'I'm seemingly not living very well.' Is what my son said to me yesterday when I pointed out for the umpteenth time that the patio table was not an ashtray. No he is not functioning very well at the moment.
The fact that he recognizes that he isn't living/functioning very well, I think is a good thing.
I don't know if it's that I'm perhaps a bit fed up with schizophrenia or if it's that I have been going through a phase of acceptance. Both I guess. On one hand I don't seem to have the motivation to be blogging, tweeting etc about mental illness. I think I just needed a bit of a break from it on social media and honestly I'm staring it in the face 24/7 at the moment and that's enough for me right now.
To a certain extend I have always accepted schizophrenia however I'm not sure I accepted how little control I have over it. On Monday and Tuesday evening my hubby and I attended a group through ADAPT for caregiver's of concurrent disorders (addiction and mental illness). Yes I pointed out that according to the DSM that addiction is now considered to be a mental illness ;).
For the first time I am seeking help in dealing with or coping with what our family is going through. It feels good. The 3 C's came up with a twist and I really liked it. The 4 C's: I didn't Cause it, I can't Control it, I can't Cure it but I can learn to Cope. I have always accepted that I didn't cause it and even that I don't have very much control over it however I have still been trying to control it to the best of ability. That ever present hope that if I do enough then my son will go into remission and start to build a life for himself.
I still have that hope however I can't build his life for him. I can't cure his schizophrenia. I can't...
It's been just over 2 weeks since I took him off the Latuda and started the Olanzapine. It's felt like a long 2 weeks. I have to keep reminding myself that it's only been 2 weeks. If someone broke a limb no one would expect recovery in just 2 weeks. You are looking at months at least. Even with the common cold it can take up to 3 months for the cough to completely go away. Yet here I am thinking: It's been 2 weeks, why hasn't the medication fixed this yet? *face palm* I really do know better. It's just hard to watch and wait.
Something that has been on my mind lately is something I read in an article about asylums or better yet how we need long term facilities. We do. I remember reading that people going through crisis had a place to go and just be or adjust, taking all the time they needed. I wonder if my son needs time to just be and adjust. Time to learn and recognize his own schizophrenia.
Over the past couple of weeks I have been noticing things. When I ask my son if he is hallucinating I don't get the auto-response of no. Now it's I think so. He is learning to recognize that what he sees, I don't. One day I noticed that he was very clammy/sweaty and asked if he was having an episode and he answered with I think so.
So I'm thinking: If I jump in and up his medications is this the right thing? On the surface the answer may seem like a yes. I'm not so sure. Maybe he needs to be in a place where he is stable enough to be aware of what schizophrenia is doing to him so that he can learn or see what it is also keeping him from doing. Living!
He seemed to be slowly improving until Wednesday when he went to the library with part of a group through PACT. He came back a bit more symptomatic and that night didn't sleep well. Yesterday he was off again and I even caught him masturbating in the living room. Can't say I was impressed with that ;). I let him know that I didn't like it and asked him to not do that in the living room. He agreed...
I think the stress of going to the library was too much for him right now. For a bit I actually wondered if he smoked marijuana with someone however I didn't see the other signs and he wasn't relaxed at all so I'm ruling that out. When I told him that he needed to get ready to go he said he didn't want to. I reminded him that he had told his case worker and nurse that he would go. I got him clean cloths and got his backpack ready for him. I didn't tell him that he had to go or that he could stay home. I let him know that if he found it too much that he could come home and that I think he should at least try that getting out may be good for him.
What struck me during the above conversation was like a flashback to when they are small and don't want to go to school. That's another twist that schizophrenia has thrown at us. He has been childlike for lack of a better word. Even my hubby has commented that sometimes when he answers me it's like he is a kid. Him not wanting to go to group was like a child not wanting to go to school. He went because even though I didn't tell him he had to, I didn't tell him couldn't and like a child he was in a way doing what he was told.
My main goal this last couple of weeks has just been to keep him on a good schedule for bed and spending time with him. I have been massaging and scratching his back whenever he asks which is 3-7 times a day. Sometimes at 6 in the morning... oi. It would be nice if it was after I had my coffee but oh well. When he asks, off I go. Every night I spend time with him, just cuddling/holding him. I was a little uncomfortable with this in the beginning however I have lightened up about it. When I first started massaging his back I could visibly see and feel him relax as I was doing it. I think it's been a good experience for both of us. It seems to be bringing us closer together. Hubby has been vacated to the smaller sofa while my son and I occupy the big one, while we watch our TV shows after dinner. Sometimes he puts his head in my lap. Yesterday I even got him to take 2 omega-3! The day before 2 multi-vitamins. I smiled when he walked away because I don't think he even realized what had happened. He stopped beside me while I was getting hubby and I our supplements, I handed him the multi-vitamins and he took them. :) Same with the omega-3. I offered him 2 and first he said no so I asked him to take just one and he decided to take both of them!
It's been a lot of going behind him and putting stuff away. Making sure things are turned off or reminding him that he has things turned on, like the deep fryer ;). I have been pointing all these things out to him however I have been doing it with a very loving tone. No judgments or being mad. Just letting him know that he isn't doing them. I think that is why he was able to say or see that he isn't living (functioning) very well. He knows that he hasn't been able to do these minor things.
I haven't been taking him out much. Realistically I think that even grocery shopping would take more energy then he has right now. I haven't told him that he can't come with us however I have stated that being clean needs to happen for him to come. Since he doesn't have it in him to really do this then he decides not to come. No worries he still gets his fair share of treats and usually McDonald's that we pick up for him on the way back.
With the hygiene thing... Again I have been pointing it out and again with a loving tone. Last weekend we got him new track-pants as he lost some weight and although the same size, they fit him better due to the style. That night I let him know he needed to get clean and put on clean cloths. He asked if he could not shower. I let him know that he didn't have to but I was going to clean him. He replied: You're going to clean me, ok let's do this... I washed his pits, neck, face and hands and had him put on all clean cloths. He even asked me to get him clean underwear. ;)
Slowly he seems to be becoming more aware of things like his own body odor. Baby steps right?
I'm in the middle of making flat bread as hubbies family is having a get together tomorrow. Not sure what to do about my son. Yesterday he was asking about the date and checking his bank account. Addiction... While he wants to come tomorrow, as soon as he realizes or remembers the date again... Take him with us when he will have triggered symptoms again or leave him home alone with no one making sure he isn't burning the house down ;)
I almost forgot. I finally booked camping! Next Saturday so that should hopefully give him something to look forward to.
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.
Showing posts with label Anosognosia. Show all posts
Showing posts with label Anosognosia. Show all posts
Friday, May 29, 2015
Tuesday, February 3, 2015
He is not OK. Medications.
Like the title says... I really wish that I could pinpoint what triggered or caused this to be happening since Saturday night however I think what it boils down to is the wrong medication(s). For two years now I have read articles and stories about the difference that the right medication(s) and the right dose of medication(s) can make.
Currently my son is only taking one antipsychotic regularly and that is the Invega. He does take Olanzapine sometimes but only when I'm able to 'nicely' suggest it so that he can get a good nights sleep. As I did last night and he said that he took one.
In the past my son was the most stable and recovering while on Clozapine/Clozaril and Risperidone. How many of you add these medications to your computer's dictionary so that you know if you have spelled them right or not? ;) In June 2014 before the Adderall my son was maintaining stability and improving on 150 mg of Clozapine and 1 mg of Risperidone. Over a period of about nine months he had titrated down from 450 mg to 150 mg of Clozapine. Neurontin/Gabapentin and Trazodone was also in there however he never took it regularly. So he was doing really good on two antipsychotics that he took regularly. We added the Adderall for ADHD, lost stability and unfortunately have not gotten back to where he was in June 2014.
As most parents/caregivers know med-compliancy is a big part of the picture. What is important to me is not what is important to my son. If you have been reading my blog then you may be aware that I'm pretty sure my son wanted off the Invega Sustenna (injection) as it killed his libido. And yes it hurt to receive it. I have thought about discussing with his treatment team having the oral Invega upped from 6 mg to 9 mg. I did bring this up to his nurse on Monday however and this is a big however... I am worried about the increase having an affect on his libido and therefor causing him to become non-compliant with his medications.
Like I said. What is important to me isn't important to him. Keeping his libido is more important to him then losing his mental health.
Two tweets that I saw recently that apply here where from Dr. Xavier Amador. One stating that between 50 - 75% of those diagnosed with schizophrenia don't take their medications is prescribed. Another stated that about half don't know that they have schizophrenia. From my own research I know that this is due to anosognosia or lack of insight. It's part of the condition itself that stops the person from recognizing that what they are experiencing is part of the disorder.
I forget exactly what hubby and I were talking about the other night but it was about something my son must have said. I joked with my hubby that my son was telling confabulations because he has anosognosia. My hubby didn't understand me either :) This means that he was saying things that appear to be untrue because he can't see that they aren't true. Schizophrenia causes him to believe in things and see things that most of us don't. How realistic they are have little to do with my perception of reality and more to do with his perception which is being controlled by a disease/disorder that changes how he sees things.
Sorry I'm getting off track... Another concern is weight gain and other side affects from these medications. For awhile my son had to wear a belt with his jeans as they were falling off. I think it was two or three days ago that he commented that he needed new jeans because the ones he had on where getting tight. His eating habits haven't changed. What if increasing his Invega causes him to gain weight and become non-compliant due to this? I know on 450 mg of Clozapine he gained weight then lost it on lower doses.
From a medical standpoint or even that of his treatment team my son is stable and therefore ok. From my point of view, he is not ok. I have seen how well he can do and honestly I don't think I'm ready to accept that what I'm currently seeing or what he is experiencing, is the new normal for him. I know that for some voices etc are a daily part of their lives. I don't know... Maybe after his last break this will be his new normal?
So the question is: What can I do? My son IS being med-compliant. I can't risk interfering with that to any big degree. If we change his medications than we may lose that compliancy. Or worse put him on the wrong medication and lose his current stability. I don't even know what medication could be considered at this point. I do believe he has been on most of them. I do believe that Invega is a good medication for him however it doesn't appear to be enough on its own or at the current dose.
For the moment I will continue to hope that what he is experiencing is a hiccup and not long term. Sunday night he stayed up until after 3 AM and got a little upset with me when I pointed out that how he was talking was delusional. Sometimes, when he is doing good and his mood is stable, I am able to point this out to him without him getting upset. Sunday was not one of those times :) When he started telling me what I was saying (that I wasn't saying) I knew it was pointless and he was too wrapped up in what he was experiencing to listen to me anyways. I didn't push it, left it alone and went to bed.
The reality is that I can't do much about it right now. He is in driver's seat when it comes to his medications. As long as what he is experiencing is not bothering him and it's not, then he will not want to stop it.
He does seem to be a bit better today. I think he was playing a game on his computer and he is now watching stuff. I don't think he has touched his Nvidia gaming system in awhile. I heard him on the phone with his Nana stating that technology is boring and depressing. He can't see that it's symptoms of schizophrenia causing him to not get enjoyment out of these things. Schizophrenia can be depressing. I didn't listen to too much of that conversation as it was fairly delusional and it can be hard for me to stay quiet ;)
He wants to move to... Mexico? and live without technology etc., that it would be great. I did point out that the people living in Mexico without technology and basic necessities may not agree with his point of view. Like I said, hard for me to not say anything. I went for a smoke before I could say anything else. He loves technology... When he is healthy.
His case worker at PACT should be dropping by tomorrow with more Invega. She also contacted disability in British Columbia and got a letter from them for disability here in Ontario. *fingers crossed* this gets us somewhere as I have emailed BC again and now left his worker at disability 3-4 messages with no call back.
My son just asked how he could go about getting some money for an online game. Can he do grunt work with my hubby... It's hard to keep a straight face sometimes. I pointed out that I have seen how much energy he has lately, that he is like 'the walking dead' so I doubt that he has the energy for grunt work ;) He will have money when he has money and he can spend his 'just $28'.
What can I say... Life can be tough sometimes ;)
Mom
BarbieBF
© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.
Currently my son is only taking one antipsychotic regularly and that is the Invega. He does take Olanzapine sometimes but only when I'm able to 'nicely' suggest it so that he can get a good nights sleep. As I did last night and he said that he took one.
In the past my son was the most stable and recovering while on Clozapine/Clozaril and Risperidone. How many of you add these medications to your computer's dictionary so that you know if you have spelled them right or not? ;) In June 2014 before the Adderall my son was maintaining stability and improving on 150 mg of Clozapine and 1 mg of Risperidone. Over a period of about nine months he had titrated down from 450 mg to 150 mg of Clozapine. Neurontin/Gabapentin and Trazodone was also in there however he never took it regularly. So he was doing really good on two antipsychotics that he took regularly. We added the Adderall for ADHD, lost stability and unfortunately have not gotten back to where he was in June 2014.
As most parents/caregivers know med-compliancy is a big part of the picture. What is important to me is not what is important to my son. If you have been reading my blog then you may be aware that I'm pretty sure my son wanted off the Invega Sustenna (injection) as it killed his libido. And yes it hurt to receive it. I have thought about discussing with his treatment team having the oral Invega upped from 6 mg to 9 mg. I did bring this up to his nurse on Monday however and this is a big however... I am worried about the increase having an affect on his libido and therefor causing him to become non-compliant with his medications.
Like I said. What is important to me isn't important to him. Keeping his libido is more important to him then losing his mental health.
Two tweets that I saw recently that apply here where from Dr. Xavier Amador. One stating that between 50 - 75% of those diagnosed with schizophrenia don't take their medications is prescribed. Another stated that about half don't know that they have schizophrenia. From my own research I know that this is due to anosognosia or lack of insight. It's part of the condition itself that stops the person from recognizing that what they are experiencing is part of the disorder.
I forget exactly what hubby and I were talking about the other night but it was about something my son must have said. I joked with my hubby that my son was telling confabulations because he has anosognosia. My hubby didn't understand me either :) This means that he was saying things that appear to be untrue because he can't see that they aren't true. Schizophrenia causes him to believe in things and see things that most of us don't. How realistic they are have little to do with my perception of reality and more to do with his perception which is being controlled by a disease/disorder that changes how he sees things.
Sorry I'm getting off track... Another concern is weight gain and other side affects from these medications. For awhile my son had to wear a belt with his jeans as they were falling off. I think it was two or three days ago that he commented that he needed new jeans because the ones he had on where getting tight. His eating habits haven't changed. What if increasing his Invega causes him to gain weight and become non-compliant due to this? I know on 450 mg of Clozapine he gained weight then lost it on lower doses.
From a medical standpoint or even that of his treatment team my son is stable and therefore ok. From my point of view, he is not ok. I have seen how well he can do and honestly I don't think I'm ready to accept that what I'm currently seeing or what he is experiencing, is the new normal for him. I know that for some voices etc are a daily part of their lives. I don't know... Maybe after his last break this will be his new normal?
So the question is: What can I do? My son IS being med-compliant. I can't risk interfering with that to any big degree. If we change his medications than we may lose that compliancy. Or worse put him on the wrong medication and lose his current stability. I don't even know what medication could be considered at this point. I do believe he has been on most of them. I do believe that Invega is a good medication for him however it doesn't appear to be enough on its own or at the current dose.
For the moment I will continue to hope that what he is experiencing is a hiccup and not long term. Sunday night he stayed up until after 3 AM and got a little upset with me when I pointed out that how he was talking was delusional. Sometimes, when he is doing good and his mood is stable, I am able to point this out to him without him getting upset. Sunday was not one of those times :) When he started telling me what I was saying (that I wasn't saying) I knew it was pointless and he was too wrapped up in what he was experiencing to listen to me anyways. I didn't push it, left it alone and went to bed.
The reality is that I can't do much about it right now. He is in driver's seat when it comes to his medications. As long as what he is experiencing is not bothering him and it's not, then he will not want to stop it.
He does seem to be a bit better today. I think he was playing a game on his computer and he is now watching stuff. I don't think he has touched his Nvidia gaming system in awhile. I heard him on the phone with his Nana stating that technology is boring and depressing. He can't see that it's symptoms of schizophrenia causing him to not get enjoyment out of these things. Schizophrenia can be depressing. I didn't listen to too much of that conversation as it was fairly delusional and it can be hard for me to stay quiet ;)
He wants to move to... Mexico? and live without technology etc., that it would be great. I did point out that the people living in Mexico without technology and basic necessities may not agree with his point of view. Like I said, hard for me to not say anything. I went for a smoke before I could say anything else. He loves technology... When he is healthy.
His case worker at PACT should be dropping by tomorrow with more Invega. She also contacted disability in British Columbia and got a letter from them for disability here in Ontario. *fingers crossed* this gets us somewhere as I have emailed BC again and now left his worker at disability 3-4 messages with no call back.
My son just asked how he could go about getting some money for an online game. Can he do grunt work with my hubby... It's hard to keep a straight face sometimes. I pointed out that I have seen how much energy he has lately, that he is like 'the walking dead' so I doubt that he has the energy for grunt work ;) He will have money when he has money and he can spend his 'just $28'.
What can I say... Life can be tough sometimes ;)
Mom
BarbieBF
© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.
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
Wednesday, October 29, 2014
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
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
Friday, September 12, 2014
I may have lost the battle but I haven't lost the war.
This is something that I'm having to remind myself. Thanx to an outpouring of support from parents who have been where I am and from people who are diagnosed and been where my son is and understand what I have been trying to accomplish... Their words of support and wisdom have helped me tremendously, perhaps more then I can truly express.
Since my son was diagnosed in 2011 and especially since he came to live with me in April of 2013, I have quit literally immersed myself into the world of schizophrenia. I have researched to the best of my ability the science behind what is happening in my son's brain. I have watched videos, so many videos. One by a Professor at Stanford University who sums up what I have researched in an easy to understand way. I have watched videos from The LEAP Institute about mental illness and anosognosia. 40-50% of people diagnosed with schizophrenia have anosognosia. Anosognosia looks like denial but is part of the disease itself. It does not allow the person to see that they are sick. I have researched medications and tried to understand dopamine antagonist and so many other terms that are almost beyond my comprehension BUT I understand enough to know what my son's brain needs. Not what schizophrenia and addiction wants. His thoughts, feelings, actions and reactions are being controlled by things that he cannot see or understand. That's where I come in! To advocate not for what my son thinks he wants BUT for what he needs.
Everyday I'm communicating with stable and recovering diagnosed who have been where my son is. Who's family members have advocated as I am trying to do to give them what is best for them. Now that they are stable and recovering they can see that boundaries and yes even a little tough love has helped to give them their lives back. Family members who out of love said enough is enough. We are not the problem and it's time! Time to take responsibility not only for their lives but for managing a disease that needs to be managed.
I have tried to talk to psychiatrist about the science of schizophrenia and guess what? They don't seem to have much knowledge. It's not their job to know about enlarged ventricles or pre-frontal cortex, less grey/white matter or miss-firing neurotransmitters. No amount of unconditional love can fix these. Overloading him on the wrong medications can't fix this. It's their job to prescribe medications based on what drug companies say they are supposed to do. They also prescribe based on what the patient tells them. Patients like my son who knows how to manipulate the system to give him what he wants. My son would still be over medicated and on the wrong medications if it wasn't for me researching and advocating for what is best for him. Getting him off of benzodiazepines, anything that ends in 'pam' was the first and best then I could have done for him. I know that the medications that he needs are the ones that help to regulate dopamine in his brain and he doesn't need to be over-medicated with them. I know that he can't handle ADHD stimulants, they trigger psychosis. Why because they are amphetamines. Might as well give him crystal meth/speed. That doesn't mean that he doesn't need help with ADHD symptoms because he does. I wonder who will advocate the right medications for this? I wonder who will advocate the right doses of the right medications? Instead of listening to a psychiatrist that in my opinion dropped the ball where my son is concerned a long time ago. A psychiatrist, that now that I have more experience and knowledge, didn't do my son any good. I don't blame him. He is human after-all. My son's current, soon to be no more, psychiatrist. Is a good psychiatrist, in my opinion. He worked with my son. He listened to me and my son. Most importantly he tried to give my son what he needed not what my son thought he needed. A very big distinction. He understood me when I talked about neurotransmitters...
I really wish the people involved could step back for just a moment and try to see the bigger picture. If they could only see what I see. I do see my son. All of him! Not just the parts that I want to see. I don't love him any less for doing so. In fact I think it makes my love all the more significant. Steps were being put into place that would give my son the tools that he needs to be the man that I know that he can be. Support was in place that he has been turning his back on because he can't see past his own mentality. It was a bump in the road that was leading to a success that would help him to gain the independence that he craves in an environment that understood his needs. He can't see his own limitations. He doesn't know that he needs the support that I was trying to give him.
It's hard to come to terms with what is happening. It's hard to let go and not do everything in my power to stop this. I know people's hearts are in the right place. If only they could see that so is mine. I have not done anything lightly. I have not made any decision that was not geared towards my son's stability and future. I see past his temper tantrums and manipulations. If only I was given the chance to see it through. Just a little bit of trust that as his MOTHER, armed not only with my love for him but also with the knowledge and experience of so many in my and his situation, that given the chance I was providing me son with what he needed. Now I'm letting him walk into a world with little understanding of schizophrenia.
A couple of people's comments hit home for me. It was to hand this over to my higher power. My higher power is my mother, Donna, who is in heaven and I know how much she loved my son. When things are tough for me, it's her that I pray to for the strength that I need because I know if anyone has God's ear it is her. I know that she is in my son's heart too because he still remembers her and talks of her sometimes. So mom, or Donna as my son calls you... I give you my son. Please take care of him until he is back with me again.
Thank you to all the nameless people who have supported me and my decisions. Who have lived with this disease and despite current circumstance have told me what an awesome mom I am. I needed to hear it.
Mom
BarbieBF
Since my son was diagnosed in 2011 and especially since he came to live with me in April of 2013, I have quit literally immersed myself into the world of schizophrenia. I have researched to the best of my ability the science behind what is happening in my son's brain. I have watched videos, so many videos. One by a Professor at Stanford University who sums up what I have researched in an easy to understand way. I have watched videos from The LEAP Institute about mental illness and anosognosia. 40-50% of people diagnosed with schizophrenia have anosognosia. Anosognosia looks like denial but is part of the disease itself. It does not allow the person to see that they are sick. I have researched medications and tried to understand dopamine antagonist and so many other terms that are almost beyond my comprehension BUT I understand enough to know what my son's brain needs. Not what schizophrenia and addiction wants. His thoughts, feelings, actions and reactions are being controlled by things that he cannot see or understand. That's where I come in! To advocate not for what my son thinks he wants BUT for what he needs.
Everyday I'm communicating with stable and recovering diagnosed who have been where my son is. Who's family members have advocated as I am trying to do to give them what is best for them. Now that they are stable and recovering they can see that boundaries and yes even a little tough love has helped to give them their lives back. Family members who out of love said enough is enough. We are not the problem and it's time! Time to take responsibility not only for their lives but for managing a disease that needs to be managed.
I have tried to talk to psychiatrist about the science of schizophrenia and guess what? They don't seem to have much knowledge. It's not their job to know about enlarged ventricles or pre-frontal cortex, less grey/white matter or miss-firing neurotransmitters. No amount of unconditional love can fix these. Overloading him on the wrong medications can't fix this. It's their job to prescribe medications based on what drug companies say they are supposed to do. They also prescribe based on what the patient tells them. Patients like my son who knows how to manipulate the system to give him what he wants. My son would still be over medicated and on the wrong medications if it wasn't for me researching and advocating for what is best for him. Getting him off of benzodiazepines, anything that ends in 'pam' was the first and best then I could have done for him. I know that the medications that he needs are the ones that help to regulate dopamine in his brain and he doesn't need to be over-medicated with them. I know that he can't handle ADHD stimulants, they trigger psychosis. Why because they are amphetamines. Might as well give him crystal meth/speed. That doesn't mean that he doesn't need help with ADHD symptoms because he does. I wonder who will advocate the right medications for this? I wonder who will advocate the right doses of the right medications? Instead of listening to a psychiatrist that in my opinion dropped the ball where my son is concerned a long time ago. A psychiatrist, that now that I have more experience and knowledge, didn't do my son any good. I don't blame him. He is human after-all. My son's current, soon to be no more, psychiatrist. Is a good psychiatrist, in my opinion. He worked with my son. He listened to me and my son. Most importantly he tried to give my son what he needed not what my son thought he needed. A very big distinction. He understood me when I talked about neurotransmitters...
I really wish the people involved could step back for just a moment and try to see the bigger picture. If they could only see what I see. I do see my son. All of him! Not just the parts that I want to see. I don't love him any less for doing so. In fact I think it makes my love all the more significant. Steps were being put into place that would give my son the tools that he needs to be the man that I know that he can be. Support was in place that he has been turning his back on because he can't see past his own mentality. It was a bump in the road that was leading to a success that would help him to gain the independence that he craves in an environment that understood his needs. He can't see his own limitations. He doesn't know that he needs the support that I was trying to give him.
It's hard to come to terms with what is happening. It's hard to let go and not do everything in my power to stop this. I know people's hearts are in the right place. If only they could see that so is mine. I have not done anything lightly. I have not made any decision that was not geared towards my son's stability and future. I see past his temper tantrums and manipulations. If only I was given the chance to see it through. Just a little bit of trust that as his MOTHER, armed not only with my love for him but also with the knowledge and experience of so many in my and his situation, that given the chance I was providing me son with what he needed. Now I'm letting him walk into a world with little understanding of schizophrenia.
A couple of people's comments hit home for me. It was to hand this over to my higher power. My higher power is my mother, Donna, who is in heaven and I know how much she loved my son. When things are tough for me, it's her that I pray to for the strength that I need because I know if anyone has God's ear it is her. I know that she is in my son's heart too because he still remembers her and talks of her sometimes. So mom, or Donna as my son calls you... I give you my son. Please take care of him until he is back with me again.
Thank you to all the nameless people who have supported me and my decisions. Who have lived with this disease and despite current circumstance have told me what an awesome mom I am. I needed to hear it.
Mom
BarbieBF
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