12) In Time (7-9 Months)

In Time (7-9 Months)

I was looking through some movies, trying to find one my husband and I haven't watched in awhile and the title of one got stuck in my head. In Time. It's a 2011 movie where you stop aging at age 25, then the currency you live on is time.  If you run out of time you die. Since then I have randomly thought about so many things connected with time. Our whole lives are made up of the passing of time or kept track of by time. Moments in time. Time for this or not enough time. Every day it passes and it doesn't care if we can keep up or not. I know that time moves differently for my son. For that matter it seems to move differently for me and my husband too.  I find that sometimes I really have to think about how long ago something happened as something that happened years ago can feel like yesterday and vice versa.  According to quantum physics time is an illusion.

So it's been about three months since I wrote my last chapter. How time flies... Sometimes I feel like I may be in a bit of a rut. If it wasn't for my husband going to work then the days of the week would probably not matter to me. One day I thought about joining Twitter just so that I could tweet the Dr. Phil show. My best friend thought the conversation I had with myself regarding this was pretty funny. I thought to myself "Barb maybe it's time you went back to work if you are thinking about joining Twitter just for that reason." Of course I joined Twitter but so far I have not tweeted the Dr. Phil show. As with most things I find myself doing lately it ended up being centered around mental health awareness and fighting stigma (I prefer the term prejudice) or spreading knowledge. Although I am following Dr. Phil, Ellen DeGeneres, some friends & family and my favorite TV shows. Which means I still do have somewhat of a life. I know the time is coming when I will have to start making some decisions on my future and my sons. As much as I love spending my time on schizophrenia forums, Tumblr, Facebook and now Twitter, it isn't a long term goal for me. Same with my son. As much as we have settled into a pretty good routine with only small hiccups here and there, the time is coming where I will have to push him and myself to do more.

On November 5, my son sat beside me on the couch and talked to me about how his mind is a lot more silent than it used to be. He told me that he used to be afraid of that happening, that he didn't want the silence. I can understand this. I still have a poem that I wrote a long time ago about how loud the silence can be. Having conversations like that with him makes me stop and think. I know what it's like to have my thoughts race when I'm trying to go to sleep.  My mind just won't shut up. Then I think about what that would be like all the time. Having your own racing thoughts getting in the way of everything that you are doing. Random thoughts that make you forget what you were about to do and it's happening all the time but it's normal and there is security in that. He told me that because his mind is more silent, he can concentrate on other things now. He tested it by just sitting there and listening to the sounds around him like the ticking of the clock and outside noises. I asked him how he felt about this now that he has experienced it and he told me that he found it peaceful. That he was happy with his life.  He didn't comment that my eyes filled up with tears. Maybe he didn't notice but I did. To think that my son probably for the first time in a long time was at peace with himself and the world around him. My heart ached for him. He talked about how he can feel himself maturing and that maybe he could write a book about growing up to help others. I told him that was a great idea and offered that if he wanted he could include it with my book or keep it separate. It was up to him. He seemed to like the idea of including it with mine. It would be an honor to share this with him one day.

In this we have time. Time for him to learn what it is like to be at peace. Time for him to enjoy just being himself. If that is playing online games and spending time with me and my husband just watching TV or going grocery shopping, then for now it is a blessing. Soon enough I will have to think about schooling of some sort as he does need an education.

As I stated we have settled into a pretty good routine. Although it's a routine of not doing a whole lot. I sometimes wonder where my days go as even though I write down on a calendar what needs to be done, I forget to look at the calendar, therefore I miss doing things like going to the hospital on the correct day to pick up my son's Clozapine or being a day late going for his blood work. Thankfully this has not had an impact on his treatment. Once I noticed I was missing these things I now make sure to look at my calendar every day. I haven't had to note to much on it lately regarding my son's cause and affect symptoms. Over all he has been on a pretty good routine of getting his sleep and eating. Showering a little less than once a week but I blame myself for that as again I wasn't looking at the calendar and noticing how long it has been between them. I try not to push him to hard, just keep giving him reminders. Same with his laundry. If he runs out of clean cloths, then he runs out. It may take a couple of days but after a couple of reminders from me, I will hear him sighing as he gets it ready.

I'm learning to take the hiccups in stride. Averaging about 2-3 a month. Nothing serious. A couple of days of drinking daily and/or some marijuana use. I asked for his sobriety ring back some time ago when I was able to confirm that he had used marijuana. That is the condition of him having it, that he be street drug free. I have found two pot pipes in the last three months. Once because he kept his jacket on all the time. Red flag. He is either keeping his jacket on because he is experiencing cold sweats from withdrawal/anxiety or because he is keeping something hidden from me and therefore on his person. In this instance it was probably a little of both. So I searched his jacket when he was sleeping and found the pipe. I threw it out and when he got up told him that I had some bad news for him. I told him that I had found it and thrown it out as it is against the rules for it to be here. I still get a chuckle over his response. He said: Ok, so what is the bad news? The next hiccup was again over marijuana. I was tidying up his room and found a pipe packaging. He tried to tell me that it was old and from a long time ago. I know better and asked him if I had stupid written on my forehead. We have an understanding that when it comes to drugs and alcohol he will lie to me. It took me a couple of days but eventually I was able to search his room and found the pipe along with the medications he wasn't taking. I didn't get mad. Threw out the pipe and asked him again to not hide from me that he isn't taking his medications. Just leave them in the dish... He told me that he likes being ninja about it. I remember when he was younger and I would find him sneaking out of his bedroom at night with socks on because he was trying to be ninja. We both had a chuckle over that memory and he acknowledged that even though he wants to be ninja that he knows he will eventually get caught. So there have been little hiccups regarding alcohol and marijuana use. I take part of the responsibility as I let the boundaries slip a little bit and when I do he takes the proverbial mile (Give a man an inch and he will take a mile). Once he asked if we could take him to the beer store for a 6 pack. It had been awhile since we had given him the benefit of doubt so we took him. He walked out with 24. They lasted two days between him and his friend. Resulting in not taking medications, not sleeping right, not eating right, napping during the day and making more messes. The next time he asked for a ride to the beer store the answer was no. Of course he walked there and I told him that I didn't want it in the home. He brought it in anyways because if he left it at his friends it would get drank without him. Then it was being put in the fridge. Then I notice that at 10:30 am my son is sitting on the couch drinking a beer. I had let my guard down and let the boundaries slip. By the time I got the alcohol out of the home he was 3 beers in. So now here I am having to reinforce the boundaries with some new ones being added. No more alcohol in the home. Period. My husband and I haven't touched alcohol since before my son's last break, so not since August, 2013. One day he went to the beer store or liquor store and when he came back brought it into the home. I find in situations like this I sometimes have to go a little overboard. If I allow it even for 5 minutes then that proverbial inch gets pushed into that mile. I made him leave with the alcohol and made it clear yet again to his friend that if he allows my son to drink there that he stays there for the night. In between I'm getting the attitude that he pays for this place so he has rights too. Not so much. Even if I was renting his room out to a stranger I would still, at this point, insist on an alcohol free environment. Just because alcohol is a legal drug, I'm still within my rights to say I don't want it in my home, no different than any other street drug. So he spent the night at his friends. He came back the next morning and apologized for the day before, even asked me if I wanted to check his backpack for alcohol. That he is sober now and he is ok. I also apologized for coming on strong and explained why I did. I had to give my son a lot of credit here. How many adults do you know that would speak an apology so easily? I can't say that I know of many, including myself. Although he is a smart kid... I found half a bottle of vodka in this room when he went for a bike ride just because he was bored (red flag)... Remember that understanding we have about him lying to me about drugs and alcohol? I guess it's more my understanding that he will lie to me about it. Every time. Does he understand the rules? Yes. He is well aware of what I expect but choices not to follow the rules because it goes against what he wants to do. I poured out the vodka and warned him I will be searching his room for marijuana as he is walked out the door saying he doesn't need to put up with this shit. Any of this sound familiar? He hadn't been taking his medications as prescribed either. Something that I find hard to take is that his cognition works more than well enough when he is trying to manipulate me into a sense of complacency. The last time he brought in alcohol, that I know of, he actually saved me the trouble of looking for it and handed it over. Keeping my guard up all the time and constantly being on the lookout for the red flags can be a little tiring.

So yes we are experiencing hiccups but they are still nowhere near the rollercoaster ride that we have been on. I think he is even gaining some insight, above paragraph aside. During one of our last psychiatric appointments I noticed him saying: My schizophrenia... He has told his nurse and psychiatrist that he doesn't think that he would have been hospitalized so many times if it wasn't for the marijuana use. That is pretty huge in my eyes. Even his last hospitalization he doesn't completely blame on not eating or sleeping anymore but instead talks about the big bag of marijuana he had (Yes I found it and threw it away). His first psychotic break he was catatonic (he did not move for 24-36 hours). When asked about it now he says: Yes I was pretty out of it. I was pretty stoned. I don't doubt it for a minute that he got himself extremely high and that this triggered his first psychotic break. Once I asked my son's nurse to talk to him about what is happening in his brain with respect to neurotransmitters. I know that sometimes my son will get upset with me when I'm trying to get him to take medications. He tells me that he doesn't need fixing. I agree that my son or his personality and character traits do not need fixing. I do however believe that his brain does not function at its best. I recently watched a video on youtube.com that I was very impressed with. It pretty much put together a lot of the research that I have been trying to do on the science of it all, into one hour long video. It is a professor at Stanford University giving a lecture to his students on schizophrenia. If you search Professor Robert Sapolsky on youtube.com you should find it along with 20+ other lectures that I plan on going through. I won't type it all here as you can watch the video and get a better understanding than I can provide. I wanted my son to understand that it is his dopamine, serotonin and glutamate neurotransmitters that we are trying to regulate. Not his personality or beliefs. His nurse said something that really struck home for me. He basically said that medications can't change your beliefs. No different than a diabetic taking insulin to regulate their sugar levels changes their beliefs. This really made me stop and think. Does chemotherapy affect a cancer patients belief in God? Having cancer itself may have an affect but not the medications. Does me using tinctures to help me deal with menopausal symptoms change my beliefs?  I can say it doesn't but it helps me be less symptomatic or irritable. Does my husband's use of Cipralex for GAD (Generalized Anxiety Disorder) affect his love for me? No, if anything it helps him be more loving as his anxiety is not getting in the way. In these situations a medication is trying to take care of something that our bodies are not taking care of as it should. That doesn't mean we are broken just not functioning at our best.

I don't know if I'm back to basics on my beliefs on what is happening or just getting a firmer grasp on what they are. Disease or spirituality or evolution? From the beginning I think I have tended more towards the science while trying to take his spirituality into consideration, or have I? I'm not sure anymore.  I can now look at them separately. Granted one seems to have a dramatic affect on the other. Is that not the case with other things as well? When my menopausal symptoms are flaring up my basic belief of trying to act with love and patience gets clouded by my irritability. Would my son be on such a quest for knowledge of the spiritual and the afterlife if he didn't have schizophrenia? I don't think the quest is the issue. It's the all consuming dogmatism (the tendency to lay down principles as incontrovertibly true, without consideration of evidence or the opinions of others) with which he can do it at the expense of his physical well being. I still toss around the theory that schizophrenia may be an indication of where evolution is taking us. How long until nature corrects itself? I don't have 100's of years for evolution to make the rest of the brain catch up with overloaded neurotransmitters or enlarged ventricles and prefrontal cortex. Now my beliefs come into play. If I believed wholeheartedly that we are nothing but energy in physical form and if my son committed he would exist on a different plane.... even if I did, I still wouldn't accept the loss of my son in this physical world in the name of spiritual growth or knowledge. There is nothing right about 1 in 10 committing suicide. I have seen my son stable on medications and that is when his personality really starts to shine through.  In being stable he didn't change his beliefs and he didn't stop questioning his knowledge of the afterlife. He just doesn't do it 24/7. Let's face it. It's a quest he will never be able to find the answer to 110% until he gets there. What if we are all wrong and there is nothing after death? Scary thought I know but for arguments sack, what if... Things that make you go hmmm... What if in our quest to belief there is more we ignore the possibilities that maybe, just maybe, this is all there is and nature has messed up. I was curious so I looked it up. 3% are born with severe physical disabilities. Current statistics for schizophrenia is 1%. Can nature go wrong or is it evolution? I'm not even sure I would believe at this point that what we are dealing with is nature at its best. We humans and our technology and disregard for earth have made our impact on nature. As always, more questions than answers.

We made it through Christmas and New Year's... Actually I think we had a pretty good Christmas. The first year in a long time that I had the time to enjoy the season without the responsibilities of work getting in the way. My husband said to me once: You are going all out this year. I wasn't rushing to find time to shop or decorate and I actually got to spend time enjoying just looking at my decorations. Thanks to the dollar store I added to my village this year and was able to put together little stockings for some of younger kids in our family.  New Year's was spent at home. I did drop the ball a bit where my daughter is concerned. In getting her parcel out in time I don't think I put as much thought into her presents as I should have. I will have to work on that. My son seemed to enjoy his Christmas. I think he took as much pleasure from the gifts he picked out for me as the ones he received. The very odd time that I get company he shows them what he and my husband got me. He picked out a game card for me to use on my Facebook games and a holographic picture of Elvis Presley and friends. Left a drawing of a male body part in my Zen Garden. We are both enjoying the tea set my husband got me from Teavana. He thinks the tea cozy I knitted for it is cool. He's been using the face grooming kit we got him.

He seems to be getting a lot more enjoyment out of the little things now. A new pair of winter boots, as he didn't have any, that a month later he is still commenting on how much he likes them. He still wants the big things... It's his twentieth birthday in four days. Got him a ring last week for it. This one has no conditions like his sobriety ring and he really likes it. To a certain degree I was a push over. He was actually liking a fifty dollar ring so I figured I should get it before he started looking at a two hundred dollar one and got his mind set on that instead. Now he wants a Play station 4. I knitted him a ski mask out of wool that he picked out. Pretty colorful. It was right after a cold snap. He even did a load of laundry so he could wash and shrink it since I made it too big. He was pretty impressed with it, so was I since I didn't really have a pattern so it was a lot of guess work. Sometimes he even comments on that fact that he is learning to like vegetables. Takes his multi-vitamin with minimal sighing at mom. There are a couple of TV shows that he likes to watch with us. So now I will sometimes have my husband and son asking me if I've downloaded anything new to watch. They have a friendly competition on who will eat the cookies or treats first. My husband usually has to go to my son's room to find them. It used to be my husband playfully blaming his messes on my son... now my son is starting to blame his on my husband. Today my son learned that mom sometimes knows what she is talking about. He couldn't get some songs to work on an MP3 player. Spent hours last night trying. I asked him this morning if they were in the right format? That is not the problem it's the MP3 player. It's broke. Turns out I was right. The songs were not in the right format. Glad we fixed that as he was eyeing my iPod. He agreed that sometimes it takes a mom just like when he and my husband can't find things in the cupboard or fridge.  He said it....

This morning my son asked me: Why doesn't the number 6 like the number 7? Because 7 8 9.

My son's previous caregiver and Grandmother had a couple of heart attacks. She is recovering. I know this may sound selfish but my first thoughts were wondering if we were going to have to deal with a break if she didn't recover. Based on my son's belief system I could see him wanting to go into psychosis so that he could again be with her in the spiritual world. I had been asked to not tell him but I could not lie to him. He handled the news well and stated that he would have been upset if she had not recovered and no one had told him the truth.

A couple of months ago I realized something. I have talked about the reason why I don't like my son sleeping on the couch. Not his fault but he sweats a lot while sleeping. I had been attributing the sweet smell to his medications. Then one day he was eating something with the hot sauce he so loves on it and I got a whiff of it. It smelled the same. For me, I like these little reminders on how easy it can be to blame medication for things that may be from other causes. It's also a lot worse when he has been drinking. The night sweats have been a normal occurrence for him since he was a child. I had forgotten that until recently.

I haven't written to much about my son's best friend who lives across the hall. I have blogged about it when my frustrations are high. This friend has also been diagnosed with schizophrenia and drinks and smokes marijuana. We have butted heads on a couple of occasions. The first time it started with him coming into my home, under the influence and telling me how I shouldn't be giving my son certain medications and that drinking and smoking marijuana was ok. I recently had to put my foot down a bit as it was becoming a regular occurrence to have him at my door asking for cream, sugar, coffee, milk, toilet paper, beef patties & noodles when hungry and munchies when he is stoned. He asked my son why I was being so mean. I'm trying to teach my son responsibility and that if he decides to spend his money on alcohol then sometimes my answer to going to the store on my dime, is no because I didn't make the choice to spend my limited amount of money on alcohol. Same with this friend. He can ask my son to go to the beer store for him which is a lot further so he can ask my son to walk to the corner store for milk, etc. Recently we butted heads again. While under the influence he physically went at my son. This is not the first time that he has done this and gets hurt in the process. Then it's how he was only play fighting and how my son shouldn't hurt him and tries to make my son feel guilty. A couple of days later after threatening my son with charges he is back at my door. I had already told my son that I would be discussing this with his friend the next time he comes over. Needless to say that didn't go well. I got told that it was only play fighting and everything was ok. Then I got told in my son's room, in my apartment, that it was none of my business, that he was there to talk to my son and not me... I asked him to leave and due to ensuing attitude he is no longer welcome in my home.  Yet again threatening charges as he left. My son went to see his friend afterwards and that day and the next consisted of them smoking marijuana together. As much as I have empathy for this friend's situation I will demand the same amount of respect from him as I would my own son, especially in my own apartment. Tell me it's none of my business when I'm the one taking care of him... As you can tell I'm still peeved at that one.

While my son was inpatient a referral was done to transition him from the early intervention program into a program called PACT. Early intervention is for the first three years and my son is now past that.  I can't say my son is overjoyed about this transition but he is willing to give it a try. He doesn't like the thought of switching workers now that he has gotten used to everyone. I'm extremely hopeful of this program. They offer a lot more support. That is one of the reasons my son is putting up resistance as he doesn't think that he needs that much support and they talk about how they can see him a couple of times a week, even more, if needed. His nurse came by last week and introduced him to his new full time nurse from the PACT team. This week he meet with another nurse who is his old nurse. He switched programs and is now a part of PACT. It also means a new psychiatrist. I will also lose my support worker. A little sad about that but we need to move forward. With PACT the psychiatrist can even do home visits. They have group outings that they do every week. They will even pick my son up for them. They have a lot more support staff including more nurses, occupational therapists and peer support. I'm kind of excited about all this. My son may be stable in regard to his schizophrenia but I'm afraid that if he doesn't start building a life outside of online gaming, alcohol and marijuana then he could very easily start to go backwards in his recovery. He needs new friends. Friends who are in recovery and trying to make a better life for themselves. He needs things to look forward to. He needs to see that there is a whole world out there beyond this apartment and next door. I told him to take advantage of the help that is being offered as a lot have to make this transition on their own. Yes it can be scary but now is the time to do it. I also talked to his new nurse about schooling. I don't want the role of being teacher interfering with my role as mom. Hopefully I will have a lot more to update in my next chapter regarding PACT. I think they are coming on board at a very good time.

My son is slipping a little bit. Staying up really late and sleeping, napping the day away. A couple of weeks ago we agreed that he have control over his Gabapentin. I guess because of the two days smoking marijuana his anxiety/withdrawal must be high again because I noticed that he went through a lot of Gabapentin. Chewing tobacco again and/or smoking cigars. A way of compensating for no marijuana. I won't touch it but based on the nicotine content of chewing tobacco I can just imagine the head rush. For those who smoke do you remember your first one? The head rush? Now times that by 15 or 20. I've had the psychiatrist tell me that I shouldn't be concerned about the interaction between Gabapentin and drugs or alcohol. I humbly disagree as I do read the forums and I know what my son tells me and what I see. I have seen him take Gabapentin after not taking it for awhile then do some chewing tobacco.  He felt high. Based on what I saw, I would agree. Same with alcohol and marijuana. It seems to intensify the affect. He seems to be being medication compliant outside of his Trazodone. Sometimes he doesn't take it or just takes 100 mg. While other nights I think he has taken the prescribed 200 mg. His psychiatrist didn't seem to concerned about this so I'm doing my best to take it in stride. When I check his dish the next morning usually one or both are still in there or somewhere on his desk. Basically it's fingers crossed that he isn't stashing his more important medications so that I don't know he isn't taking them. I guess only time will tell.

So we are nine months in and five months since he had his last break. When I tease him about him needing to get a job because he is expensive he sometimes agrees. I almost had him applying for a part time job before Christmas but he changed his mind so I let it go. Today he said he is thinking about it. A big difference from four months ago when he was thinking he needed a break from everything and was planning on spending the next year playing online games. I certainly don't miss all the negative attitude. I don't think he misses it either. We rarely even butt heads anymore. To see my son recovering and to see his personality shining through makes it all worth it. We are doing good, really good, knock on wood... Until next time.

Mom

BarbieBF

© January 2014