Tis the season. Merry Christmas!

Firstly I would like to wish all my readers a very Merry Christmas and Happy New Year!

All I can think is wow what a year and I can't wait for it to be over...

At church I had my eyes opened to a word that I never really thought about before other then seeing it in the stores on advent calendars. You know the ones with little chocolates in it to countdown the days until Christmas. Well advent is the 4 weeks leading up to the celebration of the birth of Jesus.

I'm sure a lot has questioned the timing of this as I think most of us realize that Jesus wasn't born at Christmas. He was born sometime between March and October. While our calendars date the start of a new year in January... That was not always the case. Spring is the beginning. A time of renewal.

I seriously love Christmas! The last couple of years have been harder to celebrate and this year... I'm going to do my best to celebrate from the point of advent. A time to slow down and enjoy. A time of being grateful for what I do have. Yes a lot easier said than done.

We are pretty much settled into our new 'little' home. A lot to learn and a lot to not take for granted. Water, plumping, sewer, heating, condensation and cooking in a propane oven. All of it needs to be paid attention to and not taken for granted. I've pretty much got the timing of emptying our holding tanks figured out. Getting condensation in my closet and cupboards under control. Showering... Another adjustment on time and water management. Now it's trying to figure out how to cut down on drafts and better heat the place.

When it's just me and hubby here it's not so bad when it comes to lack of room. Add my son and sometimes my daughter and grandson. It gets a little tight. I feel bad when I tell my daughter no to babysitting however spending the day keeping the little one out of or away from my son and his 'mess' is not something one can look forward too. ;)

My son asked last night if he can half move in. He is going off of disability and the group home wants him to pay out of pocket more than what disability covered. I would have to agree with him that staying there wouldn't make sense. I have on occasion tried to look for housing for him. He's supposed to be getting help with this however I guess no one is having any luck with it.

Almost a month ago hubby had a mild stroke. He's gone off medications that he was taking to help stabilize his moods. Between that and his loss of feeling and functioning in his right side, it's hard for him to move around in such little space. Add my son who is in and out a lot of the night which keeps the trailer rocking and disturbing his sleep.

The doctor put hubby on blood pressure and cholesterol medications. His blood pressure is now the best it's been in years so that's a good thing. He's finally not bulking at me trying to put us on a better diet of less salt, sugar and just overall more healthy. Struggling to get used to his CPAP machine for sleep apnea. He needs to get used to it though as sleep apnea causes lack of oxygen to the brain therefore causing more stress on the body and therefor raising blood pressure.

Where am I at with all this? Most days struggling. A couple of times I've been all gung-ho about going back to work. Honestly a part of me is so looking forward to getting back out there around people and helping to financially support us. Okay... Just planning getting out of here. I feel stifled.

Each time I start something happens that makes me rethink what I'm doing. Aside for all the rest I'm in the beginning stages of menopause. Possible about to go fully menopausal. My normal cycle is every 21 days. Yup twice a month. I went 4-5 months where I only had 3. Great right! I started looking for work and ended up with 2 last month. Not so great as they hit me hard and heavy. Spent days fighting off a migraine.

Even if I didn't have to worry about that... Guess who does and takes care of pretty much everything? Am I supposed to work and come home and take care of everything at home too? I'm not even sure at this point how capable he is to cook for himself.

Edit: Section removed due to privacy reasons.

I guess the next decision we have to make is whether to let my son stay here from Monday to Friday every week. Last week we had discussed cutting it down a day.

Oh well... If any of my readers want to pray for us I would greatly appreciate it!

I probably won't blog again until the new year. Hopefully it will be with good news that at least his pension is sorted out!

Ohhh I felt my grandaughter move!

© BarbieBF and Schizophrenia - Mom's Journey, 2014 - 2019. 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.

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.

Discharged... What?!

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

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

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

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

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

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

Mom
BarbieBF

$300 should do it...

That would be the amount of money that my son thinks I should 'be nice' and give to him from his disability payment. Really there should be some sort of 'Yes he's an adult and still my dependent (yes I can provide receipts!)' option on my income tax return because honestly he costs me (my hubby) a lot more then what disability covers. I thought I was being nice by already writing off the money he currently owes my hubby for tobacco. But no, he wants to buy his gaming subscriptions (that he doesn't even play regularly), probably tweak his nicotine habit (almost every month he wants to buy something new that he ends up not liking) and walk to the store everyday. And to think I give my hubby a hard time about buying food from the food truck at work when he's the one working his ass off 10 hours a day! And it's his taxes (hard work) that cover disability payments, not the infamous 'government'. That's all I will say about that! ;)

Now if I could just get my son in the shower... It's times like that this, only times like this, that I wish that I was a man, better yet, Hulk Hogan because I would physically pick him up and throw him in the shower while wearing nose plugs! I'm being cute but honestly the boy smells, bad, two feet radius bad.

I took a sleeping pill last night and actually got 7-8 hours of uninterrupted sleep! That would probably explain why I'm in good spirits about all this. Not that I can do much about any of it anyways but it helps to not be depressed about it.

As for how my son is doing. He slept about 10-12 hours. The best I can figure he woke up sometime between 1 and 4:30 AM. He still hasn't eaten anything. So the last time he ate (that big plate of rice!) was Tuesday, so almost two days ago. Oh and the two pickles... He is drinking fluids which is good although mostly coffee. I'm sure his brain could do without the extra stimuli but coffee and energy drinks seem to go with the territory. If they could come out with an instantly energizing drink that was actually good for you... He hasn't taken any medications since yesterday morning. His plan is to take them tonight when he goes to bed. When I asked what time that would be I just got a blank look. I'm really hoping he hasn't found an excuse to delay or not take them as I think one of his workers may have suggested that he try doing this to help him get back on a better sleep schedule. Honestly my son couldn't care one way or the other when he sleeps and if his days and night are mixed up. So really all they did was give him a reason to not take them and while I get the reason behind it, I don't see how going a day and half without medications is going to do him any good. Maybe it will actually let him progress to the point that I can have him admitted? I know, that sounds so bad even to me but it's the bigger picture that I'm looking at.

That's true... I am hearing that a lot when I tell my son things. You need in the shower, you smell. That's true... You need a good nights sleep. That's true... I don't think you should go to that shelter if people in the business are saying it's not a good one. That's true... I asked him the other day if he was cold and he responded with: It appears that way...

The shelter reference. While I want my son in a place that can give him more structure and while I do not want to watch this slow decline without being able to stop it, I'm still not going to send him to a place that is going to do him more harm then good. The one shelter that appears to have a bed available is in another city about 20-40 minutes from me and does not have a good reputation. He says that he is willing to go. I'm saying I don't think it's a good idea. If his worker is saying that it's not a good choice then it's not a good choice. If he really wants to go then I will support it but I think we should wait until a bed opens in one of the two shelters that does offer the support and environment that he needs. Really the choice is more mine then his since I can't even get him in the shower so he certainly isn't going to take or make the steps needed to go to this particular shelter.

So for now my son is staying where he is. In his room looking at nothing and smoking cigarettes while he contemplates whatever it is that his schizophrenia has him thinking about. I wonder if I start the shower if I can get him in it? Worth a try...

Mom
BarbieBF

Patience is a virtue, or is it?

This blog post is more of a ponder then my usual blogging. This is not the first time that I have felt like I have no patience left to deal with my son or his schizophrenia. They say that patience is a virtue however at times I question if there is a limit to how virtuous I should be. How much patience should I have? Is it doing my son more harm then good? At what point do I say enough is enough?

For two weeks I have been watching my son barely maintain being stable. Stable from a medical perspective in that he has not reached the point of needing hospitalization and I don't know if he will reach that point. In my eyes he is far from stable compared to where he has been. He is coasting along in a world where time has little meaning and he is spending that time doing whatever it is that he is doing in his head. Contemplating his soul and the universe? Listening to voices or laughing with them or intrusive thoughts? Or testing his mental powers as I was told this morning when I asked him why he had taken out two decks of euchre cards.

I don't know if the tone of his schizophrenia has changed or if it has not progressed to where it has in the past. Just over a year ago it was telekinesis, astral projection and voices that he thought belonged to his cousins. I think I sometimes need a reminder of what it was like when he first came to live with me 15 months ago as his bad days now are still better then his best days back then. He has come a long ways since then. Telekinesis and astral projection have not been mentioned since I think September or October of last year, same with voices.

I have seen how well my son can do. I have seen what he is capable of. I believe that he is capable of so much more. I have read the articles on how a caregiver is supposed to provide a stress free environment. I have read articles on the possible long term damage that psychosis can cause when left untreated. I have read articles on anosognosia. Sometimes I get sick of reading and researching schizophrenia and what scientists think it is. I know the statistics. I believe that my son can beat this if he wants to or better yet if he has to.

All this brings me to my ponder on patience. Does being patient mean that I should not get upset or mad when I'm waking up every morning to the mess of a 5 year old? Does being patient mean I should not expect my son to take minimal responsibility for his own personal hygiene as well as his mental and physical health? Does being patient mean I don't have the right to make my own life and living conditions a priority?

If I had accepted what I was seeing 15 months ago as all there was then we would not be were we are today. If I accept what I am seeing today as being the best that he can be then there is little hope for his future. I refuse to give up the hope that my son can lead a better more fulfilling life.

So today I am out of patience. Not because I don't love my son but perhaps because of how much I do love him. Because if I don't get mad or expect more from him then I fear that I am giving schizophrenia free reign to work it's 'magic' in my son. I refuse to let it have my son. I refuse to accept that what I'm seeing today is all there is. Instead I will believe that there is a reason that I have run out of patience and that reason is that I need to motivate my son to be more then schizophrenia.

Mom
BarbieBF

Easy peasy with a little patience mixed in... Folie à deux

With a little juggling my son got his watch yesterday. We took a taxi to the mall then to the grocery store where my hubby met us as we were checking out. Chiropractor then home to order pizza for supper. While waiting for the pizza hubby took my son back to the jewelers to adjust the band on his watch since it was too big. Oops, I should have had them do that when he bought it. We had to look up the discount price on my phone to show the jewelers as the price they had didn't match what was online. Thankfully that didn't take long to do as my son was showing signs of irritability with the sales clerk and my son got it for the online price. Whew! Originally an over $400.00 watch discounted to $190.00. Not bad!

Hubby took my daughter driving again while my son and I just vegged watching TV. Well the TV was on. My son was reading up on his new watch and I was dozing. By the time my hubby got back I was struggling to stay awake so it was off to bed for us. Another night that I didn't have to take Melatonin. I reminded my son about school and asked him if he wanted a Trazadone for sleep to which he replied no. I teased him a little bit that maybe tonight he could not forget to take his pills. He smiled and agreed. *fingers crossed* that things are finally starting to turn around. When my son can take my teasing without taking it as an insult that is a good sign. I woke up around 1:40 AM and he was sleeping on one of the sofa's while my daughter was watching I think another episode of Pretty Little Liars. His pill dish was empty! It took a couple of tries but I finally got him into bed. Every time I walk away he lies back down yet if I stand over him he gets irritated.

I slept in a bit this morning and didn't get up until almost 7. Started calling my son around 8. Finally got him up just before 9. School starts at 9. As much as I want him there on time I figure during times like this baby steps work best. I got out some clean cloths for him, got his backpack ready and filled his water bottle with iced tea. With some nice nagging, a lot of huns, sweethearts and pleases he got dressed, brushed his teeth when I asked him too and was finally ready to leave by 9:30. *pats self on back* As he was leaving he noticed an article that I was reading titled: Folie à deux: When Two People Go Insane Together. I was curious about couple psychosis due to a post I was reading on the Schizophrenia.com forum. Another good sign when my son notices or takes interest in things around him. Off to school he went and he even appeared to be in a good mood about it! He even noticed that I had filled his water bottle for him! I think I'm PMS'ing as for some reason I got a little choked up watching him leave. The normalcy of these situations seem to speak volumes to me, for which I am grateful, as they give me the hope that I need to keep fighting for my son's future.

The article I just spoke about got me thinking a little bit about the dynamics of the relationship between my son and his Nana. Folie à deux is a term that originated in psychiatry and was replaced by the term 'shared psychotic disorder', that is usually prevalent in couples but also happens within other family structures. The article states that: ... all that's really necessary is social isolation and a difficult-to-break connection between the two people. I'm not saying that my son's Nana is psychotic however I wonder if the stress of coping and living with my son for an extended period of time coupled with her unconditional, seemingly 'blind love' for my son has contributed to a very unhealthy view of the situation. I know that when things were bad that social isolation was certainly a factor. I know that her ability to step back and see a situation beyond what my son was telling her or seeing, from my point of view, become non-existent. Perhaps I am reaching as a way to deal with my own feelings of hurt that someone I do care about is unable to see me, what am I fighting for or what I think is the bigger picture. She seems to believe everything that my son tells her with apparent little regard for the facts. She has known me for over 22 years and while our relationship has had it's ups and downs as any in-law relationship would, that she could believe that I am who my son has sometimes painted me to be, truly is heartbreaking for me. For reasons that I will not write about here, I do know for a fact that her opinion of me is pretty low at the moment and she really does believe that I am not treating my son right. The sad part it that the only person that could probably fix this is my son himself. To fix it he would have to admit to her all the lies and manipulations that have been told. I certainly won't hold me breath on that one happening. The article states that forced separation should do the trick. While they are separated by distance they are not separate as when things are tough here she is but a sympathetic phone call away with only my son's, usually unstable, viewpoint being considered. I don't think he even calls her that much when things are going good which should speak volumes in my opinion however it is what it is. You can read the article here: http://io9.com/5955095/folie-a-deux-when-two-people-go-insane-together

My son just got back from school so I should go get my day started.

Mom
BarbieBF