Embracing what is.

It's been awhile... Sorry about that.

I remember when I was younger someone telling me they wanted to grow old gracefully. I didn't understand that then however I think I get it now. Except I prefer to think of it as embracing what is and what is to come. We are going to age no matter what. It's how we choose to deal with those changes that I guess would be the graceful part.

Granted I'm not that old yet. I'm only 43 and I don't look 43. When I'm out with my children we usually get asked if we are siblings. Kind-of cool right? Perhaps. However I'm coming into another stage of my life and I want to embrace it. I am embracing it. Are you ready?

I'm going to be a grandma! I'm so excited about this. My daughter is going to have a baby!

I know I haven't been around much lately. Here or on my Facebook page or anywhere else for that matter. Life has been pretty full lately. Work is going good and keeping me busy during the days. Winter is here. My daughter is here! She came home to have her baby and to do her schooling. She has orientation on Friday and starts classes next week. I think she is about 8 weeks along and dealing with some nausea.

Some have reservations about her being here. About her having a baby so young. I just shake my head and wonder if they have all blocked out where we were when we had our babies. I remember where me and my kids dad where when my first was born. Living with my mother. Certainly not any older or more mature. Concerns about me mothering her too much. Haha! I plan to! There are times when a girl needs her mom and this is one of them. There are times when a girl needs to be mothered and accepted with no reservations and this is one of them. Soon enough she will have to take on the responsibility of being a mother herself. For now I will more then gladly take on the responsibility of being her mother, of putting her first, because it's been a long time since anyone did that for her. For her, not just because of the baby. Her world has been turned upside down. I will do my best to turn it upside right. :)

So taking prenatal vitamins and B6 for nausea is now part of our daily dinnertime routine. We are waiting on the referral to the baby doctor for her first appointment. Boy or girl? There is always a debate on that one. I only know that I started dreaming about a little girl that reminded me of my daughter sometime last year... Either way I can't wait!

Hubby has been embracing this as well. He is looking forward to going through it all with her. Due to the weather he hasn't been working a lot lately so when he is home he takes her with him when he is out scooting around from place to place.

As you may remember from one of my earlier posts, I have been trying to grow my hair out and go natural. So yes grey. The other day I got a hair cut, short. Took off all the old blond so now it's just my natural blend. My daughter doesn't particularly like it but hubby and I love it. I like the grey. I also got a new pair of glasses as my eyesight took a bit of a dive. I got progressive bifocals. Bifocals without the line.

As for my son. Not a lot has changed. He is still in the hospital waiting to go into the treatment center whenever they have a bed available. He calls me once or twice a month to ask for money. I don't know a lot about his treatment as he still hasn't signed a release for me and for the most part no one else including himself seems that aware of what meds he is on or doses etc. His grandmother did manage to find out for me recently that the long acting injection he is on is Haldol. It seems they have taken him off the Olanzapine and lowered his Lithium. He isn't fairing so well from what I have been told. Audio, visual and tactile hallucinations. Personally I think he is using marijuana however I seem to be the only one willing to acknowledge that. He is drinking alcohol of course whenever he gets the chance.

I'm off... Have some things to do before I start work.

Mom/Grandma
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.

I have lost count.

My son is in the hospital. I don't recall what number that puts us/him at for hospitalizations...

Do you ever wonder what it is that causes us to do something even though we think it is pointless?

I do. Is it some mystical part of the universe. A gut instinct. Hope...

I picked up the phone this morning to call my son's worker even as I asked myself why I was doing it because I wasn't expecting to get through to anyone or accomplish anything. I had previously called and left two messages and wasn't getting a call back as my son had denied me access.

I had called the hospital this morning and talked to my son and he of course stated that he didn't want to give me access as he wanted to keep everything between him and his workers. No surprise there. They have put him on Ativan/Lorazepam so I'm pretty sure he is happily stoned on it and certainly doesn't want me interfering.

I know that he is on Ativan as his grandmother has been calling me, sometimes just because she needs someone to talk to, to feel better. Not sure how I'm feeling about this new turn as I'm caught between my own natural instinct to want to be supportive and a need to keep some emotional distance between us.

Anyways his worker answered my phone call. I started the conversation with: I know you can't give me any information however I know you can listen. He did. I hung up, thankful that I had picked up the phone despite thinking it was pointless. I had been trying to fax over my notes, since my son's diagnoses and I had been having no luck. Turns out I had been faxing the wrong number. Oops. After confirming the right number I was able to fax so hopefully he has it now.

As it turns out, he had not followed up with my son's treatment team out here because he had no idea who/what they were. All he had was a note that had been sent out with my son stating what his prescribed medications were for. So for the past couple of months no one has had any information on my son's time with me in Ontario or his treatment. Mind boggling...

I also called PACT here and left a message for his (old) nurse or case worker stating why they hadn't heard from British Columbia with his current workers name and number.

I just got off the phone with a worker from the hospital that called me looking for background information. Of course she couldn't give me any information... I guess they are trying to put together a treatment and discharge plan. I almost freaked when I heard the word discharge. They want to know what my son's capabilities are. If he can live alone. Me the broken record: No he cannot live alone. He has zero living/coping skills. That is why I was trying to get him into a group home. No matter how stable he is, if left to his own devices he will become unstable within a short period of time. Alcohol/drugs then missed medications and ensuing psychosis will be the result. He can't manage his own money. He can't even take care of his basic hygiene without support and prompting.

I had some good intentions of getting some house cleaning done today... Instead I have spent most of it talking to people about my son and what I think he needs or doesn't need. I did manage to put in my two-cents-worth on him being on Ativan.

I also made some cookies for hubby!

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.

A BS Interpreter needed. #9

I think I need one. A Bullshit Interpreter. Someone who can translate for me some of the BS...

What can I say. Sometimes dealing with 'professionals' can really get my dander up (piss me off).

Sunday Michael was involuntarily admitted to hospital. This would be his 9th involuntary admittance. It's the best place for him right now. I have seen him a couple of times. He is doing ok actually however he is actively hallucinating if you know the signs. Yesterday I got him into some clean cloths and had him put on some deodorant. I looked at the paper by his bed and he is on his second form until the 25th. He doesn't understand the reason: Serious bodily harm to oneself. As best I could I explained that when he isn't thinking clearly he is physically at risk of hurting himself. He said the problem was the sun, that is was damaging him...

Turns out I was right about the marijuana. He did admit to having some plus I found the pipe in his backpack. On Tuesday when we saw him, I asked him if I could have his backpack for a minute. He asked why and I said I wanted to snoop through it. Really I wanted it to clean out all the garbage but I thought it was cute when he handed it over. Whether he realizes it or not I take that as I sign that he does when it comes right down to it, trust me. It was over half full of garbage, a days worth of missed medications and of course his pipe. All went in the garbage.

I let him know that depending on what happens that I want to get power of attorney. He said that he would rather I didn't do that. I would rather not do it either however he keeps doing things that puts himself in these situations.

One nurse commented that she was shocked at the change in my son when he was around me. I guess he was pretty out of it before I visited. Yes my son can pull it together when he needs to. I think he wanted me to see how well he was doing so that I could get him smoking privileges. He did get them the next day.

When my son was first admitted and his nurse called me, he spoke of a family meeting. I hadn't heard anything about one since that so I brought it up to his nurse last night. So far his nurses have been really nice. She told me to call in the morning so that I could get the doctor as that's when they do their rounds. If anyone has had to call a hospital for a loved one I'm sure you have heard some of these. If you call in the morning it's: We are in the middle of shift change, call back in an hour. You call back in an hour and it's various responses that pretty much end with: Call back tonight. You call at night and it's: Call in the morning when the doctor is here.

So this morning I thought ok let's wait until after 8 and shift change... I call and ask if the doctor has seen my son yet that I would like to talk to him. Her reply was: It's only 8:30. Yes I was told to call in the morning, what time does the doctor normally get there to do his rounds? Before 10 and that I should call back in a couple of hours.

Hello BS Interpreter. I really need your help here...

I did request that a note be left for his doctor to call me. She said she would 'put it on the board'.

I could also use a BS Interpreter for when I get quoted privacy laws. Have you ever asked anyone who is quoting them if they have ever read them? I have and the answer was no. Guess what? I have read them. One person at the shelter quoted them at me, with my son right beside me, telling me that she couldn't tell me if he was there or not. This topic deserves it's own post and eventually I will get around to writing a good one that I'm probably going to submit to the local newspapers.

I will say this though: To anyone who is going to quote me privacy laws. Please read them first because I have and all you appear to be doing to me is protecting your own right to do less work or even use a little common sense.

I hope everyone has an awesome weekend! I'm off to get my day started.

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.

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

Hospitals - Good or Bad, Pat Deegan PhD

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

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

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

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

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

Some links for Patricia Deegan PhD.

Pat Deegan

Patricia Deegan's amazing story (video)

Mom
BarbieBF

You're real?!

Friday was the first time I had seen my son since September and obviously since his last full psychotic break. This break has a different feel about it then the one I saw him go through September of last year. A lot of it is the same of course however I don't recall the disorganization and word salad. I find myself having to ask him what certain words mean and once he describes it then I fill in the appropriate word. On the plane ride home he was tapping the tray and arm rest with a knuckle. When I asked him why he said he was testing the bandwidth of the carriage. I asked if he meant the density of the airplane and he said yes. Once he told me I was his limbo which meant I was like his left arm.

I didn't realize just how much he was still in psychosis until we were in the cafeteria at the hospital and he asked me how to tell if something was real or not. I asked him he was unsure about being in the cafeteria and he said yes and was concerned that the cafeteria would be scary to me. I can only guess at what he must have been seeing or hallucinating to think I would find it scary. He had denied hearing voices with the hospital psychiatrist however he knew better. I usually refer to them as entities as voices to me just don't give them justice. They are not just the sound of a voice. Clearly these entities were with us in the cafeteria so I told my son to not be afraid to try some reality checking by walking up to and touching what he is seeing to see if they are real. I toke his hand and had him touch my shoulder and after a couple of seconds he squeezed my shoulder and either asked or stated: You are real?!. Yes hun I'm real. Then I had him do the same with his sister so that he could know that we were both really there. It was sad to think that up until then he must have questioned that he was walking and talking with hallucinations. The severity of how sick he was struck me at that instance.

I questioned if I should have had him released when I did and I very much question if he should be out of the hospital yet. He is still too unstable. He wrote some notes on the plane and his thoughts are messed up. Some are good however the others are about sex and weapons. He actually asked me if he could have a gun... I added to his notes by changing his good thought of having a 'somewhat health life' to a 'very healthy life' and adding love, hope, family and that I love him very much. He seemed to like this. He did spend some time playing Mahjong, a matching tile game, on my phone for a bit. I was impressed to see that he could multitask to a certain degree. He still matched tiles even while he was laughing at his voices or intrusive thoughts :) I did ask him what they (voices) thought about me or if they had anything to say about me and apparently not so that is a good thing. I tried a couple of times to ask what was so funny that they must be saying something fairly funny however he couldn't or wouldn't tell me other then one comment about a dog's penis... Not sure I want to know more then that. He seems to have a fascination with animals during these times and not in a good way.

I did call disability again and left a message that he is here. I just called the pharmacy here to find out if they can bill another province for medications and was told 'sometimes it works'. I was really hoping for a yes as I'm hoping to get a sleep aide prescribed since getting him to bed last night was pretty much a no go and he needs his sleep to recover.

I have talked to his case worker at PACT today and she has already set up an appointment for his psychiatrist to come see him tomorrow. I have to talk to him about the amount of Invega he is on as 75 mg seems low to me. I also have to talk to him about putting my son on a Community Treatment Order (CTO) for medications. Hopefully the number of hospitalizations, now 8 of them, will be enough to have one put into place. I forgot to ask his case worker if she had prepared any releases for him to sign. Maybe PACT can have better luck getting disability to respond if they have a release signed. I think the psychiatrist will assess if my son needs to be hospitalized or not. He was left on Lithium as the psychiatrist was concerned there may be a mood component and didn't want to take any chances. I'm guessing that means he could be schizoaffective?

We got home around 1:30 last night... I had hoped that I would get him to bed at a reasonable time. Nope! Having the laptop and PSP4 set up was the first priority. Then it was the TV blaring at around 5 AM as he was watching Constantine. He said after that episode. Then it was calling Nana. Then it was not being able to sleep. Then I was being woken up as he wanted his bank card, then his glasses cause he was playing his PSP... I think he finally went to sleep after my husband left for work. Not sure how to fix this as this can't keep happening, him getting his nights and days mixed up, as it can contribute to psychosis.

It's 2:50 PM and my son just got up! I was thinking I would have to drag him out of bed if I wanted him sleeping tonight. Now that he is up I will put away his cloths.

Mom
BarbieBF

My bags are packed and I'm ready to go...

Ok I'm not packed and I'm not ready to go but I will be by the end of the day. ;)

I'm still waiting to hear back from disability and I'm beginning to gain a dislike for how easily professionals can mislead a person. I think that I have an understanding of what is going to happen and bam... the rug gets pulled out from under me yet again. After making mine and my son's current circumstances clear I thought I was well on my way to having power of attorney papers drawn up, even had my son's agreement to sign them, and then the lawyer throws a wrench in it stating that he needs to obtain instructions from my son. This after telling me that he could draw up the papers for me to take to BC for signing. The two just don't meet up... How does he plan on getting instructions from my son while he is in another province and if this was required he should have stated this previously. I had every intentions of getting it signed by a notary public so that my son's rights were being addressed. Oh well...

I talked to my son the other day about the power of attorney thing possibly being put on hold for now however in the meantime I would want certain things put into place when he comes home. First he needs to sign a release with PACT so that that can freely talk to me and me them. He agreed saying he didn't want to hide anything from me anymore. Lets hope that is true ;) I also let him know that once he is back on disability that the room and board portion of his payments are to come directly to me. He will still get his spending allowance sent to him. He agreed. At this point he may agree to anything to get released from the hospital but I'm hoping that he will follow through. He says that I have his word on it that he will. I will be happy to have these two things put into place.

The plan was to leave tomorrow, be picked up at the airport then go get my son released. What is that saying about well laid plans? Always expect the unexpected. They won't release him until the day we are flying out. The doctor doesn't want to take any chances with something going wrong while he is being transferred into the care of his psychiatrist and treatment team out here. I think he may himself also be playing a role in causing the doctor to play it safe. He has lost his smoking privileges as he tested positive for marijuana so smoked it during his hospital stay. He has also asked in front of his case worker at the hospital for $100-200 which we all know what he wants that for ;) So I can understand what they are trying to prevent.

The hospital will communicate with the PACT team out here and send over whatever information is needed regarding his medications. I'm happy to have them take over some of this.

I will be returning on Sunday providing everything goes according to plan. *fingers crossed*

Mom
BarbieBF

The Worry Jar

I saw reference to this on one of the groups that I'm in. It was for children but I thought why can't I have one too? So I got a jar, wrote down most of my worries and put them in the jar...

That I won't get out of dept
That I won't be able to help my son and keep him stable and safe
That my son will hate me for what I need to do

You get the point... I tend to worry and over think things so even if only for a moment it was a relief to put those worries in a jar... In a safe place... Until I'm ready to pull them out. Kind of like housework :) It's not going anywhere and will wait for me.

The Worry Jar Technique: Help Your Child Overcome Worries and Anxiety

The Worry Solution

I was talking to my best friend and another call came through... It was my son. I ended up having a good cry once I got off the phone. Still am a little bit ;) I can't say that I have heard him sound quit so lost and hopeless. The Invega is working so he is much more coherent but he is still somewhat delusional. He wants me and him to move to another country... The first thing he asked me is if I was coming to get him. For the first time in a long time, probably since the Adderall... he seemed to genuinely believe that I love him! I think that is what broke me, when he said that he knew that I loved him. No ego, no defiance..

I told him that I want to get power of attorney so that this doesn't happen again. He asked about getting or being his own attorney and I told him that up until now he has been his own attorney and look at where it has gotten him. In the hospital again and that even if he doesn't realize it he is lucky that he isn't in jail. I think he is having a hard time understanding what happened. I am not a scientist however I think after psychosis the brain tries to piece together what happened in a reasonably logical way and the pieces just don't fit so confabulations are created.

I did my best to explain to him what me having power of attorney means. That if he decides to go off of medications that I think that he needs then I get to make that decision. I asked him if he is willing to have me help him get his life back on track, back to where we were before the Adderall, to be his attorney or decision maker and he said yes. It was heartbreaking to have my son tell me that he is only looking forward to being here with me and doing nothing because no one well ever want him. As I have always tried to do. I told him that he is so much more then that. That he is an awesome human being and that I will do my best to give him the live that he deserves. That I will not let schizophrenia do this to him without a fight. I love him too much. So no he can not come here and do nothing... My rules have not changed. That I will push him to be the person that I know that he is capable of being.

I asked him if he still had voices, not to lie to me because I know that he did. He says the entities are gone now and that he is alone, that it is just him. Apparently they were driving him nuts (I smiled too!), constantly nagging him. I told him these entities are a part of schizophrenia and that the Invega will help keep them away. Him wanting them gone is a good thing.

I asked him to be a little patient and to give me some time to try to get everything sorted out. I'm still waiting to hear back from disability and the lawyer. Hopefully Monday will have my phone ringing with the answers that I need.

Mom
BarbieBF

Clusterf....!

Generally speaking I am against swearing when other words can be used however I find myself thinking that clusterfuck best describes the situation I currently find myself.

Yesterday I received some news that had me smiling from ear to ear, for a little while anyways, until the reality of it all set in. As it stands right now my son will probably be released into my care! There is a saying that goes something like this: "The truth is like a lion. You don't have to defend it. Let it lose. It will defend itself." - St. Augustine. An accounting of my son's history and current circumstances did indeed speak for itself.

The relief I felt was short lived as my mind spun ahead to all the work that is still left to be done. All the work that has been unraveled. Sincerely hoping that the facts that I am currently looking at are not as bleak as they seem. If I am back to square one, where I was 18 months ago, I will not be impressed. My son's disability file out here may have been closed in order for a disability file to be opened where he is. If I have to start all over with disability and pay for my son's medications out of pocket yet again...

I have been advised that my son needs to be on a CTO (Community Treatment Order) which I totally agree with at least for now. The problem is that whatever conditions he is released under in British Columbia will not hold once we leave that province. He needs to be on one here in Ontario. Sounds easy right? Not if he doesn't meet the requirements in Ontario...

I am so pissed off right now! My son would most likely be in a home right now with daily support, learning to be an adult and chances are medication compliant and stable! But no... That wasn't good enough. Now look where he is?! Yup, I'm pissed!

Waiting for a call back from disability... their systems are down. Go figure! Once I hear back from disability I will have a better idea on what services I will require from a lawyer here. I did get a call back from the lawyer at the Public Guardian and Trust office and he confirmed it was as I thought, that anything I start in British Columbia doesn't apply to Ontario. Thankfully he is still technically a part of PACT out here so he will have access to treatment right away. Cross your fingers and toes for me that with a little (a lot!) of help I can figure all this out before I implode.

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

Discharged... What?!

That was pretty much my reaction on Friday morning when I called the hospital and was told that my son had been discharged. That my reaction was incredulous to say the least. Skeptical, shocked and mad were each fighting there way up to the surface as I was wondering who's ass I would put in that proverbial sling first. The lady in patient locating caught my obvious tone of bewilderment and fairly quickly said she would check for any notes regarding the discharge. He had been transferred to another hospital the night before. Whew! Would be an understatement on the relief I felt that he had not been discharged.

I called the new hospital and spoke to his nurse. She said that he was settled in and resting. I questioned the resting part as if he was awake and not moving I wouldn't call it resting. I asked if he was sedated and she said no he hadn't had much medications. I should have asked her if she noticed his foot going a mile a minute which I'm sure it was. I was asked if there was any foods that he liked because he wasn't eating and 'Was that normal for him?'. Sometimes I want to ask if they have any experience with psychosis from working in a psych ward? Because honestly I have to wonder. He is not eating because he is in psychosis. Hello! Anyone home up there? It reminded me of when my son was hospitalized last September (full psychotic break) and a nurse said to me 'Your son thinks you are trying to kill him. Do you know why?' I guess the diagnoses paranoid schizophrenia went over some peoples heads.

I patiently explained that yes it is normal for my son not to eat when he is in psychosis. He is to far in his own head or in psychosis to eat. Same with resting... He is not resting. I would bet my live on it that his mind or thoughts were racing a mile a minute. I was told that there was a patient phone that I could call and they would get him up to answer it. I said no I would wait a couple of days. Based on what I have seen in the past and what I was being told, there was no way that I was going to try and force my son to have a coherent conversation when he is obviously not up to it. Trying to force his brain to deal with reality before medications have a chance to work would be putting more stress on his brain which was certainly not needed, in my opinion.

I did let the nurse know which medications I believed would help to get him stable. Let her know that Trazodone would help him sleep and that Neurontin/Gabapentin helps a lot for his anxiety. All the while thinking that I sounded like a broken record since I had just done this less then a month ago and several other times over the past two months. I also gave another heads up on his actual diagnoses being paranoid schizophrenia with concurrent disorders. One being addiction so be careful with benzo's. I also gave a heads up on no stimulants for his ADHD - his foot going a mile a minute.

I just talked to my son on the patient phone. A fairly short conversation but at least he is still managing to respond to my I love yous. I asked him if he knew why he was in the hospital. He said because he hasn't been taking his medications since he went out there. I asked if he remembered hitting his grandmother. He stumbled and fell because he was almost dying although he doesn't know why he was almost dying. I seriously hate this disease at times like this. What it does to the mind and memory. If he can't see what schizophrenia is causing him to do... If he is sheltered from the reality of what he is capable of doing when he is in psychosis, how will he ever know what it is that we are fighting against and what the medications are helping to stop? I think he needs to know. He needs to know and see what schizophrenia is capable of making him do.

Still I set here questioning myself and not taking action. Honestly I can't believe I'm not following my gut on this... Like I haven't learned to trust it yet?! In life I think the things we feel the most quilt over are the things that we didn't do as apposed to the things we do wrong. We can sometimes be lucky enough to fix the wrongs that we have done but we can never go back and do what we should have done in the past. Will I have to deal with the guilt of doing nothing? God I hope not. I know why I'm not doing what I think is best. It's because I'm not sure of the support that I think that I should get to accomplish what is needed. As long as there is 'interference' then I will never have the assurance of knowing that bumps in the road are just that. Even if I decide to get guardianship, my son will always fight to take the easy road instead of centering on his own recovery. Round and round my mind goes...

Mom
BarbieBF

Tattoo, Ear Infection, Forum and Inpatient Again.

I finally worked up the nerve and before I could change my mind, made an appointment to get my first tattoo. I have wanted one for a very long time. I didn't get the one I have been thinking about getting for the past 20 years and instead settled on a nice renaissance script of my children's names with two purple hearts.

This was taken the day I got it done. I'm so happy with it! I don't think it could have turned out better and is exactly what I wanted. I already know what my next one is going to be! No I'm not addicted, at least I don't think so ;) On my left shoulder I want the names of my mom and dad.

I ended up going to the walk-in clinic on Monday. Tried to get an appointment with my family doctor but couldn't get one for that day. I was pretty sure I had an ear infection and the shooting pains around my right ear where getting more frequent and painful so rather then wait another day to start taking antibiotics I walked to the clinic. About 25 minutes later I was on my way back home with my antibiotics. Advil for the pain which I did have to take consistently until yesterday. Now just the odd one if it starts to hurt.

I have referenced in the past that I'm a moderator on a schizophrenia forum. I very much enjoy my interactions on this forum and do my best to contribute to the community and help anyone that I can. There are times though where it gets to me. Emotionally. Times like right now where I see a member being treated with such disdain that I have trouble getting my mind around it. Since I'm moderator I try not to get to emotionally involved in some of the posts as I don't want it interfering with my ability to moderate the forum from an unbiased perspective. So I will talk freely about it here. There is one member who's English skills are not so great. He uses words that tend to make understanding what he writes more difficult. He seems to also post with the perspective of having limited insight into his condition, if he is in fact diagnosed. Statistically speaking 40% plus have little to no insight into their disorders (anosognosia) so I don't see him as being anymore delusional or black and white in his thinking then most of the other members. In fact he seems to understand and follow the guidelines better then some who claim to be recovered. He certainly doesn't try to put other's down as other's have been doing to him on purpose. The forum has a handful of members who seem to think that their opinions are worth more then anyone else's and that because they have reached a certain point in their recovery that everyone else should be at that same point. Words like 'reality checking' and 'delusional' get thrown around like they justify treating another human being like they are sub-human, without regard to showing the least amount of respect, compassion, sympathy or empathy.

I really don't get it. A community of people that are fighting for understanding from this world, who want a safe place to be themselves without judgement and criticism. Then someone comes along who doesn't fit and he is treated like that child on the playground that is being picked on just because he is different or maybe is from a different country so can't communicate as effectively. He tries but his attempts get ridiculed and blown off as delusional. I have tried to accommodate by moving some posts from one category to another so as not to offend or cause more grievances. Then I think to myself what is that saying? I'm saying that this person doesn't fit... In a community of people who don't feel that they fit in this world with all it's judgments, stigmas and prejudices and I'm/they are saying that one of their own doesn't fit in a particular category because he is different! Have you ever been around one of those reformed smokers who because they quit they can't abide being around another smoker or even the smell of it? Fear of relapse is probably the biggest reason for this, in my opinion. They can't trust themselves to not give into temptation and light up so they site health reasons and all the reason's why we shouldn't smoke (because we aren't aware of them already ;)) to justify acting a certain way. Sometimes my sadness and anger when I see these things happening makes me think the forum should have a disclaimer stating that you must be medication compliant (even if they don't work), non-delusional or positive symptom free and fluent in layman's English to join. To join a schizophrenia forum! I needed to get that out...

Onward to my son. He is inpatient. I had talked to him on Monday and could tell that he wasn't doing any better. Same as the last conversation. I had to repeat everything 3-4 times to get him to answer. I told him about my tattoo and we had a bit of chuckle when he told me that he didn't miss me. I know that may sound a little rude but I have always appreciated my son's honesty on things like that. He did have the good grace to laugh when he said it :) When I told him that he could call me whenever he wanted and asked him why he hadn't called. He just hadn't thought to. He did respond to my 'I love you' and said it back... After he was taken to the hospital I found out that he has been talking to his voices and I guess physically interacting with his hallucinations. Not good. He was almost charged I guess with either assault or domestic violence. He physically hurt his grandmother. I can't say I was surprised at the call, in fact have been waiting for a much worse phone call. Thankfully they haven't pressed charges and he is currently to my knowledge on suicide watch as he stated he would rather die then be taken to the hospital. Due to other details I have gotten access to I can imagine the condition that he is currently in. Paranoid, delusional and thinking that the whole world is out to get him and trampling on his rights.

I have followed through on some of my previous phone calls and attempts to figure out what the next steps should be. It would be extremely helpful if they could come up with the same terminology for the different provinces or even the world as a whole. Substitute Decision Maker, Guardian, Private Committee, Power of Attorney, Section ?... One set for one thing and another set for something else. It doesn't appear that there is one procedure that will cover everything. Then there is the cost! If I could turn back the clock and go back to when he was 16 (or even before) and all this first started, knowing what I know now... So many documents would have been signed! Oh well... Can't go back right?

I have talked to his Dad so hopefully between the two of us we can get our son back on the right track. *fingers crossed* and toes and legs and arms!... I'm still holding back on doing anything legal. I don't want to take my son away from his family where he is if it can be avoided and if it is really where he wants to be. He came to me the last time of his own free will. For now these decisions can wait until my son is stable. Besides I may need what credit I do have if the hospital is lax  or stupid enough in their responsibility to my son to release him again when he shouldn't be.

Mom
BarbieBF

Painting, Cleaning, In and Out.

It's been a fairly busy week. Saturday hubby and I decided it's time to start doing some things for ourselves and our apartment. For awhile we were tossing around the idea of moving and now that we can as we finally have clear credit reports!, we have decided not to (at least for now). Go figure right! So in deciding to stay it was time to do some painting and fixing. Between my hubby's work dust and my son's temper tantrums there was some painting and patching up to do. I learned how to use PollyFilla to fill in the knife holes among other things. We haven't gotten to painting these parts yet as it's mostly doors and we are doing those last so fingers crossed I did an ok job. First it was deciding on some neutral colors. We decided on tan for the main living areas and linen for our bedroom and probably the spare bedroom too. So far we have done the entrance way, dining room, living room and our bedroom. I'm impressed, it looks good! Scrubbing the splattered paint off the bedroom floor was fun! As was scrubbing the paint off of the marble window ledges that the lovely painters did before I moved in. Contractors paid by apartment which explains the painted macaroni I discovered when I moved in and went to put my dishes away (I'm serious!). SOS and some elbow grease... Will a lot of elbow grease for me. Going over and over the same spot is my way of cleaning since I'm not really strong enough to get it off that easily. As I told my hubby, it's one of the very few times that I wish that I was a man and/or physically stronger. Honestly I gave up after two window ledges, 3-4 SOS pads and arms that felt like jelly. Getting the paint off the bedroom floor was a lot easier. I have even helped paint some walls which I think is equivalent to a couple of work-outs on my stepper so I don't feel so bad that I haven't done it in awhile ;) I thanked my chiropractor yesterday as a couple of years ago I would not have been able to anywhere near what I have been doing to help. In fact it was painting that got me to a chiropractor in the first place. The straw that broke the camels back combined with 13 year old whiplash, bad posture and a touch of scoliosis in my neck.

Saturday we also went bedroom shopping. What started out as just mattresses turned into a bedroom set. Hubby is tired of us not sleeping in the same bed. Between my insomnia, his sleep apnea and restless leg... I wasn't getting much sleep. I'm on the fence with this though as I have been enjoying have a bed to myself and not being jostled awake by his restless feet! lol Seriously though I do miss having him beside me, sometimes ;) The mattresses we have are old. They were my mother's and like almost everything else in our room is not less then 10-15 years old. I realized that at the age of 42 I have never had a new or matching bedroom set and haven't had a new bed in about 20 years. Yup it was time! I even figured out yesterday how to put off paying for it for like 8 months! A little juggling here and there but it can be done. By that time we should have our finances under control, hopefully, I think I'm seeing a job in my near future...

The bedroom set is supposed to get delivered on Sunday. Even hubby is excited about this. We have actually had fun shopping, painting and cleaning together. Some good old one on one, husband and wife bonding time! Including the nagging from me that he needs to put on his glasses so he can see the messes he is making... paint all over my canisters, the coffee maker, kettle etc. He started doing clean up in the tub. Not sure if we were thinking that we could get the painting all done last weekend. If we were then we were obviously not thinking clearly. We still have the spare bedroom and hallway to do. Really there is no rush though. The priority was getting the bedroom done before Sunday and thoughts of the delivery people scratching a newly painted hallway...

The spare bedroom. It's been my daughter's room, my brother-in-law's room, my son's room and now my hubby's room (until Sunday). I figure it's best to just start calling it the spare room since from day to day I have no idea who is going to be in it anymore.

I have only talked to my son once since he left and that was a fairly useless conversation. He was so 'distracted' that he could barely answer a simple question. Last Friday he was admitted to hospital. I still don't know why... Not that it matters now. I'm guessing it was for psychosis related reasons? Yesterday he was released. I sometimes wonder how much more disappointed I can get in the system but that is probably not a question I want answered. To quote Elvis Presley during the (19) '68 Comeback Special, "Never ceases to amaze me. Baby" There is no way, in my opinion, that he was stable enough after barely a week of being medication compliant. He was released after three weeks during his last hospitalization and was barely stable. The chances of him staying medication compliant when he currently has zero insight is slim to none. Unfortunately I didn't find out that he was getting released or that anyone was trying to release him until it was too late. It seems no one thinks that keeping me informed on what is happening with my son is important. I keep asking myself why I would expect any different? (Yes, perhaps I do need a little cheese with my whine)

A week ago I was pretty determined on what my next steps were going to be. I have gathered information on what it is that I want to do and I have contacted a lawyer and got some advise on the steps I should take and who I should contact. Yet, I find myself hesitating... I'm hesitating because of my son. If everyone, including him, is so determined to keep him mentally unwell or psychotic then perhaps I should let it happen. I must say it really irks me to even say that however until he can reach a point where he can see that the choices that he is making, and consequences, are doing him more harm then good then I'm fighting an uphill battle that may not be the right thing for right now. If it was just him... However it's not just him. As long as he has the support that he currently has and wants, albeit for the wrong reasons (no boundaries, rules or expectations), then it makes advocating for his mental well-being a lot harder. It's like having a leaky roof that does damage to your walls so you paint your walls, over and over instead of fixing the leaky roof. How much advocating or painting can I do if the leak in the roof is not being attended to? But what irritates me is that now no one is trying to fix that leaky roof and damage is being done even if it can't be seen.

My biggest fear is that by not doing anything, I am in fact, making the wrong decision. Hopefully I will know when to step in and deal with my son's resentment and hopefully it will not be too late.

Mom
BarbieBF