'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.
Friday, May 29, 2015
Wednesday, May 20, 2015
Schizophrenia Awareness Week #SAW2015
We are in the middle of Schizophrenia Awareness Week which is May 17-23 this year. Last year I was aware of it... This year my goal was to participate and help raise schizophrenia awareness. To help bring it out of the shadows and into the light so that we can all talk about it openly and as honestly as possible. I sometimes refer to schizophrenia as the "S" word because it still feels like it is taboo to talk about it. Within my home it is spoken fairly regularly and with a frankness that I consider to be very important. It along with ADHD, anxiety, menopause, addiction and medications are a part of our daily lives. Even more so than grocery shopping or paying the bills as these things are not daily occurrences or reminders of the struggle that we all find ourselves.
Despite my intentions I found myself backing off from schizophrenia this week. I have done very little on my Facebook page or even Twitter. I thought that I would be in there like a wet shirt... Instead I have done the opposite.
Some words that come to mind when I think about schizophrenia: different, conundrum, contradiction, nonsensical and limbo. Not mental illness, mental health, stigma or even awareness.
There is so much that I want to say yet so little. I commented to my daughter today that I haven't been doing much lately for Schizophrenia Awareness Week and she replied that it made sense since I live it everyday. Smart cookie! She's right.
I'm not going to discuss schizophrenia from my son's point of view because in all honesty schizophrenia means nothing to him, in my opinion. It's word that I use and his treatment team uses to tell the difference between things that he experiences that we don't. That's it, just a word. I know that there is always discussion about changing it's name which would probably benefit some. I can't say that it would change my life or even my son's life if they did.
I had a little chuckle with myself today as I considered the word contradiction and the fact that I have done the opposite this week to what I thought I was going to do. I myself have been the contradiction that I think schizophrenia is. Not surprising as I live schizophrenia as much as my son does. In some ways I think I live it more... That is not to downplay what my son experiences. We experience it differently.
His world gets so small that he can't see past schizophrenia and his own mind/thoughts. He gets lost in there. I don't... I see all to clearly what it is giving him and what it is taking away. What it gives and takes away from us all.
So here we are and I'm thinking what are we celebrating? What is one week or one day? If I compare it to say my birthday or better yet my clean birthday. The last time I used crack (Yes I used to use crack) was August 17, 2002. I have a friend that doesn't think that I should hold on to that date as my clean date as I used other drugs after the fact. Still I celebrate it. I don't really celebrate it on August 17th. I celebrate it every day that I wake up because every day is another day that I have gone without using it and I'm so thankful for that.
I'm finding it hard to celebrate Schizophrenia Awareness Week because everyday is Schizophrenia Awareness Week in my world. Like my birthday or my clean-day, it comes around once a year and it is nice to have a calendar highlight it... But it's just another day or week.
What is schizophrenia? Good question. For several years I researched and tried to understand the science behind it. I still do but not with same gusto that I used to. I still try to understand neurotransmitters and other terms as they relate to medications however where it came from or why my son has been blessed with it has really become a mood point. Don't get me wrong, I care very deeply about the science and I really hope that one day, soon, we have more answers. We need more answers.
I don't read a lot of the articles in-depth anymore. Sometimes I get pissed off reading them. I think aren't we past that yet? Blaming parenting styles or trying to draw connections between cat litter or fevers... Yes I get the need for it. Still it pisses me off. Why? One reason is this. I see it with a lot of parents and caregivers where they feel guilty that they may have done something that has caused their loved one to be ill with this disorder. Like any of us need another reason to feel guilty. I can assure you we don't. I choose not to read these articles too much anymore because I don't feel guilty that my son has schizophrenia or ADHD or ODD or even addiction. I have made my share of mistakes in the past and I will continue to make them. I'm ok with that. I'm doing the best that I can, now, today.
I'm not going to put much emphasis on positive symptoms as I think they are more easily understood. As I watch my son experience voices and hallucinations, I tend to take them in stride fairly easily. It's the negative symptoms that are so hard to treat, so hard to explain and so hard to watch. I can tell my son that what he is seeing, I can't see and that he is hallucinating and he can except that. He can even understand that that is the word schizophrenia. It's a lot harder to explain to him that when he doesn't feel like doing anything and has no interest in life that that is also the word schizophrenia. He can't see what it is taking away and I can't show it to him. I can point out to him that he is doing certain things like leaving the stove on or not seeing something that is two feet away from him like the ashtray ;) and he sees it for a second or a minute. Then he doesn't see it. So how can he understand that which he cannot see?
Because it's Schizophrenia Awareness Week I have been seeing much more on social media about the stats on violence... I find this one hard because I myself want to push these stats. I want the world to know that not everyone who experiences mental illness or schizophrenia is going to... well you get my point. At the same time I think: Why are we all pushing for things like Community Treatment Orders (Canada) or Assisted Outpatient Treatment Orders (USA) and even forced treatment? Well because the reality is that untreated, psychosis can be life threatening. I find it even harder now that I am aware of what can happen with my own son when he becomes psychotic. If there was no need for concern than we wouldn't need mental illness advocates or mental health courts, etc. Sorry I know that may not set will with some and I apologize for that.
Of all the words that I can currently think of I think limbo is perhaps the one that holds the most meaning for me right now. Schizophrenia has put not only my son but me in limbo. There doesn't seem to be any moving forward. Time has been going by. A week, a month, a year... We make progress and we take a couple of steps back. I believe in hope and I hold on to it. However the conundrum and contradiction that schizophrenia is, keeps us from having a solid footing on the future.
Right now I feel stuck. Not in a bad way and not in a good way either. Just stuck. I can only imagine how stuck my son feels or if he can even realize that we are stuck. His world is schizophrenia. My world is schizophrenia. I got a phone call yesterday about a job offer. I turned it down stating that my son has a mental illness and he isn't doing very well at the moment. I ask myself when that will change? What if it doesn't? I can't stay home forever. The thought of leaving him home alone if I don't have to makes it hard to breathe. I know that caregivers do it. Lots of them because they have no choice and I have always said that they have my respect as I don't know how they manage. They are stronger then they know, I'm sure.
Of all that I wanted to say... I find myself, right now, with nothing else to say ;) My son is waiting for me to file his nails. I asked him to wait until I was done writing this. That was a bit ago. He probably doesn't even realize how long it's been. Yes limbo...
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.
Despite my intentions I found myself backing off from schizophrenia this week. I have done very little on my Facebook page or even Twitter. I thought that I would be in there like a wet shirt... Instead I have done the opposite.
Some words that come to mind when I think about schizophrenia: different, conundrum, contradiction, nonsensical and limbo. Not mental illness, mental health, stigma or even awareness.
There is so much that I want to say yet so little. I commented to my daughter today that I haven't been doing much lately for Schizophrenia Awareness Week and she replied that it made sense since I live it everyday. Smart cookie! She's right.
I'm not going to discuss schizophrenia from my son's point of view because in all honesty schizophrenia means nothing to him, in my opinion. It's word that I use and his treatment team uses to tell the difference between things that he experiences that we don't. That's it, just a word. I know that there is always discussion about changing it's name which would probably benefit some. I can't say that it would change my life or even my son's life if they did.
I had a little chuckle with myself today as I considered the word contradiction and the fact that I have done the opposite this week to what I thought I was going to do. I myself have been the contradiction that I think schizophrenia is. Not surprising as I live schizophrenia as much as my son does. In some ways I think I live it more... That is not to downplay what my son experiences. We experience it differently.
His world gets so small that he can't see past schizophrenia and his own mind/thoughts. He gets lost in there. I don't... I see all to clearly what it is giving him and what it is taking away. What it gives and takes away from us all.
So here we are and I'm thinking what are we celebrating? What is one week or one day? If I compare it to say my birthday or better yet my clean birthday. The last time I used crack (Yes I used to use crack) was August 17, 2002. I have a friend that doesn't think that I should hold on to that date as my clean date as I used other drugs after the fact. Still I celebrate it. I don't really celebrate it on August 17th. I celebrate it every day that I wake up because every day is another day that I have gone without using it and I'm so thankful for that.
I'm finding it hard to celebrate Schizophrenia Awareness Week because everyday is Schizophrenia Awareness Week in my world. Like my birthday or my clean-day, it comes around once a year and it is nice to have a calendar highlight it... But it's just another day or week.
What is schizophrenia? Good question. For several years I researched and tried to understand the science behind it. I still do but not with same gusto that I used to. I still try to understand neurotransmitters and other terms as they relate to medications however where it came from or why my son has been blessed with it has really become a mood point. Don't get me wrong, I care very deeply about the science and I really hope that one day, soon, we have more answers. We need more answers.
I don't read a lot of the articles in-depth anymore. Sometimes I get pissed off reading them. I think aren't we past that yet? Blaming parenting styles or trying to draw connections between cat litter or fevers... Yes I get the need for it. Still it pisses me off. Why? One reason is this. I see it with a lot of parents and caregivers where they feel guilty that they may have done something that has caused their loved one to be ill with this disorder. Like any of us need another reason to feel guilty. I can assure you we don't. I choose not to read these articles too much anymore because I don't feel guilty that my son has schizophrenia or ADHD or ODD or even addiction. I have made my share of mistakes in the past and I will continue to make them. I'm ok with that. I'm doing the best that I can, now, today.
I'm not going to put much emphasis on positive symptoms as I think they are more easily understood. As I watch my son experience voices and hallucinations, I tend to take them in stride fairly easily. It's the negative symptoms that are so hard to treat, so hard to explain and so hard to watch. I can tell my son that what he is seeing, I can't see and that he is hallucinating and he can except that. He can even understand that that is the word schizophrenia. It's a lot harder to explain to him that when he doesn't feel like doing anything and has no interest in life that that is also the word schizophrenia. He can't see what it is taking away and I can't show it to him. I can point out to him that he is doing certain things like leaving the stove on or not seeing something that is two feet away from him like the ashtray ;) and he sees it for a second or a minute. Then he doesn't see it. So how can he understand that which he cannot see?
Because it's Schizophrenia Awareness Week I have been seeing much more on social media about the stats on violence... I find this one hard because I myself want to push these stats. I want the world to know that not everyone who experiences mental illness or schizophrenia is going to... well you get my point. At the same time I think: Why are we all pushing for things like Community Treatment Orders (Canada) or Assisted Outpatient Treatment Orders (USA) and even forced treatment? Well because the reality is that untreated, psychosis can be life threatening. I find it even harder now that I am aware of what can happen with my own son when he becomes psychotic. If there was no need for concern than we wouldn't need mental illness advocates or mental health courts, etc. Sorry I know that may not set will with some and I apologize for that.
Of all the words that I can currently think of I think limbo is perhaps the one that holds the most meaning for me right now. Schizophrenia has put not only my son but me in limbo. There doesn't seem to be any moving forward. Time has been going by. A week, a month, a year... We make progress and we take a couple of steps back. I believe in hope and I hold on to it. However the conundrum and contradiction that schizophrenia is, keeps us from having a solid footing on the future.
Right now I feel stuck. Not in a bad way and not in a good way either. Just stuck. I can only imagine how stuck my son feels or if he can even realize that we are stuck. His world is schizophrenia. My world is schizophrenia. I got a phone call yesterday about a job offer. I turned it down stating that my son has a mental illness and he isn't doing very well at the moment. I ask myself when that will change? What if it doesn't? I can't stay home forever. The thought of leaving him home alone if I don't have to makes it hard to breathe. I know that caregivers do it. Lots of them because they have no choice and I have always said that they have my respect as I don't know how they manage. They are stronger then they know, I'm sure.
Of all that I wanted to say... I find myself, right now, with nothing else to say ;) My son is waiting for me to file his nails. I asked him to wait until I was done writing this. That was a bit ago. He probably doesn't even realize how long it's been. Yes limbo...
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.
Tuesday, May 19, 2015
Sick is as sick does
Yes a lame attempt at a pun on words by Forest Gump's quote: Stupid is as stupid does...
I did get a call back on Thursday from my son's nurse that the psychiatrist was discontinuing the Latuda and reinstating the Olanzapine. ;)
Sadly that hasn't fixed everything as I had hoped. I think we may be heading for an hospitalization if he doesn't start taking care of himself physically. The hand gestures have pretty much stopped or is happening every now and then. Getting him off the Latuda was a good thing. The problem is that he started making himself sick. He has been making himself vomit... So he has barely kept any food down since last week. He is drinking lots of fluids which is good but it's not enough.
We have Pepto-Bismol and Gravol but getting him to take it is another story. It's taken me about 3 days of asking to finally get him to take a Gravol today. As far as I can tell he hasn't vomited today however he is again refusing to take anything so that he won't. I have been trying not to nag as I don't want to trigger his ODD and cause him to get defiant about taking his Invega and Olanzapine.
He hasn't been doing anything except making messes ;) I have been having to hose down areas of the backyard sometimes a couple of times a day. Between him spitting, leaving food items and garbage and even vomiting, it's been fun... Finally I put a bucket out for him which I'm having to dump and clean. Poor hubby. Watching my son make himself sick and listening to it, has been making my hubby want to be sick and he can't be around it. If he wasn't my son I would probably be the same.
It's gotten to the point where I'm moving the ashtray outside to where he is sitting because if I don't he is putting his cigarettes out on the table. When I point it out to him he says he doesn't remember doing it.
I commented today in a group I'm in about how to handle aggression. My helpful hint was to try to remember how we acted when they were small. Ignore the negative behaviors if you can. Yes I know... that doesn't really work with everything. I was thinking today that it sucks because at least with a child you can tell them that if they can't carry drinks without spilling etc then they can't carry drinks. Try telling that to a 21 year old that is spilling drinks everywhere or leaving opened freezes everywhere. I found one leaking all over my magazines. One today making a sticky mess in the backyard.
He had a bath today... He walked by me and phew... Several times a day he has been wanting me to message his back as well as at bedtime and cuddle with him. I told him today that I couldn't tonight if he didn't get clean.
You may not remember the brown corduroys that he got when he was in the shelter the last time. They came out last week. Finally one night I went into his room and put them in the laundry. Thankfully he gets undressed for bed. There was no way he was wearing them another day if I could help it. I'm debating getting rid of them and told him so. He said ok. They never did fit him right and so they have been falling off him.
So it's pretty much a waiting game right now on whether he will start eating and keeping it down.
*fingers crossed*
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.
I did get a call back on Thursday from my son's nurse that the psychiatrist was discontinuing the Latuda and reinstating the Olanzapine. ;)
Sadly that hasn't fixed everything as I had hoped. I think we may be heading for an hospitalization if he doesn't start taking care of himself physically. The hand gestures have pretty much stopped or is happening every now and then. Getting him off the Latuda was a good thing. The problem is that he started making himself sick. He has been making himself vomit... So he has barely kept any food down since last week. He is drinking lots of fluids which is good but it's not enough.
We have Pepto-Bismol and Gravol but getting him to take it is another story. It's taken me about 3 days of asking to finally get him to take a Gravol today. As far as I can tell he hasn't vomited today however he is again refusing to take anything so that he won't. I have been trying not to nag as I don't want to trigger his ODD and cause him to get defiant about taking his Invega and Olanzapine.
He hasn't been doing anything except making messes ;) I have been having to hose down areas of the backyard sometimes a couple of times a day. Between him spitting, leaving food items and garbage and even vomiting, it's been fun... Finally I put a bucket out for him which I'm having to dump and clean. Poor hubby. Watching my son make himself sick and listening to it, has been making my hubby want to be sick and he can't be around it. If he wasn't my son I would probably be the same.
It's gotten to the point where I'm moving the ashtray outside to where he is sitting because if I don't he is putting his cigarettes out on the table. When I point it out to him he says he doesn't remember doing it.
I commented today in a group I'm in about how to handle aggression. My helpful hint was to try to remember how we acted when they were small. Ignore the negative behaviors if you can. Yes I know... that doesn't really work with everything. I was thinking today that it sucks because at least with a child you can tell them that if they can't carry drinks without spilling etc then they can't carry drinks. Try telling that to a 21 year old that is spilling drinks everywhere or leaving opened freezes everywhere. I found one leaking all over my magazines. One today making a sticky mess in the backyard.
He had a bath today... He walked by me and phew... Several times a day he has been wanting me to message his back as well as at bedtime and cuddle with him. I told him today that I couldn't tonight if he didn't get clean.
You may not remember the brown corduroys that he got when he was in the shelter the last time. They came out last week. Finally one night I went into his room and put them in the laundry. Thankfully he gets undressed for bed. There was no way he was wearing them another day if I could help it. I'm debating getting rid of them and told him so. He said ok. They never did fit him right and so they have been falling off him.
So it's pretty much a waiting game right now on whether he will start eating and keeping it down.
*fingers crossed*
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.
Thursday, May 14, 2015
Bye bye Latuda
I was really hoping or had high hopes for the Latuda as I have heard of good results with it. However the small positives that I have seen are in no way outweighing the negatives. Honestly I'm not sure that the small positives I have seen are even as a result of the Latuda. The only positives I have been seeing is my son sometimes picking up after himself and making himself things to eat which most likely can be attributed to years of me trying to install this habit in him.
My hubby took my son out with him to clean the car on Saturday and they came back with these for Mother's Day:
My son came downstairs where I was doing laundry and gave them to me saying: I thought these would do you. Meaning he picked them out and thought I would like them. He was right!
As I mentioned on Friday he went to the liquor store. I don't think he drank everything on Friday although I can't say when he finished it. One day earlier in the week he threw out the empty bottles. This time he managed to hide them so that they weren't obvious.
After I cut the Latuda from 80 mg to 40 mg it was still several days before he actually took it and kept it down. He has been vomiting off and on. I wasn't sure if it was the Latuda causing this or not but I'm pretty sure that it is. Although part of it could also be how much he is smoking.
On Monday his new nurse visited. He seems nice... Sometimes my husband will comment that we need someone with more experience. I tend to agree ;) I don't know if it's that I'm so involved in researching medications or watching for signs, however I find that most of his treatment team just don't seem to get it. Maybe I think that I know more then I do. I know what I'm seeing and I know what my gut is telling me and I'm listening.
First I got the run down on cutting pills in half... Hmm... Ok way beyond that. I did my research first. I think I may have gotten chastised for cutting the dose as "How is the doctor going to know if the medication is working as prescribed?" The dose as prescribed was landing my son in an hallucinating state that could have had him suicidal if I hadn't intervened. So thanks for the input but my son is my priority not the doctor.
My son was looking at his nurse, not listening to him, and smiling to the point of almost laughing. His nurse was glad to see him happy... I found that a bit ludicrous, no pun intended. He's not 'happy', he's experiencing symptoms. My son continues to deny voices and hallucinations if asked outright if he is experiencing them. It's obvious that he is. Something I have difficulty pinpointing is the difference between intrusive thoughts and voices. Personally I think that are pretty close to each other with voices perhaps being one step above intrusive thoughts. Intrusive thoughts implies that they are intruding or not wanted however if one is welcoming them then one wouldn't consider them intrusive. Still they are not, for lack of a better description, our own thoughts. So I asked about the difference. His nurse explained to me the difference between thoughts and voices. I guess he missed the word 'intrusive'.
Monday and Tuesday he managed to keep down the 40 mg doses of Latuda. Yesterday (Wednesday) he vomited twice. Once all over the bathroom. That was fun to clean up ;). Since Friday he has started with hand movements, like he is flicking something. It has been progressively getting worse. Now he is doing it almost all the time about once every minute or less. If I hold the hand that is doing it, he starts with the other hand. He says that it isn't bothering him however it IS bothering me because I know it shouldn't be happening. The last 2-3 days he has become very needy in wanting me to cuddle with him. Wanting to sit almost on me on the sofa. Wanting me to file his nails and rub and scratch his back. I'm doing my best to accommodate this change and spend more time with him. Last night he wanted to sleep in my bed. Sadly this is something I'm not comfortable with however I did hold him for awhile in his bed.
Yesterday morning I talked to his case worker. She has been with us since, I think, July of last year. Possibly before that. One thing that I truly appreciate about her is that she listens to me. She doesn't cut me off mid-sentence when I'm telling her about what I'm seeing (his new nurse does as have others). In fact she has commented what a good thing it is that my son has me. She doesn't question the decisions that I make when it comes to medications. Like I said, she listens. So she knows that I make the decisions that I do with some knowledge of what I'm doing. At least that is how I'm reading it ;). I feel reasonably confident that what I tell her gets relayed to the psychiatrist with the appropriate emphasis on the concerning things that I see. With all the others... not so much. Even if she doesn't agree with what I'm doing she doesn't chastise me for it, instead brings it to the attention of his psychiatrist.
Yesterday his case worker and I agreed that my son is regressing. That what I'm seeing is not right for my son. I could tell that his hallucinating is getting worse again. He is lost. Goes the cupboard and doesn't seem to know what he is there for. I could tell by how he is walking that he is mentally lost. Some of his behavior has been almost child-like. After he vomited yesterday evening I told my hubby that Dr. Barb is saying no more Latuda. ;) I've tried to give it a chance however enough is enough.
This morning I called PACT and left a voice message as I know they are having their team meeting today with the psychiatrist and I wanted them to be aware of what I was doing. Last night I gave my son 10 mg of Olanzapine. He seems quite willing to go back on it. Yup, conundrum that he is! He was put on the Latuda because he decided to come off the Olanzapine. *sigh* I gave it to him around 8:30 last night. Put him to bed shortly after, spending time with him cuddling. Found out that there was a war going on his head... When I checked on him around 10, he was sleeping and snoring! As if that was a sound I ever thought I would be happy to hear and I was! I don't think he has had a sound sleep for over two weeks now.
I haven't been in the backyard for the past couple of days as it's been a bit chilly. I went out there this morning as when I looked out there I saw a pile of cigarette butts on the patio table. There is an ashtray on the other side of the table. I guess it was too far away and my son has been butting out his cigarettes on the table. There was butts everywhere. Some of them I could tell hadn't even been put out but went out on there own. It's a good thing there is no smoking in most of the house or there is a distinct possibility we could have been dealing with a house fire. I cleaned them up.
His nurse called me back after receiving my message this morning. I sat there silently fuming as he chastised me for making medication decisions without the psychiatrists ok. Finally I got blunt with him and told him that I'm going to do what I think is best for my son. I know what he has been prescribed and why. Keeping him on medications that are not working and making him worse, regardless of the doctor's orders is not going to happen. He kept cutting me off when I tried to explain what I have been seeing. Basically we ended the call with me saying that my son's psychiatrist should have enough understanding of me by now to know that I'm going to do what I think is best. If history is any indication he has yet to go against any of my decisions and I seriously doubt that he will this time either. The goal is to keep my son out of the hospital not put him there.
I think I need to do some research on medications. I think we need one that only affects dopamine and not serotonin as well, as most of them do. For me the only question right now is what dose of Olanzapine. Previously he was taking 20 mg a day which is supposed to be maximum dose and I would rather not go back to that if we don't have to.
Today he seems a bit better. The hand thing is still going strong. I'm guessing that will take time to go away however if I don't see an improvement in it within the next day or so I will be addressing it further.
We had our follow up appointment with ADAPT on Monday. It's at the mall which is like a 10 minute walk. My son will not be continuing with them. Voluntary and all that crap and he doesn't think that drinking 400 ml of 40% alcohol is a problem. So there you have it. I'm going to continue with them. I need the support and help learning to better cope with being the parent of an addict with mental illness. I have already booked an appointment for next month and registered with some sessions on the 25th and 26th. They also offer support and funding for quitting smoking so I'm going to get hubby and I registered so that hopefully they can provide us with free patches!
I did start the process of registering with a company for work from home opportunities. Been meaning to finish that for the past couple of days.
I wrote a piece for a book that I'm going to be participating in. It's currently pinned to the top of my Facebook page if any of my readers who are parents or caregivers are interested in telling their story and helping to support the non-profit that is putting it together. You can find my Facebook link on the side of this blog or by clicking above.
May 17-23 is Schizophrenia Awareness Week. I had grand intentions of creating a whole lot of literature and informational pieces to highlight on my Facebook page and the event that I created. I still have today and tomorrow...
PS: He has been continuing to take his Invega!
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.
My hubby took my son out with him to clean the car on Saturday and they came back with these for Mother's Day:
My son came downstairs where I was doing laundry and gave them to me saying: I thought these would do you. Meaning he picked them out and thought I would like them. He was right!
As I mentioned on Friday he went to the liquor store. I don't think he drank everything on Friday although I can't say when he finished it. One day earlier in the week he threw out the empty bottles. This time he managed to hide them so that they weren't obvious.
After I cut the Latuda from 80 mg to 40 mg it was still several days before he actually took it and kept it down. He has been vomiting off and on. I wasn't sure if it was the Latuda causing this or not but I'm pretty sure that it is. Although part of it could also be how much he is smoking.
On Monday his new nurse visited. He seems nice... Sometimes my husband will comment that we need someone with more experience. I tend to agree ;) I don't know if it's that I'm so involved in researching medications or watching for signs, however I find that most of his treatment team just don't seem to get it. Maybe I think that I know more then I do. I know what I'm seeing and I know what my gut is telling me and I'm listening.
First I got the run down on cutting pills in half... Hmm... Ok way beyond that. I did my research first. I think I may have gotten chastised for cutting the dose as "How is the doctor going to know if the medication is working as prescribed?" The dose as prescribed was landing my son in an hallucinating state that could have had him suicidal if I hadn't intervened. So thanks for the input but my son is my priority not the doctor.
My son was looking at his nurse, not listening to him, and smiling to the point of almost laughing. His nurse was glad to see him happy... I found that a bit ludicrous, no pun intended. He's not 'happy', he's experiencing symptoms. My son continues to deny voices and hallucinations if asked outright if he is experiencing them. It's obvious that he is. Something I have difficulty pinpointing is the difference between intrusive thoughts and voices. Personally I think that are pretty close to each other with voices perhaps being one step above intrusive thoughts. Intrusive thoughts implies that they are intruding or not wanted however if one is welcoming them then one wouldn't consider them intrusive. Still they are not, for lack of a better description, our own thoughts. So I asked about the difference. His nurse explained to me the difference between thoughts and voices. I guess he missed the word 'intrusive'.
Monday and Tuesday he managed to keep down the 40 mg doses of Latuda. Yesterday (Wednesday) he vomited twice. Once all over the bathroom. That was fun to clean up ;). Since Friday he has started with hand movements, like he is flicking something. It has been progressively getting worse. Now he is doing it almost all the time about once every minute or less. If I hold the hand that is doing it, he starts with the other hand. He says that it isn't bothering him however it IS bothering me because I know it shouldn't be happening. The last 2-3 days he has become very needy in wanting me to cuddle with him. Wanting to sit almost on me on the sofa. Wanting me to file his nails and rub and scratch his back. I'm doing my best to accommodate this change and spend more time with him. Last night he wanted to sleep in my bed. Sadly this is something I'm not comfortable with however I did hold him for awhile in his bed.
Yesterday morning I talked to his case worker. She has been with us since, I think, July of last year. Possibly before that. One thing that I truly appreciate about her is that she listens to me. She doesn't cut me off mid-sentence when I'm telling her about what I'm seeing (his new nurse does as have others). In fact she has commented what a good thing it is that my son has me. She doesn't question the decisions that I make when it comes to medications. Like I said, she listens. So she knows that I make the decisions that I do with some knowledge of what I'm doing. At least that is how I'm reading it ;). I feel reasonably confident that what I tell her gets relayed to the psychiatrist with the appropriate emphasis on the concerning things that I see. With all the others... not so much. Even if she doesn't agree with what I'm doing she doesn't chastise me for it, instead brings it to the attention of his psychiatrist.
Yesterday his case worker and I agreed that my son is regressing. That what I'm seeing is not right for my son. I could tell that his hallucinating is getting worse again. He is lost. Goes the cupboard and doesn't seem to know what he is there for. I could tell by how he is walking that he is mentally lost. Some of his behavior has been almost child-like. After he vomited yesterday evening I told my hubby that Dr. Barb is saying no more Latuda. ;) I've tried to give it a chance however enough is enough.
This morning I called PACT and left a voice message as I know they are having their team meeting today with the psychiatrist and I wanted them to be aware of what I was doing. Last night I gave my son 10 mg of Olanzapine. He seems quite willing to go back on it. Yup, conundrum that he is! He was put on the Latuda because he decided to come off the Olanzapine. *sigh* I gave it to him around 8:30 last night. Put him to bed shortly after, spending time with him cuddling. Found out that there was a war going on his head... When I checked on him around 10, he was sleeping and snoring! As if that was a sound I ever thought I would be happy to hear and I was! I don't think he has had a sound sleep for over two weeks now.
I haven't been in the backyard for the past couple of days as it's been a bit chilly. I went out there this morning as when I looked out there I saw a pile of cigarette butts on the patio table. There is an ashtray on the other side of the table. I guess it was too far away and my son has been butting out his cigarettes on the table. There was butts everywhere. Some of them I could tell hadn't even been put out but went out on there own. It's a good thing there is no smoking in most of the house or there is a distinct possibility we could have been dealing with a house fire. I cleaned them up.
His nurse called me back after receiving my message this morning. I sat there silently fuming as he chastised me for making medication decisions without the psychiatrists ok. Finally I got blunt with him and told him that I'm going to do what I think is best for my son. I know what he has been prescribed and why. Keeping him on medications that are not working and making him worse, regardless of the doctor's orders is not going to happen. He kept cutting me off when I tried to explain what I have been seeing. Basically we ended the call with me saying that my son's psychiatrist should have enough understanding of me by now to know that I'm going to do what I think is best. If history is any indication he has yet to go against any of my decisions and I seriously doubt that he will this time either. The goal is to keep my son out of the hospital not put him there.
I think I need to do some research on medications. I think we need one that only affects dopamine and not serotonin as well, as most of them do. For me the only question right now is what dose of Olanzapine. Previously he was taking 20 mg a day which is supposed to be maximum dose and I would rather not go back to that if we don't have to.
Today he seems a bit better. The hand thing is still going strong. I'm guessing that will take time to go away however if I don't see an improvement in it within the next day or so I will be addressing it further.
We had our follow up appointment with ADAPT on Monday. It's at the mall which is like a 10 minute walk. My son will not be continuing with them. Voluntary and all that crap and he doesn't think that drinking 400 ml of 40% alcohol is a problem. So there you have it. I'm going to continue with them. I need the support and help learning to better cope with being the parent of an addict with mental illness. I have already booked an appointment for next month and registered with some sessions on the 25th and 26th. They also offer support and funding for quitting smoking so I'm going to get hubby and I registered so that hopefully they can provide us with free patches!
I did start the process of registering with a company for work from home opportunities. Been meaning to finish that for the past couple of days.
I wrote a piece for a book that I'm going to be participating in. It's currently pinned to the top of my Facebook page if any of my readers who are parents or caregivers are interested in telling their story and helping to support the non-profit that is putting it together. You can find my Facebook link on the side of this blog or by clicking above.
May 17-23 is Schizophrenia Awareness Week. I had grand intentions of creating a whole lot of literature and informational pieces to highlight on my Facebook page and the event that I created. I still have today and tomorrow...
PS: He has been continuing to take his Invega!
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.
Friday, May 8, 2015
Latuda Roller Coaster
It's been a bit of an interesting week. When my son's case worker stopped by on Monday to drop off his medications for the week and check in, I told her that what I have been seeing is different. I didn't know how to explain different... Just that I wasn't sure that I liked what I was seeing. The Latuda seemed to be helping however in some ways it wasn't.
He went from Friday to Tuesday barely eating. Even though he was going to bed he wasn't sleeping good and he wasn't napping during the day either.
Monday evening he randomly hugged me... Good sign right?
Tuesday he asked for the internet back. I asked him if he remembered the things that he had said to me and he replied that he remembered all of it. I asked if he still felt justified in saying what he did. Yes err no... He was upset. Ok I can understand that. I let him know that threatening me was illegal and reminded him that he had threatened to hurt me. He told me that he would never hurt me. Didn't I know that? That's the crutch isn't it? My son, Michael, would never hurt me. Psychosis and alcohol on the other hand is a different story. I gave him back the internet, not that he has used it, and told him that we really need to work on his anger issues.
We talked about his tobacco use. He told me that I had agreed that if he bought one tube of tobacco that I would buy him two. Ok we need to get to the bottom of where these misconceptions are coming from. When did I say that? I didn't but another time I told him that if he bought one carton of cigarettes then I would buy him two cartons. Yes I did do this once because he had spent his money on furniture for his room. Grrr... It does get irritating that whenever I do something nice that it gets turned into something like this. So I made it clear that I would get him some tobacco like I said I would but not two tubes and next month I don't plan on helping with this again.
I talked to his worker at disability and let her know that they are still deducting $40 from his payments due to the supposed over payment of him collecting disability from two provinces at once. This should be fixed for next payment so that they are only deducting $10. The drug cards finally got faxed over to the pharmacy that is supplying his medications and starting next month they should be mailing them to me.
I also tried to address the alcohol... It's not helping him. It's depressing him and triggering anger. He is not a happy drunk when he drinks now. It's seriously impairing him and his functionality. Off he went to the liquor store anyways...
I know he thinks I'm being hard on him however I can't continue to support his drinking and we are not spending more money on his tobacco then we do our own. We shouldn't have to. Hubby has been talking about quitting again. Maybe we should. It's harder to tell my son no when we are smoking.
Wednesday morning he started drinking at 9 AM. I didn't say anything... thought I guess I should be happy that he didn't drink it all the day before. Sad isn't it when that is what I'm left with... Back to the different that I noted at the beginning of this post. I haven't had much experience in seeing my son actively hallucinate. Things don't usually get that far here. I asked my son if he was hallucinating and he said no. Now my bad here because really I'm asking someone who is seeing what they see as being just as real as everything I see and expecting him to know the different ;) I notice by Wednesday afternoon that he was acting odd even for him. It was like he was pushing stuff away from him and it almost looked like bouncing a ball or something... Things I couldn't see.
Yesterday was a bit of a roller coaster for him. Early afternoon he was making noises that I couldn't at first tell if it was crying or laughing. However the look on his face was one of pain. At the same time he was having issues with his privates. I'm guessing tactile hallucinations. Several times I asked him if he was ok and if he was crying. He said no however at one point he told me to leave him alone and stop looking at him while he was crying. He didn't want me touching him and he couldn't tell me why he was crying just that he was. I asked if it was ok if I called PACT and talked to his nurse about the Latuda that his dose is too high. He said yes.
I called and of course his nurse wasn't in, his case worker wasn't available and the other nurses were all in a meeting but I could leave a message. I did. They haven't called me back yet.
The off and on crying and issues with his privates continued for about an hour. I was on the verge of putting us in a cab and going to emergency. I asked him if he was having thoughts of hurting himself and he said that he wasn't. I asked that if he did that he let me know right away. Finally it stopped and he said that he was feeling better. I was coloring and he joined me. Then it started again however not as bad as before and was shorter. Then he was very happy. I think perhaps a bit manic based on the continual smile. I could see that he was hallucinating again. That had me concerned for a bit as he was doing air punches or interacting with his hallucinations, I'm not sure, but too close to me so I asked him not to do that around me. Thankfully this didn't last long.
Since PACT didn't call me back, I looked it up and his Latuda pills can be cut in half. Latuda is supposed to be taken with food. Not snacks but an actual meal. Given that he hasn't been eating that has been a tough one and he wanted to take it at night with his Invega. I think between the too high dose and not taking it with food that it has been hitting him too hard. Latuda can cause mania as far as I know. I know it's not supposed to be sedating which means it can be activating. Since he has been taking it before bed I think it's been interfering with his sleep as Wednesday night he did take two Melatonin and still didn't sleep good.
So I have cut his dose from 80 mg to 40 mg and gave it to him with dinner last night. The up side to the mini manic phase seems to be that he ate dinner fairly good. He didn't eat all of it but he did eat his chicken and salad so an ok base for the Latuda.
He still hasn't showered however he has been in the bath the last two nights. While it may sound like a good thing... When he is experiencing symptoms or tactile hallucinations he seems to like the sensation of being in the tube so it's not really a good sign when he wants to have a bath every day. Last night I went into the bathroom and took out his dirty socks, underwear and shirt and put out clean ones so that he had no choice but to but on clean ones.
Around 9:30 last night I went into his room and had him take his Invega and two Melatonin. He slept although not as deep as I would like. He got up today at 8:30 AM. Not bad actually as he has been getting up with me and hubby around 5 for the past week. I had debating not giving him any Latuda last night however if I did that I ran the risk of him not taking it again as he has done this with several medications in the past. Just because 80 mg is too much I don't want to not give this medication a chance. He needs the antipsychotic right now.
I called PACT and left another message letting them know I cut the dose. Hopefully today I will see a reduction in what I was seeing yesterday. Probably not though as he appeared to be hallucinating a little while ago and is now off to the liquor store again...
Mom
BarbieBF
© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2015. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blogs author and/or owner is strictly prohibited. Links to blog posts and/or pages as a whole (in there entirety) may be used provided that full and clear credit is given to BarbieBF and Schizophrenia - Mom's Journey with appropriate and specific direction to the original content.
He went from Friday to Tuesday barely eating. Even though he was going to bed he wasn't sleeping good and he wasn't napping during the day either.
Monday evening he randomly hugged me... Good sign right?
Tuesday he asked for the internet back. I asked him if he remembered the things that he had said to me and he replied that he remembered all of it. I asked if he still felt justified in saying what he did. Yes err no... He was upset. Ok I can understand that. I let him know that threatening me was illegal and reminded him that he had threatened to hurt me. He told me that he would never hurt me. Didn't I know that? That's the crutch isn't it? My son, Michael, would never hurt me. Psychosis and alcohol on the other hand is a different story. I gave him back the internet, not that he has used it, and told him that we really need to work on his anger issues.
We talked about his tobacco use. He told me that I had agreed that if he bought one tube of tobacco that I would buy him two. Ok we need to get to the bottom of where these misconceptions are coming from. When did I say that? I didn't but another time I told him that if he bought one carton of cigarettes then I would buy him two cartons. Yes I did do this once because he had spent his money on furniture for his room. Grrr... It does get irritating that whenever I do something nice that it gets turned into something like this. So I made it clear that I would get him some tobacco like I said I would but not two tubes and next month I don't plan on helping with this again.
I talked to his worker at disability and let her know that they are still deducting $40 from his payments due to the supposed over payment of him collecting disability from two provinces at once. This should be fixed for next payment so that they are only deducting $10. The drug cards finally got faxed over to the pharmacy that is supplying his medications and starting next month they should be mailing them to me.
I also tried to address the alcohol... It's not helping him. It's depressing him and triggering anger. He is not a happy drunk when he drinks now. It's seriously impairing him and his functionality. Off he went to the liquor store anyways...
I know he thinks I'm being hard on him however I can't continue to support his drinking and we are not spending more money on his tobacco then we do our own. We shouldn't have to. Hubby has been talking about quitting again. Maybe we should. It's harder to tell my son no when we are smoking.
Wednesday morning he started drinking at 9 AM. I didn't say anything... thought I guess I should be happy that he didn't drink it all the day before. Sad isn't it when that is what I'm left with... Back to the different that I noted at the beginning of this post. I haven't had much experience in seeing my son actively hallucinate. Things don't usually get that far here. I asked my son if he was hallucinating and he said no. Now my bad here because really I'm asking someone who is seeing what they see as being just as real as everything I see and expecting him to know the different ;) I notice by Wednesday afternoon that he was acting odd even for him. It was like he was pushing stuff away from him and it almost looked like bouncing a ball or something... Things I couldn't see.
Yesterday was a bit of a roller coaster for him. Early afternoon he was making noises that I couldn't at first tell if it was crying or laughing. However the look on his face was one of pain. At the same time he was having issues with his privates. I'm guessing tactile hallucinations. Several times I asked him if he was ok and if he was crying. He said no however at one point he told me to leave him alone and stop looking at him while he was crying. He didn't want me touching him and he couldn't tell me why he was crying just that he was. I asked if it was ok if I called PACT and talked to his nurse about the Latuda that his dose is too high. He said yes.
I called and of course his nurse wasn't in, his case worker wasn't available and the other nurses were all in a meeting but I could leave a message. I did. They haven't called me back yet.
The off and on crying and issues with his privates continued for about an hour. I was on the verge of putting us in a cab and going to emergency. I asked him if he was having thoughts of hurting himself and he said that he wasn't. I asked that if he did that he let me know right away. Finally it stopped and he said that he was feeling better. I was coloring and he joined me. Then it started again however not as bad as before and was shorter. Then he was very happy. I think perhaps a bit manic based on the continual smile. I could see that he was hallucinating again. That had me concerned for a bit as he was doing air punches or interacting with his hallucinations, I'm not sure, but too close to me so I asked him not to do that around me. Thankfully this didn't last long.
Since PACT didn't call me back, I looked it up and his Latuda pills can be cut in half. Latuda is supposed to be taken with food. Not snacks but an actual meal. Given that he hasn't been eating that has been a tough one and he wanted to take it at night with his Invega. I think between the too high dose and not taking it with food that it has been hitting him too hard. Latuda can cause mania as far as I know. I know it's not supposed to be sedating which means it can be activating. Since he has been taking it before bed I think it's been interfering with his sleep as Wednesday night he did take two Melatonin and still didn't sleep good.
So I have cut his dose from 80 mg to 40 mg and gave it to him with dinner last night. The up side to the mini manic phase seems to be that he ate dinner fairly good. He didn't eat all of it but he did eat his chicken and salad so an ok base for the Latuda.
He still hasn't showered however he has been in the bath the last two nights. While it may sound like a good thing... When he is experiencing symptoms or tactile hallucinations he seems to like the sensation of being in the tube so it's not really a good sign when he wants to have a bath every day. Last night I went into the bathroom and took out his dirty socks, underwear and shirt and put out clean ones so that he had no choice but to but on clean ones.
Around 9:30 last night I went into his room and had him take his Invega and two Melatonin. He slept although not as deep as I would like. He got up today at 8:30 AM. Not bad actually as he has been getting up with me and hubby around 5 for the past week. I had debating not giving him any Latuda last night however if I did that I ran the risk of him not taking it again as he has done this with several medications in the past. Just because 80 mg is too much I don't want to not give this medication a chance. He needs the antipsychotic right now.
I called PACT and left another message letting them know I cut the dose. Hopefully today I will see a reduction in what I was seeing yesterday. Probably not though as he appeared to be hallucinating a little while ago and is now off to the liquor store again...
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, May 4, 2015
Aspirin for arthritis and fruit-flies.
I don't recall what day I found a bunch of these aspirin in my son's coat. I had no idea what they were until I showed them to my hubby and he grabbed his bottle of aspirin from the top of the fridge. They are over the counter but they are long acting that our doctor recommended he take daily to ward off the headaches he gets. Feeling relief that that was all they were I didn't think anything else of it. Friday I was cleaning the floor in my son's room and while moving around his make-shift coffee table I heard what I immediately figured was a bottle of vodka that he managed to get in the house and hide under the table. It was a bowl with crushed up white stuff and a rolled up piece of paper for snorting it.
My son received his disability money on Thursday. That day he got his vodka... I didn't say anything except to remind him that it doesn't come onto our property. He sat outside our gate and drank it. When hubby got off work we went to our chiropractor, to the bank and to a store for my son to buy tobacco since he has decided to roll cigarettes. He wasn't happy that it cost him $40 for his tub of tobacco. That night I gave him an Olanzapine with his Invega and he took it.
Friday had the makings of a bad day. He was outside drinking another bottle of vodka and hmmm, I'm really going to have to write down the name of the other bottle he gets, when I found the bowl in his room. I went out to ask him what it was. He told me aspirin.
I was somewhat impressed with myself as I didn't get mad or even upset. I was kind of amused as honestly what could you possible get out of snorting aspirin? I'm not even sure when the conversation took the negative turn that it did but it did. He told me that he was better then me. I replied that he wasn't better then me. Next thing I'm being called a bitch and a fat whore numerous times along with other swear words. I did my best to keep it light. Told him that no matter what he called me I was still going to love him and seriously look at me... Do I look like a fat whore? Apparently yes...
I was just thinking to meet this hate with love... I told him again that I loved him. He said prove it. I replied that I was still here and I knelt down. I was 3 feet away from him and I didn't get any closer. At this point I got told to get out of his face or he was going to smack me and knock me out. He said he wasn't threatening me... I again told him I loved him and walked away. Left him sitting out there, in the dirt, surrounded by 3 bottles (one from the day before) and cigarette butts. We were also back to the "I pay the rent around here and this is 35% my property."
I came inside and called PACT and talked to his new nurse. I think I was looking for some sort of assurance, not that I got any... If I felt unsafe... A year ago I didn't know what he was capable of. Although he is not in active psychosis right now. He is experiencing symptoms yes however he is aware of what he is saying. He is relatively stable. I was seeing an angry drunk... Really nothing new there as I have been seeing that all my life and sadly he does have it in his genes.
Perhaps not the best choice however one boundary I refuse to budge on is the consequences to swearing at me. I disconnected the internet. Went back to the cleaning I was doing. He comes downstairs and asks when he is going to get the internet back. Some how he has morphed what was said into me telling him that he wasn't better. Period. So therefor he was justified in talking to me the way that he did. I told him I wasn't going to discuss it right now. Another flood of name calling and swearing that ended with "Cook my dinner bitch."
I ignored him and went about my cleaning. I think he passed out for a bit...
Since then his defiance has been in high gear. About pretty much anything and everything. Friday his case worker dropped off his Latuda. He has been prescribed 80 mg. Apparently he was prescribed 60 mg however disability doesn't cover this dosage. Ridiculous isn't it? I think disability only recently started covering this medication. So his psychiatrist changed it to 80 as I think that may be the dose he was looking at eventually anyways. Average dosages seems to be between 40 and 160.
His nurse called on Saturday to check in and see if he took his Latuda. As far as I can tell he has been taking it. Since his defiance is in high gear he won't take his medications if he's alert and I'm watching him.
Hubby and I went grocery shopping without him on Saturday. He wasn't up when we left and honestly I'm not rewarding his behavior or attitude. We did bring him back a coffee since we had gotten ourselves one. He asked why I didn't get him up to go? Do you remember what you said to me yesterday? Yes... Well I'm not rewarding that. You got me a coffee. Yes, just because I'm not rewarding you doesn't mean I'm going to be rude either. Do you want the coffee? Give it to me... I started to walk in the house with it and told him he isn't going to get it by talking to me like that. He asked for it nicely so I gave it to him.
I had picked up some coloring books, crayons, pencil crayons and markers while shopping. A Thor book for him and two other ones for me. For a bit he colored in the Thor one. One of the ones I got is Care Bears. I used to love them when I was a kid :)
Remember the camping... He brings it up wanting to go... I told him not this weekend and we don't have money for it right now anyways. He says that I promised this month. No I didn't. I said I would look into it for this month. Well isn't saying it the same as promising? My son knows the difference in that very well as he usually won't promise anything. I just replied that no it wasn't the same and asked if he wanted to make everything into an argument? I think that he does...
I'm not sure why not however he hasn't been to the liquor store since Friday. He does still have enough money left for probably two trips of his usual. The next thing was asking me to take him to the grocery store for treats. I agreed to take him however he was paying for it. Well it's my job to feed him three meals a day and I'm not doing it so he is going to call his Nana and tell her I'm not buying him groceries... Our kitchen is quit full of food since we spend over $1200 a month on groceries. He made his phone call... We took him to the grocery store. He didn't get anything. I offered to take him to the dollar store as he can load up on treats there for cheap. He said no that he had better things to spend his money on like alcohol.
Again I will have to say how impressed I have been with hubby. I know he has a hard time dealing with seeing my son act like this however he is slowly seeing most of it for what it is. My son is having temper tantrums like a child except he is doing it with a 21 year old vocabulary and in a man's body which can be concerning when alcohol is added to the mix. Even my hubby has started getting stuff for my son when we are grocery shopping and he is not with us. Michael likes these...
In between all this my son is giving me a hard time about doing anything that I ask him to do. I have jars for the beef jerky that I make. Friday night I had one of them out and my son brought out the other two along with other snacks. Asking him to put this stuff away the next day... Yah that was fun. Well one of them was mine so therefore he shouldn't have to pick it up. I put mine away. He refused to put the other two away. Finally a day later I did...
Yesterday it was grapes that he took out. I asked if he was done with them could he put them away. He wasn't done with them yet... He did finally put them away and of course as is usual for my son he has to do these things when I'm in the kitchen in the middle of doing something. No excuse me's or anything... He pays the rent ;) You can see it in the way that he is walking around here and how he is looking at us. Pure defiance. We have been trying our best to ignore it and not give it any attention.
We have fruit-flies. I have been noticing them for a couple of days now. I have been trying to disinfect the kitchen and figure out where they are coming from. Yesterday I went around emptying all the garbages just in case. At least 30 of them came out of my son's garbage in his room when I grabbed it. Great! It's all the sweats and treats that he doesn't have ;) He has a big bag full of assorted treats in his room and his garbage was full of ice cream wrappers etc. I sprayed stuff down with Febreze but I'm going to have to get some Lysol I guess...
The last time he had a bath was on April 23. Before that it was awhile as I had asked him to make sure he cleans the tub afterwards because he does private stuff while in the tub and I didn't want to be bathing in it myself. Yesterday I tried to motivate him into a shower. Hubby and I had to go get cigarettes and I said he could come with us for the car ride however I wanted him to have a shower first as it's been awhile. He didn't have the energy and would have one later. This never happens when he says this. I said we would wait for him to get up the energy to have one so that he could go with us. I had an errand to run so we went to do that to give my son time and we brought him back a coffee. He decided not to come...
Hubby and I had a nice drive. We need that one on one time to just be a couple.
We came back and I spent time in the backyard with my son. Not saying much because right now it doesn't seem to matter what I say to him he will respond in the negative. So I colored. Sometimes I have to remind myself that I'm a mom and I have experience with kids having temper tantrums and using negative tactics to get attention. My son has never done this... I could feel him watching/looking at me. He put both his legs on the table and started rocking them. The whole table was rocking along with everything on it. He is just looking at me... I ignored him and kept coloring. Eventually he stopped ;)
He stopped taking Melatonin, again, when he started the Latuda. So even though we have the new antipsychotic on board he is still not sleeping good because he isn't taking anything to help him sleep. Latuda is not sedating. Last night when I checked on him around 1:30, he had taken the Melatonin and not his Invega or Latuda. Just breathe right... I woke him up to take them. Of course asking very nicely so that I don't trigger his ODD defiance any further. This morning he was up before 5...
What woke me up was my son asking my hubby for a pack of cigarettes. Now I haven't rolled cigarettes since my kids were small... So I Googled it ;) On Thursday he bought 100 grams of tobacco which should roll around a carton or 200 cigarettes. It's been 3 days and he has gone through 3/4 of it. He is now out of tubes. He said he had around 180 tubes when he got the tobacco so it seems to fit. He also has partial packs of two other kinds of cigarettes and yesterday was smoking my hubby's. I got attitude for asking him not to just take my hubby's cigarettes as he was without asking.
I know this post is getting long winded. So many thoughts in my head... I put hubby's cigarettes away because I know my son will just take them when he wants and we can't afford this. My son probably has more money in his bank account right now then hubby and I do put together. I'm trying really hard not to go further into dept. Because of my son snorting the aspirin I have now put away anything that can be crushed up and snorted... It makes me think of all the times in the past that I have fallen for the mindset of how hard-done-by my son was however I also know how hard it can be to keep things for other people when my son thinks that he is entitled to anything that he wants.
Wouldn't it be nice if someone I trusted could walk in and tell me what to do? Notice I added the trusted part. ;) I'm sure I could get lots of advise however depending on who gave it to me I wouldn't trust it... We need more money coming in to cover our expenses and our dept. The thought of leaving my home unattended and open to whatever my son sees fit to do with or in it while I'm at work... Seriously nothing would be safe from addiction or schizophrenia.
Oh well...
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.
My son received his disability money on Thursday. That day he got his vodka... I didn't say anything except to remind him that it doesn't come onto our property. He sat outside our gate and drank it. When hubby got off work we went to our chiropractor, to the bank and to a store for my son to buy tobacco since he has decided to roll cigarettes. He wasn't happy that it cost him $40 for his tub of tobacco. That night I gave him an Olanzapine with his Invega and he took it.
Friday had the makings of a bad day. He was outside drinking another bottle of vodka and hmmm, I'm really going to have to write down the name of the other bottle he gets, when I found the bowl in his room. I went out to ask him what it was. He told me aspirin.
I was somewhat impressed with myself as I didn't get mad or even upset. I was kind of amused as honestly what could you possible get out of snorting aspirin? I'm not even sure when the conversation took the negative turn that it did but it did. He told me that he was better then me. I replied that he wasn't better then me. Next thing I'm being called a bitch and a fat whore numerous times along with other swear words. I did my best to keep it light. Told him that no matter what he called me I was still going to love him and seriously look at me... Do I look like a fat whore? Apparently yes...
I was just thinking to meet this hate with love... I told him again that I loved him. He said prove it. I replied that I was still here and I knelt down. I was 3 feet away from him and I didn't get any closer. At this point I got told to get out of his face or he was going to smack me and knock me out. He said he wasn't threatening me... I again told him I loved him and walked away. Left him sitting out there, in the dirt, surrounded by 3 bottles (one from the day before) and cigarette butts. We were also back to the "I pay the rent around here and this is 35% my property."
I came inside and called PACT and talked to his new nurse. I think I was looking for some sort of assurance, not that I got any... If I felt unsafe... A year ago I didn't know what he was capable of. Although he is not in active psychosis right now. He is experiencing symptoms yes however he is aware of what he is saying. He is relatively stable. I was seeing an angry drunk... Really nothing new there as I have been seeing that all my life and sadly he does have it in his genes.
Perhaps not the best choice however one boundary I refuse to budge on is the consequences to swearing at me. I disconnected the internet. Went back to the cleaning I was doing. He comes downstairs and asks when he is going to get the internet back. Some how he has morphed what was said into me telling him that he wasn't better. Period. So therefor he was justified in talking to me the way that he did. I told him I wasn't going to discuss it right now. Another flood of name calling and swearing that ended with "Cook my dinner bitch."
I ignored him and went about my cleaning. I think he passed out for a bit...
Since then his defiance has been in high gear. About pretty much anything and everything. Friday his case worker dropped off his Latuda. He has been prescribed 80 mg. Apparently he was prescribed 60 mg however disability doesn't cover this dosage. Ridiculous isn't it? I think disability only recently started covering this medication. So his psychiatrist changed it to 80 as I think that may be the dose he was looking at eventually anyways. Average dosages seems to be between 40 and 160.
His nurse called on Saturday to check in and see if he took his Latuda. As far as I can tell he has been taking it. Since his defiance is in high gear he won't take his medications if he's alert and I'm watching him.
Hubby and I went grocery shopping without him on Saturday. He wasn't up when we left and honestly I'm not rewarding his behavior or attitude. We did bring him back a coffee since we had gotten ourselves one. He asked why I didn't get him up to go? Do you remember what you said to me yesterday? Yes... Well I'm not rewarding that. You got me a coffee. Yes, just because I'm not rewarding you doesn't mean I'm going to be rude either. Do you want the coffee? Give it to me... I started to walk in the house with it and told him he isn't going to get it by talking to me like that. He asked for it nicely so I gave it to him.
I had picked up some coloring books, crayons, pencil crayons and markers while shopping. A Thor book for him and two other ones for me. For a bit he colored in the Thor one. One of the ones I got is Care Bears. I used to love them when I was a kid :)
Remember the camping... He brings it up wanting to go... I told him not this weekend and we don't have money for it right now anyways. He says that I promised this month. No I didn't. I said I would look into it for this month. Well isn't saying it the same as promising? My son knows the difference in that very well as he usually won't promise anything. I just replied that no it wasn't the same and asked if he wanted to make everything into an argument? I think that he does...
I'm not sure why not however he hasn't been to the liquor store since Friday. He does still have enough money left for probably two trips of his usual. The next thing was asking me to take him to the grocery store for treats. I agreed to take him however he was paying for it. Well it's my job to feed him three meals a day and I'm not doing it so he is going to call his Nana and tell her I'm not buying him groceries... Our kitchen is quit full of food since we spend over $1200 a month on groceries. He made his phone call... We took him to the grocery store. He didn't get anything. I offered to take him to the dollar store as he can load up on treats there for cheap. He said no that he had better things to spend his money on like alcohol.
Again I will have to say how impressed I have been with hubby. I know he has a hard time dealing with seeing my son act like this however he is slowly seeing most of it for what it is. My son is having temper tantrums like a child except he is doing it with a 21 year old vocabulary and in a man's body which can be concerning when alcohol is added to the mix. Even my hubby has started getting stuff for my son when we are grocery shopping and he is not with us. Michael likes these...
In between all this my son is giving me a hard time about doing anything that I ask him to do. I have jars for the beef jerky that I make. Friday night I had one of them out and my son brought out the other two along with other snacks. Asking him to put this stuff away the next day... Yah that was fun. Well one of them was mine so therefore he shouldn't have to pick it up. I put mine away. He refused to put the other two away. Finally a day later I did...
Yesterday it was grapes that he took out. I asked if he was done with them could he put them away. He wasn't done with them yet... He did finally put them away and of course as is usual for my son he has to do these things when I'm in the kitchen in the middle of doing something. No excuse me's or anything... He pays the rent ;) You can see it in the way that he is walking around here and how he is looking at us. Pure defiance. We have been trying our best to ignore it and not give it any attention.
We have fruit-flies. I have been noticing them for a couple of days now. I have been trying to disinfect the kitchen and figure out where they are coming from. Yesterday I went around emptying all the garbages just in case. At least 30 of them came out of my son's garbage in his room when I grabbed it. Great! It's all the sweats and treats that he doesn't have ;) He has a big bag full of assorted treats in his room and his garbage was full of ice cream wrappers etc. I sprayed stuff down with Febreze but I'm going to have to get some Lysol I guess...
The last time he had a bath was on April 23. Before that it was awhile as I had asked him to make sure he cleans the tub afterwards because he does private stuff while in the tub and I didn't want to be bathing in it myself. Yesterday I tried to motivate him into a shower. Hubby and I had to go get cigarettes and I said he could come with us for the car ride however I wanted him to have a shower first as it's been awhile. He didn't have the energy and would have one later. This never happens when he says this. I said we would wait for him to get up the energy to have one so that he could go with us. I had an errand to run so we went to do that to give my son time and we brought him back a coffee. He decided not to come...
Hubby and I had a nice drive. We need that one on one time to just be a couple.
We came back and I spent time in the backyard with my son. Not saying much because right now it doesn't seem to matter what I say to him he will respond in the negative. So I colored. Sometimes I have to remind myself that I'm a mom and I have experience with kids having temper tantrums and using negative tactics to get attention. My son has never done this... I could feel him watching/looking at me. He put both his legs on the table and started rocking them. The whole table was rocking along with everything on it. He is just looking at me... I ignored him and kept coloring. Eventually he stopped ;)
He stopped taking Melatonin, again, when he started the Latuda. So even though we have the new antipsychotic on board he is still not sleeping good because he isn't taking anything to help him sleep. Latuda is not sedating. Last night when I checked on him around 1:30, he had taken the Melatonin and not his Invega or Latuda. Just breathe right... I woke him up to take them. Of course asking very nicely so that I don't trigger his ODD defiance any further. This morning he was up before 5...
What woke me up was my son asking my hubby for a pack of cigarettes. Now I haven't rolled cigarettes since my kids were small... So I Googled it ;) On Thursday he bought 100 grams of tobacco which should roll around a carton or 200 cigarettes. It's been 3 days and he has gone through 3/4 of it. He is now out of tubes. He said he had around 180 tubes when he got the tobacco so it seems to fit. He also has partial packs of two other kinds of cigarettes and yesterday was smoking my hubby's. I got attitude for asking him not to just take my hubby's cigarettes as he was without asking.
I know this post is getting long winded. So many thoughts in my head... I put hubby's cigarettes away because I know my son will just take them when he wants and we can't afford this. My son probably has more money in his bank account right now then hubby and I do put together. I'm trying really hard not to go further into dept. Because of my son snorting the aspirin I have now put away anything that can be crushed up and snorted... It makes me think of all the times in the past that I have fallen for the mindset of how hard-done-by my son was however I also know how hard it can be to keep things for other people when my son thinks that he is entitled to anything that he wants.
Wouldn't it be nice if someone I trusted could walk in and tell me what to do? Notice I added the trusted part. ;) I'm sure I could get lots of advise however depending on who gave it to me I wouldn't trust it... We need more money coming in to cover our expenses and our dept. The thought of leaving my home unattended and open to whatever my son sees fit to do with or in it while I'm at work... Seriously nothing would be safe from addiction or schizophrenia.
Oh well...
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.
Friday, May 1, 2015
Schizophrenia. What it is, not what it's not.
Did you reread that? I hope so. Did I grab your attention? I hope so.
I was thinking this morning, as I do a lot, about the perception of what schizophrenia is or isn't. I know that my son was diagnosed in 2011. I rarely think about how long ago that was. Four years that I have been trying to understand and research schizophrenia, medications, treatment options and other disorders that have cropped up along the way.
When I first started my research I had no idea what schizophrenia was. Honestly I didn't. I won't say that I hadn't been exposed to it or other disorders. Now that I'm more aware I can remember people or instances that now make more sense. People I knew that heard voices, not that I had any idea what that meant at the time. People who self-medicated. Kids in school that were in 'special classes' with behavioral issues. I had an idea about ADHD however I only knew this in the context of hyperactivity and that not everyone believed it was real. I guess we haven't come that far after-all. ;)
Now four years later and a lot of Googling I know a little bit about schizophrenia, ADD/ADHD, anxiety, depression, oppositional defiant disorder, self-harm, borderline personality disorder and addiction, to name a few. I have an idea of the medications used to treat these disorders and what they are supposed to do. I can even quote some of the statistics although I sometimes confuse them... 1% of the population will experience schizophrenia in their lifetime. So 1 in a 100. 1 in 3 or 4 or 5, depending on who is reporting the statistic, will experience a mental illness in their lifetime. I wonder if I'm the only one that questions phrases like 'in their lifetime'?
I know what schizophrenia is not. I have read it so many times that I'm almost to the point of not reading any article that starts of by saying what it isn't. I'm not even going to state what it isn't here because if you have done any reading on it then you already know and if you haven't then I don't want to continue to perpetuate a stereotype that I think we should be beyond by now.
Then there is the dreaded 'S' word... And no I don't mean schizophrenia ;). Does it exist? Yes. However it's another prejudice that I don't want to give credence to.
I'm sure most of us have heard of The Law of Attraction. There is a saying that goes something like this: Energy flows where attention goes...
Why are we still giving these negative stereotypes and misunderstandings our attention?
I will elaborate on that question. When I first starting researching schizophrenia in 2011, like I said I had no idea what it was. I knew it existed but that's all. The first thing I read was what it wasn't. Does it matter that what I was reading was stating what it wasn't? I ask this because in my mind it still caused a connection of thought... Kind-of like: Why do people think that? So one starts researching the stereotype... Do you see my point?
Now my world may be small and it's gotten significantly smaller over the last couple of years, since I left my job and started centering my attention on... Well this... Mental health/illness and advocacy. I can only say that in my life I have not seen or dealt with many of the stereotypes that we continue to give power to. Like I said though, I know that my world is small...
Now that I'm a little more involved and perhaps even a little more knowledgeable of mental illness in it's many forms, I want to see a change... I want to help make that change... I want to do my part if I can to further mental illness awareness. Not the stereotypes.
Over the past couple of years I have watched as conditions like depression, anxiety, OCD and even bipolar have gained ground and are not as taboo anymore. I think this is awesome! I know there is some concerns over conditions like ADHD or bipolar being over diagnosed or fads... I think in time this will even itself out. At least I hope so. The good thing though is that they are being talked about. These conditions are not in the dark like they used to be. Schizophrenia is lagging behind...
Schizophrenia is one of the most severe and misunderstood mental illnesses. And it's not getting any better. I question my part to play in this. Until recently I didn't consider myself a mental health advocate... I received a notice from Mental Health Advocates United letting me know that they had added my Facebook page... I remember thinking: I'm an advocate!?
I suppose I am. Until very recently I have tried fairly hard to keep me separate from who I am as a blogger and who I am on the internet. I'm BarbieBF... So if you Google BarbieBF (or BarbieBFLove) other then Barbie's best friend and boyfriend ;) I do believe most other instances are me.
I have tried fairly hard to protect my son's privacy and in reality my own as well as my family. Just because I'm willing to put myself out there that doesn't mean others are on the same page. The trouble with that is that in some instances I limit myself and therefor my ability to advocate. I don't try to guest blog on certain sites because they want your real name. That is of course assuming they would consider my blog in the first place. I did an interview for Plus Us Too (Yes a shameless plug of me :)) yet I didn't want to be visible.
Sorry I know it seems like this post has gotten off topic but I'm getting there. I don't mind if those who know 'me' in real life know that I'm BarbieBF however I have tried to limit those who know me as BarbieBF knowing 'me'. So lately I have been questioning that. How can I truly stand up to the stereotypes and the 'S' word and advocate that schizophrenia is not something to be ashamed of if I'm still hiding behind my anonymity?
My name is Barbara Froude and my son Micheal is diagnosed with schizophrenia. I also have a daughter and her name is Amanda. They are both truly awesome and every day they make me proud and help to show me what is important.
Back to my original topic. I know that science is struggling to define exactly what schizophrenia is. My question though, is can we stop saying what it isn't? Can we stop perpetuating the stereotypes and instead try to highlight what we do know? It's a physical disorder. It's a thought disorder. It's symptoms can include breaks with reality. So many things we do know that could be used instead.
Yesterday I saw something that caught my eye and stuck so I created my own version:
Can we close the door on stereotypes and open the door to knowledge? Can we start pushing what we do know? Schizophrenia is NOT hopeless. Recovery IS possible. Can we bring schizophrenia out of the shadows and into the light? It's time!
May is Mental Health Awareness Month. You can help spread awareness and show support by getting your own twibbon here: Twibbon
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.
I was thinking this morning, as I do a lot, about the perception of what schizophrenia is or isn't. I know that my son was diagnosed in 2011. I rarely think about how long ago that was. Four years that I have been trying to understand and research schizophrenia, medications, treatment options and other disorders that have cropped up along the way.
When I first started my research I had no idea what schizophrenia was. Honestly I didn't. I won't say that I hadn't been exposed to it or other disorders. Now that I'm more aware I can remember people or instances that now make more sense. People I knew that heard voices, not that I had any idea what that meant at the time. People who self-medicated. Kids in school that were in 'special classes' with behavioral issues. I had an idea about ADHD however I only knew this in the context of hyperactivity and that not everyone believed it was real. I guess we haven't come that far after-all. ;)
Now four years later and a lot of Googling I know a little bit about schizophrenia, ADD/ADHD, anxiety, depression, oppositional defiant disorder, self-harm, borderline personality disorder and addiction, to name a few. I have an idea of the medications used to treat these disorders and what they are supposed to do. I can even quote some of the statistics although I sometimes confuse them... 1% of the population will experience schizophrenia in their lifetime. So 1 in a 100. 1 in 3 or 4 or 5, depending on who is reporting the statistic, will experience a mental illness in their lifetime. I wonder if I'm the only one that questions phrases like 'in their lifetime'?
I know what schizophrenia is not. I have read it so many times that I'm almost to the point of not reading any article that starts of by saying what it isn't. I'm not even going to state what it isn't here because if you have done any reading on it then you already know and if you haven't then I don't want to continue to perpetuate a stereotype that I think we should be beyond by now.
Then there is the dreaded 'S' word... And no I don't mean schizophrenia ;). Does it exist? Yes. However it's another prejudice that I don't want to give credence to.
I'm sure most of us have heard of The Law of Attraction. There is a saying that goes something like this: Energy flows where attention goes...
Why are we still giving these negative stereotypes and misunderstandings our attention?
I will elaborate on that question. When I first starting researching schizophrenia in 2011, like I said I had no idea what it was. I knew it existed but that's all. The first thing I read was what it wasn't. Does it matter that what I was reading was stating what it wasn't? I ask this because in my mind it still caused a connection of thought... Kind-of like: Why do people think that? So one starts researching the stereotype... Do you see my point?
Now my world may be small and it's gotten significantly smaller over the last couple of years, since I left my job and started centering my attention on... Well this... Mental health/illness and advocacy. I can only say that in my life I have not seen or dealt with many of the stereotypes that we continue to give power to. Like I said though, I know that my world is small...
Now that I'm a little more involved and perhaps even a little more knowledgeable of mental illness in it's many forms, I want to see a change... I want to help make that change... I want to do my part if I can to further mental illness awareness. Not the stereotypes.
Over the past couple of years I have watched as conditions like depression, anxiety, OCD and even bipolar have gained ground and are not as taboo anymore. I think this is awesome! I know there is some concerns over conditions like ADHD or bipolar being over diagnosed or fads... I think in time this will even itself out. At least I hope so. The good thing though is that they are being talked about. These conditions are not in the dark like they used to be. Schizophrenia is lagging behind...
Schizophrenia is one of the most severe and misunderstood mental illnesses. And it's not getting any better. I question my part to play in this. Until recently I didn't consider myself a mental health advocate... I received a notice from Mental Health Advocates United letting me know that they had added my Facebook page... I remember thinking: I'm an advocate!?
I suppose I am. Until very recently I have tried fairly hard to keep me separate from who I am as a blogger and who I am on the internet. I'm BarbieBF... So if you Google BarbieBF (or BarbieBFLove) other then Barbie's best friend and boyfriend ;) I do believe most other instances are me.
I have tried fairly hard to protect my son's privacy and in reality my own as well as my family. Just because I'm willing to put myself out there that doesn't mean others are on the same page. The trouble with that is that in some instances I limit myself and therefor my ability to advocate. I don't try to guest blog on certain sites because they want your real name. That is of course assuming they would consider my blog in the first place. I did an interview for Plus Us Too (Yes a shameless plug of me :)) yet I didn't want to be visible.
Sorry I know it seems like this post has gotten off topic but I'm getting there. I don't mind if those who know 'me' in real life know that I'm BarbieBF however I have tried to limit those who know me as BarbieBF knowing 'me'. So lately I have been questioning that. How can I truly stand up to the stereotypes and the 'S' word and advocate that schizophrenia is not something to be ashamed of if I'm still hiding behind my anonymity?
My name is Barbara Froude and my son Micheal is diagnosed with schizophrenia. I also have a daughter and her name is Amanda. They are both truly awesome and every day they make me proud and help to show me what is important.
Back to my original topic. I know that science is struggling to define exactly what schizophrenia is. My question though, is can we stop saying what it isn't? Can we stop perpetuating the stereotypes and instead try to highlight what we do know? It's a physical disorder. It's a thought disorder. It's symptoms can include breaks with reality. So many things we do know that could be used instead.
Yesterday I saw something that caught my eye and stuck so I created my own version:
Can we close the door on stereotypes and open the door to knowledge? Can we start pushing what we do know? Schizophrenia is NOT hopeless. Recovery IS possible. Can we bring schizophrenia out of the shadows and into the light? It's time!
May is Mental Health Awareness Month. You can help spread awareness and show support by getting your own twibbon here: Twibbon
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BarbieBF
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