Friday, May 29, 2015

I'm seemingly not living very well. The 4 C's and Acceptance

'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.

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.

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.