Family and Caregiver Schizophrenia Discussion Forum

Update on current status


#1

Well I gave my son an ultimatum, go see his dr and get back on shot and agree to be committed for at least 30 days. If not, I will file order of protection on him! He pushed back but eventually gave in. However, dr said to just give him the shot and then come see him every two days! I asked him why he changed his mind about committing him and he said that bc he was “sober” it would be hard to find a place that would take him! Sounds like bs to me. This way he gets more money!!! Anyway, they are supposed to taper him off his opioids and will not prescribe anymore. I don’t believe there will be a need to taper since he has already taken/sold/traded all he had. And he just got them last Friday. I also said that he will have to call medic transport to take him bc I can’t work and haven’t been approved for disability yet and therefore have no money for gas! 15 miles to town. So we shall see how this goes. If he doesn’t comply with dr’s then they said they would release him. HOW ABOUT IF HE DOESNT COMPLY YOU COMMIT HIM!! He is, after all mentally disabled and needs help with that and his drug abuse!! But no, they will just wipe their hands of it and leave him alone with me. I’m definitely praying for the best and for all the family, friends and their loved ones who suffer from mental illness and self medication! We seem to be the forgotten ones in society until something bad happens!!


#2

Last time my son went into the hospital (involuntary), they got him on the shot and let him come home since compliance wouldn’t be an issue.

Good for you for staying strong and holding your ground through this. It’s a hard thing to do.
I was reading up on the laws for your state (see it in your profile) and they say that only a family member can apply for commitment. I don’t know if that rules out doctors or not.

I wish you luck. I’m starting to be afraid that the shots aren’t working for my son. Everyone keeps saying we need 6 months, and I was OK with that, but now he’s stopped sleeping, and that’s always the sign things may go downhill fast. It’s hard to be patient when you know the bottom could fall out at any minute.
I’ve got a call into the nurse now to see what they say.


#3

Staying strong is so hard when I feel like I’m the only one on his side. But this time, I will stay strong! I have no other choice! And you are so right about the not sleeping!!! I wonder why that is? I suffer from chronic migraines and can notice changes in myself that I believe is my body warning me one is coming on. I wonder if that same principle could apply with them?


#4

For my son, it’s the racing thoughts - when they start, he can’t turn then off enough to go to sleep.

And, it’s a common problem for anyone with thought disorders. Even Alzheimer’s patients are known to stop sleeping.

I think he even tries to sleep and can’t.

He did say he feels OK though (his idea of OK & my idea are different), then asked if I could pick him up some Red Bull. I hardly ever turn him down on anything, but I told him I didn’t think so since he wasn’t sleeping well, and he was OK with that.

The mere fact that he was OK with it & didn’t argue about it is another sign that things aren’t right.

He’s also starting to get what I call the “wide-eyed” look and laughing to himself more.

This med made his almost symptom free for a few weeks, but that was after the 2 starter shots (256 mg & 150 mg I think?), then it’s like the maintenance 117 mg shot didn’t have any affect at all. He’s been slowly going downhill since about a week before he got it, and now I’m afraid that slow slide is going to ease into a rapid descent.


#5

I think you are wise to be concerned. The sleep is usually a sign. Let’s see what the nurse says too. How many hours of sleep did he get last night.


#6

I don’t know - last 2 nights, he was up when I went to bed, and up when I got up, and I only work mornings outside the house. No afternoon naps.

I see signs that he’s smoking a lot, a little bit of mess in the kitchen that he’s eating/drinking, but the kitchen mess is decreasing and the cigarette butts are increasing.

He did eat dinner last night and he’s still bathing, but I think I’m seeing his appetite drop some too.

I swear that last shot seemed like it didn’t work at all.

Sorry for hijacking the thread - not my intention.


#7

My son gets that wide eyed look too and the laughing! He also starts talking to himself more and singing really loud!


#8

My son doesn’t sing, but the music gets louder & louder.
Sometimes, I wonder if he’s not trying to drown something out.

I don’t see my son talking to himself though. It wouldn’t surprise me, but I haven’t seen it.

I try to talk to him a lot when he’s like this to get him out of his head. It never seems to work, but maybe it helps a little.

If he gets really sick, then everything makes him mad or starts something new, so I avoid conversation then.

I tried trusting what they told me. That he needs 6 months to see the full effects, and that the pills were for the first month only. I’m going to start giving them to him again tonight with his vitamins and if they help, I’m going to dare them to refuse to give me a refill. I’ll just be the biggest PIA they’ve ever seen now that I see their ideas are not working.

I’ve been a little concerned that they didn’t schedule him with the psychiatrist more often after his release from the hospital too, but tried to trust their judgement. He’s only seen his case worker once and the nurse for his shot once since he was released around the first week of December.

That’s about 7 weeks. They didn’t get to see him get dramatically better then start to slip. I’ve called to tell them, but I get the impression they care, but think I’m too impatient. Trust me - they haven’t seen impatient yet, especially if he ends up back in the hospital.

I’ve also about had it with this idea that he can’t get into the county’s intensive treatment program without Medicare - and disability could take me years to get for him. Everyone is about ready to get an earful from me. I’m incredibly angry this morning - not at him, but at everything and everyone surrounding his issues right now.


#9

I’m going to the psychiatrist in 2 hours today, hopefully they care and start a new medication plan for him. I think the order of protection is a good idea. Then they will have no other option than to hospitalize him. I’ve never heard of a psychiatrist seeing a patient every 2 days, maybe a therapist or psychologist, but definitely not a psychiatrist.


#10

I’m so sorry to hear this, slw. My advice as a mom is don’t ignore your gut instincts on this. If you don’t think the meds are working, you are probably right. As moms, we see our kids and know our kids better than anyone. All these little signs you’re seeing, less sleep, appetite, okay with no Red bull, laughing to himself, etc., in my opinion these are all red flags. The Invega Sustenna doesn’t seem to be working very well. I would get it switched as fast as possible or add a med to it until he can be seen soon. I always want to kick myself when I don’t listen to my gut instincts. I always know. I can see by your posts you know something isn’t right. I hope you do go kicking and screaming until they listen to you. My feeling has always been that they should give them plenty of meds until the psychosis is gone, priority one, then taper down if need be.

By the way, it only took my son about two months or so to get disability. They also gave him all the back disability from when he was first diagnosed. I would start that process asap.

I hope you have luck with the docs today.


#11

@JulieAnn, Thanks for the comments. I’m definitely right. Now, he’s OK, he doesn’t need sleep because everything is just a dream anyway.

I gave him some of the oral Invega, so maybe I can hold him together until he sees the Dr on Tuesday, but he is not going to be compliant on pills, and this med did work like a miracle to start. I’m really, really hoping he just needs more of this.

We applied for disability about 3 months ago. They haven’t denied or approved yet, but sent a letter saying they would not meet their 90-day deadline. I think on Monday, I’m going to be calling them to ask them what the F is their problem. If they give him backpay all the way back to when he first because ill, I guess it would go back to when he turned 18 since he first became psychotic when he was around 15.

He’s 27 now, headed toward 28, so that would be quite a bit of money. I’m sure they won’t do that though. We only filed to get him on Medicaid to get him into an intensive program that only works with that type of insurance. I’m going to be calling since it’s county run later to give them the piece of mind that’s been building - I feel like they’ve kind of left him hanging since he got out of the hospital. They didn’t get to see him get better, then get worse - I’ve been very angry about that all day today.


#12

‘Trying to trust what they told me’ sounds all too familiar. I know sometimes the providers want us to be more patient, but sometimes I also think they just want to think they know better than the last person who treated our loved one or want blind faith when we can see clearly that something isn’t working.

I hope I have learned my lesson to stand firm when I don’t agree with a suggested treatment, after our absolute disaster with Abilify - which had in fact BEEN TRIED BEFORE, but… this other provider felt had not been tried in the right dose… or whatever. I caved to their pressure because I was just so tired, and wanted to believe they had the answer.


#13

I’m glad you have some oral meds to give him. I hope you can get them in him somehow until he sees the doc. My son is on Invega Sustenna (shot) and Ability (10 mg) oral. Maybe they can give him a different oral med, maybe that will work with the shot that he’s getting. I always found a way to somehow to get the pill in him. This is just so hard, isn’t it? Frustrating. I’ve resorted to bribing, sneaking it, insisting or else we won’t do…?, whatever I have to.

They have a few other types of meds that are given by injection. Maybe another one would work better for him. I’m sure you’ve looked into all of them.

Yeah, they probably won’t give that much back pay for the disability. I’m not sure where they draw the line. Maybe it’s when you first apply, they use that date. (I may have been mistaken on my first comment about back pay from when they were first diagnosed. Sorry. Easily confused over here.) But your son should get some back pay.

Keep us posted. Hope it goes well today.


#14

I totally understand!! Go ahead and apply for disability for your son. But go to the ss office first and when he is really struggling. That’s what I did and my son was approved in 2 mths! I was shocked!! He didn’t even get denied once. He was 22 at the time. On the other hand, I applied for myself due to chronic migraines and was denied and am waiting on appeal hearing. I filed with attorney in feb 2015! All me and my son have to live on is his disability $730/mth. And he is constantly threatening to leave and take his money!! But I’m his representative payee so he can’t do that! I hope mine gets approved soon! And maybe your sons will too!


#15

Maybe they’ll approve his as soon as the get to it - we sent everything through our local mental health clinic. I didn’t want to drag him into the social security office for his sake, but they kind of deserve to sit there for a few hours and listen to him.

I’ve got a few other things not related up in the air right now too with people dragging their feet, and pretty soon, people better get to stepping or they might be missing a limb. All it would take is a day where someone plucks my last nerve - it was almost this morning.


#16

They have to be shook up very very well. Make sure you remind the nurse.


#17

Same thing happened with my son and he was not denied. I took my binder in and both my husband and myself went in together.


#18

If you start the process online they have to go back to the time when you applied. It is hard to relive everything but he had the history and I bet he is approved. I too think that taking a trip to the SS office is a good idea.


#19

For what it is worth, my heart goes out to you completely. I have never understood why it takes a travesty, or MANY travesties, before Schizophrenia is treated as the life threatening illness it is.