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Any Help Or Advice Greatly Appreciated

My older sister was diagnosed 1st with Schizophrenia when she was about 20 or 21. She was hospitalized after being found by police in the middle of the night in an office where she worked at her college. She broke in after walking or either hitch hiking her way there barefoot. She believed the end of the world was occurring and she would be safe there. I’m not too complete on all the details being that I was only 12 or 13 at the time and she was staying with relatives that my immediate family has always had communication problems with. She has been an over achiever her whole life. Very popular, out going and involved with many school clubs, organizations and events in both high school and college. She wasn’t a big “party person”. What I mean by that is she wasn’t into drugs and alcohol. She was a teenager at one point and did experiment a few times with marijuana (being the worst) and drinking. But by no means was she ever “into” these things. She never took acid, mushrooms or any other type of drugs. But she was starting to have hallucinations themed mostly around god. She did take diet pills and would drink bottles of Nyquil to fall asleep at night. She was committed and treated heavily after being found by the police. She has always been book smart and very determined but not very quick or articulate. I say this because I’m not sure she was accurately describing her experiences while being treated. She said things like “ the voices in her head” but at some points I believe she was referring to her own thoughts in a confused state thinking they weren’t her own. She had central issues around the split of my father and mother (which happened a good 12 or 13 years earlier) I think as they were the ones very much involved with her therapy at that time. I remember seeing them both hold her hands as she was laying in hospital bed crying. I’ve hardly seen my parents in the same town let alone the same room. It’s very vague to me now. Like I said I was only 12 or 13 and mainly because I was stunned and shocked at how unrecognizable she was while in the hospital. I am sad to say she never really emerged as the woman she was before all of this happened.

I’m not sure how long after that she came to live with my mother and I. I don’t think she was on any medication at this point. My mother has always been an enabler and struggles her self with mental illness. Never the less that was who my sister had to relay on. If she thought the government was after her, my mother went along with it. My mother wouldn’t actually say “ yeah I know the CIA is after you”. She just didn’t do much about it. Her own mother (my grandmother) had major depression and would be hospitalized monthly with psychotic breaks. My mother was 4 or 5 fending for her self while her mother went off the deep end being that her father skip town years earlier. Maybe my mother just went into flashback mode with my sister I don’t know. The whole family believed my sister should be committed again but my mother fought everyone saying she couldn’t do that to her child. One day I smelled burning papers coming from my sisters room, the room she never left. She had been burning the evidence the CIA was after apparently. She believed we were drugging her through the vents and things got really bad when my mother bought locks for our bedroom doors and told me to hide all the knives in the house.

I was 14/15 and was running wild in the streets taking every drug I could get my hands on and had already dropped out of school. I didn’t know then that I was trying to escape the instantly in my home. My sister wasn’t the only hardship my family was dealing with at that time. There was what I could fill books with of problems happening. My mother placed me in therapy yet again after I ran away or some other cry for help I encrypted in my actions. I didn’t mean to turn this into about me but my sister’s next treatment came from my own. I’d reluctantly saw the therapist my mother sent me to. Some hours I would just sit there silent the whole time. Finally out of extreme boredom with my visits I told my therapist about my sister that lived in her bedroom and was scared to even walk up to the front door of our house. After realizing this was a major part of my rebellion my therapist arranged to come see my sister at our house. I would just like to say I thank god for this woman’s bravely. My mother told the lady it was not a good idea because she was afraid my sister would get violent. However the lady still came the next week not knowing what to expect. I don’t think anyone in my life has ever tried to help me and my family this much.

After a while my therapist convinced both my mother and sister to come see her. They didn’t have health insurance at the time. So I split my hour with them. I was extremely happy my sister was trusting someone enough to talk to and eventually agreeing to their course of medical treatment but I wasn’t comfortable nor felt the need to see my therapist any longer and gave the full hour to my family.

My sister has since been re-diagnosed with Schizoaffective disorder. She has been forced to switch her medications more times than I can count. She went on to graduate college (the 1st and only of my parents children) and started her career four years ago. She’s had ups and downs but nothing like the things I described. However we are in constant fear of when she will get sick again. She shows signs of it a lot. And lately has been very paranoid about her job thinking it is making her sick. She wants to quit this week. Our dilemma is she needs to find suitable treatment. She is now medicated but does not receive any form of therapy. If she quits her job she will be without health insurance. If she stays at her job she will no doubt worry her self into getting sick again. I need help finding resources available to low-income mental health providers or Schizoaffective disorder support group. Please contact me with any information. My mother has already called my house twice since I started writing this to see if I’ve come up with anything. My searches come up with little to nothing. Thanks In advance

 

 

 

Sagethoughts Sagethoughts 26-30, F 10 Responses May 23, 2008

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I'm sorry your sister's having trouble with her illness. But I hope she continues seeing this therapist.

I have schizoaffective disorder too. I'm on Trilafon. It works okay, but I deal with anxiety a lot. Risperdal made me manic a lot and the Seroquel made me have panic attacks- those were bad. I used to take Zyprexa, too and they made me gain a lot of weight.

I'm seeing a therapist and I have great suppport from him.

Try looking up NAMI or your family doctor might know a mental health clinic where you and your family can get more help if needed. Good luck!

Hi, I was reading your story about your sister and it sounds a lot like me. My whole life i have struggled with this illness but they just told me a chemical imbalance which later on in my life find out that it is schizo affective disorder. This whole time I felt things wrong with me not sleeping and everything like this. Moods on and off not being able to be around a lot of people all of my life, I always have. I have suffered about three relapses of becoming ill. My family probably feels this way also about me , it is really hard because for me a constant let down being the oldest and then to have everything with this illness effect me in ways i cant explain. Everything is like people are doing things , like you talk about the CIA , I have called and talked with the FBI talking about lotteries they have said i won and really thinking that they would some how get these people right then that were sending me checks in the mail, most people would throw them away and think nothing of it, but this worried me like the money was mine and i needed to find who had it. I thought i had powers to heal when people got sick , that i could heal them . I would go around and just be like a homeless person and i had an apartment and gave it away. I just didn't know what i was doing at all but running in circles , I am glad that your family supports her . In my case it was a lot harder for me because we never talked about my illness, after the doctor put me on medicine there was no more seeing the doctors after the 1st year that Me and my family found out about my illness. I would not see another doctor until i reach the age of 35. I learned that with this illness I have had to get support from doctors. and one thing that has helped is me going to school. The voices might be there but then with learning and having something to do to make you focus on other things it helps, I also read up on other websites .Schizo affective.org and also there is some topics that made me feel better as I look on this disorder as I and your sister have . Dr.Baxter also suffers from this disorder but she has become a doctor in psychology. And she is part of the Lilly reintergration , which helps with people that suffer to getting back into society , like going back to school. I am currently in school myself and studying psychology. I feel the more that i learn what might help me and work for me then it I might be able to help others that suffer like me , learning the tools that help , from the relapse breakdowns and also i find that being around other that can be understanding that don't try to overload me with problems that then it takes all the focus on what i need to do for myself to stay mentally healthy. I hope that helped a little but please write me from time to time and let me know maybe of somethings that helped your sister also maybe it will help for me also. thank you Chanel

Do you still check in on this group? How are you doing now? You are the only post that sounds so much like what is going on with my son now. Thanks for posting all of this great info.

There are a lot of resources in Southern California... I don't know about the rest of the country? Try calling large organizations NAMI NIMH are two large ones I can think of, but there are many more, they are knowledgeable about regional programs if you talk to the right people, be persistent it may take a while to find something

It has been awhile since you posted this so I hope that things are better now. I was also Dignosed with Schizoaffective at the age of 20. Before my 2 Episodes, I was also very outgoing, Popular, Friendly and never introverted. Both of my Episodes were about God. There was also a time that I thought that the world was ending. This is my take on the Illness. I am only now just 25. I have Dealt with this for 5 years now. I have only accepted the fact that I am sick just recently. It is very hard to let go of these delusions. A person that does not have this disorder could not possibly understand how these Delusions are our Reality. Everything is VERY real to us. You cannot imagine how confusing it is for us. I have been on Several Different Medications. I was Hospitalized Twice. The First time was in 2004. I was first diagnosed with Bi-Polar Disorder due to the Drugs I had been taking up to my first Episode. And how the Drug abuse began? Was with Diet Pills. These are lethal!! Most are Speed. What was she taking? I started with Diet Pills. When the Ephedra was banned from the Diet pills, My Boyfriend at the time introduced me to Adderoll. Pure Amphtamines! And that is where it began. Anyway, I will not get into the whole story. But, Adderoll would eventually land me in the Mental Institution for the first time. I was heavily medicated when I was admitted. I was given Lithium and Risperdol. I did nothing but Drool uncontrolably. I was switched to Zyprexa. Which made me very upity and the Doctor informed me I would gain alot of Weight. And that I did, in the short time that I took it. With it being only my first episode and the drugs that were involved I thought that I didnt need the medication. I just simply thought it was an overdose. Well, 9 Months later I had another Episode that lasted Months. The Delusions and Hallucinations lasted far too long and this was not Drug induced. I was Given Geodon. This was terrible. I was overly Medicated and I could not walk out of the house for a good year. I quit taking it. I was at work and I got into an argument with a girl that I worked with. I was embarressed and I just knew that my behavior was unacceptable. I went to the Emergency room and told the Doctor my situation and asked for Seroquel. Seroquel changed my life. It is the only Medication that makes me feel somewhat normal. I was stable for 2 and a half years on the Seroquel but I moved and went to Mental Health to see another doctor who recommended me try Abilify. No no no. This did not work for me. VERY tired, I lost 10 or more Ibs in less than a month because I could not keep anything down. I remember one day I could not get out of bed. Thats when I stopped taking it. It has been a couple of months now that I went without meds. I am not in the best of shape now but recently went and got my prescription for Seroquel and within 3 days I see miles of improvement. So, this is the Medication I will recommend her try. As for her Delusions, It will take years for her to convince herself that they are not real. Just give it time. With Proper medication she will do fine. As far as the work place is concerned.. I was working at Wal Mart and was convinced that they were watching me. I thought that they thought I was stealing. Yet I was Voted Twice in one year for employee of the Month. Our minds work in overdrive for some reason. I still cannot understand it. Maybe one day we will understand more. I surely hope so. I would like to hear an update about your Sister. I really hope that things are looking better. The best advice I can give is Time Heals almost everything. Give Time Time :)

Thanks for sharing your stories. I, also am dealing with my sister who has SAD and just got out of the hospital today after trying to kill herself by overdosing on insulin (she became diabetic after years of Clozaril).

My heart breaks at her agony. She felt she had no choice becasue there has been a gang trying to kill her for 10 years. She knew they were planning a slow torturous death so she just decided to do it on her terms. This is the second time in 4 months. She means business when she does it. This time she was on a ventilator.

She was ADHD as a child, physically and emotionally abused, she is a recovering addict and alcoholic (as am I) and I really believe she might have PTSD too.

She's started on serequel now but I wonder what kind of therapy is most helpful. Has anyone tried DBT ? We (including my sister) are trying to decide what is the best place to go next. Does any place really help someone to accept that they have delusions? She will not discuss it with us becasue she knows we think they are delusions - I just think if she accepted it she could be helped and be happier. How does one come to accept it - harder than with alcohol and drugs I think.

I pray for all -

may all beings be free of suffering and the causes of suffering.

You might also try NAMI, National Alliance for the Mentally Ill. I believe most chapters hold group sessions. Good luck from a guy with schizoaffective disorder.

Hi sagethoughts,.



I agree with virgvirg, your sister should be immediately started on some antipsychotic, maybe Abilifly, mine at the moment is Zyprexa, which has the ugly side effect of weight gain, otherwise OK.



I had my last paranoid episode in the summer of 2005, after being off my meds for half a year. I thought that motorist gangs and the Finnish Secret Police were both after me - together. I heard voices behind the walls of my bedroom, which threatened to kill me.



I survived by trusting a friendly couple of mine to take me to a health center and from there to a one and a half weeks commitment to mental hospital. Even when inside the hospital, for the first few days I stayed away from the windows, so that the "snipers" would not get me. That episode cost me a free trip to the States, where I would have had to act as an interpreter, but was not able to, due to my psychotic state.



I was then and am now on disability pension (since 2000) and I get compensation for my medicines, which are Efexor and Zyprexa, so I dont't have to pay high prices for them. There are bad and good days, but at least I don't have to be scared of killers nor banks any more. I also attend Twelve Step meetings regularly, as well as am a member of our Fountain House clubhouse for ex-mental patients. Life is definitely better than it was in 2005 without my medications!



Feel free to show this comment to your sister. Sister, you're not alone:-), There is life outside the rat race:-)

When in pension, one has still chance to do small jobs or

art work, or any kind of voluntary stuff one enjoys, in opposition to what one is ordered and has to do for livelihood...



Best wishes for a better end to your struggle,



jack63

It sounds as though you've been on a rollercoaster. I would advise that your sister continue with a professional psychiatrist, exercise - a lot, try Abilify a highly successful antipsychotic your psychiatrist could administer. She should be registered with the government on a disability pension this will give her the benefits she sounds as though she requires right now.

I've been down her road, and know through ten years of experience that a complete recovery is not only possible but just a matter of time. She should be able to become a well adapted happy woman! Good luck.

Thanks for your advice silvermoon. I have decided to go with her to her next apointment coming up in a week and try to get the doc to recommend someone else. Just yesterday she kinda broke up the faimly holiday screaming and cryen to me and my mother that someone is trying to kill her. What is your sister's disorder?

Sorry I don't know any info for you, my only suggestion is to Google the name of the illness and the region in which you live.



My entire life was upside down due to my sisters mental disorders as well. I hope you find treatment for her so she, and you, can live full lives.