Check in Feb 2021

Almost another year gone... wow.

Not much has changed here. 

It was my son's birthday last month so he's been struggling a bit with his drinking. Meaning drinking too much. A family member gave him all the ingredients for his favorite drink so he went a little overboard with it. As usual it causes some conflict between hubby and I. Not much I can do about that one either.

My son went down 25 mg of Clozapine with his psychiatrists approval and my support. It's my son's goal to go down from 400 mg to 200 mg. Currently at 375 mg. His psychiatrist is being extremely cautious with how often and how much he will decrease which is a good thing. While my son isn't overly happy about it, he is continuing to be med-compliant. I think it's been about 5-6 months since the decrease and I haven't noticed any changes in my son because of it.

I'm grateful that he understands that he needs them, even if only in the context of helping him with his anxiety. I make it clear if he wants to continue to drink and smoke weed then he needs the medications so that he doesn't lose all that he has gained and end up back in the hospital. He in no way, wants to go back to living like that and very much enjoys being able to spend money like he does, so it's good motivation. I was very surprised to hear him the other day telling someone that they didn't need to worry because his pills protect him from schizophrenia. 

He's still working 3 days a week and enjoying it.

He actually took himself to work today for the first time in a long time. Usually my hubby takes him however hubby started his own job last week so he can only take my son on Sat. and Sun. now. 

I guess about a year ago my son bought an electric scooter. Had some issues with it and decided to sell it. Then he bought an E-bike... Decided he wanted a scooter again. So we sold the E-bike and used that money to get another scooter. This time was better as he had more reasonable expectations on what the scooter can and can't do. 

My son still struggles with wanting things, now... However I can't say that is a trait only belonging to someone diagnosed with mental illness. He is getting better at having, a little, patience. Sometimes if I can put off him getting what he is asking for then within a couple of days he will have changed his mind on wanting it. There has been several things over the past 2 months. A new PSP, contact lenses, glasses... His need for instant gratification may never go away as it doesn't in a lot of non-diagnosed as well. Due to the pandemic, some of these things are just going to have to wait, like contact lenses, as the services are not easily available in a way that he can deal with.

Back to my day... Just wanted to touch base and let everyone know that all is good. 

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2021. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.

Least I Forget. Little Reminders. Granddaughter.

For those who noticed that my blog was unavailable for a little bit... For privacy reasons I had changed it to private however even with some of the grief that can come with publicly airing my life, I have decided to make it public again. However please note my copyright notice at the bottom of each page and post. Breaking up my blog into pieces and sharing it without my permission is not authorized.

I know how lost I was when I first starting down this new unknown road of mental illness. If my blog can help even one person to not feel alone then any grief that comes my way is worth it.

On to the important stuff...

My son is now officially living with me and hubby. Still have some things to work out with respect to his disability payments and I'm guessing now a couple years worth of income tax returns. It was assumed that the group home he was living in was taking care of these things for him. They did nothing regarding claiming his income with disability so now he owes disability a lot of money covering two years of overpayments. Since they didn't touch this, I think it's a pretty good bet they didn't do his taxes either.

Because he moved he now has a new caseworker and psychiatrist. His first appointment with the new caseworker was a bit bumpy. Not really her fault however my son got a bit stressed out when she kept asking him about relapse symptoms. It's been years now since his last relapse and as you can imagine, not a place he wants to go to or remember. We made that clear on his next appointment with the psychiatrist and caseworker that that line of questioning will only upset him.

Yesterday my son and I butted heads. It's easy to forget sometimes (most of the time) that he is diagnosed with mental illness and little life stresses can hit him hard. A couple of weeks ago he purchased an electric bike which he has been wanting for a long time. He hasn't been getting the correct amount of charge time. It's all new to me so a bit hard for me to navigate what charge readings mean. Of course he being disappointed got a little bit aggressive in his verbal and body language. I reacted... My bad.

My hubby doesn't handle aggression very well either due to his own diagnoses of anxiety etc. He went to the store and didn't take my son. He almost always takes my son on outings with him. It wasn't intentional however he needed to get away from the aggression my son was displaying.

Next think I know my son is well verbally bashing my hubby. Like I said... I reacted. I don't let anyone disrespect my hubby, including my own children.

Thankfully it didn't get out of hand and once I realized where my son and I were at I turned it around. I apologized to him for yelling in reaction and he apologized for being aggressive.

Still it was a reminder to me that my son isn't mentally 25 years old. Even if he is doing awesome, which he is, he is still not capable of handling disappointments and anxiety the same as someone without mental illness.

I would have to say that I was very proud of his ability to calm down and the two of us talk it out. He recognized that he got aggressive and that he has trouble with anxiety and coping with it.

I was also very proud of him during our meeting with his psychiatrist and caseworker as he seems to have no problem with his medications and likes them because they help him with his anxiety and help him sleep. My son when younger, used to have a lot of issues with his palms sweating. He hasn't had this for a long time now and he attributes this to his Clozapine. Chances are he's right. I have not discussed my son's medications in terms of psychosis since almost the beginning. It's always about the things he can see and recognize that helps him. Anxiety and sleep being the main things. He also stated that without his medications he probably wouldn't be working and he loves his job.

He surprised me even further when he told me that he doesn't even regret being inpatient anymore. That it probably did him some good. This came up when we were at the same hospital he was inpatient at before, waiting on the birth of his niece.

My granddaughter was born last month... Momma, baby and grandson are all doing great.

My daughter is handling being a single mom beautifully. You may recall that she lost her husband in September. I sometimes feel bad that I don't give her a lot of my attention and time. My own little world can get overwhelming at times. Thankfully she has 4 parental figures in her life. One day at church I was asked where my daughter was and I replied: She's at her mom and dads... One can never have too many moms and dads.

My daughter asked me for some help today so I should get my butt in gear...

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2020. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.

Who needs toddlers when....

you have three, one of them a frisky not yet a year old, cats?

Just sitting her listening to Frosty run around, bugging the other two cats while he has one of his frisky moments as I call them. Where nothing is safe and nowhere is out of reach!

I know I haven't been around. Sorry about that... Yesterday I popped onto blogger and noticed the number of times my pages have been viewed. They are all over 400 views! Wow.

I have about an hour in between work shifts so thought I would stop in and say hi. *waves*

I hope that everyone is doing ok, or at least surviving.

Sometimes I feel a bit guilty for not coming here often however for right now my life is not about schizophrenia or mental illness and honestly I'm loving it. I'm sure there will come a time when I'm yet again living and breathing schizophrenia and therefore pouring my soul out here but for right now life is good.

If you are reading, I'm sure you are wondering how my son is doing. Not bad actually. He calls fairly regularly and sometimes when he doesn't want anything. ;)

Financially I'm not helping him much. I try to send him cigarettes every couple of weeks as I know he doesn't have much spending money. He's in a long term treatment facility. He has his own room and a fair amount of freedom providing he follows the rules. If he gets drug tested and it comes back positive then he loses some privileges. His medications are being administered to him. As far as I know he is still on Clozapine and Lithium.

As part of some of the programs or services they provide there, he participates in doing things that pay him a small fee. He goes out on outings like snow boarding.

Recently he started a medication that is supposed to help with alcohol cravings. I haven't looked up which medication. The last time I talked to him I asked him why he was doing it because not wanting to drink doesn't sound like my son to me. He agreed that he didn't want to stop drinking but his doctor wanted him to try it so he is. My theory is that he is hoping that it will get him transferred out of there faster if he does what they want. Either way if it helps... Regardless of his motivation it shows that he is able to look at long term goals and what is needed to achieve them.

I can't wait for tomorrow...

My daughter and grandson have been away since before Christmas! We will be picking them up at the airport tomorrow morning. Can't wait to hold that baby in my arms! My daughter too. ;)

Hubby and I are doing great. As much as we are looking forward to tomorrow morning, we have very much enjoyed our one on one time.

Going to go warm up my coffee and head back to work. I'll try not to be such a stranger...

Love
BarbieBF
Mom
Grandma

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.

It's a little Frosty

I know it's been awhile...

We got another kitten. His name is Frosty. Frosty and Kiwi are great together and have become the best of friends. Still no more visiting places that have fur-babies! :) The vet bills are ridiculous. Kiwi needs to get fixed and Frosty will be next. My daughter wants me to let them have a litter first. No way!



My daughter is 6 months pregnant now. It's going to be a boy. I have felt him move a couple of times! Yup pretty awesome!

My son is doing better. They finally put him back on Clozapine/Clozaril. He still only calls when he wants something. I finally gave in and sent him his laptop. If he 'loses it' then it's gone. I won't be buying him another one like it that's for sure.

He did call yesterday. I didn't answer as we were eating dinner. The next time he called I was in bed. Hopefully today he will call at a better time. I'm guessing it will be to ask for money so that he can upgrade or play a computer game that isn't free.

Summer is finally here! Spent a couple of days rearranging a flowerbed in my back yard. That was hard work. My pansies aren't having a good time of it as they are not getting enough sun. I'm loving feeding and watching the birds though. So far I have seen several types. Other then the finches: blue-jays, cardinals, woodpeckers, grackles, robins, doves and of course the squirrels. One day I even saw a chipmunk but haven't seen him since.

My work has been tediously slow, as too the pay. ;) Hopefully that will turn around soon.

We are getting married next month! It will be a really small affair. We are driving to see my step-mom that I haven't seen in way too long and are doing it there. Yes I'm excited!

That's it for now... Didn't want anyone wondering. Things are going good.

Mom
BarbieBF

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.

Breakfast with voices

Sunday we decided to go out for breakfast. It was me, my hubby, my son and his voices. They were entertaining my son and moderately irritating me. Not in an upsetting way however I did at one point ask my son if he could do me a favor and tell them to go away for a minute as they were pissing off mom ;) I think the waitress had come by our table 3 times and we couldn't order because my son wouldn't stop listening to them long enough to read the menu. Perhaps my request did the trick as he finally paid attention to the menu and made a choice. Saturday when we took him to buy a TV he could barely pay attention to the cashier.

This morning or last night I asked him if he ever tried to ignore them as he will need to learn to do that so that he can interact with people while out in public. He stated that ignoring them would make them worse. I replied that the opposite is usually true. The more attention you give to them the worse they can be and he needs to learn to tell them to leave him alone sometimes. Thankfully they seem to be humorous at the moment although what my son tends to find humorous would probably freak me out ;)

Saturday night and last night he got about 12 hours sleep each night. He took his medications when hubby and I were going to bed. Both nights he took his Invega, Olanzapine and a Melatonin.

This morning I talked to him about his medications. Letting him know that I'm thinking we may need to look at Clozapine again, what did he think about that? He asked if that was a good idea. Well it's either that or we try Olanzapine twice a day as he really shouldn't be dealing with voices like this. He agreed to Olanzapine twice a day. Today he seems a lot more clear eyed and his face doesn't have that combination high/overtired look that I see as psychosis.

I think he finally has his room set up. Mom I need something else for my TV as the dresser is too high. Mom I want a table to put my stuff on. He wanted to use cardboard boxes that I explained wouldn't hold the weight. I had a night stand that won't fit in our room so we put that in his room for the TV. Then I took the draws out of and the legs off of the dresser and laid it flat for a table, putting a table cloth on it. So now he has Netflix and an hdmi cord and can watch TV in his room. He still wants me to get him cable for his room... hmm not likely. Hubby and I don't even have cable in our room as we are trying to keep the bills lower not higher. Besides between Netflix and downloading what could he possibly watch on basic cable?

After breakfast yesterday we brought him back home as he was to tired to go grocery shopping. I did get him a new hoodie and 2 pairs of track pants since his last 2 pairs shrunk. I kept them for around the house since my legs are shorter. Oh... I can say house now instead of apartment ;)

I talked to his case worker from PACT today and let her know what happened. She will follow up and try to get a hold of ADAPT to set something up. Of course my son hesitated this morning when I brought this up. He is so easy to agree to things when he is getting what he wants then.... I reminded him that he agreed and that it is expected.

Next thing is contacting disability. I guess getting my son to call is the best option since his worker hasn't returned my last 6? phone calls. Hopefully I will tackle that tomorrow. Today I actually spend most of the day cleaning and organizing some stuff. Now hubby is on his way home from work so I should start dinner. Steak, baked potatoes and salad. Yum!

Mom
BarbieBF

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.

He is not OK. Medications.

Like the title says... I really wish that I could pinpoint what triggered or caused this to be happening since Saturday night however I think what it boils down to is the wrong medication(s). For two years now I have read articles and stories about the difference that the right medication(s) and the right dose of medication(s) can make.

Currently my son is only taking one antipsychotic regularly and that is the Invega. He does take Olanzapine sometimes but only when I'm able to 'nicely' suggest it so that he can get a good nights sleep. As I did last night and he said that he took one.

In the past my son was the most stable and recovering while on Clozapine/Clozaril and Risperidone. How many of you add these medications to your computer's dictionary so that you know if you have spelled them right or not? ;) In June 2014 before the Adderall my son was maintaining stability and improving on 150 mg of Clozapine and 1 mg of Risperidone. Over a period of about nine months he had titrated down from 450 mg to 150 mg of Clozapine. Neurontin/Gabapentin and Trazodone was also in there however he never took it regularly. So he was doing really good on two antipsychotics that he took regularly. We added the Adderall for ADHD, lost stability and unfortunately have not gotten back to where he was in June 2014.

As most parents/caregivers know med-compliancy is a big part of the picture. What is important to me is not what is important to my son. If you have been reading my blog then you may be aware that I'm pretty sure my son wanted off the Invega Sustenna (injection) as it killed his libido. And yes it hurt to receive it. I have thought about discussing with his treatment team having the oral Invega upped from 6 mg to 9 mg. I did bring this up to his nurse on Monday however and this is a big however... I am worried about the increase having an affect on his libido and therefor causing him to become non-compliant with his medications.

Like I said. What is important to me isn't important to him. Keeping his libido is more important to him then losing his mental health.

Two tweets that I saw recently that apply here where from Dr. Xavier Amador. One stating that between 50 - 75% of those diagnosed with schizophrenia don't take their medications is prescribed. Another stated that about half don't know that they have schizophrenia. From my own research I know that this is due to anosognosia or lack of insight. It's part of the condition itself that stops the person from recognizing that what they are experiencing is part of the disorder.

I forget exactly what hubby and I were talking about the other night but it was about something my son must have said. I joked with my hubby that my son was telling confabulations because he has anosognosia. My hubby didn't understand me either :) This means that he was saying things that appear to be untrue because he can't see that they aren't true. Schizophrenia causes him to believe in things and see things that most of us don't. How realistic they are have little to do with my perception of reality and more to do with his perception which is being controlled by a disease/disorder that changes how he sees things.

Sorry I'm getting off track... Another concern is weight gain and other side affects from these medications. For awhile my son had to wear a belt with his jeans as they were falling off. I think it was two or three days ago that he commented that he needed new jeans because the ones he had on where getting tight. His eating habits haven't changed. What if increasing his Invega causes him to gain weight and become non-compliant due to this? I know on 450 mg of Clozapine he gained weight then lost it on lower doses.

From a medical standpoint or even that of his treatment team my son is stable and therefore ok. From my point of view, he is not ok. I have seen how well he can do and honestly I don't think I'm ready to accept that what I'm currently seeing or what he is experiencing, is the new normal for him. I know that for some voices etc are a daily part of their lives. I don't know... Maybe after his last break this will be his new normal?

So the question is: What can I do? My son IS being med-compliant. I can't risk interfering with that to any big degree. If we change his medications than we may lose that compliancy. Or worse put him on the wrong medication and lose his current stability. I don't even know what medication could be considered at this point. I do believe he has been on most of them. I do believe that Invega is a good medication for him however it doesn't appear to be enough on its own or at the current dose.

For the moment I will continue to hope that what he is experiencing is a hiccup and not long term. Sunday night he stayed up until after 3 AM and got a little upset with me when I pointed out that how he was talking was delusional. Sometimes, when he is doing good and his mood is stable, I am able to point this out to him without him getting upset. Sunday was not one of those times :) When he started telling me what I was saying (that I wasn't saying) I knew it was pointless and he was too wrapped up in what he was experiencing to listen to me anyways. I didn't push it, left it alone and went to bed.

The reality is that I can't do much about it right now. He is in driver's seat when it comes to his medications. As long as what he is experiencing is not bothering him and it's not, then he will not want to stop it.

He does seem to be a bit better today. I think he was playing a game on his computer and he is now watching stuff. I don't think he has touched his Nvidia gaming system in awhile. I heard him on the phone with his Nana stating that technology is boring and depressing. He can't see that it's symptoms of schizophrenia causing him to not get enjoyment out of these things. Schizophrenia can be depressing. I didn't listen to too much of that conversation as it was fairly delusional and it can be hard for me to stay quiet ;)

He wants to move to... Mexico? and live without technology etc., that it would be great. I did point out that the people living in Mexico without technology and basic necessities may not agree with his point of view. Like I said, hard for me to not say anything. I went for a smoke before I could say anything else. He loves technology... When he is healthy.

His case worker at PACT should be dropping by tomorrow with more Invega. She also contacted disability in British Columbia and got a letter from them for disability here in Ontario. *fingers crossed* this gets us somewhere as I have emailed BC again and now left his worker at disability 3-4 messages with no call back.

My son just asked how he could go about getting some money for an online game. Can he do grunt work with my hubby... It's hard to keep a straight face sometimes. I pointed out that I have seen how much energy he has lately, that he is like 'the walking dead' so I doubt that he has the energy for grunt work ;) He will have money when he has money and he can spend his 'just $28'.

What can I say... Life can be tough sometimes ;)

Mom
BarbieBF

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.

Some days I want to....

Do I need a therapist? Anti-depressants? To change how I think? Or just a short vacation from my life? Perhaps just a short vacation. Personally I don't believe in anti-depressants for myself as I feel that if there is something about my life that is making me depressed, that can be changed, then I need to change my life. The problem is that it is not my life or choices that is making me want to bury my head in the sand.

Hubby called and asked if he was supposed to use the credit card for what he was picking up. Yes... The car we looking at buying is currently in the shop being looked over to see what needs to be done... I'm really hoping to hear today if we have been approved for the townhouse...

My son's nurse called this morning. Did you pick up his Invega shot? No I didn't and I don't have $700 plus to pick it up with. There are moments where I'm at war with my own feelings as I can tell you where I would like to send the bills and receipts for what my adult son is costing us, out of pocket, yet again. I didn't make the decisions to put us in this situation...

I called disability again this morning and I actually got a call back! They faxed, I think she said on December 24, a formal request to the office out in British Columbia (BC) asking for information on his file out there. She can't proceed until she hears back from them. I also have tried calling BC (kept getting disconnected) and emailed them. The second email directly to the office he was registered with. I shouldn't be the one dealing with this...

I have no problem with accepting responsibility for my own actions and choices. I have no problem with dealing with the consequences of things that I have done wrong. I am having a problem with being responsible for and dealing with the consequences of other peoples choices.

From day to day I don't know if my daughter is going to be staying where she is or moving back with me. She is 19 making adult choices when she really needs to be parented. I can't parent her from across the country and the parental figures closest to her are seriously dropping the ball as far as I'm concerned. She is being given way to much rope to hang herself with... Honestly I'm mad at myself for not bringing her back with me when I went to get my son. Good or bad I would have dealt with the consequences of that choice. Instead I allowed others to decide and they have not followed through or taken responsibility for that decision. 

Back to my son. Last night he again refused his Lithium as well as his Trazodone. I don't think he slept very well or even very much. When I checked on him early this morning he didn't respond to me being in his room however both of his feet were going... He also got up early. None of these are good signs from my son as it means he didn't go into a deep sleep, if he even slept. What is he doing today? Nothing... Just lying on the sofa. When his nurse called he talked to her and let her know that he is refusing to take the Invega injection. I think she tried to talk to him about coming off the Lithium, that he needs to wean himself off it, which he agreed. Of course he agreed. As far as he is concerned he has already weaned himself off it since he has gone two days without it and in his eyes is doing fine without it. I asked him today if he would be willing to go back on the Clozapine as I told his nurse that he had previously told his psychiatrist that he would so maybe we should consider it. Today he is saying no to the Clozapine. I think his treatment will be discussing his case tomorrow.

I can't see my son maintaining or even staying remotely stable on only 10 mg of Olanzapine. Him laughing out loud for no reason had started to go away when he was taking Olanzapine during the day as well as at night. Today I heard it again. 

So can I be like the ostrich in the picture? I don't know... There is the mom in me that is saying no however there is a part of me that is saying yes... When I decided to have children I did not forfeit my own life. I can love them, try my best to parent them however there comes a time when they need to be responsible for choices that they are making. All my worrying is not going to change those choices or even the consequences. 

Mom

BarbieBF

Hello 2015! CBT and Mindfullness

Happy New Year!

Above picture credit to: freedesignfile.com

I can't say that 2015 rolled in with a bang... It quietly arrived without a lot of fanfare, bringing with it some old and some new.

I don't recall if I mentioned this before but for Christmas hubby and I decided our present to each other would be our wedding bands. He wanted to get me a new engagement ring and since we are legally common-law I thought: Why not go one step further and get the whole set? I'm sure one day we will say our vows but for right now I wanted a ring on his finger too!

We have managed to get over our disagreement. Actually I would have to say that hubby has managed to surprise me. After a day of us not talking and my son starting to question what was wrong, I started a conversation with my hubby about what happened. Since then my hubby has been doing some reading. One book had been recommended to us as a form of cognitive behavioral therapy (CBT) at home. Mind Over Mood: Change how you feel by changing the way you think. The other book is one we got awhile ago. Mindfulness for Dummies. He has been reading both of them! I have some catch up reading to do as over the past week I have been hearing a lot of: This is in the book... as he is doing things like cleaning the kitchen and talking to me alone about what is happening with my son instead of putting his foot in his mouth ;) or letting anger guide him. 

'Mind Over Mood' I did start to read when we first got it and I was impressed with what I read. One of the first exercises gives you a situation and three different ways to look at it and right away you can see how our thoughts can determine how we feel or respond to something. The situation on the outside doesn't change but if you change how you 'think' then you change how you feel and therefor how you behave in response. I did spend some time discussing this chapter with my hubby and used myself as an example. I think that I have to a certain degree been using CBT for awhile now. I changed how I thought about my own parents. I could continue to blame them for everything that is wrong with me or my life or I could change how I thought about them. By changing this all my anger and resentment fell away. Instead I saw reasons to have compassion and empathy for them. My childhood didn't change... My thoughts did. As each scenario that has shaped you into who you are is looked at just a little differently... without the anger, the resentment, the judgement... Well it can be pretty powerful. I can say that I'm more then pleasantly surprised and impressed with the change that I am seeing in my husband. Reading 'Mindfulness for Dummies' is helping him to get a better understanding of the here and now and what he is currently feeling which will help better understand 'Mind Over Mood'. 

He upped his Cipralex back to 20 mg. Yesterday he decided to go back on the Adderall. Even though we think that it caused the hives, the only way to tell for sure is to go back on and see if it happens again. Now that he his reading these books he feels confident in having better coping skills or ways of thinking and is going to drop back to 15 mg of Cipralex. He is doing all this on his own! Aside from the medication changes which I'm not sure how his doctor will react... I'm impressed! He is being pro-active and taking charge of his own feelings and working on changing them.

We have both discussed some of this in front of my son... You can lead a horse to water but you can't make him drink. My husband wants to change and is willing to take steps to make that change... My son is a different story.

While the above changes with my husband gives me a lot of hope for 2015 and is the new that I referred to before. The old... is my son...

Yesterday started what looks like may be the beginning of another relapse. If I can even call it a relapse since really he hasn't, in my opinion, gained the stability that I know is possible. The Olanzapine has been helping however the Invega seems to be leaving his system, again. He is due for his next shot in 3 days, on Monday. I wasn't thinking about this yesterday when my son first started talking about wanting to go off some of his medications. I'm not sure why his Lithium, after being on it for two years, has suddenly become a problem for him. Like I said I wasn't thinking... My initial reaction to him saying that he wanted to go off medications was to remind him that he had signed an agreement with me to be medication compliant as a condition to living here. That I can't force him to take medications, that is his choice however I don't think it's fair to ask me to watch him relapse and go back into psychosis or become depressed by choice from not taking this Lithium. He needs to talk to his treatment team if he wants to make medication changes as coming completely off the Lithium like that without slowly decreasing can cause him to plummet into a depression that doesn't need to happen. 

It wasn't until I heard him on the phone with his Nana and while trying to discuss this with him, that signs of what I call psychosis talk became more apparent. He wasn't making sense. Talking about living for 20000 years on medications, that he was manic but didn't have mania and words like sacrament.... He said he will keep taking his Clozapine. He hasn't been on Clozapine since before his last break. He did agree to keep taking his Olanzapine, acknowledging that he needs the antipsychotic, when I reminded him that is what he is on now. 

He ended up calling his Nana again and I purposely put the movie hubby and I were watching back on so that I couldn't hear. I know that he needs this outlet and well honestly I didn't want to hear his psychosis talk. Sorry Nana... I just didn't have it in me to listen last night. I didn't bring up or try to talk to him again about his medications instead got them ready like I always do, kissed him good night and went to watch TV in bed with hubby. It appears he took them, at least I hope he did. The dish was empty when I checked around 11. He didn't have an easy time going to sleep though and was awake at 3 when I checked on him. Not a good sign. Either he didn't take all of his medications or psychosis symptoms are getting worse so his medications are not enough to quiet his mind for sleep. I'm guessing it's the psychosis getting worse.

I called PACT today... I was thinking today why I'm having a tough time with my patience with them. Perhaps I want them to step in, take over and fix my son which I know logically is not going to happen. I guess I'm feeling tired. Tired of feeling like the responsibility of keeping my son stable is more on me then on them. So many times on the schizophrenia.com forum I tell family members about the 3 C's. I didn't cause it, I can't control it and I can't cure it. I think I need to take my own advise here. Maybe I need to stop trying to fight battles that are not mine to fight. I can help my son fight if it's what he wants and I will gladly do so. However if he doesn't want to be stable... There's the catch though. If he doesn't have the insight to know what he is fighting? I guess I have to fight for him. Maybe I need to learn a different word then fight... Maybe I need to do some CBT! 

Back to PACT. His psychiatrist is still off for the holidays so there is no one around to make a medication change. His case worker is off today and his nurse should be around later. It's Friday... Not sure why this always seems to happen right before the weekend. Not that it makes much different as the results seem to be same either way. Supplement with the Olanzapine. My son did agree to take one this morning so that is good. I'm not sure what they plan to do about his Invega shot on Monday since my son has already stated that he will not take it again.

Today I can tell that he isn't ok. Although the Olanzapine I gave him just over an hour ago seems to be helping. *fingers crossed* we get through the weekend ok and can maybe get something that works better next week. I like the Invega but if he isn't going to be on medicinal dose or even a form of it that he will comply with...

On another note. I gave my notice to terminate our tenancy here on February 28! Wish me luck that we get the townhouse that I have put in an application for! I really, really want it! 

Mom

BarbieBF

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

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

Why would I?

I find myself a little over my head in legal terminology and trying to get answers from people who are adept at not giving straight forward answers. I'm usually pretty good at understanding legal documents... so my college diploma (Office Admin - Legal) isn't just a piece of paper after all ;) Still it's not easy trying to get a better understanding of what needs to be done. And it's not just the legal stuff.

Three days in a row I have left the message that I would like my son's doctor to call me. I'm still waiting... Yesterday I was told by one nurse that the doctor that saw him the day before wasn't going to be his treating psychiatrist, that yes there was notes on his file that I wanted them to call me and that she would call me back after the doctor saw him... Like I said, I'm still waiting.

Yesterday I received a text from my daughter asking if I knew how my son was. I think I read it a couple of times... thinking, I'm pretty much on the other side of the country and I'm being asked how he is. I have not said much about my daughter here because I don't want her in the middle. I don't want her being held responsible for things that she should not be held responsible for. She is not the adult in this situation and her brother or other people for that matter, are not her responsibility. A little insight into my daughter or at least what I see. She would gladly take on the responsibility at her own expense and that is one of her endearing qualities. I can't say it always puts her in the best of situations but it is who she is. She has an instinct to protect others but not herself. I yell at her sometimes... Not because I'm mad at her but because I really wish that she could see that just because some of the adults in her life keep dropping the ball, myself included, that doesn't mean that she needs to carry the weight of things that are not hers to carry.

They started my son on Paliperidone injection yesterday, also known as Invega Sustenna, of course due to being non-compliant with oral medications. I know that my son doesn't like getting these shots however I'm glad that he is now on them. He is certified under the Mental Health Act. I don't know for how long but I'm hoping that it is long enough for him to gain some insight. I am worried since he was certified the last time yet got released before he should have been. It looks like they will be discontinuing the Clozapine, due to non-compliance. Even 'miracle' drugs can't work if they aren't being taken properly. As long as he can be kept marijuana free then I'm pretty sure that the Invega can work since it is I do believe (partially) in the same class of anti-psychotics as Clozapine. A dopamine antagonist. Although it's also a serotonin antagonist which I'm fairly new to. Serotonin helps to regulate moods. I know that he was put on Lithium for I thought to help with his white blood cell count however Lithium is an add on medication used to treat schizophrenia and bipolar and does seem to increase the levels of serotonin. I don't know if they are keeping him on the Lithium or not yet but I'm guessing he won't need it. *fingers crossed* this may be a very good medication for him. Granted if you remember me blogging before how he didn't like oral Invega because it made him feel like getting up and doing something... He may not like it doing what it is supposed to do :) I'm sure his psychosis world is much more entertaining then this one.

Now for the title of this post. Why would I? Why would I get on a plane, do my best to fix what is currently happening, with the knowledge that 1 week, 1 month or even 1 year down the road that we could easily find ourselves right back where we are. The short answer is because I'm mom. The long answer is that I don't think that I can unless certain safe guards are in place. Which is why I'm knee deep in reading or trying to understand Private Committee and Guardianship laws. Currently waiting to hear back from a lawyer at the Public Guardian and Trust office. Since we are in different provinces and the paperwork is different for each of them then I'm not sure where I should be starting the process. Out there or here. Trying not to think too much about how much this may cost me financially at a time when we really don't have thousands of dollars laying around. Bless my hubby as he says not to worry about it that we can worry about it come January when I get my butt back to work. Yup, no putting this one off to much longer. I need a job!

Mom
BarbieBF

Before and After

We are done painting... for now... Still have the kitchen and doors to do. The kitchen will be done some day :). We have to get a different kind of paint for the doors but honestly neither my hubby or myself are looking forward to tackling those. I did take some before and after pics. Pardon the mess!

This is the living room.

This is the spare bedroom:

Our bedroom, I'm very happy with:

Do you see how high the bed is?! I almost need a footstool to get in it and hubby laughs at me when I slide off until my feet reach the floor. Other then the fact that it seems to collect dust faster then I can blink, I really do love it! By the way, that is an Elvis Presley, Jailhouse Rock Barbie and Pez on my dresser. Along with signed by DJ Fontana drumsticks!

I don't think the before pic of the spare bedroom walls does justice to the difference. My daughter went through a poster phase... Yup, tape all over two walls that I never could get completely off. My son finished the job with his feet wherever his computer desk was. The walls look much better now!

I talked to my son yesterday. While he sounded better then the last time I talked to him which was the day before he was admitted, he still didn't sound very good. He could follow me but was still pretty distracted and I had to repeat a lot of what I was saying. I asked him what pills (medications) he was taking and he told me Clozapine and Lithium but he didn't seem to know the name of the third one. When my son is stable he is pretty on top of the names of his medications so to me this is just another sign of how unwell he still is. I don't know if it's an indication of where he is at mentally or if he is still peeved at me however he wouldn't respond to me telling him that I loved him. Even when things were tough between us we had always managed to hold on to that to some degree. Now he sounds very cold and far away emotionally. Perhaps detached is a better word.  I can't help but wonder if he is abusing percocets or something as even when unstable he is not usually that detached and cold. Even when he was at the shelter, before leaving, he would respond to me telling him that I loved him. Even if he didn't mean it he at least went through the motions. It felt like even doing that was too much for him. I did my best to let him know that I still loved him and despite what we went through that I will always love him, that nothing can change that.

Mom
BarbieBF

Hoping for the best.

I think I have my feet back under me, figuratively speaking. At least I don't feel like I'm down for the count. I won't say who but someone said/typed something to me today that lifted me in a way that I was not expecting. This person said: And don't be sorry, he's your son. A simple acknowledgement that... I really can't explain... Just thank you if you are reading this. It somehow made my day and helped me to realize that nothing can change this. I did allow schizophrenia to cause a rift that should not have happened. I allowed emotions, my sons and my own to get in the way. I stepped back just a little too much or perhaps a lot too much ;) I'm afraid I'm only human after all...

My son left yesterday on a flight to his father. I did not take him to the airport, someone from Ready4Life did. I couldn't. I did see him the night before, brought him some things, took him for a Tim Horton's coffee and let him talk for a bit. I sometimes do this to get an idea of where he is at mentally. If given the opportunity and if he feels safe then he usually opens up pretty easily about what he is thinking. As hard as it was to listen to my son's delusional thoughts and beliefs, I did take comfort in the fact that he still considers me a safe place to speak about them. I won't go into all of what he had to say except that he spoke of himself as being non-human, wanting to leave earth and not wanting to be connected to anyone by love.

I think off all the things that schizophrenia is, how I can love and hate it at the same time and I do, but the fact that it robs my son of the ability to feel love normally, is one of the hardest parts. I'm not saying that my son doesn't love because I know that he does. However he does love differently. He doesn't love in a way that allows for a certain amount of give and take or consideration for the other person. Of all the things that I fear for my son's future, one of my biggest fears is that schizophrenia will not release him enough for him to see the joy that giving can give. I do believe that it is possible as I see it happening with others. I just can't give up hope that it will happen with my son. That given time that part of him will mature and he will learn the true meaning of what it is to love and be loved.

I was talking to my daughter this morning. She asked if she was talking to much as she enjoyed talking to me. I enjoyed her talking to me too! It was actually reassuring to listen to her talk about her life.

As the title says, I'm doing my best to be positive or to hope for the best. As far as I know my son left with a limited supply of medications. I know that his Lithium wasn't refilled however I'm not to sure about his Clozapine. I did bring it up to him however he stated that he didn't plan on taking medications once he moved so there was no need, that if he has to be on medications for the rest of his life then he might as well end it now. I did reply that some people would gladly take pills if it meant a chance to keep living however I know that he doesn't see it this way so I let that conversation end. I have supplied what information I have regarding medications and his history and hopefully the right people will read and take note of what, I think, does or doesn't work best for my son. I am very relieved to know that it doesn't look like he is going back to the same psychiatrist that he used to have. If his new psychiatrist takes any interest in his past history and my notes then hopefully things will not turn out as I am fearing they will.

So I'm doing my best to have faith. That Donna, Dad & family and his new treatment team will take care of him. One day at a time right?

Mom
BarbieBF

Bronchitis, I Love You Too

My son called me on Friday, he has bronchitis and needed his disability drug card to fill his prescriptions. There wasn't too much that I could do until my husband got home from work so once that happened we headed to see my son. On the way we stopped and got him some acetaminophen in case his throat hurt and some cough syrup for at night. We took him to fill his prescriptions at a different pharmacy then the one he originally went to which saved us some money. I would have to say that really bothers me that some pharmacies charge more, especially when it's for people on disability. Due to my previous job where part of my duties was to be the administrator for the companies insurance, I was/am aware of why at some pharmacies you have to pay more. It's because they are charging more for their services or medications then the insurance company or in this case disability, thinks the service or medication is worth. So luckily the one pharmacy was already closed so we went to another one, one that didn't charge more for their services then disability was willing to pay.

My son wanted to go for pizza afterwards to which I agreed if he cleaned up first. He was wearing the same cloths from when I saw him on Tuesday and they didn't smell too good. With no resistance he changed cloths and cleaned himself up. I had also brought him a toothbrush, toothpaste, deodorant, Q-tips and nail clippers, although I haven't been able to get him to use the nail clippers yet. He goes through phases where he likes to have long nails. It seems to go hand in hand with his phases of instability and I only remind him that if he is going to keep then long then he should try to keep them clean. We also got him a new fanny pack since his was taken and I wanted him to have a safe place to keep his ID and other items. We then took him for pizza which he seemed to enjoy. I had to pick off the hot peppers since we let him pick the toppings.

I was impressed during the visit to see staff at the shelter checking for drugs etc when certain people where coming in. One boy even had to remove his shoes! All my son's belongings are in a locked cabinet that only staff can access. Not sure how but he also got another cell phone and this time kept the paperwork although I didn't take the time to read it. His left over pizza was put in a locked fridge with his name on it. We had to hand in his prescriptions, even his puffer that he was prescribed. All prescription medications have to be monitored and he signs every time he has access to and takes his medications. After watching my son take his first set of antibiotics and use his puffer, my husband and I said our good-byes. This time my son actually hugged me back! and told me he loved me too!

Saturday my husband and I went to see his family as his sister passed away over a month ago but due to circumstances everyone couldn't get together until now. It was nice to see everyone.

Yesterday we went to see my son again. He seemed genuinely happy to see us. Got him to change his shirt as again he was in the same one. Took him his track pants as the nights are a little colder now. He can do laundry there but without monitoring and reminding he doesn't follow through so I guess he did start a load when he first got there but the cloths went missing. He hasn't looked for them so they are probably there somewhere since no one else is wearing them. He can't be bothered to look for them as according to him he can buy a whole new wardrobe for $400 so why worry about a set of cloths. I guess this $400 is part of the full check disability is going to pay him... I have been bringing home his dirty cloths. Also took him some vitamin waters, beef jerky and more cigarettes. He wanted to go for a car ride so we drove to Tim Horton's, got a coffee and went to a park to drink it.

Even though he is physically doing better, his thinking is still a little off. I was asking him about how the food is at the shelter and he says that it is actually pretty good although he still doesn't feel like eating much. He is still in the frame of mind that he is doing his body good by forcing it to survive on less. I tried to explain that his body is like a car. It needs oil, fluids and gas to run properly and if he really wants to show his body respect then giving it the proper nourishment is the best way to do that. I do believe that he is eating as I see no indication of weight lose and even though he is somewhat delusional in his thinking he is doing better.

Paranoia, delusional thinking and general confusion becomes obvious at certain times. The shelter has tried to get him to sign a release for PACT however it seems a little paranoia may be causing this resistance along with his normal defiance. He seemed less resistant to the idea when I brought it up to him a couple of times. He is starting to get low on his Clozapine so I'm hoping that I can get him to open up about PACT so that they can interact with the shelter and make arrangements to have this brought to him as well as receive information about his blood work for next week. The shelter or my son is going to need a requisition and I can't provide it, PACT does. Also it would make things so much easier in trying to find him a bed somewhere else if everyone could talk to each other and get things moving faster. I really wish that he could see all that everyone is trying to do for him. I know that his case worker called the shelter again today but they couldn't talk to her. I'm not sure how long they can continue to offer their services if he is not open to it. I'm not sure I even want to think about the problems that could arise from him not having a psychiatrist to prescribe his medications or who is going to pay for his Clozapine since PACT took care of that. He was lucky to have a lot of people advocating and pushing his referrals through so that he didn't have the usual wait time it normally takes to get in to see a psychiatrist. One problem at a time right!

He did ask me yesterday what was going on with his Grandmother and Father, that something didn't feel right or was off. At first I wasn't sure who he was referring to as we usually refer to his grandmother as Nana. He wondered about his Dad not calling him and I let him know that his Dad had asked for his cell number but his cell had gotten stolen right after that and my son seemed confused by my reference to the stolen cell, like he didn't know or remember that it had been stolen. I'm not sure what he thinks is off with his Nana and he couldn't explain it but I told him that she has been going through her own stuff and I don't think it's anything that he needs to worry about. It could be his own paranoia acting up as well so it's hard to tell.

I did make sure he took his antibiotics before leaving yesterday. Let him know that I might not make it back until Wednesday. I also got the name and address of the pharmacy that filled his antibiotics as I'm going to have to figure out something for when he needs to refill his Lithium. Either transfer the prescription from the pharmacy here to the one close to him or have this pharmacy get the disability information as we had to give the pharmacy the original disability drug card and they keep it. Hopefully I'm worrying over nothing and I don't run into problems of not being able to do help with this since he's an adult and should be doing it himself. He did hug me good-bye and told me that he loved me too.

So today I'm doing my usual phone calls of checking on him, making sure everyone is aware of what they need to be aware of and now I will try to get a hold of his case worker and keep my fingers crossed that he finally agrees to sign the release.

Not adding up...

I did see my son on Tuesday. I arrived while he was on the phone, I was told that he was talking to his Grandmother. I'm not sure what I was expecting to find but physically he actually looked like he is doing okay. He has showered and he has been sleeping and eating as the shelter does provide meals. He has been taking his Clozapine and Lithium. My son's eyes seem to tell his story better then anything else and he looked more stable then the last time I saw him.

I have tried to piece together what happened on Monday however very little of it is making any sense to anyone. Before my son called me to tell me that he had been mugged, I was unaware that this happened. To my knowledge he had tried to buy $500 worth of drugs and they didn't return with the drugs so he went to the police. Somewhere in there he took them for Chinese food... I really don't know how that detail fits in. My son called me after I blogged on Tuesday to tell me that he had been mugged and only had $11 left in his bank account. I tried to ask him what happened. He said that he 'got lured in' yet when I asked him how they lured him in he couldn't tell me just that they did. I'm guessing that he willingly went with them as he was trying to purchase marijuana and cocaine. The cocaine according to him is because he wanted to try it. I guess I wasn't sympathetic enough as I told him I wouldn't be giving him any money so he got mad and hung up on me.

My husband came home early due to rain so we had an early dinner then headed to the shelter. I thought my son would like to have his search-a-word book and a notebook and some pens as well as some cigarettes. He didn't want the books. I gave him one pack of cigarettes and gave the shelter another 3 packs and asked them to only give him one pack a day. Since he was able to go to the bank, get a new bank card and find out how much money he had that meant that he had his ID still which I know that he kept in his fanny pack that got stolen. He says that he asked for his ID back and one of the muggers was nice enough to give it back. I don't disbelieve this however it's hard to imagine. The staff have been having problems communicating with my son as it takes him awhile to understand and respond so it's hard to believe that he was thinking clearly enough during a mugging to ask for his ID but it is possible. He also apparently voluntarily (without them asking for it) gave them his pin number for his bank card. He says that he got hit in the neck. There are no bruises, red marks, nothing to indicate that he had been hit. I did look. He got away and ran to a pay phone and called the police. I'm not sure how no one knew to tell me that it was a mugging when I first found out about it.

My son told me he got robbed of $700. That he was trying to buy marijuana and cocaine although he hadn't planned on spending all of his money on drugs since he wanted to purchase some luxury items. I quietly stated: I barely had money for rent yet you want to buy luxury items? He laughed it off. He thinks that disability is going to reimburse him and he seems to also think that they are going to continue to hand him money for board and lodgings when he isn't paying for it. I didn't bother going any further into that conversation. We did ask him what he planned on doing with that much drugs since he can't take it into the shelter, they do searches. He had a spot picked out, outside, to hide it. Nice to know he is planning ahead for something :)

The shelter asked if I could help with getting his cell phone disconnected since it was taken too and we don't need whoever has it running up a bill in his name. We took him to the mall where he got it. He said that he got it through Rogers but he actually got it through Koodo. The couldn't help him at the mall stating that he needed to call them. So we went back to the shelter to get his paperwork for the phone. He had thrown it out so at this point he didn't know who the provider was, the account number and probably doesn't even know the number. The following morning I called Koodo and was able to confirm the account but couldn't do anything since I'm not on the account and didn't have the pin that he would have created when setting up the account. I called the shelter with the number for Koodo customer support, his cell phone number and explained that he could suspend the service, no charge, with the information from his ID if they could help him do this. I just tried calling the number and got a message that this number is not equipped to receive incoming calls so hopefully they got him to suspend the account. Considering the fact that my hubby and I are currently stuck not being able to move due to his bad credit report. One of them being an unpaid cell phone with the same service provider... I do know that it can have an impact on my son's future if it's not taken care of.

I haven't heard from his case worker from PACT since Tuesday although at this point I don't know how much help she can be as my son is refusing to sign a release for the shelter to talk to her. He doesn't want anything to do with PACT even though it's their psychiatrist that is prescribing him his medications and it's PACT that has arranged for his Clozapine to be paid for by the manufacturer because disability still hasn't agreed to cover it. It's also PACT that picks it up for him and delivers it to him now. I will have to confirm with the shelter but he should have enough for another couple of weeks and he should be ok with his Lithium as well. My hands are somewhat tied with Ready4Life as he refused to sign a release giving them permission to talk to me. So I don't know what is happening with his applications for the two group homes. When his case worker calls me I'm going to try to find out if we can get him moved from that shelter into one in a better neighborhood. The one we wanted didn't have a bed last week but maybe that has changed. Depending on how defiant he wants to be he is making it hard for anyone to assist him.

He seemed ok when we left him on Tuesday. Didn't seem concerned about anything. I hugged him good-bye. I might as well have been hugging a board. No emotion what so ever...

Mom
BarbieBF

Hurry up and wait game

I know someone who uses this phrase a lot and in this case it certainly fits. I feel like I'm playing a game of hurry up and wait. Wait to see if he is going to pull himself out of it or wait for the break. Either way I wish that it would hurry up and happen one way or the other. I think I have said this before! Deja vu!

This morning was another morning of him stating that he must have insomnia because he took his pills but couldn't sleep. He hadn't taken his pills. His confusion on this is not getting any better as I believe that he really did think that he had taken them. He did take them, his Clozapine and Lithium, and within 45 minutes went to bed after being up again for 19 hours. In the meantime I was listening to more laughing for no apparent reason. The laughing has been back since the 19th. He is explaining it away as a stress reliever and that he is laughing at stupid mental pictures. More animals although this time no mention of cow udders (it's ok I smiled too!) which is what he found so amusing the last time this happened. I think it's sheep this time. At this point I'm unsure if he is experiencing voices or not, although he says that he isn't. Of course I believe him... not. Voices are part of what got him admitted last time.

Turns out it was the Seroquel that made him feel like crying. Not the Trazodone. Something else he was confused about which is not like him. He is usually pretty on top of the names of his medications. I woke up one morning to my knife sharpener missing. I know he has a fascination with his switch blade and pocket knives but I put them all away. He asked me about them yesterday and I told him that I put them away. I haven't thrown them out and he can have them back but with him feeling suicidal I didn't feel comfortable with him having them in his room. The morning we took him to the hospital he had stated that he might as well slit his wrists if he has to be on pills for the rest of his life. He didn't deny feeling suicidal...

His case worker was here yesterday. He didn't remember meeting her on the 18th. His psychiatrist decided not to come see him because if the hospital would not admit him then there probably isn't too much that he can do except to have his case worker try to talk him into going back on the Invega. He is still refusing even though she tried to explain to him that if he wants to obtain his goals of moving out and being on his own than he needs to be more alert and functioning. She did comment that he seemed more alert. I don't think it's a good alert, I think it's more along the lines of his mind raising. She had to repeat a lot of what she was saying because he would stop focusing on her. Then it was like he would come back to seeing or focusing on her. While he may not have any overt signs of voices I do believe that they are there.

The lady from Ready4Life dropped off two applications today for group homes. One of them may have an opening coming up around September. So far we are all in agreement that this is probably the best choice for him. He wants his own place but he can't take care of himself and is unable to see that. He will have his own room and be expected to help and participate with chores and participate in daily activities. It has 24/7 onsite support staff and the majority of their clients are between the ages of 20-30 and 60% male. They also charge on a sliding scale so he can afford it. They will help teach him life skills. He didn't seem to impressed when I told him about the chores. I reminded him that he says that he is capable of doing them so it shouldn't be a problem. He also showed some resistance to the idea that they may oversee his medications. His case worker explained that it is nothing personal, they are just doing their jobs, which seemed to ease his defiance a little bit. Or he lost his focus again.

Overall he is barely maintaining be 'stable'. He is eating some. Sometimes he will have some supper but he is not eating like he normally does. Not drinking as much as he normally does. He hasn't been on his computer in days. I'm guessing he can't think or concentrate to be on it. He's been watching TV all night although I don't think he is watching it. He doesn't appear to be changing channels or turning it up to the volume that he usually watches TV at. I know because I'm usually asking him to turn it down in the middle of the night. So basically he is sitting or lying on the sofa with the TV on. I noticed this morning as well that he wasn't smoking cigarettes. When stressed he can smoke one every 15 minutes so if it has progressed to the point that he isn't smoking for extending periods then he is much to far into his own head space. I asked him last night why hasn't called his Nana yet and he said that he didn't know. Again I'm guessing that he just can't think to do it. He hasn't showered since the 12th and I don't think he has brushed his teeth since then either. He is sometimes changing his shirt. One day he did manage to groom his facial hair. I have no idea what prompted that. Ego? :) I have been reminding him to wash his bedding as it needs it. He acknowledges that it needs to be done and that it is a good idea but doesn't do it. The mom in me is having a tough time not pushing him to do these things or do it for him however doing it for him won't change the fact that this is currently where he is at. It would be like putting a band-aid on a broken bone. The band-aid won't fix it or cover it up.

His caseworker did take him to get his monthly blood work done and he did call in and refill his Lithium. She will probably take him to pick it up tomorrow although that means he only has 300 mg for tonight/tomorrow morning instead of 600 mg. I'm obviously not going to send him to a shelter like this, so that is off the table for now. For now it's just waiting... Hope that he pulls it together or has a break so that the damage being done to his brain is minimal.

Mom
BarbieBF

Knife Sharpener Guy

Tough Love and Boundaries

My son has been off his Invega for a week now and has had about 15 hours of sleep in the past 50 hours. Hasn't eaten a proper meal since probably Wednesday or Thursday of last week. Saturday we spent 6 hours in emergency. He was sent home with a prescription for Seroquel/Quetiapine. After waiting the 6 hours in emergency for my son I got informed by the treating psychiatrist that my son didn't want them talking to me. I said that is fine but I know you can listen. Filled in some details and stated he is looking for benzos. I belief he was trying to get Ativan/Lorazepam. His reason for coming off the Invega. It makes him too alert during the day, like he needs to get up and do something like go to the gym and he doesn't want to feel like that while he is living here. So the Invega was working and doing what it is supposed to do, in my opinion. He took the Seroquel twice, got some much needed sleep, and is now saying he doesn't need it that it is a PRN. He even refuses to acknowledge that it is an anti-psychotic. Or me telling him that it is, is what is making him not take it as on Saturday he stated that he really liked how it was making him feel.

I love my son but I think I need to get out of the picture a little bit, or a lot. As long as he can continue to blame me for everything then he will never be able to see that it's schizophrenia that is causing him to feel and act like this. I did tell the nurse at the hospital that if things got any easier for him at home that I would be wiping his butt for him. And it's still not good enough for him. He wants me to be nicer. I don't even know what that means anymore. Not tell him that he needs anti-psychotics? Not expect him to clean up after himself? Not point out that things that he is saying just don't make sense? I can't see him not having another break if things keep going the way that they are. He does need his anti-psychotics and he does need more structure. Structure that I obviously can't provide as he won't accept it coming from me. His ODD is in full gear. According to him he is an adult and his treatment is none of my business.

He was up all night again last night. When I got up at 4 he stated that he had insomnia and couldn't sleep even though he had taken his pills. I checked and he hadn't taken them, they were still in his dish. All that was in there was his Lithium and Clozapine. No Invega or Seroquel. He took them but then I heard him in the bathroom coughing/gagging so I'm hoping he didn't spit them back up. I insisted that he go to his room even if he wasn't going to go to sleep. He had the living room to himself from 9 last night to 4 this morning. Now it was my turn. When I suggested he take a Trazodone for sleep he stated that that medication makes him want to cry. This is the first that I have heard this and to my knowledge it never did this. I think he is very confused.

I called his case worker this morning and she came by around 10 PM. She had some information on the shelters in the area as when I called her I told her that he needs to go. I had told him on Saturday that he can't stay here if he is not going to take his medications as prescribed or with the attitude that I not be a part of his treatment. The meeting didn't go to good. He was having a lot of trouble following what she was saying. He basically asked her to leave stating the he was too tired to talk to anyone.

So here I am at 12:44 PM and I don't know how to proceed. I don't know how to help him accept what he needs to accept. Me being his mother is getting in the way of him accepting responsibility for his own life and choices. He is relying on me as mom in every way that a child would yet insisting that he's an adult. I know that it is his schizophrenia and ODD that is causing this however I can't see this changing unless his current circumstances change. Without me as a scapegoat perhaps he will be able to look at things differently. Or not. However I think it's time to find out just how sick or capable he really is. More importantly he needs to find this out for himself. Between PACT and Ready4Life he has so much support available to him.

Hopefully I will hear back from his case worker today. I know that the two shelters she called were full this morning. The shelters are not like drop in community centers or soup kitchens. They are staffed with onsite personnel that oversee his medications, have structured meal times and people available to him for support including mental health.

Mom
BarbieBF