My daughter has schizophrenia.....My heart is broken

1/25/09 9:29pm

You are a very caring mother to let your daughter live with you when she is not stable. I moved in with my parents about 2 yrs after I was diagnosed. I had been picked up by the police a couple of times, battled with suicide attempts and many hospital stays. I found out later that they were afraid I might get up in the middle of the night and kill them. Yet they offered me their home unconditionally.

There is hope for your daughter. But it might take time. Here 12 years later I have just this year really turned the corner to where I would consider myself greatly recovered. Sure there are still times when I get off the meds and regret it. I cannot work, but I am doing volunteer work. My father died 4 years ago and my mother is 81 and small and frail, so I am her main support as far as driving and housework are concerned. And she is my main support as far as getting true love. We have a lot of good times together now. I hope the same will some day be true of your daughter and you. I think God worked things out so we could be there for each other.

Carolyn

robinmorgan12

1/26/09 11:21am

Thank You for sharing.....

I do truly love my daughter Erica...always have, she is my whole being.

Icherish both my daughters....That's what mom's do.

This relapse though...She turned mean. This was her first major relapse....The things she said to me were really cruel...( "Maybe you should get murdered so I don't have to look at your face anymore").......That really made me take a step back and later she didn't remember saying those words.

I need a support group to learn how to react. Do I stay sympathetic and kind.....Or do I keep her in reality even if she wants to resist.........that is what I need to learn.

What worked best for you, may I ask?

Donna-1

1/26/09 4:26pm

My parents took my acting out only so long, then they said there was nothing more they could do. But I was really not just trying to get attention, but to say I needed help. I didn't know how to ask for it with words. But they still let me live with them. And they treated me kindly and left me alone to do whatever I thought was best. I decided once I wanted to go to the State hospital for long term care -- that was what two psychiatrists suggested to my parents. Fortunately, that fell through and I found a counselor who finally made sense to me. There were small struggles, but not major battles after that. Is Erica seeing a therapist? Both of you would probably benefit from therapy -- individual for her and group for you.

Best wishes.

Carolyn

robinmorgan12

1/27/09 9:16pm

Thank you for sharing your story. I truly respect you for your kind words. Erica's dad and I are waiting for her right now, to gather things up. She is going to go to the hospital. We have a good facility here...she needs to get her meds back in her system.

I am going to tell her about this website for when she gets better. She has to start opening her yes to her illness...She is in denial. If she can come to terms with it.....and learn to accept it...and possibly share thoughts with others...it will be a big step. She has isolated herself for years now.

Good for you and keep the good attitude,,,,,,,,,

Catherine S

1/ 1/10 2:12pm

I stumbled on this web page in an effort to find respite care for my situation. I am a full time at home caregiver for my son who is 25 and has disorganized schizophrenia. He is much better than he was when he was first diagnosed 4 years ago. We also went through suicide attempts and a lot of very bizarre behaviors that involved 911 a lot. Now he takes Zoloft and Clozaril primarily and he no longer thinks of suicide and I can understand him when he talks which is a huge blessing in itself. I have read a lot on schizophrenia and I understand that some of the worst symptoms tend to decrease after the age of 25 in some people (I guess there are always exceptions) But the symptoms that can worsen are lethargy and poor hygiene and being more reclusive. I see this in my son now. He believes that when he brushes he teeth the cleanliness lasts several days and if he cannot smell his own body odor he will insist he is perfectly clean and nothing will make him shower. He also seems to be governed by "feelings" for example a feeling of being extremely full in his stomach....like you would be if you at three or four helpings of food. He wants that feeling all of the time and even though I try to moderate food and choose not to buy many things to keep him from this obsession he has gained 120 pounds in the past four years and it isn't improving. His doctor says...(to me) do you want your son sane or slim? I didn't believe that to be the question and why should that half to be the choice? Anyway, I am rambling, I guess I wanted to send out a sympathetic ear to the lady that wrote about her daughter, and say I do understand....I also was wondering if anyone knew of a summer camp or respite retreat that would be medically monitored and supervised so that someone like my son could go there (without me) and actually have a really great and safe time for however long it would run and I could have a break also. I still research but I haven't found anything yet. Anyway...Best wishes to all for a good new year....and in case I don't check back here soon my email is soulfulnblue@aol.com Thanks, Catherine S.

Donna-1

1/ 1/10 4:52pm

I was diagnosed with schizophrenia at age 37, although I had been having symptoms of that and major depression for years. I understand about the hygiene problems -- I am 14 years into my diagnosis of sz and still rarely brush my teeth. It is gross, yes, but it seems like such an imposition to brush my teeth when I am already saddled by the imposition of taking medication and suffering through mental illness. My dentist gave me a fluoride rinse I can use every day and it is easier for me to simply rinse rather than brush. I am trying to improve my dental care, though.

You might look into moving your son into a group home where medications will be doled out and someone keeps an eye on him. My mom fears that I won't take good care of myself after she is gone, so last April I moved into my own apartment. (I don't work but have a small pension and Social Security Disability payments which are enough to cover the bills if I'm careful.) This is the third time I have tried living independently. The first 2 times didn't work because I wouldn't take the meds as prescribed. I still have trouble with that but am improving. And overall, I am so much better than the first 9 years. Now things are smoothing out and I am having few positive and negative symptoms. And the depression is gone. I like to be by myself and can't make friends easily. I have hurt people's feelings because I won't answer the phone or return their calls. But I can only do what I can do.

Christine Bruni is one of the experts at this site. She lived a group home for a while, I believe. Maybe she can give you some insight.

Donna-1

1/ 1/10 4:52pm

I was diagnosed with schizophrenia at age 37, although I had been having symptoms of that and major depression for years. I understand about the hygiene problems -- I am 14 years into my diagnosis of sz and still rarely brush my teeth. It is gross, yes, but it seems like such an imposition to brush my teeth when I am already saddled by the imposition of taking medication and suffering through mental illness. My dentist gave me a fluoride rinse I can use every day and it is easier for me to simply rinse rather than brush. I am trying to improve my dental care, though.

You might look into moving your son into a group home where medications will be doled out and someone keeps an eye on him. My mom fears that I won't take good care of myself after she is gone, so last April I moved into my own apartment. (I don't work but have a small pension and Social Security Disability payments which are enough to cover the bills if I'm careful.) This is the third time I have tried living independently. The first 2 times didn't work because I wouldn't take the meds as prescribed. I still have trouble with that but am improving. And overall, I am so much better than the first 9 years. Now things are smoothing out and I am having few positive and negative symptoms. And the depression is gone. I like to be by myself and can't make friends easily. I have hurt people's feelings because I won't answer the phone or return their calls. But I can only do what I can do.

Christine Bruni is one of the experts at this site. She lived a group home for a while, I believe. Maybe she can give you some insight.

Catherine S

1/ 1/10 7:03pm

Thank you so much for responding. I appreciate it. My son has lived on his own, and in a group home before. When ever he is on his own he always ends up homeless and victimized by people that prey on his weaknesses, he is a kind hearted person and would literally give the shirt off of his back to anyone. The group home situation was bad because even though it said there was trained personal available 24 hours a day, that was not so, and my son was attacked by another resident who had violent episodes and he was molested while he slept by a man over twice his age, I wouldn't have known if I could truly believe it given his tendency toward delusions but I witnessed the behaviors in the other residents when I visited, and during this time my son almost successfully killed himself by taking apart a safety razor and cutting his wrists, so I am resigned that he and I are room mates for life and the best I can hope for is a bi-level house or a duplex of some sort where we can have more originality and privacy that our apartment situation doesn't always allow for. We are looking into a house this coming year or next depending on money and what is available. He and I get along pretty well and I am profoundly fortunate that my son is a very medicine compliant patient and although he has to be reminded to take it, he does so willingly because in his words " His drugs are a miracle because they kill the bad voices" ...I am so grateful he believes that the meds are best for him. As for respite, I just like quality time apart as much as quality time together and I think each of us grow a bit more when we separate for a little while....He is active in AA but that is about it for his social life....and being that he is 25 I would like to hope he could have other enjoyable activities he could do. Thanks again for writing, I wish you the very best!! :)

maria pinaud

5/18/11 9:18pm

Hi My daugther is 33 and was diagnosed with schizoprenia when she was 18.

I was totally devasteted with the news about her illness.

For all these years I have tried my best to help my daughter who I love dearly, but unfortunately everything that I have tried did not work.

She lived with me until the age of 31 when she got pregnant and went to live with her boyfriend which didn't work.

Throughout these years she was hospitalized more than 20 times, and no matter what I do to help her she doesn't really understand.

Today, I am adopting her 2 years old son, and she is not living with us anymore. She is in a facility for retired and people with problems.

It is pratically impossible to have my daughter under the same roof, and I feel very bad every time I go to visit her.

I love my daughter but I just cannot deal with it anymore.

Very sad.

Catherine

5/21/11 12:35am

having a son with schizophrenia and being his primary caretaker for the past 7 years, I can say that when my son turned mean at times I had to ignore it because some medicines for example Abilify (for my son) made him somewhat combative and very argumentative. As for "reality" I have to say I learned the hard way there is no forcing them to be in reality, you may win the argument but truly you haven't changed their perception of what ever is going on. Example" For the first two years after his diagnosis my son insisted on every single window and blind being shut tightly at all times because he said, President Bush was monitoring us and he had electrical waves that could come in our windows, well, I tried joking it away and he took huge offense to that, I tried asking him questions like how do you know this? that just invited him deeper into the delusion, so eventually I cut my losses and decided to respect his fears so long as they didn't put anyone in danger, I found if I said something like, I understand that things like that could make you uncomfortable but you are safe here with me, I found if I let him the close the windows for awhile and maybe gave him a hug or suggested he help me with something (as a diversion) eventually I could open the windows and for a time he would move on, maybe forgetting for awhile, It took his medicine regiments several years before these delusions finally went away, today he doesn't have them anymore and he seems to understand, now, that they weren't real. Try not to be too hard on yourself because if you are the primary caretaker you have to come from a place of peace and calm because inside our childs minds there is no peace and calm. They can draw from us when they are more lucid. My advice is to join up with The NAMI organization, most states have there own branch. It stands for National Alliance for the Mentally Ill and they are great. I took a 12 week course called Family to Family which was held every wednesday for 2 hours and we learned everything about mental illness and how to cope, and it taught me so much. Also if you are low income like I was. I got a scholarship from them to atke away the cost of the program and it was free for me.

I wish you and your family the very best. Good luck!

Here is a link to find NAMI near you http://www.nami.org

Catherine

Ashley Smith

1/26/09 12:20pm

Hello Robin,

Having a member of the family with schizophrenia is an emotional rollercoaster, I know because I have schizophrenia and my mother experienced a lot with me. I told her she took my father away from me and I never want to see her again.

At first I did not want to take my medication because I did not believe I was sick, and when I did take the medicine it made me experience bad side effects such as restless legs. Now I take my medication out of fear. Fear of a relapse, fear of losing my mind and not being able to focus, and fear of going back to the hospital or jail. I was diagnosed with paranoid schizophrenia in 2007, at the age of 20. Now I am recovering with the help of medicine (Abilify), therapy, and support.

I am glad that your daughter is living with you, where she is safe and will enable you to monitor symptoms to share with health professionals. Schizophrenia Connection is a great place to get advice, share experiences, and to get support. Welcome!

I hope the support group works out for you, in addition to that visit my blog for more information on my experience with schizophrenia and other interesting reads at http://overcomingschizophrenia.blogspot.com

Christina Bruni, Health Guide

1/27/09 7:07am

Dear RobinMorgan,

My heart goes out to you in your time of need.

I'm glad you realize this isn't your daughter, it's the illness talking.

Anosognosia, the lack of awareness that one has an illness, affects up to 50 percent of the people diagnosed with SZ, which could account for why she believes her delusions are real and can't be convinced otherwise.

The delusions and paranoia definitely don't make sense, as you well know, yet she is gripped by them. I suggest you read Xavier Amador's book, I Am Not Sick, I Don't Need Help to find out how to work with your daughter if she has anosognosia, which is a symptom of the SZ. Particularly since you said she doesn't always take her meds. If you didn't think you were sick, you wouldn't take your meds either.

The main thing is that your daughter needs to stay in treatment, take the medication, and learn to cope with the symptoms and manage her condition.

I'm concerned that really she should be in a day program and not living at home doing nothing all day. It's also my contention [and I've posted SharePosts here about this very topic] that adult children diagnosed with SZ are better suited to living in a residence or supported living or a halfway house, rather than living at home. I do not recommend living at home long-term for any adult with SZ. This same advice was given to my mother when she began attending the NAMI support group when I got sick. I lived in a residence for three years before living on my own.

For now, I suggest you keep attending the support group and read the Xavier Amador book. Also, subscribe to SZ magazine, that would help give you the perspective of caregivers who are dealing with their loved ones' illnesses, as well as insight from people diagnosed with SZ.

It truly is one day at a time and although that sounds like a cliche, keep the faith. Never give up the hope that your daughter can get better. Be realistic about what you can and can't do as a caregiver. If you need to step aside, and get her into a residence or halfway house or other living arrangement, that's OK, too. Research the good ones.

What you could also do is write SharePosts again as you feel the need to. We are a welcoming community and will support you through the ups and downs.

By the way, you're #19 of the people I've recommended the Xavier Amador book to. I'm keeping a running ticker of how many times I tell people to read that book. He's helped tens of thousands of family members figure out how to get their loved ones to stay in treatment and on meds.

I wish you comfort now.

Regards,

Christina

robinmorgan12

1/27/09 9:21pm

Thank You so very much,,,,,

I will read the book you suggest. We are leaving now for the hospital. Her dad and I talked with her and she is willing to go in...She needs to get the meds back in her system....

Pat

1/ 6/11 5:25pm

My 34 year old daughter was diagnosed with SZ in 1996 (dual diagnosis SZ and drugs). She has not taken any drugs or alchohol in over 12 years. My daughter has a major problem with keeping her home clean. She lives on her own in HUD housing and I'm very concerned that they will kick her out because her place is so filthy. She will leave cat poop on the floor, spill an entire bowl of cereal on the floor and only clean up half of it. There's mold in the shower, toilet, etc. I used to go and help her clean BEFORE her inspections but I was diagnosed with arthritis and can no long get down on my knees to scrub the floors; besides I want her to be more responsible. She doesn't seem to "get" how important it is to keep her place clean and that she could be kicked out. She is terrified of going into a home. She has never had a problem with taking her meds and over the years and she no longer has problems with hallucinations, delusions or suicidal thoughts. I'm not sure if the keeping her place clean has to do with SZ or the 'former drug user' part; or both. Does anyone know? Thank you for your advice. Pat

Christina Bruni, Health Guide

1/18/11 2:30pm

This is going to sound interesting however I wonder if some kind of reward system can be put in place every time she cleans up after herself or cleans the apartment. She does not want to go into a home so perhaps making it clear that if she fails the inspection: she will go into a home, would that help her change her ways?

One other thing: does she has artwork on the walls or can a can of colorful paint like blue or green or some color she loves be painted on the walls? This might give her pride in her apartment if it is pleasant to live in and doesn't have drab white walls. I know this sounds like an odd suggestion yet I was able to paint my living room and bedroom walls when I moved into my apartment two years ago.

The way to go I feel is positive reinforcement, not negative reinforcement. So praise her for every effort she makes to keep a clean house. Underscore to her that if her house is clean she'll be able to live in it in the future.

Regards,

Christina

Pat

1/18/11 3:24pm

Hi Christina. Thank you so much for responding to my inquiry. I liked many of your ideas : ) and believe me I have tried pretty much everything to get my daughter to keep her place clean. I am a positive person by nature. When I do good things for my daughter she seems to think that she is "owed" these things. It seems to make her lazier. My family and I all feel used and abused by her. She looks at herself as a victim and that she has this horrible illness that makes her not worthy ... even though I tell her that she is very worthy of having all the best and good things in life.

I have also explained to her that if she doesn't keep her place clean that she will have to go to a home, if there's even one available, and if not, she would be homeless. She still does nothing but stay home, watch TV, smoke all day and spends her money on other things than food and medication. She is high functioning so this doesn't make sense to me that she does nothing. It has been suggested, more than once, that I tell her that I can no longer spend time with her unless she gets things together. Not sure if this would work or not.

I'm thinking her problems are due more to having an addict problem rather than a problem due to SZ. What do you think?

Warm regards, Pat

Christina Bruni, Health Guide

1/18/11 3:49pm

I see you are in great distress about your daughter even now.

It strikes me she might have some of the negative symptoms of SZ like a lack of motivation to do things and no will to do things. Or might be depressed in addition to having the SZ.

At this point we can't quibble over which problem is causing the beahavior the goal is to find a solution. And right now she might be able to function on her habit of watching TV and living semi-independently only in the future it might be different. And I doubt she would be open to attending a day program where there would be therapy and support and goal-setting groups every day with other people who have MIs though that is something I did when I first was diagnosed.

I see what you're saying that she feels entitled to your help, the more you try to help her out. I wonder if letting her fend for herself and take care of herself might be an option. She'll quickly realize she has to do things on her own. And then she might truly become independent.

Did I mention NAMI? Call (800) 950-NAMI to find the name and number of the local chapter that hosts a family support group you can go to in the U.S. to get suggestions from family members who have been in your shoes.

Regards,

Christina

Pat

1/18/11 4:08pm

Hi Christina ... yes, my daughter also has depression. It's been a few years since I've gone to a support group meeting. Perhaps that's what I should do.

Thank you so much for your time.

Warm regards, Pat

a211423

1/27/09 10:46pm

My heart goes out to you as a mother of a child with sz also. You are correct in saying to yourself this is the illness, not my child. I am still saying this 10 years since my son was diagnosed. We know in our mind that its not really them, but in our heart we still hurt. My son has said and done things to everyone in the family, and I won't say it gets any easier to accept because it doesn't. The difference is learning techniques to overcome their behaviors. During one of my son's hospital stays, we worked with the treatment team, and decided that one of the most important things to my son were the visits he got from me and his father. We are divorced, so he saw us usually on different occassions. When he was starting some untoward behavior, he was told he would not have a visit that week from either of us. He immediately, stopped the behavior. My son is living with me now, and I have had to initiate something like this, by telling him I will not have any interactions with him if he continues the behavior. I don't know if it will work for the long term, but I am trying to do this in a non-confrontational manner. Laying out the guidelines for his behavior with the expectation that he cares enough to abide by them. There should be rewards as well, not just consequences. I try and be as generous with rewards as possible when he does things right. Your daughter is a fortunate girl to have you to help her. For us as parents, the rewards are few and far between, but they surely are there. We just have to stay positive and never give up. Writing about what is going on with you, and hearing from other parents really helps a lot, so keep posting here, and let us know how you and your daughter are doing.

robinmorgan12

1/28/09 12:34pm

Thank you for your response. I truly thank all of you. My co-workers are also very supportive.

Erica is in a good facilty now. I told my co-workers I sorta feel like she is a summer camp...Another words, I need to rest my mind.

This time will give me a good oppurtunity to read that book and continue on with this website. ...and look for ways to get the help she needs......

davida

1/29/09 4:11pm

My son is 22 and was diagnosed last year although he was having symtoms as young as 15. He was in the hospital last year for 3 weeks and put on 600mg of saraquil daily. He was doing much better but shortly after leaving the hospital he stop taking his meds and is now not doing well, drinking and taking drugs. He has convinced himself he is not sick...how do I get him to stay on the meds? I worry constantly about what will happen next.

robinmorgan12

1/29/09 8:35pm

I know what you are going through.

My solace is this website and a support group that I will be attending on Monday. I need support ...I can't do it on my own anymore. I can't figure out my daughter. She stopped taking her meds and lost touch with reality.

I went to see my daughter at the hospital yesterday. She was poised, calm, intelligent and highly aware of everything....a very pleasant visit. I thought "Wow, she is doing so good".

Well.... I saw her again today and the mood was quite different ..... "Thanks for buying me some socks. Now you can leave ...and don't come back here anymore till you bring me home .......and I don't want to see your face....and these workers are scum and they talk about me".

Now yesterday everyone was sweet to her and the counselors talked to her. She was pleased to talk about her boyfriend Brandon (who is not real, she has talked to him for 8 years in her head). She had attention. Today, no attention...just time to think...and that is not good.

**********************

Maybe your son will need to go back to the hospital.

Get support and keep trying....and try to get people involved.

robinmorgan12

2/ 4/09 5:09pm

Erica has been in the hospital now for a week. Today on the phone she sounds happy....yesterday in person, she was aggressive and confused, and I cried on my drive home.

Her counselor states that a group home may be the best place for her. After doing research on this wonderful website....I too agree. If I take her home, there is no structure...no one to talk too all day....no one to make sure her meds are being taken. I would be just TAKING care of her and babying her.....like I always have. She demands that out of me, but then criticizes me for being controlling and bossy.

I read a letter that was posted on a website. The author was Janet Jordan. She wrote of what it feels like to have paranoid schizophrenia....how difficult the day to day is...and how challenging it is to hear a voice that no one else can hear.

I've learned a lot this week.

gracemelinda

2/ 5/09 7:54pm

I am looking at this site after looking for group homes for my schizophrenic, 30 yr old daughter that they want to release from the crisis unit where she's been the past 3 months. so much to say, i feel like bringing her home because she is my kid,my baby, the person i created and brought to earth and told I would always be there for, but she is too sick at times to even be there for herself and i've tried to handle it and after 12 years it is rough. and she was in a facility for 3 years where she was raped/assaulted and did not tell anyone and when she visited me that Christmas she finally told me and was sick and we found out she was 5 months pregnant and now I am raising the baby who is almost 4 and her Mom, my schizophrenic daughter, is acting out and pushing me around and i am having to come to tough decisions like how to let the baby have the more normal life and put her Mom in a facility/group home or ALF (assisted living facility) so i can have some of the 3 yr old's friends over to play sometimes without being afraid of the Mom/my daughter. I have to /want to adopt my granddaughter as it is obvious my daughter can never take care of her, i have permanent custody, but need to adopt to get all the full rights, it is all a huge brain drain and the emotions have been devastating, i am hoping to find a place for my daughter but am tempted to bring her home, as with her Medicaid there are few places to even find to move her to live, and the ones i have seen were dingy sad spots and she would have to share a room with a 70- yr old and it breaks my heart. i'm trying to pray and go a step at a time. ouch.

Anonymous

2/14/10 3:13am

My daughter started using drugs at 15. Over the next several years, she bore four children that she eventually lost due to her drug use. I thought that every problem she's had since she was 15 was due to drug use until last year, when she was diagnosed bi-polar/schizoprenic at the age of 39. I feel very guilty for telling her time and time again, since she was 15, that her drug use and all the bad things that have happened in her life would have never happened if it hadn't been for her drug use, now that I know that her real problem was mental illness the whole time and she just used drugs and alcohol to escape them. I wish I could turn back the clock and be smarter and know that her behavior had to be more than drugs, but she used cocaine and crank, so I thought that was the main problem and I was angry about it most of the time, even though we managed to have a fairly decent and loving relationship until just recently. She's now 40 and extremely ill. She doesn't even think I'm her mother anymore and thinks I'm the government monitoring her every move, that I'm trying to "take her down". She thinks she has microchips implanted in her legs. She now says she hates me and never wants a thing to do with me. She stopped calling me altogether and tells everyone that I am a bad person and that I've ruined her life. I know it is the illness, but it tears me apart, especially for her. I cannot stand the thought of what she must be going through. She's battling this illness without meds because she doesn't think there's anything wrong and she's now threatening to kill herself and set fire to condos and apartments, then on top of all that, as if that isn't enough to go through, she thinks that her own mother is against her. I am almost unable to bear it. I'm scared to death and I fear what will happen next. I am helpless. She won't answer my calls and I am afraid to go to her house because I'm afraid that the sight of me will cause her to get even worse since she thinks that I'm not her mother and that I'm a government agent out to destroy her. I just found the Nami group and I think it will be very helpful, but tonight I am so afraid for her safety. She is walking the streets, dark and rainy, and nobody knows where she is. She called her brother to come and get her from 711, but when he got there, she was nowhere to be found, so he returned home. I don't think I'll sleep tonight. I'm worried sick over her. I don't know how to help her. What, if anything, can I do? My heart goes out to those who suffer from mental illness and their families who, I now find, are at a loss to know what to do, especially when they want no help and won't even talk to you and think your their enemy. Is there anyone else out there whose son or daughter hates you and you have no idea why? Like I said, I know it's her illness, but I'm not understanding why her focus is on just me, when I was and still am a great and loving mother.

gracemelinda

2/14/10 1:41pm

Dear Anonymous on February 14, 2010, this is the above person who wrote a year ago, GraceMelinda:) I am sorry to hear your problems with your 39 year old daughter. I weep for you and her. Your message gave me insight I forgot to put into the mix of my own understanding of my daughter, because I keep blaming the substance abuse as part of the cause of her illness, but you say the illness was the cause of the drug use as an escape, I guess it can be both ways, hard to know.....I know the drug use pushed the envelope alot more in my daughter's case.
UPDATE TO MY YEAR AGO message in here: I have adopted my granddaughter, thanks to my Mom taking me to an attorney and my daughter agreeing it was best. WHICH HAPPENED AFTER a woman in a facility run solely for schizoaffective disordered folks asked me had we tried CLOZARIL, and I asked the Crisis Unit to PLEASE try it and finally ( after trying Geodon and Abilify, which both made her more AGGRESSIVE) the Dr. agreed to let her try Clozaril. (this came also after my message when they released her in early March a year ago, put her in a facility I found with aged folks, and she attacked the owner and was still hallucinating and hearing voices, but they said she was ready to be released, wrong !) BUT finally in April 2009 the Dr. started the Clozaril and other stuff ( Haldol ) and benztropine/cogentin to help wiht possible seizure/tremors......She has been like a whole person since 2 weeks after starting Clozaril. Then to ensure she remained stable, and because she had been in the local crisis unit for more than 3 days ( 6 months) they thought it best to put her in the State Hospital (which scared me due to olde ways of hearing about state hospitals) but she did well, showed marked and continued stability and improvement and had classes to understand she needed her meds and she evolved thru some anger at being ill and expressed her anger without violence and came more to terms with who she is and what she needs to deal with, instead of being angry she got fat and not as pretty from all the pscyh meds over the 12 years (she went up to290 pounds) and is now at 246 pounds and only needs 300 mg of Clozaril a day (takes it in 3 doses of 100 mg each because the 300 together made her ill) and also gets 200 mg of Haldol injection every 2 weeks. She is hoping to lower the dosages of both because she is saying she's beginning to feel too high from the meds when she takes them, but overall, oh she is also on cogentin/benztropine too, 1 mg with each dose of 100 mg of Clozaril..she says she is feeling more like her real self and that her mind felt frozen and numbed for years on the other meds, plus I got her on birth control lowdose to help with any moodswings now that she has her periods again and in case anything ever happened so she cannot reproduce again as that is too much for any of us to bear......that is my update for now, i am just watching and taking her to her appointments, there is a community case worker that monitors her for a year post-hospitalization, and she's nice; i still have to do alot of the real monitoring and have caught mistakes that no one else did in how the meds got mixed up by the pharmacy, but that is now worked out, unprofessional and i may report them. but overall things are smoother and we have been going thru a transition of joy and getting used to my daughter actually being Well ! and Functional ! and enjoying her daughter / my granddaughter more ! My daughter was released and returned home from the state hospital in late October 2009 after being there since last June. They did a good job and were open and responsive to me and my concerns and helped alot (Northeast Florida State Hospital). I am coming out from under years of sorrow and depression for my daughter's plight and my putting my life aside to care for her, I am getting to have more of life and joy now, thank GOD !!!!! and Clozaril. I hope she can tolerate Clozaril, it is dangerous. If it ends up only being okay for a year or two (which can happen) then I fear the next period of time, but for now, I am trying to take it a day at a time.

Anonymous

2/14/10 2:31pm

Thank you so much for writing. It is wonderful that your daughter is improving and that you are able to find some joy in your life. Like you, I have put my life on hold while dealing with my daughter's drug abuse/mental illness. It's just been one chaotic event after another for 25 years. At this moment, no one knows where she is. I'm scared to think that she harmed herself last night as she was threatening to do or that harm came to her while walking the dark streets last night. I so wish that my daughter would agree to get help and try medication, but she absolutely refuses because she doesn't think that anything is wrong with her. It's so frustrating. You're right...it is impossible to know exactly what caused her mental illness. I'll never know for sure. Even the mental health experts can't say for sure. All I know is she's very sick and I guess it doesn't matter now what caused it. I can't help but feel that all the drugs she's taken has had to have caused great harm to her brain or at least, caused a dorment or very mild mental illness to surface and continually progress into what it is today. My daughter's father (who I divorced 37 years ago) has a mental disorder, as does his sister. My daughter's cousin (on her dad's side of the family) also had mental illness and she committed suicide on December 31st at the age of 36. Ever since the suicide of her cousin (jumping in front of an Amtrak train), my daughter has been continually stuck in this psychotic stage and isn't mellowing out, like she usually does. I feel grateful for this website because writing about our experiences lessons my anxiety knowing that there are other mothers out there who are going through exactly the same thing. It's a club we never wanted to join, right? I hope you continue to get some enjoyment out of life and I can't thank you enough for writing. Take care of yourself.

GraceMelinda

2/14/10 11:29pm

Hi, I am sorry for the stress you are going through, if I had the guts I'd go get a massage at one of the local spas for stress relief:) you could try that too:)

Have you considered/demanded from the Police that they do a "wellness check" on your daughter? Here in Florida we can request help from the police by calling and saying we are concerned about a person and ask them to go to their home and do a wellness check; once I had to call them to come do a wellness check here to see if my daughter was okay here at my own home, because she was nutty and saying that I was "Edith" and Edith was part of the mafia and Edith had to die. And I told her I was NOT Edith and I was not going to die, I was her Mother,etc etc. The Police came and heard how outrageous she was and then helped take her to the hospital. That was several years ago.

I have another daughter who had problems with her boyfriend and once called me while they were fighting and she wouldn't call the police for help so again I called the Police and told them I feared for her well being and life after hearing the fighting over the phone and they went to her house and did a "wellness check" on her too.

Try that, call the police and ask them to check on her.

Who can sleep well when you are so worried about your daughter ? It must be horrible, I am sorry for you all. I used to be afraid to sleep because my daughter was so scary and talking to so many voices in her head and acting weird etc......she walked away from my home before with only two strips of cloth tied around her body, she was way out. It has taken years to get to this point of wellness and she still says at times she doesn't need meds and I say I understand and don't want them either (for her) but then I play videoclips of her acting weird and show her things she wrote and she knows she can't deny she needs the help and meds.

I aged alot from the worry and stress. Try to love yourself somehow thru all this, I hope you have a partner, I don't and don't see how I could in this kind of life situation.

My spirit is rejuvenating now that things are settling down for us with her recovery.

Deep down I have a seed of realizing and concern her illness might strike again or rear its ugly head and things could get bad again, but I pray and just try and enjoy what is working as I already endured enough of the bad times so need to let the good times fill me while they exist.

Did your daughter's cousin just commit suicide this past December 2009? That could traumatize her to think about that, I wish she could be found and go talk to a therapist, my daughter is just able to start talking about things that traumatized and affected her and where some of her thoughts and problems come from that pushed her over the edge or contributed to parts of her illness, though like you we'll never know what came first or why....sensitivity to emotions can toss any of us sideways and I am just glad I haven't cracked like she did, it is a wonder more people don't lose their minds with all the stress and situations that can push us too far. This is rambly, it is late and we just spent Valentine's with my 88 year old mother and rejoiced we were all together in a positive happy way after so much heartache.

I wish you the same joy and turn around for your daughter coming to realize she needs help. I cannot imagine the 4 children and their lives and possibly having illnesses themselves. That is what I am aware of for my daughter's child, my granddaughter I adopted, that she comes from two schizophrenic parents and her odds of getting mentally ill or being ill is therefore increased, but she is a gem and smart and loving and one of the best people I ever met, so I'm thrilled to have such a sweet granddaughter and that makes a big difference to us all.

God bless you and I pray for answers and the path to be found that helps you and your daughter find better ground in your circumstances so she will pursue help and healing. God bless the children, too. Lovingly prayed, GraceMelinda

Anonymous

2/15/10 1:30pm

Hi GraceMelinda,

I can't thank you enough for your writings as it really feels supportive. The good news is that my daughter has been found, at least she was OK last night. The bad news is that she still thinks I'm a government agent out to destroy her life and that I'm not her mother. I was about to call the police yesterday to ask if they would do a wellness check when she finally turned up. Once before, I had two mental health professionals go to her apartment because the night before she threatened to jump off a three story deck. The mental health professionals said that when they got to my daughter's apartment, she was psycho talking, but because she didn't threaten her or anyone else's lives at that visit, they could not take her anywhere for help. That floored me and that's when I began to feel completely helpless. Yes, my daughter's cousin killed herself just this last Dec 31st and my daughter has not been able to "come back to earth" since. My daughter has, on many occasions, walked the streets at night bare footed. It feels like I've lived a nightmare since she was 15 years old and talk about aging! I know that I look and feel 20 years older than I am. It has taken a huge toll on me and now, now that she believes that I'm not even her mother anymore and is threatening suicide, it's almost more than I can even bear. I, too, took care of my first born grandson for a year because my daughter was too messed up to do it. His father eventually got custody and has raised him. My daughter went on to have three more children, the next two taken by their grandmother on the father's side of the family and the fourth child was taken by the state and he has been adopted and I miss him so much. It's really been a nightmare. I worry, too, that one or more of my daughter's children (my grandchildren) will also inherit this mental illness. So far, I havn't see any telltale signs of it in the three that I see, but I find myself looking for signs. Today, now that I know that my daughter is alive still, I woke up this morning and decided that I'm going to try to do one thing that will bring me some peace and relaxation, but it isn't working so far. I can't seem to get her off my mind and I'm scared just thinking about what she'll do next. I know that you know the feeling and I will keep you and your daughter in my prayers as well. I do have a man in my life and he has been as supportive as he possibly can be. We've been together for 25 years so he has seen the turmoil the whole time. Please know that I know exactly what you're going through and I wish you peace and continued improvement in your daughter. From one mother to another, keep the faith and hope and take advantage of the less chaotic days and find some enjoyment. I will try to do the same. Bless you.

Robbin

6/27/10 3:36am

She was diagnosed at the age of 19 while in tech school in the U.S. Airforce. It has been a nightmare ever since. I have tried to help her as much as I could, but it has taken its toll on me. My heart is broken to depths I cannot not even explain. She is truly suffering and healthcare is a joke. It seems the doctors have no idea what to do with these folks other than pass it all on to the family. They are just as much in the dark as I am. They just throw every medication to the patient and hope they take it. I also notice they don't follow up with their patients to check on the meds, how they are working, or if their patient is toxic. They even threw sleeping pills at my daughter which was a big no no. She doesn't remember what she takes or how much. Now I have to stay with her fulltime. I have moved her out of four apartments so far. My heart goes out to you, and I wish you all the strength and courage for you and your daughter.

Marianne

11/13/10 10:45am

Hello everyone!

I am so glad that I have found this site. I am currently dealing with my daughter who is 22 and has schizoaffective disorder. She has lived with me for the last five years. She ran off when she was 17 and went across the state with a man who abused her. She has been in and out of hospitals. Seven times it was voluntary. Six of those times, it was in a private mental health hospital. Just recently, my son, her older brother, signed a petition to a judge to have her picked up by a sheriff. They put her in the state hospital for 20 hours and released her. She is not violent, but she is delusional. She has a history of hearing voices and visual hallucinations. She says that she is not hearing voices or seeing things, but her language has become very ugly. Her older brother and I wanted her to be kept in a hospital for awhile because she told me that her dad died. She even told us the day and the time of the funeral. We went with her out of state to this onexistent funeral for a man who was not dead. She told me for the last few months how he was deteriorating after a massive heart attack. It was a believable story, since he has suffered from cancer for 14 years. She did not say a word to us the whole way over there either. She has also told me about several people in her life who were dead. She even cried about it. It turned out that they were not dead. When I asked her why she told me that her dad was dead, she said that she lied. I have not allowed her to drink alcohol or stay out all night long when she lived with me. Four weeks ago, she jumped out of my moving car when I tried to take her to the hospital. I called the police who took her whereever she wanted to go. I knew where she would go, so I presently know where she is.I took her to the psychistrist.She dyed her blonde hair black and was dressed very nasty according to my standards. I am a Christian. I could not bear to see her that way.The doctor suggested that she see a therapist in her office.

I paid for it again. The guy that she is with is also a mental patient.He is on welfare and living with his male cousin. I know that he burns himself when he gets depressed.My daughter was in college, but I stopped paying after they told me that they could no longer tell me if she is attending! The same thing just happened in the doctor's office. I paid her medical bill, but I do not feel safe buying her medicine. She has a history of taking drugs before I got her back, and she is living with a mental patient. I have contact with the guy's mother who has the only phone. She does not live with them. She makes sure that she goes to her appointments. She wants to play "hands off" of this crisis. My conversation with her is straight and to the point. I am scared for my daughter since she has been losing weight when she was at home.The doctors did not know why. She told me that the guy is selling his video games so that he can buy her food. I was able to tell the psychiatrist about this before she told them not to talk to me. I was upset for the entire year and a half that she was gone last time. I do not know how much more that I can bear! I really love my daughter.

Robbin

11/13/10 3:59pm

Hello,

I am so sorry for your suffering as I have those stories to tell as well, and I can empathize with your situation. I have to say something to you; I feel compelled to share this. My daughter hit rock bottom in April, I won't go into details but I was able to put her in the hospital for two weeks. Once again that was a joke. During those two weeks when I knew where she was at; I could think of something other than her, I stumbled upon this information on the internet. "Orthomolecular How to live with Schizophrenia" Abram Hoffer M.D...I started to read this book and a light bulb went off. Everything matched my daughter, and these folks were getting better. To make a long story short, I purchased many of Dr. Hoffer's books, and I presented the info to my girl once she was out of the hospital. She said Mom I need your help I cannot manage on my own. This was a green light for me to take control of the situation with her permission. I started her on the Orthomolecular therapy, and I have seen amazing results. I also have her seeing a Orthomolecular doctor in my area. Please take a look at this, and give it a try. You have nothing more to lose.

A Loving Mom,

Yours truly,

Robbin

Marianne

11/13/10 8:49pm

Thanks. I will look into it. I have searced for physical reasons for her problems since her father has cancer.He has schizoaffective disorder as well. My daughter seemed to have been cured after having a kidney stone removed from her ureter tube a few months ago.Little did I know that she was secretly looking for a way to get away from me. But that is what the voices tell her to do, run from me!

Marianne

11/13/10 8:49pm

Thanks. I will look into it. I have searced for physical reasons for her problems since her father has cancer.He has schizoaffective disorder as well. My daughter seemed to have been cured after having a kidney stone removed from her ureter tube a few months ago.Little did I know that she was secretly looking for a way to get away from me. But that is what the voices tell her to do, run from me!

Mary

3/ 6/11 4:54am

Hi Robbin,

I am glad you looked into an alternative treatment such as Orthomolecular diets. I am in favor of non meds treatment for people with schizophrenia. I have a 19 y.o. daughter with sz who is living with me, and sees a meds free therapist twice a week. She behaves well, and does not get in trouble. I read www.breggin.com and I keep learning how to deal with her from Dr.Breggin's site. There are vitamins, relaxation , meditation, music, dance therapies that help the soul. I have faith that she will recover, attend school, work, marry, and have a family if she likes. I will always be there to support, encourage, and listen to her. I believe she needs the love of her family by living at home. I am not afraid of her, even if she sometimes says cruel things to me. This will pass. Nothing is permanent.

Catherine

5/19/11 10:42pm

Every person's experience with schizophrenia is unique and personal both forthe patient and their loved ones around them. I have been reading everyone's posts and I wish I could give you all a group hug. So many things you experience I have been through also. My son, now 27, starte dusing drugs probably at about age 14, doctors think it did coincide with the first time he was hearing voices. From then on I knew that something blocked him from understaning me and from me understanding him. I was a single mom and had another sane older son that had it not been for me getting him a Big Brother, he would have likely been very lonely as I was constantly chasing my ill son down to all the places he would run away to, fighting all of his friends who thought that hiding him from his Mom was funny. I took him to school and watched him walk in only to find out later he went straight to the back door and walked out. I took him to counselors, to rehab facilities and to court which in the end resulted in nothing. At 16 he went with an equally ill girl about his age to a far off very small coal town in West Virginia. They went down there with her family and he family left him with their terminally ill relative who was about 80 something and had a box full of terminally ill type meds like ocycontin and others, they left him with the idea he could care for her and his whereabouts were kept from me. I had no clue what had happened to my son or where he was or if he was alive. This was only one of so many times my son's weakness was used to victimize him. He couldn't communicate well enough to get out of the situation. It took me six months of searching with no help from the police (all they would say was he was 16 and they had no eveidence he didn't leave on his own) I knew the name of the family that took him but they would say nothing to me. So, knowing my son smoked Newport cigarettes at the time. I sent aflyer with his picture and my number to about 100+ 7-11 type stores in a tri state area, including Ohio, West Virginia and Kentucky (all on my hunch) and about 2 weeks after I sent it, it had been about 5 months and it was Christmas Eve I got a call from a store manager saying my son walked in there everyday and she would get him to call me when he came in. Late that night I got a call saying, Mom, please come and get me, their going to kill me (the voices). It took me almost 7 hours of driving to find where he was and he was walking along a dirt road when I came up behind him. He was so much worse than before, so skinny and frightened. I got him back home for Christmas, for what it was worth, the holiday wasn't much for us at that time. He had some loose ends with juvenile hall. For what it's worth I tried everything to get the family that took him prosecuted but the prosecutor insisted that because my son had dated the girl there was no case. Afterwards we tried again with the rehab. He stayed for 30 days and as soon as he got out he was back on drugs and running the streets. To make a long story a little shorter...It took almost 5 more years before he was properly diagnosed and it came when he attempted suicide and told the doctors that "they told me to do it" After a lot more termoil much to much to detail. I tried a group home for him, that claimed 24 hour monitoring, which was a lie. he again tried to kill himself and no supervision was around and luckily he survived cutting his wrists with a broken saftey razor blade. I was forced to bring him to my 1 bedroom apartment because there was no safe place for him. His reality was no reality. He was on Geodon and risperidol for a time and eventually zoloft as well which seemed to turn off his desire to harm himself, he takes that to this day. I too could not afford his expenses and mine and it was obvious that work and independent living were no going to happen any time soon, so I applied to be his legal guardian and for him to get SSI benifits. I was pushed to getting the guardinship when I found out that he had obtained a full script of vicadans and took almost all of them and was throwing up violently and going in and out of consciousness and I called the paramedics and when they got there they kept saying to my son "Do you want to go to the ER?" I yelled at them, stop asking him he is going look what he has done to himself!!" They said he was over 18 and they had to listen to him, and then my son with his eyes rolling in his head and puke all over his shirt said to them, nahhhhh, i dont wanna go, my mom dont know nothin.....where by they left ignoring my pleas and I was not strong enough to carry him or i would have taken him myself...but that incident made me realize I had to remove the legal barriers and advocate for my son when he couldnt and wouldnt. I am going to take a break now (LOL) I bet whoever is reading this is getting blurry eyed. I must have needed to tell my story because I havent mentioned any of this for along time. I am sure I will write mor elater. Suffice to say that today my son takes 150 mg clozaril 2x a day and 200 mg zoloft once a day and it's been a year since I have been on disability for my own health problems but ever since I have been home full time and he has been steady on the meds (thank God he is willingly compliant) He is as close to normal today as I could have ever hoped for. His symptoms only seem to appear when he under duress or extremely exhausted. I asked the doctor about the probabilities of him maybe working part time or living alone. He said to me, The only reason your son is doing as well as he is is because you have created a workable stress free environment for him and changing that will unravel his sense of security. In essence he said If it's not broke don't fix it and currrently my son seems the best he as ever been. The doctor thinks the best we can hope for is going from where we are now to a more comfortable 2 bedroom apartment with more space. I think I am okay with that. For the first time in years he and I can talk well together and laugh and do things together and I can sleep peacefully at night. I wish all of you to find the peace that I have found in whatever way works for you. I just reisterate something probably everyone knows when you are dealing with mental illness you have to leave all expectations at the door. Reason and logic do not apply and above all the ill person whether they can say it or not desperately needs a stronger, saner, invested loved one to take over their "reins of life" until the bulk of the storm passes or becomes less and the truth is that can take years and it has to be a labor of love, it truly does. Prayers and all good wishes to everyoine out there. Thanks for your time :)

Brian

5/29/11 11:08pm

5 days ago my life was normal, today I am beginning a new one. My daughter has not been properly diagnosed yet.....but I read every story here tonight...I have so much in common with all of you.

My daughter is 20,a true lady in every sense...and a gentle soul....never taken drugs etc. She is looking to me for help, and I am petrified that I will fail her....since then I have made a promise to God as well. I pray that I do not fail either of them! Please....pray for us.

Sincerely

Brian

Catherine

5/30/11 6:24pm

Dear Brian,

My heart and prayers go out to you and your daughter. You are going to do right by her I am sure because you love her. It does take an intense core strength spiritually speaking, to remain vigilant until you reach the success that you seek for your daughter. After about 6 very difficult years post diagnosis and more years of not knowing what was wrong with my son, I can assure you we are in a good place now. Getting there is possible, though not easy, it's worth it.

I am not an overly religious person although I respect anyone of any faith, I do believe in God and 2 things I have always believed of God is 1} God doesn't make junk when it comes to people. all people have value and worth and gifts even if they are not readily visable. 2) All things are possible with God.

Consider joining NAMI as they gave me much encouragement and direction as well as invaluable education about mental illness, they are an excellent organization http://www.nami.org

Best wishes and daily prayers always

Catherine

carmen

8/23/11 6:45pm

Hi Brian,

Please check out alternative treatment for your daughter. Doctors do not have the last word. Check Mindfreedom.org. Your daughter deserves the best.

grace

10/ 1/11 5:57am

i read ur story and my eyes got blurry for sure...im so glad for u and ur son, keep the good work and uncondional love...

grace

10/ 2/11 4:56am

we need to pray for our family and for our friends to recover and manage this disorder ..i cant believe so many of us are going thru the same issues..God help us..amen

jenn

5/27/12 3:58am

Hello to all the moms who are heartbroken....my only child, my son, was diagnosed with schizophrenia when he was 18 (back in the dark ages)...he is now 47....I remember the grief and heartache, all the years in and out of mental hospitals, assisted living, group homes,hundreds of absolutely crazy shrinks.....finally. in 2001 we found a dr. who understood that I was the only person who really knew and understood the many phases and episodes my son had gone thru. He listened to me and followed my lead in caring for my son...he allowed me to tell him which meds were working and which ones were not....it is now 2012 and my son is in the best state he has ever been in. He has lived at home with me since 2002 with only very minor episodes once in awhile. He is an absolute joy to be around and everyone loves his kindness and his wit. I am so proud of my son! I never gave up and never accepted that he could not have a normal life, and now he does! It is a long, hard, stressful journey, but you have to stay right there to support your child thru the good times and the bad...it does get easier and better as the years pass. Don't give up and don't cry...fight for your child!

My daughter has schizophrenia.....My heart is broken

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