose their hair or get sick? He did take his Trazodone last night and was sleeping at 12:30 and slept until 10:30.

 Maybe I should consider having him go back on the Clozapine/Clozaril as that only messes with his dopamine (if his psychiatrist will even agree now). As much as I'm not liking or he is not liking the Olanzapine it does seem to be helping to calm his voices/entities. It's just doing it with negative side affects and because of that he doesn't want to take it. *fingers crossed* that we get through until Tuesday or Monday if I need to harass the PACT Team :P

On a side note I know that technically the diagnoses is not the important part but treating symptoms is. Still if someone is schizoaffective instead of schizophrenia then certain medications can carry a higher risk of triggering mania as far as I know. Same with not acknowledging my son's ADHD symptoms. Attributing everything to schizophrenia is not going to help my son be on the right medications.

Paranoia... I can't say that I'm seeing a lot of warning signs however I am seeing some indications that it is there. Yesterday he asked me if he could have a weapon for when he goes outside to protect himself. I reminded him that the weapons he is looking for are considered to be illegal and that I don't think that he needs protection here were we live. I hate the fact that I'm constantly telling him that what he is experiencing is a symptom of schizophrenia however that is what I did, letting him know that paranoia can make him feel like he is not safe or that he needs protection.

On a lighter note. We went grocery shopping last night as my son asked to go rather then waiting until today as he has been asking most of the week for treats and I've been putting him until shopping day. I was on the phone with my daughter so I wasn't paying to much attention at the check out... We get home and my son is taking items out of the grocery bags that I had no idea he had picked up. Haha! He probably added $20-30 to the grocery bill... Hubby said he had noticed him doing it but didn't say thing :)

I'm off to continue to ignore or nicely reply with no to my son's fairly constant requests for marijuana...

Mom
BarbieBF

Friday, December 19, 2014

Contract, housing applications & symptoms

My son's case worker was here yesterday. Several things about that meeting are bothering me. As I stated in my last post I had spent some time looking up, printing and filling out housing applications for my son as he wanted me to do. When his case worker arrived and we started going over the applications she asked me if he was officially diagnosed with ADHD as I noted it as a secondary diagnoses along with addiction. Official? I don't know. Obvious? Yes. Why try him on Adderall, an ADHD medication, if one didn't believe that he had it? I guess if the medication worked then his psychiatrist could say: Yes he has ADHD. It triggered psychosis instead. Hmmm... So all the people diagnosed with schizophrenia who's medications are NOT working are not schizophrenic? It's diagnosed by symptoms not the success rate of medications. Wouldn't the same mindset apply to ADHD? Apparently not. Watch my son's leg go a mile a minute and tell me he is not ADHD... Another item was self-harm. Yes my son has superficially self-harmed in 2011. Apparently it's not schizophrenics but people with personality disorders that self-harm. Ahem... Please read some forums. It may not be common but it does happen. I have personal experience with someone who self-harmed. I didn't know about it, at all, and I saw this person daily. Like someone who self-harms is going to do it in obvious spots that show or tell someone that they are doing it? No, it's done in hidden places like inner thighs, under the arm and even on the torso and they certainly don't voluntarily show it to their treatment team as the shame is too great. When it's done in more obvious places then it's long sleeved shirts and no shorts in the middle of the summer or lots and lots of bracelets that cover up the wrists. Unless looking for the signs is someone going to spot this seeing someone once a week or once a month for 10-30 minutes? If not aware it's even possible will someone even think to look for the signs?

Honestly I sometimes feel so mad at professionals who have their blinders on and refuse to see or do the appropriate research into the conditions they are treating and medications they are prescribing. I don't blame my son's treatment team (maybe I do) however I think they need to be more responsible. My son was prescribed Adderall despite the warnings regarding previous psychosis and addiction. Sometimes they will only prescribe small amounts at a time due to addiction. Does anyone know the mindset of an addict? Unfortunately I do. Some will abuse the medication for a week then go the three weeks without, because they know that in three weeks they can have that high again. They have something to look forward to. Really what are weekend warriors? They are users that work all week just to let lose and use on the weekend. The week of suffering and withdrawal is worth it knowing that the weekend is coming. When I discuss drug seeking characteristics with respect to Neurontin/Gabapentin then it's no, that medication doesn't do that. Again read the forums, there are lots of them, with statements like: Taking Gaba and smoking a joint will get you super high...  It amplifies the affect of the alcohol or drug. Honestly forget what the manufacturer says... They aren't the ones abusing it (hopefully ;)). Gaba has the same addiction risk as Aspirin... Right, because no one has ever gotten addicted to Aspirin! (sarcasm) I was actually reading an article the other day on a new concurrent disorder treatment facility in a neighboring district, that treats mental illness and addiction concurrently or at the same time. They had to get rid of un-monitored hand sanitizer because alcoholics were drinking it. Cough syrup! I learned in a recovery class how common it is for alcoholics to relapse because they got sick and drank cough syrup which triggered them. Apparently some forms of NyQuil is 25% alcohol! That's alcohol. What about drug addiction? We are prescribing medications that are triggering drug seeking behavior, because the manufacturer doesn't say it can do this, and dealing with the consequences. Consequences however that professionals, in my not so humble opinion, are ignoring or lack the knowledge or insight to see. Another article I read yesterday was discussing the fact that even though the risk for prescribing benzodiazepines increases with age that seniors are STILL being prescribed them at a higher rate. Sad isn't it?

They want to keep him on the Invega injection which I understand but it's not working. That's another rant ;) I did just call PACT and left a message stating that it looks like the Invega may be wearing off again and it hasn't even been two weeks. He has been doing a lot of just lying around, doing nothing. Never a good sign with my son. I'm also noticing that him laughing, for no apparent reason, seems to be getting more frequent again. I want to be pro-active instead of waiting another week, when he sees his case worker again, and preferable before the weekend. Catch 22 on this one is that we still don't have his disability or drug card straightened out and considering how much the Invega shot is, the oral form is probably just as expensive. *sigh*

Back to his case workers visit that certainly didn't go according to plan. He ended up having attitude about signing the housing applications which started because he didn't think that the level of support that he needs from these agencies is high but should be low. Tried to explain this meant that he would get more help but no... He doesn't want more help. He refused to sign the group home application as he wants his own room. The group home gives him his own room. He doesn't want someone monitoring his medications, a memory of us discussing group homes in August I guess, so it's to late and he is already in defiant mode. When I pointed this out he tells me not to use that word anymore. He gets mad and tries to put of walls to what I'm saying since he can't defend against it any other way. He decides not to sign anything, that he will do it on his own by contacting the government on his own. We explained that these forms (not the group home one but the other two) are him contacting the government asking for assistance for low income housing. He finally relented and signed one of the forms that is applying for housing where 3-7 people share a townhouse. Still refused to sign the other application through another agency for the same type of housing. He can certainly be a conundrum as he is putting up roadblocks to getting what he says he wants. His case worker also tried to talk to him about that fact that he needs to show that he is capable of living on his own before PACT will put him into a living environment that he can't handle. Forms are being filled out that quit frankly state that he is not even capable of taking care of his hygiene without assistance not alone do grocery shopping, cook or clean. A group home is a stepping stone in this goal of his to be independent. Honestly what am I saying... He doesn't want to be independent, he wants no rules and the freedom to get high and drunk whenever he wants.

Since this visit didn't go to well I decided to do something else. I did up a Room & Board Contract between my son and I (and hubby). I think I covered anything that I could think of that has been or could be an issue between us regarding expectations. It outlines what his room and board payments cover and what he is responsible for. Respect, Privacy, Noise, Cooking, Cleaning, Drugs & Alcohol among other things have been spelled out in the contract. One day a week he has to cook dinner, do the dishes and help clean the bathroom (toilet). I let him pick which day he wanted to do these things. He picked Monday for cooking a meal, Wednesday or Thursday for doing the dishes and Friday for cleaning the toilet. He wanted to pick an 'or day' for cleaning the toilet and I said no, it's a 3 minute job. We both signed it and I gave him his own copy. Today he is supposed to clean the toilet... I didn't stipulate by what time... my bad. Haha! Sometimes I get lucky... I asked him what time and he picked 3... then picked 4... I asked why the change? He is going to be thinking about it until then anyways so 4 would be the latest that he could think about it. I'm pretty sure this is an ADHD type of thinking as it's like over-thinking yet without the action because his thoughts and nervous system are not on the same level of stimulation. I said that I didn't get it, why spend hours thinking about something when he could just get up and do it and then it is done and over with... I didn't faint... He said ok I'll do it now. I told him what to do and he did it! Score one for mom! I'm curious to see how many of these things he will do before he starts asking to be paid for doing chores. I did put stipulations in the contract stating that room & board doesn't cover candies, goodies, energy drinks etc unless previously approved. Not because I won't ever get him any but because if I let him he makes it a daily thing and he does need to start learning limits. Once he does take that step out into the real world there will be limits, expectation and rules that he will have to learn to manage and deal with. Poor kid has been getting a lot of no's lately however I can't do it all.

Maybe I will go into my rant/concerns about Invega considering the conversation I just had with my son. I asked him what is happening with his schizophrenia or thoughts considering what I have been seeing for the past two days. He says he doesn't have the want to do things like play his games. He doesn't have the want because his schizophrenia is getting in the way of him doing the things in this reality that bring him enjoyment. He told me that he has an entity standing in front of him and he wants to be able to tell me about him. We ended up discussing words like sacrament and sacrilege that I had to look up the definition for and explain to him that he is misusing words or making up meanings for them which is his schizophrenia. He shouldn't be sacrementing or killing entities. He shouldn't be dealing with them at all if he can't understand that they are not real and a manifestation of his brain producing too much dopamine. He wants to smoke marijuana and get high. I can understand that since his symptoms are acting up and getting high will ease them and give him a break from his voices or audio/visual hallucinations. If he is seeing entities than he is experiencing visual hallucinations. He seems surprisingly accepting of my explanations at the moment that it is his schizophrenia, not real and that we may need to up his antipsychotics to get rid of them before they start to irritate him. Preferable today before it gets bad enough that he may need to be admitted again. If he is admitted again then chances are he will be inpatient for at least 3 weeks which we don't want happening. It's different to have this type of conversation with my son and to have him be open and not deny that what he is experiencing could be schizophrenia. Hopefully we can get this under control before he loses this insight to symptoms. I have left another message with PACT stating this conversation and that regardless of drug benefits, I will pay for a weeks supply of medications, today, as they are needed. On a side note he did drink vodka last night :( Yah, I know. The vodka that he told me he was throwing out early last week... I guess not. I really should have gone looking for it but I have looked before and couldn't find it. I think he only had one or two shots then threw it out. This time I found the bottle in the garbage so I know he did. Side affect to this... He missed taking his Lithium and Trazodone last night and was resistant to going to bed in his own bed. I think he is learning or finding out that vodka is not helping him but making things worse, at least I hope he is. How many times he will have to test that theory? I don't want to know the answer to that. He did take his Lithium when he got up this morning so we are good for getting his medications into him. My concerns with the Invega shot... I like the Invega. He is not getting enough of it which will translate into break through symptoms which will further non-compliance as once insight goes it is gone and takes a lot of work to get it back. Having break through symptoms that can be avoided will only make keeping his dopamine under control all the more difficult.

I think talking about it may have helped my son, for now anyways, as he is now playing the Wii u!

Mom
BarbieBF

Wednesday, December 17, 2014

Can you be my friend? Can I have...?

That was a short lived... Hubby and I went to get my son from the shelter that night after he called me asking to come home. He had called his Nana and she told him to call me, apologize and for him to come home, so he did. I was actually pleasantly surprised when I got to the shelter. It's a different one then the one he went to last time and a lot nicer! It is in an industrial area, therefore not a bad neighbourhood. The grounds were clean and even though I only went in a small ways, I could see a fairly big living area with lots of sofas, a TV and computers. It was decorated for Christmas. He said that the food was great as he had lunch and dinner there. The people that I did see hanging around were certainly a different type then what I say at the last shelter and for the better. Good to know in case we are ever in need of a shelter again that this one would definitely be the one to go to. I did ask him before we left if coming home was what he wanted as I wanted him to be aware that he was making a choice and I didn't want him to do it just because he was told to. He paused for a moment and said yes I want to come home.

I didn't talk to him much that night as by the time we got home it was after 8:30 so bed time for hubby and I. I did ask him if he was craving marijuana and he said yes but not bad. I asked if this whole shelter thing was so that he could find a way to use marijuana as honestly I'm still trying to figure all this out and what his motivation was. He said no. I asked if he could explain what it was then because I don't understand. His anger got the best of him. He was mad at me because I expected him to do what I asked without giving him a chance to do it. Hmm not quit accurate. When I ask him to do something several times with anywhere from 10-60 minutes in between asking... He also stated that I should be more lenient as his mom. I really can't be more lenient without treating him like he is 5 and has a physical disability that makes him incapable of moving. Anyways I'm done being lenient and I told him so. If he can act appropriately at a shelter, which he can, then he act appropriately at home by picking up after himself and being on a sensible sleep schedule. I'm so horrible aren't I? (sarcasm) We agreed on him being in bed by 12 and up by 10. Deja vu! as we have made that agreement before.

Yesterday I set up some alarms on his cell phone to go off when it's time for him to take his medications and when it's time to get up. Yesterday even though I started trying to get him up before 10, I had no luck until almost 11 when I stated that if he didn't get up he wouldn't get the internet back. He got up right away! Shortly after he got up I'm being asked if I'm his friend? Can I be his friend? I told him I will always be his mom first before I'm his friend. Next it was asking me if I would give our neighbour permission to give him marijuana. His idea of being a friend... He can think to plot out a conversation leading up to this type of manipulation but can't pick up his own garbage?!

The last two days have been mostly him asking for things. Money for the store. A trip for cigarettes even though he still has over a carton. A new pen with different colors from Staples. Netflix. I don't remember the other things. Recently I upgraded his World of Warcraft and paid for the monthly subscription and he's been playing Maple Story, a free online game! Speaking of, I need to cancel that subscription. I guess he is now already bored with the new Wii u. Actually I might play it once I'm done this post as I enjoyed one of the games I played while trying to set it up :) I swear I could give him the world on a silver platter and he would still ask for and expect something else. I know that he is having trouble and yesterday I tried to talk to him and explain that what he is feeling is a result of his schizophrenia not being under control. He wants marijuana and he wants me to agree to him having it as a way to deal with his anxiety and stress. I explained that if we do that then we are just treating part of the problem since masking his anxiety and stress is not managing or treating the schizophrenia that is causing it. I asked him how much brain damage he is willing to cause himself by taking this route, that this last break has done damage and it was obvious that it had, which he agreed. I will not agree to marijuana under any circumstances while he is living with me. If you ever need to wonder what motivates my son on occasion (frequently) to want to move, get away from me and this place... I'm pretty sure this is the main reason. Freedom. Freedom to spend his first paycheck (disability) as he calls it on marijuana and get as high as he can with no one to stop him or interfere.

Last night another conversation regarding the fact that he wants/needs more money and this world is messed up if people have to work to get what they want and aren't going to hand him whatever he wants. He wanted me to agree to not take my portion of his next two disability payments. I don't think so. I'm already supporting him with no income and paying for his medications. The bank is closed :) Then it was that he may move back to British Columbia. I didn't even comment or respond to that one. Really what's the point. Nothing I say or do at the moment will be good enough unless it's to give him whatever he wants and to pat him on the head while I walk around behind him picking up his messes and putting him to bed which I did last night at 1.

This morning he actually got up when his alarm went off at 10. He had asked my husband last night if he could take him for a drive today and that was the first thing he asked when got up. Amazing how well his memory works isn't it? ;) Yet it took me 3 or 4 times of asking to get him to pick up his garbage off the coffee table from last night and clean up the mess he made on the kitchen counter. I keep reminding myself to keep my cool and try my best to ignore this type of behaviour as if I ask him to do something and don't turn away or expect him to do it right away, he will purposely sit down and not do it. I'm serious lol I have watched as I sometimes ask him while his already standing up and standing beside the garbage. He will sit down and say: ya ok, in a minute... 15 minutes later when I start to ask again, he cuts me off before I can even get the words out. Tell me that's not defiance at it's best! I remind him that according to him he doesn't do it because I do it and I'm not picking up after him anymore so therefore he needs to be the one doing it.

It's frustrating that he keeps using me being mom as the reason why he doesn't want to do anything yet expects me to give him the freedom of a 20 year old while expecting me to treat him like he is 5. I'm not stopping him from taking this freedom. I spent about 2-3 hours this morning printing and filling out housing forms and applications. Covering a range of services including group homes, shared living and geared to income apartments. He thinks because his Nana got an apartment for $300 then he should be able to as well. I tried to explain that these types of services are 30% of your income not a set dollar amount and he will need to pay for groceries, utilities himself. He wants me doing it and not his case worker from PACT even though I explained that these forms are by referral from professionals, which I am not. So ya back to being defiant about accepting PACT's help. Probably because I told him that I want him interacting with them more even if it's only to go for a coffee and talk. I really do sometimes think that doing something that I want him to do without it being a fight or hassle just might kill him :) I filled out what I could for the forms and left the professional parts blank for his case worker. I was pretty truthful on the forms and I'm hoping it doesn't have a negative result as there was questions regarding violence (verbal & physical) and a history of property damage. Unfortunately the answers are yes.

I'm off to play some Wii...

Mom
BarbieBF

Monday, December 15, 2014

When will it be enough?

Yesterday was interesting and not in a good way. I don't know if it's the Olanzapine/Zyprexa or the energy drinks, 2 a day, that is bringing out his aggression and triggering his ODD (Oppositional Defiance Disorder). I do know that I have been seriously questioning, again, if I should have had him released on Thursday. Per Wikipedia Olanzapine is an atypical or next generation antipsychotic similar to Clozapine and Quetiapine/Seroquel. It affects serotonin and dopamine. I'm beginning to think that between the Invega Sustenna, Trazodone and now Olanzapine that his serotonin levels may be getting adversely (negatively) affected. Although he was showing signs of aggression on Friday, before the Olanzapine (picked up on Saturday) or the energy drinks, when not getting his own way. Perhaps I'm just searching for an explanation where there isn't one and it's just my son's ODD rearing it's ugly head.

Yesterday started off like most days with him getting up around 11:30 or 12 after me putting him to bed at 5 AM. He had taken his Trazodone around 3 when I got up and had him take it so probably fell asleep on the sofa shortly after that. I gave him an Olanzapine. A little while later I don't recall if he asked or I brought it up but he wanted two Neurontin instead of one. I said no, only one as I'm not even sure that I'm supposed to be giving him Neurontin and Olanzapine as his psychiatrist wasn't clear on that. Then I get asked if we can go get cigarettes. He has over a carton of cigarettes however it is not the kind that he wants since I'm guessing after smoking rollies, the ones he used to smoke just aren't strong enough anymore. Two kinds of cigarettes and chewing tobacco = not enough. My answer was that he will have to adjust and mix up smoking the two kinds or go without. I'm not even sure what triggered the first outburst but can you say deja vu? We were outside smoking and he is telling me that he needs more money, that he wants at least $300 a month spending money. Honestly I have a problem with the attitude that the people who are working 10 hour days to cover disability payments with there taxes are worthless and no bodies. Which is what I got told they were when I reminded him that there are people working their asses off who don't have $100 a month spending money. In walks anger and I'm being swore at, being told to watch my tone and not yell, when I wasn't even yelling. I stood there for a moment in a bit of shock as I looked at my son's face, full of rage. I walked away. Next he wants $2 to walk to the store for candy. He has at least 4 different kinds of goodies not including the other junk food that we have. My answer is no because I just can't keep spending money like we have an unlimited supply. Friday I got him a new Wii u game for $75 because he decided he didn't like the one he had previously picked out and that I couldn't return as it had been opened and used, so he ended up with another one. Last night my husband ended up needing to sleep on the sofa as his restless leg syndrome is currently ridiculous at night. It's like sleeping beside mini earthquakes. My son of course is lying on the big sofa. I get up to check and my husband who is a big guy is trying to get to sleep on the love seat. I ask my son to go to his room. His answer: Let me catch my breathe. I can't say how many times I have heard that in the past when my son's ODD was acting up and anything that I asked him to do was met with defiance, not doing it just because I asked him to and purposely making me wait. He gets up and starts telling me to kick him out and send him to a shelter. Not the first time I have heard him ask to go to the shelter in the last couple of days when he isn't getting his own way. I tell him no that I'm not kicking him out and that I'm not playing this retarded game with him again. I'm being swore at again and yes this time I raised my voice and told him that he is losing the internet for swearing at me. He says he can't live here and would rather be in a shelter. So living in a shelter where he is being told what time to go to bed, what time to get up, what time to eat, with no privacy, internet, laptop, Wii and having to be up and out everyday is better then living here? Apparently yes and I'm being told to get the fuck out of his room... He ended up calling 911 asking for assistance on how to stop my illegal pestering that I was hurting his spirit. I went to put some pants on while I listened to his side of the conversation discussing that he has schizophrenia. I went outside for a smoke while we waited for the police to attend. They showed up and the first thing he was told was that there is no such thing as illegal pestering and that he shouldn't be swearing at his mom. They took there notes, chatting for a couple of minutes and asked me if it was ok that he stay. I told them that I didn't have a problem with him being here that he is the one that doesn't want to be here and wants me to kick him out to a shelter.

So now I find myself in a bit of a conundrum (confusing or difficult problem). I'm pissed. I'm pissed because I'm hurt. I'm hurt because nothing I do seems to good enough for him. Because I haven't been being strict on structure and scheduling, I'm having a hard time getting his medications in him at the appropriate times. Because I want him getting all of his medications in him he has been getting medications early as he is not up long enough in the day to accommodate how they are being prescribed. His Olanzapine is supposed to be twice a day, morning and night, with 12 hours in between. He is not getting up until between 11-2 and still wanting his next dose between 7-9. Same with his Neurontin. Yesterday I gave him his next dose early because he said he needed it.

This morning he got up and went to the sofa around 6:30 AM. When he spoke to me it was very nice... Asking if he could have the internet back. I have been sworn at three times since Friday so no I don't think so. I told him at 8:30 that he needs to be up by 9. It's now almost 10:30 and I just got his first Olanzapine in him. Several times I reminded him to take it because if he doesn't take it now than he will not get another one today. From now own he needs to take them as prescribed. He says yes then does nothing. Refuses to take it. I asked him if he was paralyzed. I asked him this because last night after the police left he stated that he couldn't get off the sofa when I asked him to because he was paralyzed. I truly don't believe this as he was capable of talking to me and he was moving around on the sofa, just not getting up, so not paralyzed. His answer to being paralyzed this morning: Yah I guess so as he is stretching and moving around. Really!? I swear my son knows exactly what to do to piss me off. Either way if he thinks that a shelter live is better then this one... Okay. No more sleeping all day. No more staying up til 3 or 5 in the morning. No more getting medications outside of their prescribed time or without his psychiatrists okay. I asked him how the shelter got him out of bed since getting him up has not been easy today. He tells me that it would be easier for him to wake up if he had something to do. Really? What did he do at the shelter? No internet there. Apparently it's still preferable to being here...

What is the conundrum I find myself? I have been told by my son's Nana that if I was to put my son 'out on the street' again that she would step in again. Granted this time I'm sure that the people that actually purchased the ticket the last time wouldn't, considering the outcome. Will this stop her? Good question however I'm not sure that it is one that I want to find out as in the long run it will be my son paying the price as he did the last time. So I'm yet again between a rock and hard place. Try to do what I think is right for the long run and risk more interference or go against everything that I believe to be right so that we don't find ourselves repeating September, October and November. If it happened would I step in to fix it again? If it wasn't for my husband I wouldn't have had the resources to do what I have done for the past two years. Maybe that is my answer. I don't have the resources to continue to fix and take responsibility for choices that I am not making. I truly believe that no one else can provide my son with the same level of care that I can. For clarification I am not saying that I am going to send my son to a shelter. I am just talking out what is going through my mind right as I weigh the pros and cons of what I should be doing next. I am weighing them because if my son decides that he would rather be in a shelter then it may happen regardless of what my intentions are. He made sure that it happened the last time so what is stopping him from manipulating and making it happen this time? Since it worked the last time why wouldn't it work this time?

My son just proceeded to punch the door entering our apartment, hard and twice for affect... Why? Because I'm refusing to give him back the internet. Good reason to vandalize someone else's property, isn't it? I got told that if I didn't he was going to lose control like he did last night when he swore at me and gave me the finger (I missed that) which he just proceeded to do yet again, calling me a fucking slut! What a sweet boy he is... (sarcasm) He was in control when he punched the door and it was obvious that he was. I can't even imagine calling my mother a fucking slut and certainly not for telling me that she deserved to be treated with respect in her own home. Sitting here with my son towering over me, giving me the finger, threatening to lose control, calling me a fucking slut while I keep my own voice neutral and I'm thinking: Am I in danger? Sadly the answer just maybe yes. Awesome isn't it!

The police just left with him and are taking him to a shelter since that is apparently where he wants to be. I tried talking to him while he was waiting for them, saying that I don't understand why he is making this choice. How is a shelter better then here? Because they can give him more. I asked what the more was but he couldn't answer, just more and that he will find out and for me to fucking shut up. I called his case worker while we were waiting and let her know what was happening and that I don't know what to do. The familiar, it's behavioral... Yes I get that but it's being motivated by something. His ODD, maladaptive or inappropriate functioning of his flight and fight response, the Olanzapine or a combination of these with his current instability? The police asked me if he can come back? I'm not kicking him out. I told him he can't come in if he is not in control and that I'm not putting myself at risk if I'm in danger. He didn't like that as in his eyes I'm supposed to lay down my life for him, needlessly if necessary. Who cares how that might affect other people in my life like my daughter or my husband? That's right we are all worthless and nobodies. He is making the choice to go to the shelter. I packed up his back pack with what I think he will need and let the police know about his medications, that he has already taken what he can for the day so if they see him taking more pills to be on the lookout as he already said something this morning about taking enough Olanzapine to get high. Can he contact me? Yes, my son knows how to contact me when he wants something, always has, even in psychosis and he now has a cell phone that I just got hooked up on Saturday under my plan. At least this one I can disconnect, with no penalties if needed. He won't contact me unless he wants/needs something because I am of no use to him when he is like this.

His case worker let me know that his psychiatrist wants him to stay on the Invega shot with an upped dosage from 75 mg to 100 mg. Can't see that going over very well but it's not my call. She will also talk to his psychiatrist and ask if the Olanzapine can cause aggression however this was starting before the Olanzapine and she doesn't think it's likely. I did finally get a call from his disability worker this morning. She is being held up waiting for clarification from disability in the other province stating that she has left them several messages with no response. She can't issue a drug card without reactivating his file and can't do that without hearing back from them. I had told her that I would call disability in the other province to see if I can further it along however now that my son isn't here to help with the call, I'm not sure how far I can get as they will want to talk to him.

So now what?.... FML... I don't know. I guess I will just have to wait and see how things play out. My son started this with I'm sure the same intend as the last time. He is most likely being driven by the want or need to self medicate or satisfy his addiction. At least that is what his case worker suggested and upon further thought she is mostly likely correct. He has never been able to satisfy it very well here but he has certainly tried his best while in British Columbia. I guess I can't blame him for wanting to take what he thinks is the easy route, regardless of the consequences. Hopefully it won't come to that again as honestly it just might take a miracle or some other miraculous event to make me put myself out there like that again. If he stays I will be there by his side like I have been and continue to do my best to give him the life that he deserves but if we repeat September... then maybe it will be time for me to let go and let him destroy his live and others in the process. I guess I can prey for a miracle. T'is the season after all...

Mom
BarbieBF

Friday, December 12, 2014

Have I been played again?

Monday night I lost the battle of keeping my son away from alcohol. He went and got a small bottle of vodka. Not that it did him any good, in fact, it seems to have made things worse and I think he sees that. I asked him yesterday to throw it out as I don't know where it is. He is hiding it somewhere in our apartment building. Mind you I haven't searched his room so for all I know it could be in there.

Wednesday we ended up in emergency and he was formed or sectioned on a 72 hour hold for observation. I don't know if the events leading up to this were real or not. My son was asking for help for what he is going through, which is good, however he was asking for me to allow him to smoke marijuana. Of course I wouldn't agree to this and we ended up discussing benzos. As some of you may be aware I am very much against my son being prescribed these as I have yet to see them do him any good. Still I found myself hesitating and questioning if I should be so strict about them if my son was in a place where he really needed them. He has been wanting Ativan/Lorazepam for awhile now and is more then willing to go to the hospital for symptoms if that means he will get them. He knew that I was relenting and willing to consider it. I was totally caught off guard when he 'opened up' to his case worker on the phone and started talking about what he had been going through for the past 4 or 5 days. My son doesn't open up like that unless he is pretty deep into psychosis and I had not see any signs indicating that he was that psychotic. Still I didn't question and as I listened my heart bleed for him. I fought to keep myself from openly crying as I listened to him talk about how he had been killing spirits and that he had felt suicidal 4 days ago. I was crushed. I felt like both myself and the system were failing my son as here he was opening up and asking for help and we were not giving him what he needed. Later that morning I was advised to take him to the ER as after his case worker had relayed the things that my son had told her, his psychiatrist advised that he needed to be admitted. My son quit happily agreed that he needed to go to the hospital. As I type this I think to myself: Wow, can I be naive!? My son want to go to the hospital... Only if there is a chance to get Ativan. I was thinking with my heart instead of my head.

So I call a cab and off we go. By mid-afternoon he was informed that he was being formed and getting held for observation. His case worker at PACT was sending over a transcript of the things that he had told her. His reaction. Surprised and somewhat upset as according to him he was only there to get Ativan. This is where I'm having trouble. I know that my son was and is experiencing symptoms and voices. I know that he is struggling. I don't know if it is to the extent that he has implied. I have been watching my son and in the past my son's face or more to the point, his eyes have tendency to give away how bad his psychosis is. He will look similar to a combination of over tired and high. His eyes will have a glossed over look. I haven't been seeing this. This time he requested that I be a part of the assessment process. Is it because he thought he had an ally this time in getting Ativan? I hate that I have to question this however when I step back and look at the facts they easily speak for themselves. Other then some excessive foot movement my son was very relaxed throughout the assessment process. He was not showing any signs of extreme duress or agitation. At one point he told a nurse, after me prompting him to be honest, that he had 27 voices. Again my heart bleed, my poor son... Now I can ask myself if he has ever had that many voices? Not that I'm aware of and his answer was so quick, without a thought. He didn't have to think and count them. An indication of truth or lie? I don't know. I can say that he didn't seem to have a problem ignoring them while he spent a significant amount of time on my cell phone looking up a new gaming system that he wanted for being there... Yes I'm naive at times ;) I'm guessing 27 voices would not have allowed that.

Thankfully his psychiatrist sent over instructions that he not be given the Ativan and Haldol that they were going to give him. Instead he received 10 mg of Olanzapine/Zyprexa. Shortly after this I had to leave and had my husband take me to Walmart to get him the Wii u that he had settled on. We are selling the PS4 to help cover the cost of it. Later that night I was getting the phone call: Can you come bring it to me now. Sorry no. We had just gone to bed and my husband had to get up at 2 in the morning to go snow plowing. The next morning I started getting phone calls at 8. Between trying to get the Wii u set up and waiting for a long time for a cab due to bad weather, I finally made it to the hospital around 11 to find out he had been moved to the psychiatric wing. On my way over there I ran into his psychiatrist in the hospital lobby. I asked him what he was planning for my son and let him know that unless he was planning on drastically changing my son's medications that I didn't think he needed to remain in hospital. I did bring up to him my concerns that I have started to question my son's motivates regarding coming to the hospital and that I'm worried he may have exaggerated his symptoms to get Ativan. His psychiatrist was somewhat surprised and said that my son had not asked him for this. No and he won't. My son is more honest with me then he is with his treatment team. He was quit open with me about the fact that he wanted the Ativan and that that is why he was there. Of course he is not going to tell his case worker or his psychiatrist this. He is much smarter then that ;) His psychiatrist did discuss the fact that what he saw when he saw my son didn't support what his case worker had reported. We discussed with my son that he would not be getting a benzo and discussed other medications. He agreed to keep trying the Olanzapine stating that the voices were all gone. Hmmm, 1 dose of Olanzapine got rid of 27 voices in less then 12 hours? His psychiatrist did bring up the Neurontin asking if my son wanted to go back on it. It wasn't said for sure one way or the other however I did start giving it to him yesterday. I will let his team know. Still waiting to hear what is happening with the Olanzapine as the prescription was faxed over to PACT to fill and they haven't gotten back to me yet. It is being prescribed as a prn or as needed up to 2 times a day.

Yesterday was an up and down day. My son and I butted heads when I refused to agree to have my husband drive him around to look at gaming systems. He had decided the Wii u wasn't what he wanted. I got told to F off and he stated that he couldn't live here... Sound familiar? I just calmly said ok and said he needed to call PACT and discuss living arrangements with his case worker. Less then 20 minutes later he was nicely asking me to help him set up the Wii u. I reminded him that he had recently told me to F off and he apologized that he had gotten angry. He has now decided to keep the Wii u! I have tried to talk to him and explain that I'm not sure any gaming system will satisfy him since him feeling like this is part of the schizophrenia. We have been through this so many times. So many items purchased that didn't give him the satisfaction he was looking for.

Last night I don't know what to think of. My husband, after working all day, had to go snow plowing again last night and since my son seemed to be doing good I let him know that I was going to take a sleeping pill if he was ok with that. I actually asked him if he was suicidal and if he would be ok if I did. He said yes. Apparently not. I forget why he woke me up the first time as the sleeping pill affect was pretty strong at that point. The second time was because he had dropped and broke a glass of pop and couldn't clean it up. I somehow muddled through cleaning that up. Not very good it seems considering the glass I picked up this morning.  I woke up on my own at 3 and did my best through my sleep haze to talk him into taking his Trazodone and going to bed. I'm not sure what he was doing at this point. The best I can figure is chanting... Yes chanting or spiritually sacramenting entities. He seems to be stuck on the word sacrament, whatever that means to him since I'm pretty sure he doesn't know what the word really means. I think it was 5 when I managed to get him to take his Trazodone which he told my husband who must have gotten home sometime between 3 and 5, that it probably wouldn't help him sleep. How do you know if you haven't tried? This type of reasoning seems to escape my son when he is like this. Anyways he toke it and was asleep when I got up at 7. Thankfully he slept until 1:40 PM and seems to be doing better today.

I don't know what to think. On some levels he is being very odd yet on other levels he seems to be regrouping or recovering. He has been playing the Wii u for the past hour or so and seems to be functioning well enough. His anger moment yesterday was short lived. I did leave a message with his nurse at PACT this morning that I don't think he is on enough antipsychotics. Speaking off, when I saw his psychiatrist at the hospital he said something about the Invega shot having been upped from 75 mg. I think he was thinking about putting my son back on the Clozapine however I talked to his case manager and let her know that I would rather him be tried on oral Invega before going back to the Clozapine. I like what I see with the Invega, it's just that the dosage doesn't seem to be high enough. Hopefully they will take my recommendation. I did just receive a call from the pharmacy letting me know that my son's Olanzapine will be ready tomorrow as they had to order it. I asked how much? $127.82. Awesome! Another call and message to his disability worker letting her know that we have been trying to get a hold of her for over 3 weeks, that my son has signed a consent for her to talk to me and that this prescription needs coverage for tomorrow. I also stated that Ontario Works will not cover him as he has a pending file with them. Fat lot of good it will do but it was worth a try or two or three... You get my point.

On another note. I'm trying to find us another place to live. It would be nice if something went easy for me! I'm hoping! There is not a lot available in our city. I have found 2 townhouse complexes that I'm interested in. One I'm really liking. 3 bedrooms, 1.5 baths, washer and dryer and unfinished basement with 1 parking spot and a back yard. $400 more a month rent however worth it to get us out of here. Plus it's not to far from the mall so maybe I can look there for a part time job once I think my son is stable enough. Another good note. My son is in the shower! He wants to walk to Walmart and exchange the Wii game I got him for another one that is online. I have bread to start so it can rise while we are gone...

Mom
BarbieBF

Monday, December 8, 2014

Invega Sustenna - going... going... gone.

Since about Wednesday of last week I have been watching my son struggle. At first I thought it might be residual from his break. Symptoms that just didn't want to give in that easily. However it's been about 5 days and each day I can see where they are getting harder for my son to deal with. Voices or entities that are becoming more entity then voice (seen and heard). It's the Invega leaving his system. Oh joy! He is due for his next shot tomorrow however I called PACT this morning and his nurse is going to try and make here today. I have asked if they can give him this every 3 weeks instead of every 4 weeks as he is not going to be able to recover and gain stability if he is having break through symptoms every 3 weeks. His nurse did come to administer the shot. He doesn't like them and wants to go back to taking pills every day. Reminded him he has a tendency to stop taking them, which he is fine with :)

Just found out today that his Lithium was upped to 600 mg per day instead of 300 mg. I found this out through the pharmacy as I was informed that it had been filled and was waiting for his disability drug card. Of course no one has heard from disability yet. His case worker called again and this time left a message with a supervisor. PACT has been trying to transfer his prescriptions to the pharmacy they use however payment for this is still not taken care of. For now I will have to pay for his Lithium and I'm glad that they upped it to 600 mg as maybe it will help him to feel better.

This morning he told me that he was unhealthy, that he could feel it. Each day is questions about the spirits. Last night he asked me about Jesus. Jesus is not a topic that I wish to discuss with him while he is experiencing these symptoms as it's based on his voices/entities and their very child-like and most of the time nonsensical (having no meaning, making no sense) words. He did tell me one day that he thought they were stupid and he admitted today that they were irritating him.

Yesterday we were at the mall and we got our picture taken with Santa. I had planned on us watching the Santa Clause Parade however I seemed to have been the only one up for standing in the cold to watch it so we only watched the first 20 or so floats. After walking around the mall taking care of some things and waiting in line for Santa, my son was pooped out. I did get his cell phone unlocked so that I can add him to my current plan. He wanted a new cell phone but I said no. He already has two cells that haven't been paid for and I have no intention of setting him up with another one that will lock me into any type of contract for it. It will take up to 7 days for the phone to be unlocked then I can add him to my plan, month to month, just talk and text. He doesn't need data since he has a laptop that he can do all that stuff on. I do worry about leaving him home alone now that I don't have a home phone so this way he will be able to contact me if he needs me.

He has been wanting to drink alcohol since the day he visited his friend and had a beer. I think between that and his voices he is looking for some relief. I have managed to talk him out of it so far. His friend popped by the other day then asked him to come over. That was a worrying conversation for me. His friend wants me son to move in with him and his girlfriend. He is also planning on taking over the apartment next door from his dad. Both bad news as far as I'm concerned. I have already started looking for another place to live. *fingers crossed* for me that I find something soon! After that visit my son checked his bank account and somehow had money in it. Talked him out of spending it on alcohol if I got him one of his Christmas presents early which was an upgrade to his World of Warcraft account. That held until last night when I had to remind him that he had promised me that he wouldn't spend it on alcohol and I was holding him to that promise. Of course he asked again today and I said no. Hopefully the shot he got today will help to relieve his voices some so that he doesn't want to medicate them with alcohol so he can relax.

Watching him be so tired today, as I think he had problems getting to sleep last night, is saddening. Even with the Trazodone his mind didn't want to stop and he ended up sleeping on the love seat in the living room. Hubby was on big sofa... Hubby spend some time on Sunday teaching my son how to shave as I wasn't to sure how capable my son was at this point to do it on his own. His cognition/thinking is still not back to normal for him. Today he asked about getting a Christmas present early, any present, to make him feel happy. I gave him one. It was a Hot Wheels race track that I thought might entertain him after he bought some Hot Wheels cars once shopping. He seemed to really like the idea however once it was set up he just found it confusing. Yes this disease is frustrating. This sadness is coming from within and no toy is going to fix it and certainly not if he can't think to even play with it.

I will pick up his Lithium tonight and hopefully between an upped dose of that and his shot today then by tomorrow he will start to come around and feel better.

Mom
BarbieBF

Thursday, December 4, 2014

Hospitals - Good or Bad, Pat Deegan PhD

If you read my last post... I guess I jinxed it! My son has started saying no taking a multi-vitamin. So much for knocking on wood ;) I will keep trying of course!

His case worker was here this morning with some paper work to sign. One was giving them access to help take care of his medications for him by switching pharmacies to the one they use. That way they can be more on top of them and deliver them to him.

She also had paperwork for some group homes and other types of housing. I knew this was coming and I've been somewhat at war with myself on which way to go. I certainly don't want my son and I butting heads as we have in the past and I do believe that he needs to eventually make this step however I decided that for right now, he is not ready. The group home will have expectations that I don't think he can meet right now. The better one will expect him to participate in activities outside of the home during the day which will be great when he reaches the point of being able to go to school or work but right now it will be too much for him. Other housing types involve shared living which I'm sure my son would think is great until it comes time for him to do his share of the chores etc ;) Again something that needs to happen but not while he is still getting his feet back under him. I let him know that for now we are putting this on hold and he was in agreement.

He asked me something either last night or the night before about going to the hospital. First he said he wanted to go for a check up and I let him know that I could arrange this with the family doctor if he feels that he needs one and he said yes. I haven't arranged it as upon further discussion this is not what he meant. He wanted to go and just be there for a couple of days to rest. It's sad that our health care system is so overburdened that the opportunity for someone to check themselves 'for a rest' is not really an option. I reminded him that it doesn't work that way and that he usually ends up in emergency for days until a bed opens up which is not where he wants to be. If that option was available though I would have gladly taken him. I'm actually happy that he considers this to be an option. I remember him telling me after his hospitalization here in September 2013 that he would like to come back and 'visit for a rest' sometime. I don't know what his future holds however hospitals are probably going to be a part of the rest of his life and he needs to feel like they are a safe place to go when needed.

This question got me thinking. I know that on the outside looking in that the conditions one finds oneself while inpatient is not usually ideal. You aren't checking into a 5 star hotel. It's more like a bottom of the line fast food chain... However when you are hungry and it is taking care of your needs then even a fast food chain has it's purposes. Sometimes the good out-ways the bad. I remember when my daughter was in the hospital for back surgery... For days she went through agony because the nursing staff seriously didn't have a clue. Certainly not ideal however it was still the best place for her. Like I said this question got me thinking. There is a lady named Patricia Deegan who has a PhD in psychology and is a researcher. She is also diagnosed with schizophrenia. While watching one of her videos she said something that stuck with me. It was along the lines of not just taking medications or just going to the hospital but using medications and using the hospital. I don't know why but this spoke volumes to me of taking an active, not passive approach to treatment. Of using what is available to ones benefit. Granted my son is far from this, yet, however the hospital needs to feel like a safe place for him and I'm glad that it does.

Some links for Patricia Deegan PhD.

Pat Deegan

Patricia Deegan's amazing story (video)

Mom
BarbieBF

Tuesday, December 2, 2014

Pretty good weekend

The weekend went pretty good. Friday was a good day. My son wanted McDonald's for dinner and wanted to go grocery shopping so he had a shower. Even brushed his teeth without me saying anything. I was brushing mine and he came into the bathroom with me and did his. I'm glad that some of my previous expectations have not gotten forgotten. Going out in public with me requires minimal personal hygiene when he is capable.

He did go see his friend on Friday... He had no idea that his friend was across the hall until someone started yelling his name from outside as no one was answering the buzzer. I guess the concept of no one being available or awake didn't mean anything. So my son heard and of course quickly went to investigate. Thankfully he only visited for about 10-15 minutes before coming back home.

Slowly my son has been getting back into using the laptop. It was good to see him actually playing some games on it although he doesn't seem to be able to keep it up for long periods. The downside to this of course was the inevitable (unavoidable) requests for me to purchase gaming subscriptions for him. My answer was no as I had warned him when he decided to spend the last of his money on alcohol that my answer would be no. This resulted in a phone call to his Nana for money and of course some attitude regarding how much money I was going to be taking from his disability payments. I told him that disability is not paying him for entertainment purposes then reminded myself that I don't intend to be a part of these types of conversations if I can help it, so went outside for a smoke so that I wouldn't be a part of it.

I did end up paying for his Trazodone as he needs it for sleep and I know that it can also help with some of his restlessness during the day. Thankfully it is one of the cheaper ones and only cost me $13.24 and so far he has been taking it without any complaints. He did miss his Lithium one day and the following day stated that he felt depressed so I reminded him that he had missed his Lithium and this may be the cause.

He has been up and down over the weekend. Some periods he seems ok and other times the psychosis is showing itself. Yesterday, Monday, was an off day as the voices were back and he spent a fair amount of the day seemingly wondering aimlessly around the apartment. Not getting enough sleep may have contributed to this as my husband was home from work so we took advantage of this to take an early trip to the disability office to find out what was happening with his file. Of course his worker was off! His file is still on hold which means a drug benefit card can't be issued. We did write a note where my son consented to me having access to talk to his worker and also letting disability know to release the room and board portion of his payments to me as I reminded my son that he had given his word that he would do this. I also had them take a copy of his disability payment from British Columbia and the receptionist noted that his last payment was for December which will probably affect his file and may affect his ability to get drug benefits as well. I was already aware this would probably happen and this is why I wanted them to have a copy of his last payment. I would rather deal with it now then have my son face any type of fraud charges later for not disclosing this information. We will have to contact British Columbia today to get his file out there closed. I let the receptionist know that I had held off doing this in case I could use his medical coverage from out there, here and she said no it doesn't work that way. *fingers crossed* I hear something back from his worker today.

After the disability office we took a drive as my husband needed to get something on the car looked at then we got Tim Horton's and brought my son back home while my husband and I finished Christmas shopping for my daughter. I also got my son a new pair of track pants since he only had the one pair and a new scarf and toque (hat) set. We also got him some Jamaican patties, pizza pockets and stuff to make breakfast sandwiches since going to Tim Horton's and McDonald's will not be regular occurrences like before. I had my son pick from the presents that I got for his sister, the ones that he would like to be from him and got the parcels sent out to my daughter.

Like I said yesterday was an off day. Voices or entities were obvious and he laughed at/with them a fair amount. They were discussing soul sanctums... Trying to understand what is so funny about these conversations is not easy as to me as I don't get what is so funny about soul sanctums. Still I guess if being in psychosis is anything like being high (both are too much dopamine) and having been high myself, yes things like this can appear to be funny at the time. I asked if the voices felt that were he is now is safe as a sanctum is a safe place and he said: yes.. no.. yes I think so. I told him to tell them thank you if they felt that our home was a safe place as I want him to feel safe here.

He's been taking a multi-vitamin everyday, knock on wood! It seems every time I blog about my son doing something that is good and healthy, something happens or he happens to interfere with that so hopefully I didn't jinx it! ;) The Omega 3's he is resisting, saying that they make him feel sick.

I have been trying to get him into bed at reasonable hours however I'm not having to much luck with that. It depends on when I wake up in the night. Sometimes it's 3, sometimes it's 5. One night he ended up sleeping on the small sofa as my hubby was sleeping on the big one as his sleep apnea and restless leg were driving us both nuts! Last night I managed to wake up and get him to bed by 2:30. It's now 12:37 pm and he is still sleeping. I asked him if the extra comforter on his bed has helped and he said yes.

The mess that I ended up cleaning up at 2:30 this morning so that my husband would have room on the counter to make his lunch didn't make me happy. Will have to find some way to approach this as really my husband shouldn't have to clean up the kitchen at 5 in the morning to make his lunch.

I have some cleaning to do...

Mom
BarbieBF