This is what my son asked me when he eventually got up after 4 pm. I sat with him on sofa for a bit so that we could talk some things through. I started the conversation with the fact that I know he got defiant about me bringing up the hospital however I want us to be able to have open discussions about it and schizophrenia. I let him know that he was doing much better the day before and I'm worried that the alcohol he drank may be making him worse again. He can't see it as he feels great which seems to be his answer when anyone asks him how he is doing. I'm great! He had questions about the Xbox, how it was put together, what it was and what invisible things were inside it. I let him know that he didn't question these things before that he knew what an Xbox was. He wanted to know how I could assist him with the spiritual entities. I didn't answer this one as I don't have an answer. Hopefully the Invega and time will lessen their impact on him.
I let him know my theory on why he is finding his bed or the sofa uncomfortable and that if we were to go away somewhere that he would still fill uncomfortable because it is coming from inside him because of schizophrenia. He acknowledged that he does feel uncomfortable inside. I said yes that's because there is probably too much dopamine in his brain right now. I talked to him about trying to make his bed more comfortable and cuddly by adding a comforter to sleep on. He liked that idea and I did this last night when I had him go to bed at 3.
He asked about working and I told him I don't think he is ready for that right now as when you work your employee needs to be able to count on you and I don't think he is ready for that. He agreed that he is too tired. We discussed how PACT can help him with this when he is ready. Currently picking up after himself is something that needs to start happening and he agreed that it is something that he should be doing.
I asked him how he felt about schizophrenia now. He said that he is confused about it which I think is a good thing. Sometimes we need to be confused to tear down old walls on what we think we know.
Yesterday I went looking in our apartment building for his whisky bottle since I haven't seen it. I couldn't find it. I asked him about it yesterday and he said that it was hidden with his wine... He wants to become a wine junkie. I suggested being a health junkie may be better for him ;) He said he was going for a walk last night to drink... I just told him to take his ID in case he gets picked up by the police since drinking in public is illegal. He probably didn't even leave the building... Speaking off, I need to sweep the buildings stairway of ashes as he has been sitting there to smoke sometimes since we don't smoke inside anymore.
I have delved a bit deeper into my understanding of word salad. Maybe word salad is not the most appropriate phrase for what I see happening with my son as his words do have meaning and connection with each other whereas word salad seems to imply sentences where words do not go together at all. So I learned something new today!
He seems to be improving although I'm very concerned about his cognition. He asked for assistance putting on his toque last night as he didn't seem to know how. He did make a pot of coffee though! He is putting on clean shirts every day. He did have a bath Wednesday morning however I will need to get him in the shower at some point as he is not getting clean and he needs to wash his hair. I know my husband wants to get a hair cut this weekend so maybe *fingers crossed* I can motivate him to go with and have a shower first.
His friend from across the hall just knocked on the door. He doesn't live there anymore however he must be visiting his dad. I told him no marijuana as it will land my son back in the hospital. His friend doesn't look good either. I asked him if he was ok and he said ya, tired and not eating... I would guess too much partying as happens across the hall. I'm so glad that I have given up that lifestyle. The further I am from it the more pathetic it appears to me. The inability to put family above addiction. It's entirely too sad because there is a choice with this mental illness called addiction. I guess I can't preach though since I have been there. I'm just so thankful that I am not there anymore! Thankfully my son was still sleeping and *fingers crossed* that he leaves to go home before my son becomes aware of his presence.
I did manage to get an Omega 3 into him last night by joking that I was his elder and that it's part of his 'healthy life' note...
Still trying to get his drug benefits...
It's 1:41 pm and he just got up...
Mom
BarbieBF
Friday, November 28, 2014
Thursday, November 27, 2014
Here we go again... It's just geography.
My son keeps talking about wanting to move. Move to a place that is warmer. Move to a place where we live in a hut. Move to a place where he can just sit in the sand. The problem is that there is no moving away from yourself or schizophrenia. The issues or uncomfortable feelings that are motivating this thought is coming from within and will go with... They will follow you anywhere on this earth or beyond if they are not faced and dealt with. I wish he could run from schizophrenia but he can't. It's getting better but you can see it when you watch my son. When he is walking or sitting and you can tell that he just isn't comfortable within his own skin or body. He is unsure of how to stand, unsure of how to sit or where to put his arms. When he says things like: It appears to be cold out here. It appears... He can't tell for sure or interpret what his own body is telling him. I will watch him walk around the apartment and ask him if he is confused or lost and first he says no then says yes that he is confused. I tell him that it's ok to be lost and confused because it is. It happens to us all sometimes.
He decided to spend the last of his money on a small bottle of fireball whiskey last night. I can't stop him from buying it or drinking it, I can only keep the boundaries in place that he can't have or drink it in the apartment and he didn't. He doesn't want to acknowledge that it may trigger some psychosis symptoms. We will see how the voices are today. He denied having them yesterday however I told him that I know better and can tell that he does. He said he isn't talking to them. No but he is listening because sometimes he 'answers me' when I haven't said anything. Really I take this as a good sign that the voices are becoming less distinct if he can't tell the difference between them or me talking.
Some of the old attitudes seem to be coming back. Oh joy! When I tried talking to him about the fact that he may end up back in the hospital if he goes to far with the alcohol, I got told not to bring up the hospital again with attitude and a totally defiant look on his face. He really doesn't like it when I'm matter of fact about things... It's going to make it hard to form any type of partnership with him about keeping him out of the hospital if he is going to be defiant about me bringing it up. He probably doesn't want to form a partnership with me. In fact I'm pretty sure he would much rather keep me as his scapegoat instead of looking at the real reasons why he feels the way that he does. Schizophrenia.
Last night he fell asleep on the sofa and I had him go to bed around 10. I woke up at 1 to him up saying that he couldn't go to sleep even on the sofa. No of course not. I'm sure the alcohol and his psychosis was having fun with his brain. I guess my tone was too strict when I told him to go to bed as I got told not to yell at him. He said his bed wasn't comfortable and neither was the sofa that it was 'this place'. He can blame geography all he wants but when those feelings of being uncomfortable is coming from within then it wouldn't have mattered if he was sitting outside a hut in the sand... He still wouldn't be comfortable. I went into his room and tucked him in, kissed his head and told him that I was sorry for yelling at him. He said it was ok. I left the bathroom light on for him as I know he prefers that. Well it's almost 12 noon and he is still sleeping :) I'm thinking about putting an extra quilt on his bed for him to lie on so that it feels more softer or cuddly. Maybe it will help?
I'm afraid I'm a little out of practice on walking on eggshells. Really I'm not sure that doing so is even the best thing for him. I can't pretend like he doesn't have schizophrenia. I can't pretend like psychosis and another hospital stay could be just around the corner. Should I because schizophrenia is causing him to not be able to deal with life on it's simplest terms? It's a catch 22. Stress triggers but he can't handle stress because he is already triggered. I guess I need to get back to some basics. Simple yes or no answers and think/breathe before speaking or responding. Ahhh the good old days!
I had trouble getting him to take his Lithium last night. Lots of nicely stated reminders yet he just quietly refused as he does... Drinking his fireball whiskey was the priority and in the past he gets sick when he drinks and takes his medications. I let him know that it was most likely the Clozapine that caused this and not the low dose of Lithium that he is currently taking. Only 300 mg. He finally toke it. Other then the first night he has also backed off with the supplements. The night before he only toke one of the two Omega 3's and last night he wouldn't take any. He puts up his own walls on doing anything that will help to get him better. I don't know if this is part of the ODD (Oppositional Defiant Disorder) that I think he has or part of schizophrenia, lack of insight. Perhaps a combination.
Mayo Clinic - Oppositional Defiant Disorder
So I'm back to adding lots of cilantro to our food when cooking. Click on cilantro to go to it's nutritional value. I will have to bring back the green and spinach salads as well. While I don't believe that diet can 'cure' schizophrenia, I do believe that it can help to minimize some symptoms. Now how to convince my son of that when he gets defiant and doesn't want me discussing his schizophrenia?
I have some refresher reading to do...
Food For The Brain
Called the pharmacy to see if they had received a drug benefit card from ODSP. Not yet. Called ODSP and of course couldn't get through as their phone system is still messed up. Called PACT and let his case worker know so she can follow up with ODSP.
My son finally woke up just before 2:30. Hacked up a storm. Nice! I thought he was being sick but no... Then went back to bed.
Mom
BarbieBF
He decided to spend the last of his money on a small bottle of fireball whiskey last night. I can't stop him from buying it or drinking it, I can only keep the boundaries in place that he can't have or drink it in the apartment and he didn't. He doesn't want to acknowledge that it may trigger some psychosis symptoms. We will see how the voices are today. He denied having them yesterday however I told him that I know better and can tell that he does. He said he isn't talking to them. No but he is listening because sometimes he 'answers me' when I haven't said anything. Really I take this as a good sign that the voices are becoming less distinct if he can't tell the difference between them or me talking.
Some of the old attitudes seem to be coming back. Oh joy! When I tried talking to him about the fact that he may end up back in the hospital if he goes to far with the alcohol, I got told not to bring up the hospital again with attitude and a totally defiant look on his face. He really doesn't like it when I'm matter of fact about things... It's going to make it hard to form any type of partnership with him about keeping him out of the hospital if he is going to be defiant about me bringing it up. He probably doesn't want to form a partnership with me. In fact I'm pretty sure he would much rather keep me as his scapegoat instead of looking at the real reasons why he feels the way that he does. Schizophrenia.
Last night he fell asleep on the sofa and I had him go to bed around 10. I woke up at 1 to him up saying that he couldn't go to sleep even on the sofa. No of course not. I'm sure the alcohol and his psychosis was having fun with his brain. I guess my tone was too strict when I told him to go to bed as I got told not to yell at him. He said his bed wasn't comfortable and neither was the sofa that it was 'this place'. He can blame geography all he wants but when those feelings of being uncomfortable is coming from within then it wouldn't have mattered if he was sitting outside a hut in the sand... He still wouldn't be comfortable. I went into his room and tucked him in, kissed his head and told him that I was sorry for yelling at him. He said it was ok. I left the bathroom light on for him as I know he prefers that. Well it's almost 12 noon and he is still sleeping :) I'm thinking about putting an extra quilt on his bed for him to lie on so that it feels more softer or cuddly. Maybe it will help?
I'm afraid I'm a little out of practice on walking on eggshells. Really I'm not sure that doing so is even the best thing for him. I can't pretend like he doesn't have schizophrenia. I can't pretend like psychosis and another hospital stay could be just around the corner. Should I because schizophrenia is causing him to not be able to deal with life on it's simplest terms? It's a catch 22. Stress triggers but he can't handle stress because he is already triggered. I guess I need to get back to some basics. Simple yes or no answers and think/breathe before speaking or responding. Ahhh the good old days!
I had trouble getting him to take his Lithium last night. Lots of nicely stated reminders yet he just quietly refused as he does... Drinking his fireball whiskey was the priority and in the past he gets sick when he drinks and takes his medications. I let him know that it was most likely the Clozapine that caused this and not the low dose of Lithium that he is currently taking. Only 300 mg. He finally toke it. Other then the first night he has also backed off with the supplements. The night before he only toke one of the two Omega 3's and last night he wouldn't take any. He puts up his own walls on doing anything that will help to get him better. I don't know if this is part of the ODD (Oppositional Defiant Disorder) that I think he has or part of schizophrenia, lack of insight. Perhaps a combination.
Mayo Clinic - Oppositional Defiant Disorder
So I'm back to adding lots of cilantro to our food when cooking. Click on cilantro to go to it's nutritional value. I will have to bring back the green and spinach salads as well. While I don't believe that diet can 'cure' schizophrenia, I do believe that it can help to minimize some symptoms. Now how to convince my son of that when he gets defiant and doesn't want me discussing his schizophrenia?
I have some refresher reading to do...
Food For The Brain
Called the pharmacy to see if they had received a drug benefit card from ODSP. Not yet. Called ODSP and of course couldn't get through as their phone system is still messed up. Called PACT and let his case worker know so she can follow up with ODSP.
My son finally woke up just before 2:30. Hacked up a storm. Nice! I thought he was being sick but no... Then went back to bed.
Mom
BarbieBF
Wednesday, November 26, 2014
Some good, some bad but coming together.
As I figured my son bought chewing tobacco along with a cigarette case and a lighter. I do believe he is now broke which in some ways is a good thing. He also went to the store last night for cigars and instead came back with a hookah and flavored herb to smoke in it. I checked and it was 0% nicotine and tar, just flavored herb. He didn't get much enjoyment out of it which means it will just turn into something else I have to keep an eye on that it doesn't get used for marijuana. I already warned him that if it does then it's going in the garbage then and there. He has already started asking McDonald's and if I can 'give him' money every week. No I can't. I'm not an endless source of money and it's time he adjusted to that. All these extras add up and really if he wants McDonald's then he should have passed on the speaker, hookah, salvia & pipe and the two energy drinks he had last night and ended up being up all night. He has spent $325 in less then 3 days. I don't have $325 to blow on whatever I want. Technically I have $0 since I have no income and this last week has cost my hubby about $2000 since his earnings pays the bills.
We did receive a phone call back from Ontario Works for the medication coverage. They were able to confirm that his ODSP (disability) file was on hold so not closed, so they would not cover it. I was told to talk to a supervisor at ODSP about having his file reinstated and if that didn't work then our MP. I told her I've already called ODSP 4 times and left 3 or 4 messages and I don't have a week for a MP to do something. Luckily my son's case worker from PACT took him out today. She took him to the PACT office and he signed the necessary releases so that we can talk and she can talk to ODSP etc. Yah! She took him directly to the ODSP office and to his bank to get copies of his bank statements. She will be faxing them to ODSP and hopefully soon they will be sending a copy of a drug benefit card to the pharmacy so we can get his Trazodone tonight. Apparently she was told that my son should be receiving an ODSP payment at the end of December FOR December. Sounds good right? He has already received monies FOR December and technically you can't double dip. The fact that he will receive payment at the end of December for December confirms what I have been saying about ODSP all along. They pay a month behind when it's room and board. I'm guessing that they may be assuming that British Columbia works the same way and that the payment he received at the end of November was for November but that is not the case. *sigh* I'm not sure I even care at the moment. They can figure it out once they get his bank statements.
My son received a notice in the mail yesterday from Fido and they will be cancelling his account and sending it to collections for non-payment. He also owes Koodo. He got two cell phones while in the shelter and unstable. One got stolen and he got another one with another service provider. Maybe him having bad credit will stop him from being able to do this again? Granted it will stop him from getting a cell phone when he is stable and ready to really have one however I'm not sure this is something I should be taking responsibility for.
After his case worker dropped him off he fairly quickly went to sleep. I'm glad as I know he needed it after being up all night. *fingers crossed* we get the Trazodone filled tonight and he takes one and gets a good night sleep.
We had steak and perogies for dinner last night which he ate good. Tonight I'm thinking about making a french loaf of bread and spaghetti with meatballs. He should enjoy that too, I know hubby will!
Mom
BarbieBF
We did receive a phone call back from Ontario Works for the medication coverage. They were able to confirm that his ODSP (disability) file was on hold so not closed, so they would not cover it. I was told to talk to a supervisor at ODSP about having his file reinstated and if that didn't work then our MP. I told her I've already called ODSP 4 times and left 3 or 4 messages and I don't have a week for a MP to do something. Luckily my son's case worker from PACT took him out today. She took him to the PACT office and he signed the necessary releases so that we can talk and she can talk to ODSP etc. Yah! She took him directly to the ODSP office and to his bank to get copies of his bank statements. She will be faxing them to ODSP and hopefully soon they will be sending a copy of a drug benefit card to the pharmacy so we can get his Trazodone tonight. Apparently she was told that my son should be receiving an ODSP payment at the end of December FOR December. Sounds good right? He has already received monies FOR December and technically you can't double dip. The fact that he will receive payment at the end of December for December confirms what I have been saying about ODSP all along. They pay a month behind when it's room and board. I'm guessing that they may be assuming that British Columbia works the same way and that the payment he received at the end of November was for November but that is not the case. *sigh* I'm not sure I even care at the moment. They can figure it out once they get his bank statements.
My son received a notice in the mail yesterday from Fido and they will be cancelling his account and sending it to collections for non-payment. He also owes Koodo. He got two cell phones while in the shelter and unstable. One got stolen and he got another one with another service provider. Maybe him having bad credit will stop him from being able to do this again? Granted it will stop him from getting a cell phone when he is stable and ready to really have one however I'm not sure this is something I should be taking responsibility for.
After his case worker dropped him off he fairly quickly went to sleep. I'm glad as I know he needed it after being up all night. *fingers crossed* we get the Trazodone filled tonight and he takes one and gets a good night sleep.
We had steak and perogies for dinner last night which he ate good. Tonight I'm thinking about making a french loaf of bread and spaghetti with meatballs. He should enjoy that too, I know hubby will!
Mom
BarbieBF
Tuesday, November 25, 2014
Salvia and psychiatrist's visit
We have had our run in with Salvia and Wild Dagga in the past when my son first came to live with me April 2013. It seems we were destined to have another run in with it yesterday.
DrugFacts: Salvia
I wrote about it in my first chapter here: http://schizophreniamomsjourney.blogspot.ca/p/1-my-big-boy-is-home.html
It produces hallucinogenic experiences that mimic psychosis. I had forgotten this and my son had already talked about wanting to get some on the plane ride home. I just told him not in the home so of course off he went to the corner store and came home with it and a pipe. I looked it up again and informed that it was a no go and why. He didn't argue and said ok to throwing it out and didn't put up a fight about me throwing out the pipe as well stating whatever didn't cause an argument between us. I would have to say I'm really liking the Invega :)
I'm not sure how much of what happened between us before he was taken to the shelter is playing a role here however he is still wanting to be out on his own. I think he still wants to do what he wants when he wants however without the attitude and since he can't do that here I think it is motivating him to want his own place. The reality is that him wanting his own place right now is not a good thing. He is not capable of taking care of himself. We are in agreement that a group home will help to teach him the necessary skills to take care of himself. He will always have people to talk to and will never be alone. He will be a part of that community and the things that they do. I assured him that this happening does not stop me from being mom that he will never lose this. I will always be a part of his life no matter where he is.
I did take a peak at some notes on the laptop yesterday... There is one dated July 30 stating not to worry that he would soon be moving to a place where he could live in peace. Kind of telling that perhaps the whole scenario was partially orchestrated by him to get what he wanted. Him telling me that he wanted me to kick him out because he didn't want to be here seems to support this. He had a goal in mind and he made sure it happened. I guess I will have to have my own guards up to make sure I don't get pulled into this type of thinking again since my son is very good at knowing what buttons to push.
My son seems to be doing much better. Yesterday there was no obvious signs of voices. No laughing for no reason. He went to the corner store by himself and he also biked to Walmart by himself to get a new PS4 game. He also came back with a speaker. Oh joy! Definitely have to get him out to buy enough cigarettes to last him awhile before his money is all gone as I gave him his bank card yesterday, letting him know that that money may have to last him 3 months since I still don't know the status of his disability file here.
When he got up yesterday the first thing he did was to walk out and pat me on the head. He does this sometimes and I think it's his way of showing me affection. He set his PS4 up in the living room and I let him know that is fine however in the evenings when my husband is home then he can't have control over the living room TV. He had trouble getting the PS4 screen to fit the TV screen so I looked it up and fixed it. He commented how I seem to be able to fix these things when he can't just like I have in the past for him. Hubby commented along the lines that I'm more then a pretty face. Yup I'm all that! ;) It felt good to have this banter happening with my son.
I made fish, rice and vegetables for dinner since I know my son likes rice and the fish is good for his brain, especially right now. He ate all of his rice and vegetables and over half of his fish. I was impressed! He even took 2 Omega 3-6-9 supplements and a multivitamin. We had discussed the Omega 3 on the plane as being part his 'very healthy life' note. While there doesn't seem to be conclusive evidence that Omega 3 helps or prevents schizophrenia there are still a lot of studies and testimonials showing that it can help with symptoms.
Omega 3 fish oils tested as preventative approach to schizophrenia with positive results
I'm really hoping that I can get him started on some healthy routines and habits now so that as he gains stability there will be less resistance to following through on them.
We discussed an appropriate bedtime. I wanted 11 however he asked for somewhere between 12:15 and 12:45 and I agreed. My son is pretty consistent in not following through or following rules... He was still up at 3 so I shooed him off to bed. Of course there was the usual me getting up to ask him to turn things down as it was keeping me awake. I'm guessing my insomnia is going to love this! As I was finally getting it under control...
His psychiatrist was here this morning. He will be doing a prescription for Trazodone that my son can take as needed. He suggested other ones like Seroquel which is a sedating antipsychotic however I said no as I know my son didn't like it the last time he was put him on it. I suggested the Trazodone as I know that he never had a problem with taking it other then not wanting to take 200 mg. He didn't mind taking 100 mg when he did take it. He agreed when the psychiatrist asked him about it. I asked the psychiatrist about his Gabapentin/Neurontin since I still have them and he said it's probably best to limit the number of medications he is taking for now. I have always appreciated the approach of his psychiatrists here to not have him on more medications than is necessary. I was worried that the amount of his Invega shot may not be high enough however he is doing better now so hopefully we can keep it at 75 mg. It appears that a Community Treatment Order is a no go for now. Even though he was inpatient for over 30 days in British Columbia, he has not been inpatient for over 30 days here in Ontario so he doesn't meet the criteria here. He has to have been inpatient for 30 days within the last 3 years here in Ontario or a previous CTO in Ontario, which hasn't happened.
Community Treatment Orders - Ontario
He wanted to call his friend to go see him however I let him know that I am saying no to that happening right now as he is unable to say no to drugs and alcohol on his own so for now I get to be the bad one and say no for him. He wanted to know why it's such a bad thing so I asked him how many breaks would he like to have? And explained that each break causes brain damage so how much damage does he want to do? If he wants to become retarded (sorry if that offends anyone) then keep going... He can't remember how to sign into online banking or how to use his visa bank card and I explained that's because his last break seems to have caused some damage. He seems fairly accepting of letting me think for him right now however I'm not sure how long that is going to last. He also seems agreeable to participating more with PACT and their group programs as I told him that that is another area that he can become a part of that community. This came up when he asked me for ideas on how to fill in his morning routines. He actually just talked to his case worker as he asked about having someone to talk to do about his personal problems so I suggested he talk to PACT. I'm hoping to further his bound with them so that he knows that they are always there to help him and support him. She is coming to see him tomorrow and they may be going for coffee!
PACT is trying to get his Trazodone prescription done and have it delivered to us by the pharmacy. Sometimes I get a little tired of having to explain how thing work to people :) I asked who was going to pay for it? The pharmacy should have his last ODSP (disability) card... Yes and they get a new card every month so the one sent out for September will not cover November. *sigh* They haven't been able to get a hold of ODSP either. We were given a number to call for medical coverage outside of ODSP and they should be calling us back tomorrow as his file was marked as urgent. *fingers crossed* they approve him. I wish I had known about this the last time as I might not have had to pay for his medications for 3 months. Oh well... Live and learn right? His case worker may even go to ODSP in person tomorrow if they can't get anywhere. I told her it's really nice to have someone do something for me for a change!
Hubby is on his way home from work and it's off to get cigarettes... Knowing my son he will also get some chewing tobacco. Yes ewww... Although he said it's better then satisfying his other addictions which I have to agree :)
Mom
BarbieBF
DrugFacts: Salvia
I wrote about it in my first chapter here: http://schizophreniamomsjourney.blogspot.ca/p/1-my-big-boy-is-home.html
It produces hallucinogenic experiences that mimic psychosis. I had forgotten this and my son had already talked about wanting to get some on the plane ride home. I just told him not in the home so of course off he went to the corner store and came home with it and a pipe. I looked it up again and informed that it was a no go and why. He didn't argue and said ok to throwing it out and didn't put up a fight about me throwing out the pipe as well stating whatever didn't cause an argument between us. I would have to say I'm really liking the Invega :)
I'm not sure how much of what happened between us before he was taken to the shelter is playing a role here however he is still wanting to be out on his own. I think he still wants to do what he wants when he wants however without the attitude and since he can't do that here I think it is motivating him to want his own place. The reality is that him wanting his own place right now is not a good thing. He is not capable of taking care of himself. We are in agreement that a group home will help to teach him the necessary skills to take care of himself. He will always have people to talk to and will never be alone. He will be a part of that community and the things that they do. I assured him that this happening does not stop me from being mom that he will never lose this. I will always be a part of his life no matter where he is.
I did take a peak at some notes on the laptop yesterday... There is one dated July 30 stating not to worry that he would soon be moving to a place where he could live in peace. Kind of telling that perhaps the whole scenario was partially orchestrated by him to get what he wanted. Him telling me that he wanted me to kick him out because he didn't want to be here seems to support this. He had a goal in mind and he made sure it happened. I guess I will have to have my own guards up to make sure I don't get pulled into this type of thinking again since my son is very good at knowing what buttons to push.
My son seems to be doing much better. Yesterday there was no obvious signs of voices. No laughing for no reason. He went to the corner store by himself and he also biked to Walmart by himself to get a new PS4 game. He also came back with a speaker. Oh joy! Definitely have to get him out to buy enough cigarettes to last him awhile before his money is all gone as I gave him his bank card yesterday, letting him know that that money may have to last him 3 months since I still don't know the status of his disability file here.
When he got up yesterday the first thing he did was to walk out and pat me on the head. He does this sometimes and I think it's his way of showing me affection. He set his PS4 up in the living room and I let him know that is fine however in the evenings when my husband is home then he can't have control over the living room TV. He had trouble getting the PS4 screen to fit the TV screen so I looked it up and fixed it. He commented how I seem to be able to fix these things when he can't just like I have in the past for him. Hubby commented along the lines that I'm more then a pretty face. Yup I'm all that! ;) It felt good to have this banter happening with my son.
I made fish, rice and vegetables for dinner since I know my son likes rice and the fish is good for his brain, especially right now. He ate all of his rice and vegetables and over half of his fish. I was impressed! He even took 2 Omega 3-6-9 supplements and a multivitamin. We had discussed the Omega 3 on the plane as being part his 'very healthy life' note. While there doesn't seem to be conclusive evidence that Omega 3 helps or prevents schizophrenia there are still a lot of studies and testimonials showing that it can help with symptoms.
Omega 3 fish oils tested as preventative approach to schizophrenia with positive results
I'm really hoping that I can get him started on some healthy routines and habits now so that as he gains stability there will be less resistance to following through on them.
We discussed an appropriate bedtime. I wanted 11 however he asked for somewhere between 12:15 and 12:45 and I agreed. My son is pretty consistent in not following through or following rules... He was still up at 3 so I shooed him off to bed. Of course there was the usual me getting up to ask him to turn things down as it was keeping me awake. I'm guessing my insomnia is going to love this! As I was finally getting it under control...
His psychiatrist was here this morning. He will be doing a prescription for Trazodone that my son can take as needed. He suggested other ones like Seroquel which is a sedating antipsychotic however I said no as I know my son didn't like it the last time he was put him on it. I suggested the Trazodone as I know that he never had a problem with taking it other then not wanting to take 200 mg. He didn't mind taking 100 mg when he did take it. He agreed when the psychiatrist asked him about it. I asked the psychiatrist about his Gabapentin/Neurontin since I still have them and he said it's probably best to limit the number of medications he is taking for now. I have always appreciated the approach of his psychiatrists here to not have him on more medications than is necessary. I was worried that the amount of his Invega shot may not be high enough however he is doing better now so hopefully we can keep it at 75 mg. It appears that a Community Treatment Order is a no go for now. Even though he was inpatient for over 30 days in British Columbia, he has not been inpatient for over 30 days here in Ontario so he doesn't meet the criteria here. He has to have been inpatient for 30 days within the last 3 years here in Ontario or a previous CTO in Ontario, which hasn't happened.
Community Treatment Orders - Ontario
He wanted to call his friend to go see him however I let him know that I am saying no to that happening right now as he is unable to say no to drugs and alcohol on his own so for now I get to be the bad one and say no for him. He wanted to know why it's such a bad thing so I asked him how many breaks would he like to have? And explained that each break causes brain damage so how much damage does he want to do? If he wants to become retarded (sorry if that offends anyone) then keep going... He can't remember how to sign into online banking or how to use his visa bank card and I explained that's because his last break seems to have caused some damage. He seems fairly accepting of letting me think for him right now however I'm not sure how long that is going to last. He also seems agreeable to participating more with PACT and their group programs as I told him that that is another area that he can become a part of that community. This came up when he asked me for ideas on how to fill in his morning routines. He actually just talked to his case worker as he asked about having someone to talk to do about his personal problems so I suggested he talk to PACT. I'm hoping to further his bound with them so that he knows that they are always there to help him and support him. She is coming to see him tomorrow and they may be going for coffee!
PACT is trying to get his Trazodone prescription done and have it delivered to us by the pharmacy. Sometimes I get a little tired of having to explain how thing work to people :) I asked who was going to pay for it? The pharmacy should have his last ODSP (disability) card... Yes and they get a new card every month so the one sent out for September will not cover November. *sigh* They haven't been able to get a hold of ODSP either. We were given a number to call for medical coverage outside of ODSP and they should be calling us back tomorrow as his file was marked as urgent. *fingers crossed* they approve him. I wish I had known about this the last time as I might not have had to pay for his medications for 3 months. Oh well... Live and learn right? His case worker may even go to ODSP in person tomorrow if they can't get anywhere. I told her it's really nice to have someone do something for me for a change!
Hubby is on his way home from work and it's off to get cigarettes... Knowing my son he will also get some chewing tobacco. Yes ewww... Although he said it's better then satisfying his other addictions which I have to agree :)
Mom
BarbieBF
Monday, November 24, 2014
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
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
Wednesday, November 19, 2014
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
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
Friday, November 7, 2014
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
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
Thursday, November 6, 2014
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
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
Wednesday, November 5, 2014
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
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
Monday, November 3, 2014
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
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
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