Family and Caregiver Schizophrenia Discussion Forum

I am so lost right now


#1

I recently joined the group. I have looked at it but could not manage to get words out. On the first of September my 14 year old daughter had a completely out of nowhere psychotic break. She ended up in the hospital for two weeks and after she was honest about things that had been going on they diagnosed her as paranoid schizophrenic. I am trying my best to hold it together for her but she is struggling and so am I. I never would have thought it or expected it if someone would have told me a few months ago. It just came out of nowhere. Now I find out she has been hearing voices off and on for a few years, she just could not make them stop this time. They have gotten more intense this time. She sees them and hears them. The medicine they had her on in the hospital had them go away completely but then she said she missed them. She says it is too quiet without them. After seeing thepsychiatrist since then he lowered one and added an antidepressant and changed her anxiety and its not going well. We have been back to the emergency room three times in the past two weeks, mostly because of odd reactions to the medications. One night she was having such bad muscle spasms all over her body it looked like something out of a horror movie. Another night I stayed up for hours helping her wash her legs and arms because it helped take away the bugs on the skin feeling. I do not know how to do this. I am trying to tell her it is okay and that we just need to get the medicines balanced… of course her psych doctor has yet to call me back. She had to leave the tech academy she worked so hard to get into and watches her twin sister go there and flourish. Some days she seems like she might be doing better and then other days she just looks so lost and so sad…I have tried telling her that this is a legitimate medical issue that she cannot help but she still does not want anyone (even family) to know that she is diagnosed as schizophrenic. How did you all get through it in the beginning? I am so scared that she hid this so well for so long… how do I know shes not hiding things now? How do you guys do it? What do you say? Does it get any easier for her or for me? I am so scared for her but at the same time I have no clue what to do to help her. I can’t fix this for her and as much as I am trying to help her accept it and learn ways to manage it… I don’t know if what I am doing is right or wrong. Any advice is welcomed.


#2

I hide it from friends, and coworkers etc. but my close family knows and I vent about it to them every now and then. my dad always sends me new ideas for treatment on psychosis so hes fairly pro active lately and my mom is supportive


#3

I am trying to be as supportive as I can but at the same time, I have to go against her sometimes and tell her she has to take her meds and go to therapy right now. That she has to get out of bed and dressed, even if thats all she can do today it is still an acomplishment. I just hate that no matter what I do I cannot really understand what she is dealing with. I do not think she can even tell me if I am being helpful or making things worse for her. It is so new, she is still trying to figure it out and get used to the idea that I know and she can come to me about it.


#4

well, in time maybe she will learn to share with her psychiatrist what she believes? Right now I would say at least she’s on meds. it takes a while for them to fully stabilize a schizophrenic. I hope you find a way to accept your daughter’s illness.


#5

I am more worried about her accepting it and being able to handle it and stay on the meds long enough for them to get her stable. I have tried telling her she will always be the same person to me, that having a certain diagnosis out there doesn’t change who she is and no one will see her as anything other than the same person they always have. She doesn’t see herself that way… does everyone go through something like that when they are diagnosed?


#6

When I was first diagnosed I believed I just had a nervous breakdown and that I was fine. Bad idea. I went off my meds and was fully blown delusional in terrifying beliefs for seven months afterwards. Just keep in close touch with her psychiatrist . I mean her in touch.


#7

I’m sorry you go through this. She is so young. I was in hospital for 6 months. All I remember are my delusions. I also remember shaking so bad I could hardly eat with a spoon. But the shaking stopped after a few weeks maybe. I am not sure how long it took. But it was hard. I had a nurse telling me there were no ghosts. I believed it were ghosts talking to me and poking me. Trolls biting my legs.

I decided to trust the nurse. I got better with meds and her support.

Then it took me two years after my major episode to come back to life somewhat okay. Memory loss. Short term memory out of order. A whole year is missing for me.

It can take time to get back. The important thing is to stay on meds. Meds keep sz settled. It’s still there, you are not cured, but it keeps symptoms in chains.


#8

Try to keep the lines of communication as open as you can. It won’t do for your daughter to be secretive about her symptoms. Try not to let your emotions get too involved. In Al-anon they talk about “detachment with love”. You have to understand that mental illness can be extremely exasperating and frustrating. You need to protect yourself. Finding the right med’s is often a trial and error process. Different people can react to a med. differently. The main thing you should try to do is get your daughter stable on med’s she can tolerate.


#9

I’m schizophrenic, and I had a great Mom.

I’m fond of telling moms of schizophrenics to pace themselves, that their part in this drama is a marathon not a sprint.

Incidentally, for most schizophrenics smoking pot makes things worse. I mean, just heads up with fourteen year old daughters!

If you don’t already have a file cabinet or file drawer, getting one might be a good idea at this point. Some families profit by keeping a med journal, at the very least.

Incidentally, my friend Jean was Mom of a schizophrenic who she could barely help, and so thirty years ago, I advised Jean to stop smoking. And that’s what Jean did. At any rate, her 60 year old schizophrenic daugher now has a healthy Mom still looking after her!

Jayster


#10

I’m sorry you’re going through this, but I’m surprised it only took them two weeks to come up with a diagnoses like that. I was in the hospital for 6 months before I was officially diagnosed. Well, I was 16 at the time, and clearly psychotic (talking to the voices in my head and all) and it was the late 90’, maybe doctor’s have gotten better at diagnosing it…

That being said I still try my best to hide it from people. I worked in one place for 3 years and no one knew anything. I hid it from school as well, I’ve only told one or two people in my family and my best friend knows. Other than that in personal day to day life I try to hide it. I mostly do it because of the negativity that comes with the label of Schizophrenic. I’m worried how people would look at me if they saw that I had that, and would solely judge me based on that alone, and not who I was as an individual

I still take medication regularly, I was on a very low dose for a very long time, but I had a relapse 2006 and it took almost a year to figure out where I am now with my medication regimen. I’m not working, but since I relapse when I’m under stress I don’t know if I could handle working a regular job because I know every job has a certain amount of stress to it.

I think if your daughter is more comfortable hiding it from people and she can there is no reason to come out and admit that she has the disorder. It may be more relaxing to her to not have to worry about how people view Schizophrenics and have that image stuck on her shoulders. The only time I’ve told people in person about my disorder is if I felt comfortable enough talking about it with them…otherwise I don’t see why they need to know.


#11

I went through this. If your daughter has been fighting this off for a long time in her own way and learning to deal with this and then all of a sudden it’s all gone… it can be very disorienting.

It’s confusing to try and figure out how to cope with a quiet mind again. I know docs do their best but they never seemed to consider that I coped so long with a confused and noisy head that I had no skills in coping with a quiet one.

I am med compliant finally and a combo has been found that has given me my life back. But sadly it took a long time… and it was made worst due to taking drugs and drinking. If your daughter doesn’t have to fight that as well… she’s got some luck on her side.

She has you who understands it’s an illness and not a character flaw… (there are some of us who are not so lucky) One of the guys in my Sz support group… his parents thought his Sz was from not praying enough and they didn’t encourage proper medical help in any fashion. The stories of how this man suffered…

Keeping her spirits up is important, it’s hard but it sounds like your doing your best.

As a caregiver you will need some resources for yourself. My family found support groups to be very helpful. They found better doctors for me and a place to get ideas from their support groups.

heres a place to start looking…
www.nami.org – has some good resources and support and knowledge

http://schizophrenia.com/ami/index.html — some over view

http://schizophrenia.com/diag.php# – symptoms that happen beyond the positive ones.

http://schizophrenia.com/family.php — Recovery tips

Getting to know this illness did help my family help me. The negative symptoms for me are the worst. Those are the times I feel the most useless and hopeless.

Early treatment has been shown to have the best results… good luck and I’m rooting for you.


#12

Have you told her that with treatment she can get better and live a normal life? That’s the key point.


#13

Suprisedj ,Thank you so much for all the resources and for letting me know what you went through.


#14

A few people have said they are spirited how quickly she was diagnosed. I’ve asked about it and her therapist and new psychiatrist agree with it… Everything that went on with her is by the book when I was researching schizophrenia … Everything fit but even when I was trying to do research on it it says it usually takes a bit b before the diagnosis. Should I be concerned about that? They had a diagnosis in a few days. Could she just have been that obvious and what else could it be? I’ve also has a lot of people tell me they are shocked at how quickly she got out and honestly I have wondered that myself but las Vegas has one of the worst mental health programs in the nation… She was in the ER forever before they could even get her a bed in a facility and she was having a complete psychotic break…


#15

I think people are surprised because you don’t usually get given a formal diagnosis of schizophrenia unless the symptoms persist for at least six months after first presentation. Also, that allows time to eliminate other possible causes of psychosis. They seem to have concluded her diagnosis very quickly. Anyway, I hope she starts to feel better soon. And you.


#16

Hi there. While she is a minor, take her to other doctors to rule everything out. I say that because once she is an adult, you will have some resistance. Get a complete blood count and check things like vitamin B12 (Is she vegan?) and vitamin D3 deficiencies as well as other deficiencies. Take her to an endocrinologist and check her endocrine system. Has she had any head injuries? Is she using drugs? Is she on any medication such as Adderall? Even major depression can cause psychosis. Does she have a mood component with the psychosis? These are just some things I would have checked. Could the reason that they diagnosed her quickly be that she has been hearing voices for a few years? When my daughter was first diagnosed, it was psychosis NOS, then paranoid schizophrenia, then schizo-affective disorder, then bipolar and major depression. So as you can see, the diagnosis can and will change over time and it can be different depending which doctor she is seeing at the time. Someone once reminded me it doesn’t really matter what you call it, as long as the symptoms are being treated with the medication. We don’t know why these things happen to our families but I like what Hatty said… with treatment she may live a normal life. I wish the best for you, your daughter and the rest of your family.


#17

she is lucky to have a supportive mother, good on you.

for me personally , i have been doing this a long time, you get used to the bugs, demons, voices, i see hell below my feet…blah…blah…blah…
your daughter should not be afraid of what she sees…for me it is all real…but i am not afraid.
it can be annoying, but you get used to it .
your daughter needs to take a deep breath, maybe you and your daughter can read some stories on here, so she realises that you can have a normal life.
i work
i am married
i look normal
and to be honest i function better than most muggles/normal people.
it is not the end of the world
know some one cares.
take care


#18

Thank you all for your kind words and advice. To answer some the voices had been around off and on for a few years she just hid it very well. Her psychiatrist recommended a full blood work up and everything came back good. She started acting a little depressed and anxious about 6 weeks before her break, since anxiety and depression run high in my family I assumed she unfortunately was getting it as well. I set her up with a therapist and even the therapist had no idea what was really going on. She’s never done any drugs or anything… I’m actually very lucky she is a fantastic teen so far. I know that giving up her spot in her school was really hard for her but given how much she missed while in the hospital and the stress level and the fact thatshe would still be missing school often while she gets stable… It had to be done. She is amazingly bright and had gotten accepted into an engineering program. I told her she can rreapply next year if she wants to and they said they would be happy to have her back. I know she can learn to handle this andmanage it iI just hate that as her mom I can’t do much and no matter how much I support her I will never understand exactly what it’s like for her. Right now they have her on geodon celexa and ativan but she hasn’t been able to tolerate the celexa really… Thanks again all of you for the advice and for sharing your stories. :smile:


#19

Justagirl,

You are doing a fantastic job of supporting her, she is very fortunate to have such as great support system. I know it doesn’t feel like it now, because you can’t “fix” this, but everything you are doing matters, it matters very much and in the long run it will make a world of difference!!! Everything you’ve described that you are doing sounds as perfect as you could possibly do it. You will have to nudge her to do a lot of things she doesn’t want to do that are good for her-but this is not a new thing for a good parent-just new circumstances for doing it. She needs to know you still love her, that she is still the same person with a new set of challenges to overcome, and you know she can do it. She can still do what she wants to do in life-she will just have to take care of herself in some very specific ways in order to do it. That includes, among many other things-finding the right med regimen and staying on it. You’re doing great mom!

Your situation sounds a lot like the situation with my daughter. When symptoms come out of nowhere it is called an acute onset. Acute onset is actually a predictor of a better long term-outcome (although everyone is different). My daughter’s onset was acute-literally it seem like one week she was totally fine and the next thing we knew she was psychotic. It started with some isolation, irritability, major problems with memory (this was the first indicator that something was really not right because other things we could calk up to normal teenage behaviors). Even her paranoia and delusions were close enough to reality that we didn’t recognize them as such at first. For example, that her friends were talking about her or were mad at her and wouldn’t say why when she confronted them.

To be perfectly frank, it’s possible your daughter had voices for years already, and it’s also possible she really hasn’t. When someone is paranoid and delusional it’s really hard to know what is real and what is not real. Many with sz are extremely suggestible, and if she is asked certain questions during psych evals, she may answer questions the way she thinks she is supposed to, and then immediately comes to believe it. I saw my daughter do this all the time-it’s kind of like the sz brain says “If they are asking me this it must be true.”

My daughter is also highly intelligent and was an honor roll student on the fast track for college. She is now working on her GED. Things that used to be very easy for her are now very hard. Again everyone is different, but please be aware of the fact that healing is a process that might take a great deal of time before she is at the same place (or close to it) as when she got sick. It can’t be rushed. She may very possibly never be the same again. Only time will tell, and the only way to see what her limitation are going to be are to push her past what they are now, and make failures as safe as possible. With healing you may take two steps forward and one step back-but this is not a failure-it is a success, and it’s how this works.

You will have to learn her symptoms, because she WILL hide them, you may get hypervigilant, but trust your gut-it’s all you can do, and try to be neutral as possible about her symptoms so she will feel more comfortable sharing.

Many things about this do get easier with the proper treatment-they really do. My daughter is in a completely different place than she was a year ago-in a GOOD way. When I compare then and now-and thing about if she continues to progress at this rate with more treatment and life experience where she will be in a couple more years I’m very hopeful for her future.

My only other advise (because you’ve gotten fabulous advise)is directed at you-please practice self care!!! What you are doing to support your daughter is extremely difficult and stressful, to take the best care of her means you need to take care of yourself too.

I am so sorry you both are going through this! Please let me know if there is anything I can do to help.


#20

the way i tried to deal with it at first was to pretend like nothing was happening but that didn’t go well as i kept it to myself and it just got worse, maybe if i had someone to talk to in the early stages it would not have been as bad but i ended up i couldn’t take any more and had a breakdown.