Update on me and my son


#1

He’s struggling and I’m struggling a little bit. I blogged this yesterday and it pretty much sums up how I am feeling right now: “I almost feel like we are on a precipice or the edge of a cliff and I don’t know if we are going to go over or manage to shuffle ourselves out of harms way. I don’t know how to move us forward and away from this edge without causing harm yet I also feel that if we don’t move forward then we will inevitably succumb to gravity and fall of the edge anyways. We can not stay teetering as we are. Perhaps I can but for my son it is not a good place.”

The Adderall then the road trip just wasn’t a good thing for my son. I don’t know if I mentioned this in another post but I don’t think so. My son got into his grandmother’s percocets, missed a couple of nights meds and was drinking. The result was more instability on top of what the Adderall had caused. For about two days he looked at me very cold and calculating and during this time he spoke to his grandmother about killing me. Yes scary and I’m still trying to process this and put it behind me. After we returned from the trip he went to see his friends and ended up with over 2 grams of weed that I eventually found and tossed. Also tossed a small bottle of vodka.

It’s been 4 weeks since I got him off the Adderall but with everything after that he has not bounced back and although I think I managed to keep him from having a break that maybe all that I have managed to do. I’m somewhat emotional right now as having my daughter here this last two weeks has been great but she is leaving tomorrow. I feel a little lost and I don’t know how to turn things around. In hindsight my son’s AP’s should have been upped after the Adderall but now I don’t know how to proceed with this without causing his ODD to kick in. Because of his insistence on bringing marijuana into the home I had a program called Ready4Life contact us. They help to transition people into independent living. His attitude is that he is an adult and can do whatever he wants ex: smoke weed. Yes he can but not in my home. I feel like I’m stuck between a rock and a hard place. Stand up for myself and my home and risk stressing him into a break or back down and basically allow him to have another break. Either way we both lose.

I have tried to talk to him about upping his AP’s for a bit until he can get over feeling so stressed. He knows that he is what he is calling stressed and needs help but he is trying to get benzo’s prescribed. He knows that he can’t make me understand what he is going through. I don’t think he can see that what he is experiencing seems to be his schizophrenia. His life can not in my opinion get any easier so it’s his ability to cope that needs to be looked at. I have questioned if he actually has schizophrenia or psychosis NOS but in light of what is happening I’m thinking the schizophrenia diagnoses may have to stick. We are both new to dealing with the negative symptoms of it and he can only recognize the positive symptoms. He has also been very edgy. Not really hyper like I have seen where he is punching his bed or hitting walls or jumping like a 5 year old (ADHD) but like a muted undertone of something not right. He is up most nights and sleeping most of the day. He was still up when I got up this morning at 5 sitting at his laptop with sunglasses on. Just a little odd…

Also yesterday he tells me that the YMCA asked him not to attend classed anymore that he wasn’t progressing as he should. I contacted them this morning and the conversation wasn’t quit so cut and dry. They have expressed concerns that he is not making any progress but he was not asked to not attend. Smart boy, he doesn’t want to lose his laptop and attending school was one of the conditions of me paying for it.

Yesterday he stated that he would rather die then spend the rest of his life on pills. I don’t know how to help him. A part of me is thinking that perhaps a break would have been the better option as at least then we could start the recovery process all over again which has to be better then him spinning like this.

I’m thinking that maybe a med change is in order. I don’t think anybody will be able to convince him to up his Clozapine as he has never wanted to be on it and I don’t want to cause him to become non-compliant with meds. He has been tried on lots of them in the past but was chronically smoking weed so only the Clozapine seemed to work. So maybe a lateral change will do the trick. I’m tossing around the idea of Latuda since it is also has the same properties as Clozapine? I think… I’m hoping that we can somehow meet in the middle and work this out.

I know I’m usually all about being positive, I’m just a little lost right now.


#2

Hi @BarbieBF. I am sorry you and your son are having such a rough time of things right now. I can understand not wanting to be on pills for the rest of his life. I, personally, try not to think of it in terms of a lifetime, and hope that one day I will be able to go off meds, but now is not the time.

As far as the school thing goes, I was terribly bullied at school, and abused at home, as well as molested by my grandfather. Also, my school was otherwise terrible. Most of the teachers were mean and/or incompetent, and the administrators were mean to me as well. I got bad grades, which was even more demoralizing. School was just not something that I could do at that time. I absolutely hated school, and dropped out when I was fifteen. Also, my Mom had told me that unless I get straight A’s and get a scholarship, I would not be able to go to college, as they hadn’t saved anything for me. So that just gave me another reason to give up.

Now that I am older, I am finally going back to school. One reason being, that now that I am older, and with the SSI, I qualify as an independent student, and so I qualify for federal and state assistance. I was also willing to take out loans.

So, I guess my point is that if he drops out of school at this time, it is not necessarily the worst thing in the world. I was simply too depressed, and had too much going against me to stay in. But he can always go to college later, even just a few years later. So you might not want to make his laptop contingent on him going to school.


#3

The YMCA is not a normal school :smile: He is supposed to attend Monday and Wednesday for 3 hours each morning, 9-12. It is for his high school equivalent or GED. Very small class room setting, mostly older people trying to get their education. 1-1 instructor help. Work at his own pace. No bullying or anything external to interfere.


#4

I’m so sorry you’re going through this. It’s an intense and complex situation.

It seems like a break is right around the corner for him. Which leaves you with two options: back down or take a hard stance.

As far as backing down goes. I don’t really think he’s functioning well enough for school right now, with the intensity of his symptoms and behavior. So I wouldn’t expect that from him. What you could try to do is make things at home as peaceful as possible. Avoid confrontations. Lower expectations. Be a little lenient and see if the peace helps to stabilize him. He could be just very overstimulated from all the recent activities.

Other option: confront his behavior and get his crisis team involved. This might seem like a tough way to go, but logically, he’s very sick if he’s having ideations of killing you. It would be completely justifiable to use some force in getting him stabilized.

Neither one of these options are ideal, or easy. And I know either way, there are going to be hurt feelings. But he NEEDS to be stabilized ASAP. Either by peace or by force.

My prayers and positive thoughts are with you as you decide what’s best for your family.

Blessings,

Anthony


#5

I am not expecting him to be production right now, not at all. I just didn’t want him losing out or lose his spot at the YMCA. He has attended once in the last 5 weeks. It’s the lie or misunderstanding around it that is concerning me. I have not pushed and allowed him to stay home when he is not doing well so there was/is no need for him to lie to me about being asked to not attend. As for the home environment. Zero expectation right now. I did his laundry for him yesterday. He has not showered in awhile and I’m not pushing it. We have been getting him out for car rides and coffees etc. No getting mad at him or even stern when he is staying up all night. Just calm nudging that it’s time to go to bed. Like I said it can’t get any easier yet he is still ‘stressed’ to the max. Yes he is toeing the line of a break I’m afraid.

I just got off the phone with his nurse and set up a home visit with his pdoc to come by tomorrow morning. Something needs be done ASAP.


#6

I’m so sorry you are both struggling. It sounds like you are doing everything you can. Now it’s time for him to make an effort. Usually people have to hit rock bottom before they get the motivation to change. So maybe a break would be a good thing. Although it sounds like he is saying some pretty scary things. What about a group home? At least there they have rules you have to follow. If he is asked to follow rules by someone else he may listen. When I’m staying up all night and sleeping all day that is an indication I’m not doing well. That’s not something he can control. I’ve tried everything and when I get in those funks I just can not sleep. Weed is probably the worst thing for him. It’s deceiving because when you’re high it can be fun and you justify using it, but when it wears off it increases psychosis. When I used to get high I would justify doing it because I had fun, but other people could see my symptoms were worse. A couple of times when I was stoned I had an intense delusion that I had to kill my mom because it already happened and otherwise I would break the space time continuum. Pretty scary stuff. I would have acted on it if a small part of me didn’t believe it. And I justified getting high because I have symptoms anyway and it was just my illness. My symptoms have been a lot better since I stopped smoking in February. I hope things work out. Keep us posted. :sunny:


#7

I’m glad that your symptoms have improved. Good for you on stopping the weed!

We are in contact with a program called Ready4Life. He has an appointment with them on Wednesday. They are supposed to help people transition into independent living by helping them to be aware of the programs and services available and helping to us them. He wants an apartment… Don’t think he realizes yet that that may not be an option with limited income on disability. There are group homes in the area which may have to be looked it. I can deal with most of what is going on however I’m having to draw the line on the weed in the home. For a fleeting moment I contemplated keeping/using some and that is not good. It’s not a road I’m willing to go down again. As you say he may be able to follow the rules better when it’s not mom :smile:


#8

I think you’re doing a great job managing this situation. You’re getting his treatment team and other resources involved.

Just try to take care of yourself and your emotional needs as well. I know you can do it. You’re a very strong and positive person :slight_smile:

We’re here to support you all the way!

Blessings,

Anthony


#9

I’ve been away from the board for a few weeks and just checked in this morning to find your post. I’m sorry, Barbie, that your son is decompensating after having done so well for so long.

I agree with what has been said by the others and just want to emphasize that hitting bottom is definitely not totally a bad thing. Ultimately, they have to not want to be psychotic just as badly as they want their next breath.

My son was psychotic (his third break) last June and finally called me from the McDonald’s parking lot in tears; I was in the car in minutes to go to help, only to find that he has called the police right after he called me and he was on his way to the ER. He spent 2 weeks in the hospital (his first voluntary admission) and has been steadily improving ever since. He chose to try to go back to school ( a vocational rehab school, which I was reluctant to approve of since he would be so far away), but one he got there and started to slide, the school mandated that he take his meds every evening in the nurse’s office or he would have to leave. He decided to be med compliant for the first time since he was sick. It has been a struggle, but I think the experience has been positive mostly because it was his choice, his idea from the beginning. In hindsight, sitting in the McDonald’s parking lot in tears was his bottom, and he just didn’t want to go there again.

Sending warm positive thoughts your way, and hoping things go well tomorrow.


#10

Hang in there @BarbieBF!I can’t imagine how hard this is for everyone!We are just starting out on this road that you are on.I do know what it’s like to know that your son wants to kill you and the uncomfortable feelings of being scared of your own child.I have learned that it will get better-just may be one he## of a ride to get there.Sending you much love+prayers!Keep us posted…


#11

Hey BarbieBF, maybe you could find a mentor for him. I know this is very hard to find. Somebody older and has learned the hard way to not smoke weed and also has Sz. I don’t know how old he is, but maybe he could find some help in a support group with people like him. You might have already tried this. Hope things get better. My prayers are with you.


#12

I didn’t read every reply. But I would take his threat to kill you very seriously.They say most people with schizophrenia are not violent, but the ones who do get violent are the ones on drugs or unmedicated. When you read about these mass killings, by mentally ill people in the last few years, there were warnings signs that parents and friends picked up on but if you look at the most RECENT shootings by that kid in Southern California, you saw his parents interviewed afterward and they say they would never have suspected that their kid would do this. They were caught completely by surprise.


#13

Wow, just came across this post. I am truly sorry that you and your son are going through a dark time right now @BarbieBF
Latuda is closer to Geodon than it is closer to clozapine - Latuda is also good for depressive episodes found in bipolar and schizoprenia, but it is approved for bipolar depression and of course schizophrenia.
Maybe the trip was stressful for him and he is experiencing a setback. I would follow up with possible new or adjusted meds, and keep the course as usual - look ahead.
You are a strong mother and he needs that strength right now - follow up and communicate to his doctors and do a lot of listening and talking - I really wish you sunlight during this time - hang in there and get as much support as you can


#14

Hey Barbie~~~
I dont know how old your son is-but I agree with you totally about drawing lines about weed and any other things you dont want in your house. Do it now, or it will be 10x harder later.
Gd-this sounds like mt son in the early years. All I can tell you is what I have experienced.
If your son is of age-I think it would be good to let him get his own place. This does not mean he will turn around. He may have a long road ahead of him and make many more mistakes. One thing for sure, you really have to choose your battles well–I did not and it hurt both of us. i tried to fight EVERY battle and in the end, it didnt change a thing really. Oh dear Barbie....I cant stress how much you have to watch out for yourself. Im glad you have a husband to lean on....in hindsight-I never let C. take the consequences for anything. I really do believe drugs are what cause someone with a mental illness get beligerent ( Sorry spelling ) or possibly violent. It seemed most of the time, C. was always going through withdrawals and that definitely put him ina bad mood to put it mildly. He is still doing this-the difference is that Im going to let him make his own decisions from now on.
If you ever need to PM to me, you are always welcome.
Stand your ground…much love


#15

I am very sorry you and your son are going thought a tough time now, barbieBF. The most difficult part of this crisis is your son not being med compliant. I don’t think he would be persuaded by anybody including a Pdoc. Only a break will teach him a lesson about why should be med compliant. So you’d better not push him around about up the dose of clozapine as you need to protect yourself from being harmed by him.


#16

BarbieBf,
I am so sorry this has happened. I was very amazed that he made it through the drive and the visit. I’m very sad to hear that this has been a huge set back.

I just wanted to say that I think you are very brave no matter which option you choose. I understand it’s going to be hard either way. Keeping him at home and trying to get him through this stall and stalemate isn’t going to be easy and your handling it so well, so patiently. On the other hand, it’s not going to be easy letting him go to different living accommodations I’m sure.

The thought of a resident home or a living facility is also a brave choice. Maybe this will be the new situation that sparks change. Either choice you make, I know you will get the information you need to make the best choice possible for all involved.

I was really scared for you when you said you were thinking of maybe keeping some of the pot for yourself. You too have come so far and done so much. I’m glad you were able to stay strong. That was no easy task and you made it. You’re right; you can’t give up your own health.

I think you are handling this with such amazing grace considering the decisions you have to make. You are a very loving and amazing person and I’m glad get to know you.

I’m glad you have a PACT team and other’s to help you access the situation and give you good ideas and realistic options. I hope the right answers come to you soon.

Many people on here are very fond of you and value you friendship very much. Thank you for letting us know how things have been going.


#17

Thank you everyone for your responses. I think my normal optimism deserted me for a little bit yesterday. My daughter is going home today :frowning: :cry: I’m PMS’ing which isn’t normally this bad but I haven’t been taking my vitamins and supplements like I should. And I have been holding onto a thought that perhaps my son had psychosis NOS instead of schizophrenia which isn’t the case.

As for him talking about killing me. This happened while he was on the perks and they basically robbed him of any emotion it seems except frustration and anger at me. Once off them this went away. I have spoken to two members of PACT about it and have expressed my concerns that my son needs help understanding and learning a better way to communicate as according to him now, he was under the influence of alcohol and just ‘venting’ to his grandmother that he didn’t mean it.

@kidsister Yes it scared me a bit as well and I got it out of the apartment and into the dumpster :smile:

@Morgan I think part of the problem that I run into with my son is that his breaks and times in psychosis have not been very negative in nature. Rarely that I know of did he experience voices being mean to him etc. They seem to usually be of a euphoric nature. 6 breaks in 3 years and yet not enough to make him not want to go there again. I’m so glad that your son’s last break has helped to turn him around.

@btrfly36 I’m sorry that you have experienced being afraid of your son. It does hurt. Thank you for understanding.

@bridgecomet I have always seen a lot of similarities in our sons. Thank you for your support.

Thank you everyone else for your support as well. I will let everyone know how the appointment goes with his pdoc today.


#18

He sounds like he could really use a substance abuse program. Addiction can really make recovery from mental illness much more difficult. Does he officially have a dual diagnosis?


#19

Except for the original diagnoses of paranoid sz, I’m not sure what his official ones are. I don’t think his workers, until a year ago when he moved in with me, knew the extend of his marijuana addiction. Once he was put on a waiting list while inpatient to go to a long term facility I do believe for dual diagnoses but it fell through due to construction issues at the facility, then he was released from hospital and he refuses to get help for addiction. He does have ADHD, ODD, Sz and addiction however officially I don’t know. I will ask his pdoc today.


#20

I asked about ‘official’ diagnoses. Schizophrenia with concurrent disorders. I tried to get a clear answer about ADHD and ODD. I was asked if he had previously been diagnosed with these and no he hasn’t but two pdocs have brought up that he appears to be ADHD and he does fit the criteria however can’t handle stimulants but this pdoc has not treated him long enough or seen him I guess not on marijuana long enough to make it official. Although he did seem to agree with my opinion that my son does have both. So unofficially he has ADHD and ODD :smile:

We are going to try switching him from Risperidone 1 mg to Invega 3 mg and leave the Clozapine as it is for now. Also try to get him back to using the Neurontin on a more regular basis as trying to use it as a PRN isn’t how it is supposed to be taken. My son seemed agreeable to all this so fingers crossed.

I filled the YMCA in on the fact that my son almost had a relapse and they are willing to work with us/me to help him. There is a literacy program that he can attend and work in both programs however he resisted the idea of working in a normal learning environment. His sister was going through some of his school work that he had done up until the Adderall and commented on how good it was. As long as he is showing some progress the YMCA is willing to work with him so hopefully once I can get him stable again we can help him to work around his own resistances and get him back on track.